Keep us in your prayers
Posted By: QCL
Keep us in your prayers - 10/28/04 09:45 PM
Well the "bear" is finally getting listed to receive a new liver. She is getting progressively worse. I am going to start the testing process to see if I am a good match for a living liver donation.
Keep us in your thoughts and prayers.
BTW - I'm in the hospital computer lab taking a much needed stress break and where do I come - BOL! LOL!
Posted By: Cowboys Fan
Re: Keep us in your prayers - 10/28/04 10:02 PM
I'll say a prayer for the "bear" and for you too. I sincerely hope that all goes well for your family.
Posted By: Gigi2Three
Re: Keep us in your prayers - 10/28/04 10:32 PM
Much good luck to you! Did you hear about the guy in Houston I believe it was and they wouldn't put him on the donor list so he bought billboard space telling of his need? This was a couple months ago I think...he got one...just a thought...Prayers going your way.
Posted By: Princess Leia
Re: Keep us in your prayers - 10/29/04 01:41 AM
You're still in our prayers. Give that beautiful little girl a big hug.
Posted By: CRAatBOK
Re: Keep us in your prayers - 10/29/04 03:17 AM
I'll be thinking about you. Your little bear sounds like a tough cub. Hope you are a match.
Posted By: Nanwa
Re: Keep us in your prayers - 10/29/04 01:48 PM
Prayers are being sent your way. I am glad we can help provide a stress outlet for you. I know, even tho I haven't met anyone here in person, I feel like I know you all and am very comfortable. There are so many kind people here!
Posted By: Truffle Royale
Re: Keep us in your prayers - 10/29/04 01:55 PM
Godspeed to you and your little bear. I will keep you both in my prayers.
Can we send her cards (email or regular) to cheer her day? Or is there anything else that would help cheer you both up? Maybe we could get you a map and start sending cards from all over so you could mark off where they came from. Let us know.
Posted By: hmdagal
Re: Keep us in your prayers - 10/29/04 02:10 PM
Quote:
Godspeed to you and your little bear. I will keep you both in my prayers.
Can we send her cards (email or regular) to cheer her day? Or is there anything else that would help cheer you both up? Maybe we could get you a map and start sending cards from all over so you could mark off where they came from. Let us know.
What a great idea!
Posted By: Okie Dokie
Re: Keep us in your prayers - 10/29/04 02:45 PM
Prayers are coming your way from Oklahoma.
Posted By: Retired DQ
Re: Keep us in your prayers - 10/29/04 03:06 PM
and NJ, too.
Our prayers are with you also.
Posted By: Little Sister
Re: Keep us in your prayers - 10/29/04 03:11 PM
Prayers from Iowa too!
Posted By: Angel Eyes
Re: Keep us in your prayers - 10/29/04 03:11 PM
Best of luck! We are praying for you and hope that all goes well.
Posted By: Quadspapa
Re: Keep us in your prayers - 10/29/04 03:55 PM
Prayers from Texas also being said...good luck
Posted By: ABrown
Re: Keep us in your prayers - 10/29/04 04:29 PM
More prayers from Texas headed your way - you'll be in our thoughts.
Posted By: Anonymous
Re: Keep us in your prayers - 10/29/04 04:31 PM
My fingers, toes, etc. are crossed for you and your family.
Posted By: Countess Kiwi
Re: Keep us in your prayers - 10/29/04 04:54 PM
Prayers from Idaho to your family. Give little bear a hug from all of us!
Posted By: Bengals Fan
Re: Keep us in your prayers - 10/29/04 04:59 PM
Ohio is in the fold as well... God Bless!
Posted By: RR Joker
Re: Keep us in your prayers - 10/29/04 05:01 PM
Count Georgia in as well.
Posted By: Anonymous
Re: Keep us in your prayers - 10/29/04 05:05 PM
Pennsylvania's with you too, God Bless.
Posted By: obx nut
Re: Keep us in your prayers - 10/29/04 05:10 PM
More from Ohio!
Posted By: Walleye Woman
Re: Keep us in your prayers - 10/29/04 05:32 PM
Prayers from Wyoming.
Posted By: waldensouth
Re: Keep us in your prayers - 10/29/04 06:38 PM
More prayers from Georgia!
Posted By: deppfan
Re: Keep us in your prayers - 10/29/04 06:59 PM
Tortuga is praying as well.
Posted By: QCL
Re: Keep us in your prayers - 10/29/04 08:55 PM
Quote:
Godspeed to you and your little bear. I will keep you both in my prayers.
Can we send her cards (email or regular) to cheer her day? Or is there anything else that would help cheer you both up? Maybe we could get you a map and start sending cards from all over so you could mark off where they came from. Let us know.
Thanks all. Here's how to send a card. Go to http://www.childrensmemorial.org/ecard/default.asp
Then choose a card. Her name is Natalie her room is 621. (The delivery date is the date you want the card delivered.)
Posted By: TrueBlueBanker
Re: Keep us in your prayers - 10/30/04 02:25 AM
Prayers and christian love from me and my family fron South Carolina!
Posted By: ITGuy
Re: Keep us in your prayers - 10/30/04 11:20 AM
My thoughts are with you. Best wishes!
Posted By: Brandy Osborne
Re: Keep us in your prayers - 11/01/04 08:59 PM
prayers coming from Kentucky as well.
Posted By: TTC Queen
Re: Keep us in your prayers - 11/04/04 10:28 PM
More prayers from Oklahoma.
Posted By: KSK
Re: Keep us in your prayers - 11/04/04 10:52 PM
Luv My Puppy - What's the latest? How is "bear" doing? We all want to know! Our hearts, thoughts and prayers are with you all.
Posted By: QCL
Re: Keep us in your prayers - 11/05/04 05:05 PM
For the latest go to
www.caringbridge.org/il/nataliebear <- no longer valid instead go to www.nataliebear.comShe's holding steady, but we're still in the hosptial.
Posted By: HRH Dawnie
Re: Keep us in your prayers - 11/06/04 03:49 AM
Thank you for sharing your beautiful little girl with us. She is in the prayers of Alaskans as well! Her parents are as well!!!
Posted By: HMS Pippii
Re: Keep us in your prayers - 11/06/04 11:26 PM
What a little cutie! Prayers launching from Kansas.
Posted By: Tesla
Re: Keep us in your prayers - 11/08/04 11:10 PM
My prayers are with you and your family!
Posted By: Patsy Cline
Re: Keep us in your prayers - 11/09/04 07:40 PM
You and your precious little one are in my prayers.
Posted By: QCL
Re: Keep us in your prayers - 11/23/04 04:05 PM
More prayers please. There are now some doubts about whether Pat is still going to be a donor. More testing needs to take place. I'm at a pretty low point today on this emotional roller coaster.
Posted By: Bengals Fan
Re: Keep us in your prayers - 11/23/04 04:42 PM
LMP, It's going to happen, trust in God to make things right, let him guide you, and most importantly, smile.
Thank you for sharing photo's of your beautiful little one. Prayers from California are with you. Have faith and trust in God all will be well.
Posted By: CRAatBOK
Re: Keep us in your prayers - 11/24/04 04:21 AM
LMP, you are in my thoughts. I wish I could do more to help.
Posted By: deppfan
Re: Keep us in your prayers - 11/24/04 03:22 PM
Is there any way for any of us to be tested? I would be glad to, just to see if there was a chance.
Posted By: Truffle Royale
Re: Keep us in your prayers - 11/24/04 03:26 PM
Oh, elena! What a fabulous thought!!! Count me in too, LMP.
Posted By: Anonymous
Re: Keep us in your prayers - 11/24/04 03:52 PM
I know I'm new but I came across this post and wanted to extend my prayers as well. I have a "prayer team" here at work and I will add your beautiful little one to that list.
Posted By: Okie Dokie
Re: Keep us in your prayers - 11/24/04 03:55 PM
Quote:
Oh, elena! What a fabulous thought!!! Count me in too, LMP.
Me too. I'm here if you need me.
Posted By: Princess Leia
Re: Keep us in your prayers - 11/24/04 03:59 PM
elena, what an awesome idea. LMP, let us know if this is feasible.
Posted By: QCL
Re: Keep us in your prayers - 11/24/04 04:43 PM
Elena, it is a wonderful idea and we REALLY appreciate it. Right now we have 7 or 8 people on stand by waiting to be tested. The hospital is a little blown away, they've never seen THIS kid of response. I sent out a letter to our friends and family, with directions on how to contact the hospital. (I was going to post it here, but don't have a copy of the letter at work.) I'm next to be tested, but we're still holding out hope that Pat will be a match. Natalie has to have an MRI done to look at the size of her liver compared to the size of the section from him; why they haven't done this before now is beyond me
.
Right now, if you could PRAY that'd be the best thing!
(That and sign your organ donor card and donate blood. She's received 4 different blood transfusions in the last 13 months.)
Can we donate on her behalf? I donate every 60 days and they always ask how I'd like to donate. Usually I donate to community since I don't know anyone in need of a transfusion, but I'd love to donate towards your daughter.
Posted By: Nanwa
Re: Keep us in your prayers - 11/24/04 06:44 PM
I know MOML donated regularly, and when his dad needed blood during heart surgery, he was able to get it due to MOML's donations. I don't know if that only works with family members, but I would think you could direct it wherever you want.
Posted By: HRH Dawnie
Re: Keep us in your prayers - 11/24/04 07:48 PM
Typically you can't donate blood to a specific person unless it's a family situation, and normally only if they're local. Blood does not travel well. But, as Luv stated, donate in their honor
While his little Luv might not receive your donation, someone who needs it will.
If you're not a registered donor, or if you think you are, but haven't registered within the last three or four years, re-register! The state registeries were not connected to the national registry until the last few years, and old information was not added from most states. The note on the back of your drivers license might not be enough.
And besides that...you don't have to die to donate! My dearest friend could use that one special person's bone marrow to save her life. Another person might need your particular rare blood type, or perhaps one of those spare body parts
you don't mind getting rid of. Bone marrow is one of those easy donations that a person can give and give, and save lifes, but so few people are registered! There is pain with donation, but this is a renewable resource that won't endanger your life to give. The benefits to donating are huge. You know you gave another person a chance at life! How much more can we do for people?
Run out and register, pretty please? You can see from Luv's situation how valuable it would be to save a precious life by giving
http://www.organdonor.gov/
Posted By: deppfan
Re: Keep us in your prayers - 11/24/04 09:06 PM
Quote:
Right now, if you could PRAY that'd be the best thing!
(That and sign your organ donor card and donate blood. She's received 4 different blood transfusions in the last 13 months.)
Done, and Done. Let us know if there is anything else we can do.
Posted By: QCL
Re: Keep us in your prayers - 11/24/04 09:39 PM
Thanks again. The cards and books have been beyond WONDERFUL
!!
Nanwa, we just received your cards today!!
You guys rock!!!
Posted By: Truffle Royale
Re: Keep us in your prayers - 12/01/04 02:21 AM
Any news?
Posted By: QCL
Re: Keep us in your prayers - 12/01/04 07:35 PM
Unfortunately there is nothing new to report.
The doubts about my brother are due to an artery running through the section of the liver that our daughter’s hospital wants to use. However, our surgeon still thinks that he is a good match and that we’d just use a different section (the entire left lobe). This is commonly done.
So yesterday the bear had a CAT scan. The purpose of the CAT scan was to see if she is large enough to hold this larger section.
We were told that we will have a definite answer one way or the other by tomorrow. The waiting is killing me.
Posted By: kfh
Re: Keep us in your prayers - 12/01/04 07:37 PM
We are still praying for you.
Posted By: obx nut
Re: Keep us in your prayers - 12/01/04 07:52 PM
and we're not going to stop, either!
Posted By: Nanwa
Re: Keep us in your prayers - 12/01/04 08:39 PM
We'll be hanging on for the answer too!
Posted By: QCL
Re: Keep us in your prayers - 12/02/04 02:28 PM
Well, last night we learned that Pat is NOT a match.
Our surgeon called us from his cell phone on his way home - we knew it couldn't be a good thing.
Where most people have 2 to 3 veins draining blood out of the left section of the liver, Pat has 5 to 6. Also his right drainage veins intersect and interweave with the left ones, so they would have to cut the right veins also. Both teams decided that this is too much of a risk to take.
Posted By: Bengals Fan
Re: Keep us in your prayers - 12/02/04 02:37 PM
LMP, you are still in my prayers. If God can move mountains, perhaps he can move a few veins too...
LMP, God works in mysterious ways, my prayers are with you and yours.
Posted By: QCL
Re: Keep us in your prayers - 12/02/04 03:27 PM
The hospital just called, I am next to be tested.
Posted By: Nanwa
Re: Keep us in your prayers - 12/02/04 03:33 PM
This is just a set back LMP, don't give up hope! The Lord has His methods and time table. My wishes to Pat, who I know is disappointed as well. God bless you all.
Posted By: Princess Leia
Re: Keep us in your prayers - 12/02/04 03:58 PM
LMP - everyone is in our prayers. I'm sorry that you have to endure this emotional rollercoaster. Please know you're not alone - we're all praying for you and the Lord is walking this journey right beside you.
Posted By: Patsy Cline
Re: Keep us in your prayers - 12/02/04 05:22 PM
I will keep you and your family in my prayers as well.
Posted By: HRH Dawnie
Re: Keep us in your prayers - 12/02/04 06:00 PM
We're thinking about you constantly! We'll keep our hopes high for success with your tests!!!
Posted By: mwhitaker
Re: Keep us in your prayers - 12/02/04 06:04 PM
More prayers coming your way from Texas!
Posted By: Cat Woman
Re: Keep us in your prayers - 12/03/04 02:49 PM
And more prayers coming to you from Massachusetts. Hang in there!
Posted By: Beagles22
Re: Keep us in your prayers - 12/03/04 07:07 PM
Do we know yet if LMP was a match yesterday? I don't know how long these things take. I am hoping for all the best!!!
Posted By: QCL
Re: Keep us in your prayers - 12/03/04 07:29 PM
Oh, sorry. I will actually not be tested until Tuesday. I will be going through the "work-up" pretty much all day. Labs, interview with social worker, MRI, etc. Phew!
Posted By: QCL
Re: Keep us in your prayers - 12/08/04 04:49 PM
I was tested yesterday. The MRI wasn't too bad. And the South Beach diet is paying off - I've lost 18 pounds
! (Go, me!) Anyway, they said it could be up to 2 weeks before we know.
And on a happy note - we got someone to wear an ELMO costume at the benefit!
Posted By: QCL
Re: UPDATE? - 12/09/04 05:24 PM
One more update...Where to begin? We may have news, I don't know yet.
Natalie may have a liver. Here is the story. Friends of my parents have an 8 month old grandbaby. The baby was sleeping with the parents and was suffocated Sunday night. At 1am this morning she was declared brain dead. The family of this baby is ADAMANT that Natalie get the liver. It's called directed donation and while it's done it is not very common. Their case worker called my parents at 1:30am to get our information (hospital, name, etc.).
I put a call into our hospital. At this point, all we can do is wait. We are a bundle of nerves.
It's always sad when a baby dies, but just like all dogs, all babies go to heaven... Particularly when they might just save another small child's life.
As previously stated, God works in mysterious ways. Prayers to all involved.
Keep us posted and i pray for everyone...
LMP - prayers to you and the other family as you continue on this emotional roller coaster ride. We lift you up!!
Posted By: Okie Dokie
Re: UPDATE? - 12/09/04 07:56 PM
LMP--I'm so sorry for the other family and will keep both your family and the other family in my prayers. Hopefully some good will come of this and Natalie will be able to receive this baby's liver.
Posted By: QCL
Re: UPDATE? - 12/09/04 07:56 PM
I wish that I had good news to report.
An hour ago, we finally heard from the hospital. They reviewed the liver around 5:30 this morning and unfortunately they said that there was too much damage to the liver to use it. The child had been without oxygen for too long.
LMP I'm so sorry to hear this. My prayers are for you to finally get off this roller coaster of raised and lowered hopes.
I can't even begin to imagine what you must be feeling - but just know that I too, like everyone else on this forum, prays for your family and wishes you the best. I hope that somehow, the holidays will brighten your little girl's spirits, and yours as well.
Posted By: Cat Woman
Re: UPDATE? - 12/09/04 09:00 PM
I'm so sorry to hear that. I'll keep praying that she gets a liver soon! Hang in there!
Posted By: HRH Dawnie
Re: UPDATE? - 12/09/04 09:07 PM
We're still praying for you and yours Luv! And we now will add the poor family who lost their little one.
You're part of our family and we're here for you. Please let us know if there's anything more we can do besides offer prayers and hope.
Posted By: QCL
Re: UPDATE - 12/17/04 11:09 PM
Hold on to your hats. We just heard from NW that I am a match!!! Now, my daughter's hospital still has to review my MRI images, and sign off on this, but the nurse that I talked to said she thinks this may be it.
HOWEVER, the surgeon that needs to review the slides went to Toronto (the nerve!). I'm tempted to drive the films to him myself. (But I won't even doctors, especially ones that have to deal with me, need a break!!!)
WOOHOO!!! Merry Christmas!!!
Posted By: Anonymous
Re: UPDATE - 12/17/04 11:14 PM
YEA!!!!! That would be a wonderful Christmas present!! You will be in my prayers!!
Posted By: VioletRose
Re: UPDATE - 12/17/04 11:21 PM
This is wonderful! I have been to your daughter’s web-site, she is beautiful. My thoughts are with you.
Posted By: HRH Dawnie
Re: UPDATE - 12/18/04 12:25 AM
Oh my goodness! You didn't have to match just to get me to say your thread was the best
BUT!!! Since you did!!! WOOO HOOOOOOOO I can't tell you how wonderful this is!!! AHh heck yes I can
You feel even more wonderful.
We appreciate you sharing the news, good and bad and wonderful! as this experience goes through it's course. We can't wait to hear the next step, and eventually see "our" little Bear is home again (you have to share the dear now)
Quote:
Hold on to your hats. We just heard from NW that I am a match!!!
What glorious news!!! I'm so glad I'm not at work - everyone would wonder why I'm crying. God is good!
Posted By: Citrus
Re: UPDATE - 12/18/04 02:56 AM
Dear Mom o'NB :
I read all about Natalie just last night (I don't know where I've been not already knowing just what was up!
) - then I went to her website - saw just how precious she is - I couldn't help but see how blessed you are to have her and she you. I am so glad I didn't have to wait long to hear your news. I have tears in my eyes as I type this - - such wonderful wonderful WONDERFUL news!!
Posted By: Pup
Re: UPDATE - 12/18/04 04:49 AM
Many Congratulations and prayers, Mom!! How blessed you are to be have the opportunity to give so much of yourself for your little one. You've been strong so far....keep it up and keep praying.
That's incredible news. I'll continue to keep both you and Natalie in my prayers. May this be the best Christmas ever!!
Posted By: Beagles22
Re: UPDATE - 12/20/04 02:58 PM
You have received a true Christmas gift. Better than any I can imagine. Your little bear is blessed as are you! I am very glad that the prayers seem to be helping you through all the ups and downs of this ordeal. Congratulations!! We will keep our prayers coming your way.
Thank Goodness!
May the Lord bless both of you this year, and may everything go forward without difficulty.
Posted By: Retired DQ
Re: UPDATE - 12/20/04 03:28 PM
That is wonderful news!! God Bless.
Posted By: Okie Dokie
Re: UPDATE - 12/20/04 03:47 PM
Wonderful news!!! We will keep you and little Natalie Bear in our prayers.
What glorious news!
Merry Christmas to all.
And to you and all of the rest of you who prayed so hard for this, God bless us everyone!
Posted By: deppfan
Re: UPDATE - 12/20/04 05:00 PM
AMEN.
Hallelujah!
Posted By: Cat Woman
Re: UPDATE - 12/20/04 09:29 PM
There is a Santa Claus!
Congratulations! I'll still be keeping you in my prayers!!
Posted By: redsfan
Re: UPDATE - 12/20/04 10:13 PM
That is great news. We will keep you in our thoughts and prayers.
God is Good (All the Time!)
All the time (God is good)
Posted By: Nanwa
Re: UPDATE - 12/22/04 12:03 AM
Sing praise, sing praise!
Good luck and my prayers are with you!
Posted By: P*Q
Re: Keep us in your prayers - 12/22/04 01:33 PM
I just visited the website, she is so beautiful. I'm so glad to hear your news. Very strong thoughts and prayers are with you and your family from Mass.
Posted By: Cowboys Fan
Re: Keep us in your prayers - 01/03/05 11:30 PM
Any news?
Posted By: HRH Dawnie
Re: Keep us in your prayers - 01/04/05 02:20 AM
Ya...any news? We need our little bear story
Posted By: QCL
Re: Keep us in your prayers - 01/04/05 04:12 PM
Oh Dawnie,
I wish, I wish, that there was news. The bear's surgeon returned from vacation yesterday, so we WILL hear this week. (If they don't call, I'll be calling.) The transplant team has their weekly meetings on Thursdays discussing their kids. So Thursday afternoon I'll be calling them.
And as always, if you click on my user name, you can get to her website.
Posted By: Bengals Fan
Re: Keep us in your prayers - 01/04/05 04:14 PM
We will look forward to hearing all about the good news on Thursday or Friday then!
Posted By: corkygirl
Re: Keep us in your prayers - 01/04/05 04:24 PM
Posted By: HRH Dawnie
Re: Keep us in your prayers - 01/05/05 09:13 PM
Pray for good news then BOLers
We'll call for you if you don't hear anything!
Posted By: Skittles
Re: Keep us in your prayers - 01/06/05 12:16 PM
Update on my mother - she was able to go home yesterday. It was exhausting for her (there are 15 steps to get into the house), but she's happy to be there. I told my father to call me several times a day since I don't want to call and disturb her. My niece (an RN) is flying in tomorrow to stay here for about a week and help her.
So far so good and thanks for everyone's prayers. They mean so much.
Good luck momofnataliebear. I know you're going to get the best news.
Posted By: HRH Dawnie
Re: Keep us in your prayers - 01/06/05 07:28 PM
Wonder news day Skittles
I'm glad Mom is at home! That means the world to most of us when we're not at our best. Our beds are so much nicer than the hospital!
Posted By: QCL
Re: Keep us in your prayers - 01/06/05 09:08 PM
I am a match! I am a match! I am a match!
I'll let you all know when the surgery is scheduled. Praise God. I can't wait to do this for Natalie.
Posted By: Cowboys Fan
Re: Keep us in your prayers - 01/06/05 09:10 PM
That is such great news!! I'm so happy for you both.
Posted By: Princess Leia
Re: Keep us in your prayers - 01/06/05 09:10 PM
Wow. Again, I'm brought to tears (my co-workers must think I'm nuts). Praise God. He is so Good.
Posted By: Bengals Fan
Re: Keep us in your prayers - 01/06/05 09:18 PM
LMP, if there's anything you need to prepare for the surgery, let us know. I'm sure someone around here can help you with it! Are your coworkers as excited for you as we are?
Posted By: obx nut
Re: Keep us in your prayers - 01/06/05 09:19 PM
What WONDERFUL news!!!!!!!! Again, an example of the power of prayer!
Posted By: GreatBlue
Re: Keep us in your prayers - 01/06/05 09:20 PM
Yipee! Yipee! Yipee!
Thank you Lord!
Posted By: RR Joker
Re: Keep us in your prayers - 01/06/05 09:23 PM
.
Such GREAT news!!!!! What a relief you must be feeling
Posted By: Truffle Royale
Re: Keep us in your prayers - 01/06/05 09:30 PM
yahoo!
Such singing and rejoicing we're all going to be doing! I've never seen prayers work like this before.
LMP, Michael's right. Let us know if you or our dear little bear need ANYTHING. Needless to say, the prayers will keep on coming for you both.
Posted By: HRH Dawnie
Re: Keep us in your prayers - 01/06/05 09:35 PM
Oh what wonderful news!!!! When are you going to proceed? We need to be extra prompt in getting to prayer that day!
I'm so happy for you. It's so hard to wait and hope and wait and hope for a match. Life is good today
Posted By: Deena
Re: Keep us in your prayers - 01/06/05 09:37 PM
What wonderful news! We, of course, will continue to pray for you and your family. You must be just overwhelmed with relief and anticipation.
Posted By: QCL
Re: Keep us in your prayers - 01/06/05 09:38 PM
Quote:
Oh what wonderful news!!!! When are you going to proceed? We need to be extra prompt in getting to prayer that day!
Since she is healthy and stable, they would like to do it fairly soon. It is a matter of setting up scheduling with 2 surgeons, 2 anesthesiologists, 2 operating rooms (since they do our surgeries at 2 affiliate hospitals).
Posted By: SMQ, CRCM
Re: Keep us in your prayers - 01/06/05 09:42 PM
Awesome!!!! Isn't it just awesome what the power of prayer can do? I will keep praying for you and your family.
I have tears in my eyes, I will notify the prayer chain that was started at my work on behalf of your family...thank God for miracles
Posted By: Bengals Fan
Re: Keep us in your prayers - 01/06/05 09:53 PM
You mean to tell me they don't do your surgeries in the same hospital and just walk down the hall? That sounds almost absurd... But whatever works!
Posted By: Jokerman
Re: Keep us in your prayers - 01/06/05 09:55 PM
That is great news, LMP. I am very happy for you!
Posted By: QCL
Re: Keep us in your prayers - 01/06/05 10:02 PM
Quote:
You mean to tell me they don't do your surgeries in the same hospital and just walk down the hall? That sounds almost absurd... But whatever works!
The bear goes to Children's Memorial (it's just for little bears). So their affiliate hospital is Northwestern Memorial (for the big bears ).
Posted By: waldensouth
Re: Keep us in your prayers - 01/06/05 10:04 PM
Wonderful, Wonderful News! We will keep you in our prayers.
Posted By: VioletRose
Re: Keep us in your prayers - 01/06/05 10:20 PM
Yippeee!!!!!!!!
What wonderful news
Best of luck with the procedure.
Posted By: corkygirl
Re: Keep us in your prayers - 01/06/05 10:23 PM
YEA!!!!!!! Childrens and Northwestern are both very, very good hospitals. I live in the Chicao area, let me know if I can help with anything, I mean anything.
Posted By: QCL
Re: Keep us in your prayers - 01/06/05 10:27 PM
Thanks. I just may take you up on that.
The bear's transplant surgeon (at CMH) is in the top 5 pediatric transplant surgeons! (Notice I did not limit it to the USA) I lovingly refer to him as a "mad scientist."
Posted By: Citrus
Re: Keep us in your prayers - 01/07/05 04:46 AM
That is so wonderful!
Posted By: CRAatBOK
Re: Keep us in your prayers - 01/07/05 05:29 AM
This is such wonderful news. I am doing a happy dance for you. What a lucky little bear you have.
Posted By: Skittles
Re: Keep us in your prayers - 01/07/05 12:38 PM
WONDERFUL!!! This is the best possible news. Please keep us posted and we're all praying for you and Natalie.
Posted By: Okie Dokie
Re: Keep us in your prayers - 01/07/05 02:42 PM
Terrific news!!! I will keep you both in my prayers. God is good!!!
Posted By: deppfan
Re: Keep us in your prayers - 01/07/05 03:18 PM
Quote:
Terrific news!!! I will keep you both in my prayers. God is good!!!
Yeah, what she said. I'm so glad!
Posted By: QCL
Re: Keep us in your prayers - 01/13/05 02:18 PM
A few of you have asked...so rather than sending lots of PMs...I have nothing to update. The last that I heard from the hospital was on Tuesday, and that was that the transplant will take place sometime within the next month. (I'm not sure if that means sometime in January of sometime between now and Feb 11.)
Posted By: Bengals Fan
Re: Keep us in your prayers - 01/13/05 02:26 PM
As I understand it, there is a March 1 deadline for bankers wishing to donate organs from last year, so don't let it go too long
Posted By: QCL
Re: Keep us in your prayers - 01/13/05 02:31 PM
Quote:
As I understand it, there is a March 1 deadline for bankers wishing to donate organs from last year, so don't let it go too long
Posted By: QCL
Re: UPDATE - 01/18/05 05:24 PM
Surgery is
tentatively scheduled for Friday Feb. 4. My tummy is all butterflies
.
LMP, MNB, whatever we are going to call you (besides your daughters angel), we will all be praying from now until you log in and tell us you have both recovered.
PS: At least you made the March 1 deadline!
Posted By: deppfan
Re: UPDATE - 01/18/05 05:37 PM
That's great news! Now stop snacking on butterflies at least by midnight of the 3rd!
Seriously, you are both in my prayers, and the jacket is in the works....the embroidery part is taking longer than expected.
Posted By: corkygirl
Re: UPDATE - 01/18/05 05:45 PM
I'm glad you have a date, even if it is
tentative, not knowing is so hard to live with. Daily good thoughts coming your way between now and your first posting after the surgery. Remember, I live near by and can help if you want or need it.
Posted By: QCL
Re: UPDATE - 01/18/05 05:48 PM
Here's something that I just learned...The butterfly, a symbol of change, new life and hope, is often associated with organ donation. Too cool!
I may be rambling here, but my 97 year old great grandma has always been obsessed with butterflies (she always wears a pin of one on her shoulder). I feel like life has come full circle. God is good.
Posted By: QCL
Re: UPDATE - 01/18/05 05:52 PM
I may not post right away, but am teaching my hubby how to update the caringbridge page. So feel free, anyone, to check that and post updates from that here.
And thanks so much for your prayers!!!
Posted By: CRAatBOK
Re: UPDATE - 01/19/05 03:18 AM
What wonderful news. I am so happy for you. I will be checking the web site so I will know how things are going. Best of luck to you and the Bear. I will be thinking about you.
Posted By: Retired DQ
Re: UPDATE - 01/19/05 01:38 PM
Best of luck, LMP!!!!
Posted By: QCL
Re: UPDATE - 01/19/05 06:41 PM
CHANGE IN PLANS...
I just heard from Northwestern, the surgery is now Wednesday Feb. 2. I have to go Tuesday Feb. 1 to have more blood work, and EKG, and a chest X-Ray. My surgery will start at approx. 6 am on that Wednesday, Natalie's will start at approx 11am.
Phew...so nervous...
Posted By: Skittles
Re: UPDATE - 01/19/05 06:46 PM
Take a deep breath and know that everything will work out perfectly. How could it be any other way with all of us here praying for you and your daughter?
Posted By: QCL
Re: UPDATE - 01/19/05 06:52 PM
Oh for crying our loud...ANOTHER CHANGE IN PLANS...
They just called back the surgery is now Wednesday Feb. 9.
GRRR....
Posted By: redsfan
Re: UPDATE - 01/19/05 07:01 PM
Mom, this might be a good time to recognize that this is something over which you have no control. Take a deep breath, close your eyes, and repeat, "I won't kill the surgeon till AFTER the surgery... I won't kill the surgeon..."
Remember the end result - a healthy life for your little Bear. That should make it easier.
Prayers for you daily for weeks to come. Peace.
A call to your doctor may help solidify a date. It's really not fair of them to keep switching back and forth and it's probably just a receptionist or nurse who's doing it, not the surgeon. Your doctor can get them to settle on a date and mark it in ink for you!
Many prayers from cheeseland for you and the little bear.
Continued thoughts & prayers from MN!! Hopefully they'll settle on a date soon. If we're on pins & needles, I can't imagine what you are!
I am so proud of you for remaining sane through all this. I'm not sure I am as strong as you, but you have given me a great deal of inspiration. Good Luck - and I REALLY mean that. Hug you daughter for me - for us all who pray for her regularly.
Let us know which hospital you will be going in to so we can send you cards and such!
Posted By: HRH Dawnie
Re: UPDATE - 01/19/05 08:38 PM
What a gift you're able to give your child
I know it's stressful as all get out, but try to think of the good. I'd love to be able to give my good friend the gift of life, despite the worry and stress. You're lucky
And your little lovey bear is such a lucky girl to have such a great mom!
And if the docs drive you nuts...bake them brownies with exlax in them...AFTER THE SURGERY! heh heh
Posted By: QCL
Re: UPDATE - 01/19/05 08:40 PM
pbrinker: Thanks for making me laugh!!
bjp: It's the surgeons. (Actually one of the fellows could not attend on the original Feb. 2. And Natalie's surgeon won't do transplants on Fridays if he can help it - do to the critical nature of the days following the transplant and the fact that it's basically a skeleton crew working on weekends)
Michael P:
I'll be at
Northwestern Memorial (for cards you'll need my name), Natalie (AKA the bear) will be at
Childrens Memorial.
And thanks ALL for your continued prayers. <img src="/ubbthreads/images/graemlins/grin.gif" alt="" /> Soon all this stress will be a distant memory and so worth it!!!
Posted By: Anonymous
Re: UPDATE - 01/19/05 09:47 PM
Quote:
Soon all this stress will be a distant memory and so worth it!!!
That is so true. Our mind has a way of gently helping dim the lights on formerly blinding memories of pain and trauma.
We're all pulling for you and your daughter.
Posted By: deppfan
Re: UPDATE - 01/19/05 11:08 PM
Quote:
We're all pulling for you and your daughter.
Yes we are! 
Posted By: QCL
Re: Keep us in your prayers - 01/24/05 06:30 PM
Miss Natalie is again a very sick little girl.
We are on our way to Children's Memorial right now. I'm signing off after I type this to drive there. Her tummy is huge (fluid collecting around the organs due to end stage liver disease) and they are going to try to tap it tomorrow.
instant prayers coming your way...
Posted By: Anonymous
Re: Keep us in your prayers - 01/24/05 06:48 PM
I am so sorry. I hope and pray that their treatment will quickly resolve the problem. Gotta get her in good shape for the surgery ...
Posted By: Busy Bee, CRCM
Re: Keep us in your prayers - 01/24/05 07:06 PM
I just said a prayer for you, Natalie, and the doctors. I will continue to pray. Keep us updated if you can.
Posted By: Deena
Re: Keep us in your prayers - 01/24/05 07:10 PM
That poor little girl! I have said a prayer for her and for your family - and will continue to pray until we know she's out of the woods. I hope that things will get better very soon for all of you.
Posted By: Anonymous
Re: Keep us in your prayers - 01/24/05 07:13 PM
I am so sorry to hear this news. Lots and lots of prayers and good thoughts coming your way!! Echo what others have said, need to get that little one well so the surgery can happen in February.
Posted By: Cat Woman
Re: Keep us in your prayers - 01/24/05 07:26 PM
More prayers coming from MA. Hang in there!
Posted By: Princess Leia
Re: Keep us in your prayers - 01/24/05 07:26 PM
I'm so sorry that she has to go through all of this. We're praying for all of you.
Posted By: deppfan
Re: Keep us in your prayers - 01/24/05 07:38 PM
Prayers from Oklahoma. Hang in there, and give the Bear our Love.
Prayers for Natalie and her "family".
Posted By: GreatBlue
Re: Keep us in your prayers - 01/24/05 08:12 PM
I'm so sorry you all are going through this, especially so close to the surgery date! I am praying for you all.
Posted By: Princess Romeo
Re: Keep us in your prayers - 01/24/05 09:02 PM
Prayers from Los Angeles too!
Posted By: HRH Dawnie
Re: Keep us in your prayers - 01/24/05 09:03 PM
Prayers from Alaska as always. Hopefully soon with surgery she won't have to go through this anymore
Posted By: Jay Bruce
Re: Keep us in your prayers - 01/24/05 09:09 PM
More prayers from Oklahoma for you and your little one.
Posted By: Truffle Royale
Re: Keep us in your prayers - 01/24/05 09:22 PM
Much love and prayers headed south from Cheeseland! Children's is the best place for our little bear to be to get past all of this as well and as soon as possible.
Take care of yourself too! You are literally your daughter's future.
Posted By: Patsy Cline
Re: Keep us in your prayers - 01/24/05 09:33 PM
I will continue to keep you and your precious little one in my prayers. She must be strong and you too for the surgery.
Posted By: Citrus
Re: Keep us in your prayers - 01/24/05 10:15 PM
I was sorry to read the news. I will keep her (and you) in my prayers. Hoping she has a speedy recovery so the operation can take place as planned. I just know everything will be okay.
Posted By: Walleye Woman
Re: Keep us in your prayers - 01/24/05 11:14 PM
Prayers coming from Wyoming.
Posted By: someone else
Re: Keep us in your prayers - 01/24/05 11:18 PM
You will be in my thoughts as well from Southern California...I am also a parent to a small child and I cannot imagine the heartache and stress you must be feeling right now. Keep strong and know there are so many out there thinking of you and hoping all the best.
Posted By: Bones
Re: Keep us in your prayers - 01/24/05 11:54 PM
Prayers continue for you and Natalie!
Posted By: Cowboys Fan
Re: Keep us in your prayers - 01/25/05 12:17 AM
Sending good thoughts your way.
Posted By: CRAatBOK
Re: Keep us in your prayers - 01/25/05 12:58 AM
Becca,
Sorry to hear about the set back. You and Natalie bear are in my thoughts. Hang in there.
Posted By: Princess Romeo
Re: Keep us in your prayers - 01/25/05 10:50 AM
Mark 10:13-16 (King James Version)
13And they brought young children to him, that he should touch them: and his disciples rebuked those that brought them.
14But when Jesus saw it, he was much displeased, and said unto them, Suffer the little children to come unto me, and forbid them not: for of such is the kingdom of God.
15Verily I say unto you, Whosoever shall not receive the kingdom of God as a little child, he shall not enter therein.
16And he took them up in his arms, put his hands upon them, and blessed them.
The love of Christ Jesus and G-d is always with you.
Posted By: Brandy Osborne
Re: Keep us in your prayers - 01/25/05 01:46 PM
Prayers from KY coming through...
Posted By: Princess Leia
Re: Keep us in your prayers - 01/26/05 10:10 PM
There is an update on Natalie's website. Yesterday they tapped her belly to drain the fluid and tested it.
Momofnataliebear reports today:
Well, the "tapping" showed that the ascites fluid is not infected. So the plan is to treat this like it is cholangitis (that will make it #3 for her). She is getting a PICC line right now. Then they want to send us home on IV anti-biotics until the transplant.
After 2 full days, already her fevers are gone. Her belly is a bit smaller, but I think that they will send us home on a diuretic.
Her mood has improved (even though she's been NPO (orders to have no food or drink) for 18 hours)! She continues to be my little German-Irish spit-fire. She has gotten blood drawn 4 or 5 times now since we've been in-patient, and I've said it 100 times, I have no idea where she gets her temper from!
Please continue to keep Natalie and her family in your prayers.
Posted By: HRH Dawnie
Re: Keep us in your prayers - 01/27/05 01:40 AM
Thanks for updating us! She sounds like she's in better shape and we'll hope all stays well for the surgery on schedule. We want that little spitfire out and about this summer
Posted By: deppfan
Re: Keep us in your prayers - 01/27/05 02:29 PM
Check the mail when you have time....
I'm so glad to hear this report. It sounds like she has exactly the right amount of spirit to beat this. And something tells me she gets that from you.
Posted By: corkygirl
Re: Keep us in your prayers - 01/27/05 04:07 PM
Thanks for the update, it's so hard to think of that little one having so very much done to her!! Pray she gets that surgery so she can run and play in the summer sun!!!
Posted By: QCL
Re: Keep us in your prayers - 01/27/05 04:31 PM
Thanks all. We're still in Chicago - Corkygirl, what the heck is up with "Lake Affect" snow?! They are talking about releasing us (for 13 days) today or tomorrow.
Also, yesterday we received a stack of cards and letters that they have been holding for us since our last visit - it was so cool!
Glad to hear the good news. Keep on truckin' Bear.
Posted By: corkygirl
Re: Keep us in your prayers - 01/27/05 08:31 PM
Don't you just love that "lake effect" snow!!! At-least it's just the light, fluffy stuff and over by noon!! Bundle up that little one and go home!!!
Posted By: Bones
Re: Keep us in your prayers - 01/28/05 03:36 PM
Sounds like you have a tough little girl there! I'm glad to hear she is doing better. Continued prayers for you both.
Posted By: QCL
Re: Keep us in your prayers - 01/31/05 03:01 PM
Well, today is my last day at work until after the surgery. We are home from our latest hospital stay. The bear is strong and feeling good. She's on IV meds, a diuretic, and blood pressure medication.
The doctors would like us to keep the bear home from daycare. Thanks again, for all your prayers and encouraging words! Our priest came over yesterday and blessed us both. That has helped to bring me some comfort...it's out of my hands now and into God's.
Posted By: deppfan
Re: Keep us in your prayers - 01/31/05 03:47 PM
Stay strong Becca. We love you and have you in our prayers!
Posted By: Retired DQ
Re: Keep us in your prayers - 01/31/05 04:48 PM
Best wishes for all of you!
Posted By: Okie Dokie
Re: Keep us in your prayers - 01/31/05 04:52 PM
Quote:
Stay strong Becca. We love you and have you in our prayers!
I'll second that!!!!
Posted By: Anonymous
Re: Keep us in your prayers - 01/31/05 05:13 PM
We'll be praying for a smooth surgery and a quick recovery for you both.
Posted By: Jay Bruce
Re: Keep us in your prayers - 01/31/05 05:14 PM
Quote:
...it's out of my hands now and into God's.
A gentle reminder: it has never been out of His hands.
We continue to pray for God's blessings upon your daughter and you.
Psalm 46:1-3, God is our refuge and strength, a very present help in trouble. Therefore we will not fear though the earth gives way, though the mountains be moved into the heart of the sea, though its waters roar and foam, though the mountains tremble at its swelling.
Posted By: Patsy Cline
Re: Keep us in your prayers - 01/31/05 05:38 PM
I will continue to pray for you both as well as your family.
Posted By: QCL
Re: Keep us in your prayers - 01/31/05 05:50 PM
Thanks for the reminder J. Bruce.
This has become my mantra:
"I can do everything through Him who gives me strength." ~ Philippians 4:13
Posted By: Walleye Woman
Re: Keep us in your prayers - 01/31/05 06:33 PM
Stay strong and know that we'll all be praying for you.
Posted By: Brandy Osborne
Re: Keep us in your prayers - 01/31/05 07:14 PM
you guys are in my thoughts and prayers!!!
Posted By: corkygirl
Re: Keep us in your prayers - 02/01/05 12:22 AM
You are in my prayers.
Posted By: CRAatBOK
Re: Keep us in your prayers - 02/01/05 03:21 AM
Thoughts of love coming from KC.
Posted By: Princess Leia
Re: Keep us in your prayers - 02/08/05 01:53 PM
I thought I'd send an update. As you know, tomorrow is the big day.
Natalie will be admitted today at Children's Memorial. Tomorrow's schedule looks like this:
6am - Mom reports to Northwestern
7am - Mom wheeled in to surgery
approx. 11am - Natalie's surgery to start at Children's
Mom's surgery is expected to be around 6 hours and Natalie's will be 12+. Following surgeries mom will be discharged probably by Friday from Northwestern. Natalie will (most likely) be in-patient for a month.
I have addresses, etc. of where they will be staying if anyone is interested. Just PM me.
If you would like to send Natalie a card
Click Here Let's continue to keep our fellow BOLer and her special bear in our prayers. Thanks everyone ~ I know they appreciate it.
Our continued prayers and best wishes for you guys. Please take care.
Posted By: Bones
Re: Keep us in your prayers - 02/08/05 05:50 PM
I'm praying for the best.
Posted By: Nanwa
Re: Keep us in your prayers - 02/08/05 07:06 PM
Oh my, it's the big day, the big day, THE BIG DAY! Prayers going out from FLorida!
Posted By: HRH Dawnie
Re: Keep us in your prayers - 02/08/05 08:02 PM
Please let us know when you can! We have all been hoping for this for so long. We'll be praying in Alaska!
Posted By: IUalum
Re: Keep us in your prayers - 02/08/05 08:15 PM
And praying in Kentucky!
Posted By: Patsy Cline
Re: Keep us in your prayers - 02/08/05 08:58 PM
Thank you for the update! Mom and Natalie are in my thoughts and prayers.
Posted By: Quadspapa
Re: Keep us in your prayers - 02/08/05 09:33 PM
More prayers from Texas have been said on your behalf.
Posted By: deppfan
Re: Keep us in your prayers - 02/08/05 10:00 PM
Quote:
Well the "bear" is finally getting listed to receive a new liver. She is getting progressively worse. I am going to start the testing process to see if I am a good match for a living liver donation.
Keep us in your thoughts and prayers.
BTW - I'm in the hospital computer lab taking a much needed stress break and where do I come - BOL! LOL!
It all started with this post last October. Lots of prayers have been offered, and many more will continue. I pray that God guides the doctors and nurses caring for you both. I pray that God gives your family and friends strength and faith to hold you up, now and always. And most of all, I pray that the Holy Spirit is with you both during your healing time. God bless, Becca and Natalie, and please keep us posted when you can.
Posted By: corkygirl
Re: Keep us in your prayers - 02/08/05 11:24 PM
Hugs, kisses and prayers to both!!!
Posted By: RVFlyboy
Re: Keep us in your prayers - 02/08/05 11:55 PM
Becca and Natalie, I am praying for you both that everything will run smoothly and without complication for both of you.
Jim
Posted By: Truffle Royale
Re: Keep us in your prayers - 02/09/05 01:58 AM
Best wishes for a speedy recovery for you both. You're both permanently entered into my prayer list. God bless!
Posted By: Jay Bruce
Re: Keep us in your prayers - 02/09/05 02:39 PM
May God watch over and care for both of you today, and bring this surgery to a good conclusion. May your daughter leave the hospital with renewed health, to the great joy of her family and of all who have prayed for you on this thread.
Posted By: Flower Child
Re: Keep us in your prayers - 02/09/05 04:10 PM
I keep thinking about this family today. Although I haven't posted here, I have read all the threads. This is my 3rd time here today checking for any information.
Posted By: Princess Leia
Re: Keep us in your prayers - 02/09/05 04:17 PM
Although I'm on pins & needles and can "bearly" concentrate, I don't expect any updates today. Hopefully I'll have something tonight or in the morning. I'll pass along anything as soon as I hear.
Keep the prayers coming, not only for Becca & Natalie, but for Jason who has his 2 loved ones undergoing major surgery at different hospitals.
Posted By: Retired DQ
Re: Keep us in your prayers - 02/09/05 06:29 PM
OK, Becca, let us know!!!
(DOH!!! or Doe! or DUH!)
Posted By: Princess Leia
Re: Keep us in your prayers - 02/09/05 06:48 PM
Pssst . . . Jason is dadofnataliebear
Posted By: BBoyd
Re: Keep us in your prayers - 02/09/05 07:35 PM
Prayers from Michigan!!! God is good - all the time!
Posted By: HRH Dawnie
Re: Keep us in your prayers - 02/09/05 08:45 PM
E gads Leia...how much can one family take! I'll keep Jason in my prayers too, but I sure hope we hear some good news on Becca and her lovely bear
It's about time for that little darling to have a life without doctors!
Posted By: Walleye Woman
Re: Keep us in your prayers - 02/09/05 08:53 PM
I said a special prayer at mass today.
Posted By: Countess Kiwi
Re: Keep us in your prayers - 02/09/05 09:14 PM
I haven't posted much on here, but this family has been in my thoughts a lot lately. I hope all is going well right now with the little bear and I hope Mom is doing well also.
Posted By: TTC Queen
Re: Keep us in your prayers - 02/09/05 09:35 PM
More prayers for the whole family from Oklahoma.
Posted By: CRAatBOK
Re: Keep us in your prayers - 02/10/05 05:43 AM
Becca & Bear. Hope all is going well. Jason, what a lucky guy you are to have two such brave and beautiful women in your life. Stay strong.
Posted By: someone else
Re: Keep us in your prayers - 02/10/05 04:09 PM
momofnataliebear - I cannot imagine how difficult all this is for you; you must have the inner strength of an ox. My thoughts are with you, your daughter and your family. I hope everything is OK.
Posted By: SMQ, CRCM
Re: Keep us in your prayers - 02/10/05 05:28 PM
Any news?
Prayers from MS.
Posted By: Bones
Re: Keep us in your prayers - 02/10/05 05:48 PM
I hope and pray all is going well!
Posted By: Anonymous
Re: Keep us in your prayers - 02/10/05 05:59 PM
Hope and prayer, they do not go together, do not hope pray
Posted By: deppfan
Re: Keep us in your prayers - 02/10/05 06:33 PM
"Jesus Christ our hope" (1 Tim. 1:1)
Posted By: Princess Leia
Re: Keep us in your prayers - 02/10/05 07:26 PM
I have some news - everything is going well so far.
Both surgeries went quite well. Becca is recovering fine at Northwestern. She is on a pump for pain management and is quite, understandably, sore, but in great spirits. There was talk about releasing her tonight, but she's hoping its tomorrow so she gets a bit more time for rest and recovery.
The surgeons were not able to close up Natalie's incision completely so tomorrow she will be taken back to surgery for that. It is not uncommon for kids who've just received liver transplants to need to be left "open" a bit to give time for the body to adjust to the size of the new liver and to let the swelling go down. They are keeping Natalie in a "paralyzed" state so that she doesn't move until she's completely closed up. She is on a respirator, but doing quite a bit of the breathing on her own.
Please keep everyone in your continued prayers.
Posted By: starfish
Re: Keep us in your prayers - 02/10/05 07:51 PM
I'm so glad to hear that it went well...I will continue to keep both in my prayers and hope that the additional surgery for Natalie goes well.
Posted By: Okie Dokie
Re: Keep us in your prayers - 02/10/05 07:54 PM
Thanks for the update Princess. I will keep them both in my prayers. I'm so glad that everything is working out for them!!
Posted By: hmdagal
Re: Keep us in your prayers - 02/10/05 08:03 PM
It's great to see the news is good! Isn't it amazing how quickly they send people home from the hospital after surgery?
Great news, thanks for the update. Continued prayers...
Posted By: Princess Leia
Re: Keep us in your prayers - 02/10/05 08:20 PM
Quote:
It's great to see the news is good! Isn't it amazing how quickly they send people home from the hospital after surgery?
I can't even imagine going home tomorrow. That is crazy, but I'm sure she'd like to be with Natalie also!
I'll make sure to let everyone know if I get anymore updates. Thanks for all the prayers.
Posted By: Countess Kiwi
Re: Keep us in your prayers - 02/10/05 08:21 PM
Thanks Princess for keeping us informed. Continued prayers from Idaho. I hope they decide to keep Becca one more night so she can get some extra strength and sleep (if that is possible in the hospital).
Posted By: Princess Leia
Re: Keep us in your prayers - 02/10/05 08:23 PM
I just saw this in one of the guestbook posts on Natalie's website:
Becca was out of surgery yesterday at 2:30 The had the liver at 11:20 a.m. and started on Natalie at Noon. Becca is doing well and they will start her on a regimented walking program today, Feb. 10th. She will be out of the hospital on Friday. He called again last night at 6:30P and said Natalie got out of her surgery at 5:30P almost 5 hours earlier than expected.
Posted By: someone else
Re: Keep us in your prayers - 02/10/05 09:00 PM
Wonderful news! I hope all continues to go well...
Posted By: HRH Dawnie
Re: Keep us in your prayers - 02/10/05 09:42 PM
Goodness what wonderful news! We're still praying until we're told not to.
Keep the news coming please! We all want to see pictures of a happy and healthy little Natalie
Posted By: corkygirl
Re: Keep us in your prayers - 02/10/05 10:29 PM
What good news, that is wonderful!!!
Posted By: SMQ, CRCM
Re: Keep us in your prayers - 02/10/05 11:03 PM
Great News!!! Thanks,
Posted By: Citrus
Re: Keep us in your prayers - 02/11/05 12:14 AM
I am so glad to hear mother and daughter are doing well!! What a medical blessing!
Posted By: obx nut
Re: Keep us in your prayers - 02/11/05 12:42 AM
Praise God who answers our prayers!
Posted By: Truffle Royale
Re: Keep us in your prayers - 02/11/05 12:56 AM
Oh happy days!
Much love and prayers continue your way!
Thanks for keeping us updated, Princess.
Posted By: Anonymous
Re: Keep us in your prayers - 02/11/05 01:43 AM
What wonderful news!
Posted By: CRAatBOK
Re: Keep us in your prayers - 02/11/05 05:08 AM
I feel bad now about complaining about what a rough couple of days I've had. I guess my rough days are nothing compared to what these to tough ladies just went through. Hang in there and know we are thinking about you.
Posted By: Retired DQ
Re: Keep us in your prayers - 02/11/05 12:46 PM
Modern medicine is truly amazing. Glad to hear all is well!!!
Posted By: Cat Woman
Re: Keep us in your prayers - 02/11/05 01:12 PM
I'm so happy all went well! I continue to pray for them.
Posted By: Nanwa
Re: Keep us in your prayers - 02/11/05 02:21 PM
Yes, continue prayers! They are not out of the woods yet. There's still alot of healing going on. I pray for strength and as little pain as necessary.
PS. Catgirl, love the avatar! Dawnie, yours too!
Posted By: deppfan
Re: Keep us in your prayers - 02/11/05 03:15 PM
Quote:
I feel bad now about complaining about what a rough couple of days I've had. I guess my rough days are nothing compared to what these to tough ladies just went through. Hang in there and know we are thinking about you.
I know it puts things into perspective for me. We're still praying for you guys. (Jason too...and Jason, I love the idea for the doo rag. )
Posted By: GreatBlue
Re: Keep us in your prayers - 02/11/05 03:55 PM
Becca, I'm so happy for you and Natalie that everything is going well so far. I'm continuing to pray for you all.
Yeah, what GB said! I'm so happy for you all.
Posted By: E.E.G.B
Re: Keep us in your prayers - 02/11/05 07:43 PM
Glad to hear it went well and sending wishes for everyone's speedy recovery.
Posted By: Patsy Cline
Re: Keep us in your prayers - 02/11/05 08:21 PM
Wonderful news. Looking forward to continued positive updates. Keeping both in my thougths and prayers.
Posted By: Princess Leia
Natalie & Becca UPDATE - 02/11/05 10:46 PM
Becca was discharged this afternoon and is now at Children's with Natalie. She's doing well, but is very sore. Natalie had her follow up surgery this morning and they were able to close her incision. They will try to wean her off the ventilator over the weekend and expect her to be moved out of ICU after she's off the vent if there aren't any complications.
Keep them in your prayers, but so far so good!
Posted By: Walleye Woman
Re: Natalie & Becca UPDATE - 02/11/05 10:52 PM
That is a great way to start the weekend, thanks for the news. I will keep praying for recovery for both.
Posted By: Bones
Re: Natalie & Becca UPDATE - 02/11/05 11:09 PM
Great news! Continued prayers for both!
Posted By: Citrus
Re: Natalie & Becca UPDATE - 02/12/05 01:16 AM
Wonderful-I am so happy to hear the news! Thanks for the update, PL!
Posted By: Truffle Royale
Re: Natalie & Becca UPDATE - 02/12/05 03:38 AM
Glad I checked here one more time before heading out on vacation. Thanks for the update. Continued prayers from someplace much warmer!
Posted By: Retired DQ
Re: Natalie & Becca UPDATE - 02/12/05 02:20 PM
Good luck Natalie & Becca!! Keep up the good work.
Posted By: corkygirl
Re: Natalie & Becca UPDATE - 02/12/05 04:33 PM
If I have to work on a Saturday, at least I can get good news like this!!!!
Posted By: deppfan
Re: Natalie & Becca UPDATE - 02/12/05 05:59 PM
Praise God.
Posted By: Princess Leia
URGENT PRAYERS NEEDED FOR NATALIE - 02/13/05 03:22 AM
I received this information today:
Natalie went back to surgery this morning due to her hepatic artery being blocked. Her liver numbers began rising, causing the need to operate to find the source of the problem. The doctors feel that the artery became blocked due to pressure from her being closed up yesterday. There is now flow through the hepatic artery, but the surgeon had to leave her "open" meaning not even her skin is stitched together. Her incision is covered with gauze. She will be left this way for 2-3 days. Natalie has been relisted for a transplant, but not as Status 1 (the highest lising status possible). There is no plan right now to re-transplant her, but because of the blockage, there has been some damage to the liver. How much, they don't know yet.
Please keep them all in your prayers - I will continue to update this thread as I receive any information.
Posted By: CRAatBOK
Re: URGENT PRAYERS NEEDED FOR NATALIE - 02/13/05 04:36 AM
So sorry to hear about this set back. Bear is in my thoughts.
Posted By: Princess Leia
Re: URGENT PRAYERS NEEDED FOR NATALIE - 02/13/05 03:11 PM
As of last night Natalie was "holding her own."
Please keep them all in your prayers. Becca & Jason are on a tremendous rollercoaster.
Heavenly Father, please comfort Becca & Jason and their families during this time of uncertainly. Let them feel your love and presence when they begin to feel overwhelmed. Strengthen Becca as she recovers from her surgery. Please guide the doctors as they care for Natalie and help them quickly determine what course of action is needed for her to fully recover. Please protect little Natalie and put your healing hands upon her. Finally, we pray for Jason ~ please give him the strength he needs. This has been such an emotional time for him as well. He is the rock - be there to hold him when he leans on you.
Lord, we lift them up to you. We are praying for them when they are not able to pray themselves.
We pray in Your name,
Amen
"I can do everything through Him who gives me strength." Philippians 4:13
Posted By: Cowboys Fan
Re: URGENT PRAYERS NEEDED FOR NATALIE - 02/13/05 05:50 PM
Amen.
Posted By: Princess Leia
Re: URGENT PRAYERS NEEDED FOR NATALIE - 02/13/05 11:14 PM
Natalie had an ultrasound today that showed positive results, there is blood flow (good flow actually) in the hepatic artery. She is still heavily sedated, since she is still "open." Please keep praying.
I have the information where they are staying or it was posted on Natalie's website today.
Posted By: Citrus
Re: URGENT PRAYERS NEEDED FOR NATALIE - 02/13/05 11:59 PM
Praying and praying and praying and praying and praying
Posted By: Princess Romeo
Re: URGENT PRAYERS NEEDED FOR NATALIE - 02/14/05 06:39 AM
Prayers continue.
And God saw every thing that he had made, and, behold, it was very good.
Posted By: Patsy Cline
Re: URGENT PRAYERS NEEDED FOR NATALIE - 02/14/05 01:25 PM
Continued prayers!
Posted By: Cat Woman
Re: URGENT PRAYERS NEEDED FOR NATALIE - 02/14/05 01:35 PM
Continued prayers here too!
Posted By: P*Q
Re: URGENT PRAYERS NEEDED FOR NATALIE - 02/14/05 01:40 PM
Same here, praying continues.
Posted By: Retired DQ
Re: URGENT PRAYERS NEEDED FOR NATALIE - 02/14/05 01:58 PM
I hope it all gets better for them, really quick!! What a terrible ordeal for all of them.
Posted By: deppfan
Re: URGENT PRAYERS NEEDED FOR NATALIE - 02/14/05 02:30 PM
Prayers coming your way, now and forever.
Posted By: IUalum
Re: URGENT PRAYERS NEEDED FOR NATALIE - 02/14/05 02:46 PM
Ditto.
Posted By: Okie Dokie
Re: URGENT PRAYERS NEEDED FOR NATALIE - 02/14/05 03:32 PM
I will keep them both in my prayers. This family has been through so much. I can't even imagine.
Posted By: Anonymous
Re: URGENT PRAYERS NEEDED FOR NATALIE - 02/14/05 03:34 PM
Amen.
Posted By: Bones
Re: URGENT PRAYERS NEEDED FOR NATALIE - 02/14/05 04:38 PM
All are in my thoughts & prayers. This family has been through so much.
Posted By: GreatBlue
Re: URGENT PRAYERS NEEDED FOR NATALIE - 02/14/05 05:06 PM
Leia, Thanks so much for keeping us updated. I'm glad the news is a little better today. I'm continuing to pray.
Posted By: corkygirl
Re: URGENT PRAYERS NEEDED FOR NATALIE - 02/14/05 05:08 PM
Prayers for the entire family, the ups and downs are so hard to live with.
God, please touch them with our love and concern. Amen
Posted By: Countess Kiwi
Re: URGENT PRAYERS NEEDED FOR NATALIE - 02/14/05 07:50 PM
Prayers are continuing in Idaho.
Posted By: Viking Princess
Re: URGENT PRAYERS NEEDED FOR NATALIE - 02/14/05 07:56 PM
Tears of joy and hope for the entire family
Posted By: VioletRose
Re: URGENT PRAYERS NEEDED FOR NATALIE - 02/14/05 08:04 PM
Thoughts, Love & Prayers from California.
Posted By: Princess Leia
Keep praying for Natalie - 02/15/05 03:53 AM
Tonight's update:
Natalie was taken back into surgery around 5pm because heart rate rose and her blood pressure dropped. She also began bleeding out her JP drain. Her abdomen was getting so distended that her kidneys were having a hard time keeping up. During the surgery, they removed many blood clots and her kidneys were able to begin producing urine. The hepatic artery is still good with blood flow. They say this is a normal set back, but aren't sure what caused the bleed - possibly from the heparin used to thin her blood after the last surgery. She was out of surgery around 7pm.
Please keep the prayers coming - unfortunately, the rollercoaster ride isn't over yet.
Posted By: Skittles
Re: Keep praying for Natalie - 02/15/05 12:02 PM
My thoughts and prayers are with you.
Posted By: Patsy Cline
Re: Keep praying for Natalie - 02/15/05 02:25 PM
Oh my goodness. How much more can this precious little girl and family take? I will continue to keep them all in my prayers.
Posted By: Quadspapa
Re: Keep praying for Natalie - 02/15/05 02:54 PM
God bless you little Natalie, and your precious family
Posted By: deppfan
Re: Keep praying for Natalie - 02/15/05 06:04 PM
Quote:
God bless you little Natalie, and your precious family
AMEN
Posted By: corkygirl
Re: Keep praying for Natalie - 02/15/05 11:19 PM
Quote:
Quote:
God bless you little Natalie, and your precious family
AMEN
Amen, Amen, Amen!! Warm thoughts flying out to you all.
Posted By: Pup
Re: Keep praying for Natalie - 02/16/05 01:50 AM
Kids are tough and they don't know how to give up. She's doing the only thing she knows how to do and that is survive. Hope Mom is holding her own. Prayers from Oklahoma.
Posted By: Princess Leia
Better Day for Natalie - 02/16/05 02:58 AM
Today's email has much better news
Natalie is stable and had a CT scan today. The blood flow is good and there appears to be minimal damage to her new liver from the blockage over the weekend. The doctors are still assuming that the bleed yesterday was from the heparin. Her liver function numbers are improving. Her incision is still open and will most likely remain that way until Friday.
Becca's JP drain was taken out today and she is feeling much, much, much better.
Prayers are being answered. He is listening - let's keep praying.
God is good.
All the time.
Posted By: deppfan
Re: Better Day for Natalie - 02/16/05 01:53 PM
WONDERFUL! The power of prayer is so sweet. I pray that the Lord will continue to heal Becca and the Bear.
Posted By: Retired DQ
Re: Better Day for Natalie - 02/16/05 02:04 PM
Posted By: TTC Queen
Re: Better Day for Natalie - 02/16/05 03:45 PM
. . . .and more prayers from Oklahoma.
Posted By: Okie Dokie
Re: Better Day for Natalie - 02/16/05 03:49 PM
Quote:
. . . .and more prayers from Oklahoma.
And more!!!
Posted By: Bones
Re: Better Day for Natalie - 02/16/05 04:45 PM
Great news!
Posted By: Patsy Cline
Re: Better Day for Natalie - 02/16/05 08:51 PM
Yahoo!
Posted By: corkygirl
Re: Better Day for Natalie - 02/16/05 10:07 PM
YEA!!!!! Prayers answered!!!!
Posted By: QCL
Re: Better Day for Natalie - 02/16/05 10:56 PM
Hi all!!!
Thanks ever so much for all the prayers and encouragement!!!
We are holding steady. The good news is that her liver function tests ARE AWESOME!! AST (one enzyme) is elevated but the rest of the numbers are NORMAL, like normal kid normal. Prayers are being answered. She is still "open" and will probably be until Friday.
I (Becca) got my JP drain out yesterday WOOHOO!!! I cannot tell you how aweful it hurt to get it out, but now I am feeling 100% better than over the weekend. 7 days after surgery and I'm walking back and forth from the hospital to Kohl's house.
I don't know how often I'll get back here to post, but thanks again and God Bless you all!!!!
Posted By: hmdagal
Re: Better Day for Natalie - 02/16/05 11:01 PM
Great to hear that you're doing so well, so soon. Natalie will hopefully be running around like any other toddler this summer!
Posted By: Countess Kiwi
Re: Better Day for Natalie - 02/16/05 11:01 PM
That is such wonderful news!!! Give Natalie a kiss on the cheek for all of us! I will continue to keep Natalie and your family in my prayers.
Posted By: CRAatBOK
Re: Better Day for Natalie - 02/17/05 03:36 AM
Becca, glad you are feeling better. And I am glad Natalie is doing better too. Just think, she will soon be up and running around and you will be worn out from trying to keep up with her.
Posted By: Patsy Cline
Re: Better Day for Natalie - 02/17/05 01:34 PM
Becca, thanks for the personal update! I am so glad you feeling better. I am very excited to learn that Natalie's liver is testing "normal". How awesome is that? I will continue to keep all of you in my prayers.
Posted By: Retired DQ
Re: Better Day for Natalie - 02/17/05 01:39 PM
Becca, that's great!
Posted By: Cat Woman
Re: Better Day for Natalie - 02/17/05 01:45 PM
That's great news!!!
Posted By: deppfan
Re: Better Day for Natalie - 02/17/05 02:01 PM
Posted By: Angel Eyes
Re: Better Day for Natalie - 02/17/05 03:08 PM
Wonderful news! We all hope and pray that things continue to go well
Posted By: starfish
Re: Better Day for Natalie - 02/17/05 06:09 PM
I'll continue to pray for more good news!
Posted By: KSK
Re: Better Day for Natalie - 02/17/05 06:49 PM
WOW GREAT NEWS!!!!!! The talents of healthcare professionals and the power of prayer. AWESOME!!
Posted By: HRH Dawnie
Re: Better Day for Natalie - 02/17/05 08:46 PM
Becca thanks for the quick visit! We're so glad to hear good news.
Transplants are complicated things. When my friend had her stem cell harvest for transplant she was given too much heparin and it caused a terrible bleed...scaring the life out of us as much as her. Her incisions at the neck and the wrist just wouldn't stop and we had to rush her back in, but just as with little Natalie, it stopped after the drug was out of her system. Scary!!! But curable fortunately
I hope this is teh case with little bear
because that means it won't be a problem again.
We're sending love and prayers from all over for bear and her family!!! You all are hero's in our books!!!
Posted By: Citrus
Re: Better Day for Natalie - 02/17/05 09:19 PM
Becca - I am just so happy to hear this. (!) I know you but don't know you... Thank you allowing me to share in your daily miracles. I continue to send love, prayers, and good wishes to your family.
Posted By: corkygirl
Re: Better Day for Natalie - 02/17/05 09:27 PM
Becca, thanks for the update and such good news in this update!!! You and that little one are in my thoughts and prayers.
Posted By: Walleye Woman
Re: Better Day for Natalie - 02/17/05 10:52 PM
Becca, so glad to hear the good news. I'll keep you, Natalie and your family in my thoughts and prayers.
Posted By: Nanwa
Re: Better Day for Natalie - 02/17/05 11:16 PM
May God bless you both and the doctors too! Praise Him for giving those doctors the schmarts, skills, and compassion to do the job!
Posted By: QCL
Re: Better Day for Natalie - 02/18/05 03:01 PM
We go back in for surgery today - planned (around 1pm).
She has been "open" since Saturday and I think that they are going to try to close her up today. Please pray! The last time they did this she developed a clot in her hepatic artery due to too much pressure.
Posted By: Princess Leia
Re: Better Day for Natalie - 02/18/05 03:10 PM
Prayers coming. Thanks for the update!
Posted By: Skittles
Re: Better Day for Natalie - 02/18/05 03:11 PM
You have them, Becca.
Posted By: Just Suzy
Re: Better Day for Natalie - 02/18/05 03:13 PM
I have never submitted a prayer online before. I've read this entire thread and I'm very moved by the courage and faith that is demonstrated here. Momofnataliebear, I will say a prayer for you and your daughter. I don't have your depth of spiritual strenghth but I want to help in any small measure that I can. Please, God, help this woman and her child.
Posted By: Bones
Re: Better Day for Natalie - 02/18/05 03:18 PM
Natalie is in my thoughts and prayers!
Posted By: Okie Dokie
Re: Better Day for Natalie - 02/18/05 04:43 PM
I will say an extra prayer for all of you today.
Posted By: corkygirl
Re: Better Day for Natalie - 02/18/05 05:59 PM
It's nearly 1:00 here in the Chicago area and my thoughts and prayers are flying to Natalie and the family!!!!
Posted By: Silent Valley
Re: Better Day for Natalie - 02/18/05 06:33 PM
Prayers from Texas that not only will Natalie quickly heal, but she THRIVE! Also prayers of thanksgiving for the wonderful doctors and caregivers. Extra prayer for the whole family - for courage, endurance and grace.
Posted By: deppfan
Re: Better Day for Natalie - 02/19/05 03:22 PM
May the Great Healer be with you and give you strength. (Both of you!)
Posted By: Princess Leia
Natalie's doing better - 02/20/05 09:24 PM
Natalie is still doing well. They didn't completely close her completely on Friday, but did stretch her a bit and the incision isn't as open. she's responding well to this and her liver numbers are staying great - Some were even normal
They are starting to wean her from the respirator and she is doing even more breathing on her own. They're going to start giving Natalie some formula through her NG tube through her nose rather than through her IV. This is progress. Hopefully, if all continues well, on Tuesday they will take her back to surgery to try to close her completely.
Posted By: Pup
Re: Natalie's doing better - 02/20/05 09:28 PM
Very cool, Leia. Thanks for the update!!
Natalie and Becca, you're on the right path...keep it up!!
More prayers from Oklahoma.
Glad to hear both are on their way to recovery. So many prayers for the entire family. Becca, your family has been added to my Mom's church prayer list of over 300 families. That's a lot of prayers eh?
Posted By: deppfan
Re: Natalie's doing better - 02/22/05 03:05 PM
Thank you for the update. We are still praying for them.
Posted By: Bones
Re: Natalie's doing better - 02/22/05 03:08 PM
I am so happy things are going well. Continued prayers for Natalie.
Posted By: HRH Dawnie
Re: Natalie's doing better - 02/22/05 07:27 PM
Becca I'm so happy to continue to hear this great news. Thank's for sharing your personal journey with us. It's a wonderful thing to in a very small way share a part of this lovely child's recovery! We're praying for you and Natalie again today, hoping that all goes well in surgery with the closing!
Posted By: QCL
Re: Natalie's doing better - 02/22/05 10:49 PM
Today, 2 kids here at the hospital received livers!!! But that means that Natalie's surgery to close her up scheduled for today was bumped to tomorrow.
Currently she is at IR (interventional radiology) to get a new PICC line put in. Her direct line (at her neck) started coming out and the site appears to be infected. Ick! This shouldn't be a huge problem though, since she's on enough antibiotics to cure a HORSE.
She is doing GREAT!!! Her liver numbers look AWESOME!!! She loves playing with the "My little pony's" that her mom got her (in Happy Meals from McD's). It is so cute. She is wearing immobilizers on her arms, so her arms are stuck in a straight position. So she is just passing her ponyies back and forth between her hands. Poor kid.
I'm doing quite well. My incision feels good and is healing up fast.
Posted By: Cowboys Fan
Re: Natalie's doing better - 02/22/05 11:04 PM
So nice to hear good news. Prayers and good thoughts continue to come your way.
Posted By: deppfan
Re: Natalie's doing better - 02/22/05 11:08 PM
Posted By: Truffle Royale
Re: Natalie's doing better - 02/22/05 11:11 PM
Quote:
Goosebumps ...How wonderful!
me too!!! Still praying for a speedy complete recovery followed by glorious pictures from a second birthday party!
Posted By: Retired DQ
Re: Natalie's doing better - 02/23/05 01:25 PM
That's awesome, Becca. Glad to hear it.
Posted By: Cat Woman
Re: Natalie's doing better - 02/23/05 01:49 PM
That's great news!! Keep it coming!
Posted By: Okie Dokie
Re: Natalie's doing better - 02/23/05 03:13 PM
Wonderful news!!!! We are all so excited for you guys.
Posted By: QCL
Re: Natalie's doing better - 02/23/05 04:06 PM
Wednesday, February 23, 2005 9:27 AM CST
Natalie had another good night last night. She got a new PICC line in her femoral artery yesterday. They then removed the PICC line in her arm and the Artery line in her hand. So she's left with a subclavian line (in her chest) and a femoral line.
The surgeons were busy yesterday, they finished up with the second transplant around 2am today. It looks like Natalie's surgery to close her will be around 1pm today.
Prayers are appreciated.
BTW, they have done 9, that's right 9 transplants in the last 2 weeks (beginning with us)!!! 9 little lives have been saved. How wonderful.
Posted By: Anonymous
Re: Natalie's doing better - 02/23/05 04:12 PM
What wonderful news!
Still praying for you and the Bear.
Posted By: RR Joker
Re: Natalie's doing better - 02/23/05 05:11 PM
Great news for all!!!
Posted By: corkygirl
Re: Natalie's doing better - 02/23/05 05:26 PM
Wonderful news!!! Continued thoughts and prayers for all of you
Posted By: Princess Leia
Re: Natalie's doing better - 02/23/05 06:10 PM
So great to know you're both doing well. Prayers that today's surgery is swift and without complications.
Posted By: HRH Dawnie
Re: Natalie's doing better - 02/23/05 06:51 PM
Thanks for the update Becca. Nine lives! How wonderful is that news in the midst of all the other bad news we hear daily!
Posted By: deppfan
Re: Natalie's doing better - 02/23/05 08:56 PM
Posted By: Truffle Royale
Re: Natalie's doing better - 02/24/05 12:48 AM
Nine?!!! If that doesn't get everyone of us to make sure everything that can be donated is, I don't know what will!
More prayers for you, the bear and the other 8 little ones.
Posted By: QCL
Re: Update - 02/25/05 08:24 PM
Friday, February 25, 2005 1:18 PM CST
Natalie's liver numbers continue to improve, slowly. She is still on the vent.
Every morning she has an X-Ray to look at her lungs. Today's X-ray looked "wet." The theory is that after closing her up, more pressure is being put on her lungs and she's not able to take deep breaths (this is not uncommon). So they are giving her a little lasix (diuretic) to help get rid of the excess fluid.
Also, this morning they stopped her feeds. She hadn't had a poopy diaper in 2 days. And her tummy was getting bigger as things "backed up." An hour after they took her food away she gave her nurse a poopy diaper - that'll show them.
At this point we're not going forward, but we're not moving back either. It's frustrating.
Posted By: deppfan
Re: Update - 02/25/05 08:36 PM
"Come unto Me, all ye that labor and are heavy laden, and I will give you rest. Take my yoke upon you, and learn of me; for I am meek and lowly in heart: and ye shall find rest unto your souls. For My yoke is easy and My burden is light." Matthew 11:28-30.
Hold on and keep the faith, Becca. You are strong and I'm betting on Natalie to come through like the trooper she is. Lots of prayers still coming your way.
Quote:
"Come unto Me, all ye that labor and are heavy laden, and I will give you rest. Take my yoke upon you, and learn of me; for I am meek and lowly in heart: and ye shall find rest unto your souls. For My yoke is easy and My burden is light." Matthew 11:28-30.
Nicole C. Mullen has a beautiful song called "Come Unto Me" on her Talk About It CD based on this passage.
It's one of my favorites (the whole CD is great).
Are you looking for someone to be gentle
With your broken heart your shattered dreams
And are you searching for someone who'll be faithful
To you no matter what life brings
Well I know the maker of the storm the sunrise
He is both the lion and the lamb
He is strong enough to shake all earth and heaven
Yet meek enough to take me as I am.
He says come unto to me
All who are weary
And I will give you rest
Bring what hurts
Bring your scars
Bring the load that you carry
And I will give you rest
Are the clouds above your head oo so heavy
Bursting with showers of despair
And do you struggle under more then you can carry
Has life given more then you can bear
And would you like to trade your failures in for victories
Like piles of ashes in from piles of gold
And can you fall down like a child who is helpless
So he can pick you up and make you whole
He says come unto to me
All who are weary
And I will give you rest
Bring what hurts
Bring your scars
Bring the load that you carry
and I will give you rest
He says come unto to me
All who are weary
And I will give you rest
Bring what hurts
Bring your scars
Bring the load that you carry
And I will give you rest
Becca, we're all still praying for you, Jason and the "Bear". A priest once told me that no where in the Bible does it say the Lord would take away our pain. It mearly says He will walk along with us and carry us through.
Heavenly Father, please place your healing hands on little Natalie and provide the comfort that her mom & dad are seeking. Help them to feel you love and support when they reach out to you. We know you are here and we thank you.
We lift them up to you.
In Your name,
Amen
Posted By: deppfan
Re: Update - 02/25/05 09:33 PM
AMEN
Posted By: corkygirl
Re: Update - 02/25/05 11:37 PM
Thanks for the update, Natalie has been in my thoughts these last few days. Keep on truckin!!!
Posted By: Citrus
Re: Update - 02/26/05 10:37 AM
Still prayin' out here in California!
Posted By: Anonymous
Re: Update - 02/27/05 08:24 PM
Sunday, February 27, 2005 2:00 PM CST
Oh what a wonderful day!!!
Dr. Superina (her surgeon that I swear walks on water) came by today on the morning rounds. They have decided to agressively wean Miss Natalie OFF of the vent. They have slowly begun the process today and plan on pulling it out tomorrow. (We hope she agrees with this.) Yesterday they started feeding her again, but just with pedialight. Dr. Superina said that he thinks she can handle regular food. So they have started giving her Isomil though her NG tube. But again, very slowly, only 5 ml an hour, then moving up 5 ml every 3 hours if she tolerates it well.
She SAT UP TODAY!!! Daddy and I helped her. We placed blankets next to her - to help prop her up - she's so weak. But she had a wonderful time playing with her see-n-say and sitting there for a little while!!!
Thanks all for your words of encouragement. We're praying for more good days to come!
Posted By: QCL
Re: Update - 02/27/05 08:25 PM
Oh crap...that was me with the update.
BTW - right now her and Daddy are watching the Nextel Cup race. It's too cute - looking at them both sitting there staring up at the TV. What a pair they make.
Wonderful news! Hang in there.
Posted By: HRH Dawnie
Re: Update - 02/27/05 09:32 PM
LOL Becca we sort of guessed that was you! Thanks SO MUCH for sharing that great news with us. I needed that smile today
Posted By: corkygirl
Re: Update - 02/27/05 11:06 PM
What good news, isn't it amazing how much those little things can mean to us!!! Thanks for keeping us all up todate and be careful in the snow tonight.
Ditto the thanks for taking time on a gloomy Sunday to give us reason to say a thank you prayer and smile.
Posted By: Pup
Re: Update - 02/28/05 03:17 AM
Brought a tear, Becca. Thanks and keep it up!!
Posted By: Citrus
Re: Update - 02/28/05 06:00 AM
It's fantastic info!
(I'm doing the same thing that corkygirl's avatar is doing just above my post!
)
Posted By: Skittles
Re: Update - 02/28/05 12:12 PM
Thanks for keeping us posted with the excellent news.
It is so good to hear of your progress. Keep it up! You all are still in our prayers.
Posted By: Okie Dokie
Re: Update - 02/28/05 02:25 PM
Wonderful news!!!!
We will keep you and your Bear in our prayers.
Posted By: deppfan
Re: Update - 02/28/05 04:19 PM
That is so wonderful! I'm so glad that things are going so well. She is blessed to have parents who are so strong! Hang in there Becca and tell Jason we are all pulling for you guys.
Posted By: QCL
Re: Update - Rejection? - 02/28/05 05:55 PM
Monday, February 28, 2005 11:35 AM CST
Grrr...As with all things, what goes up must come down and such is the roller coaster of our lives.
The doctors are still planning on pulling the vent today. So that's a good thing. Natalie's LFTs (Liver Function Tests) rose over the weekend - that's not a good thing. She has an ultrasound scheduled for later today. The doctors are thinking that this could be a mild case of rejection.
The "R" word. No parent of a transplant kid wants to hear it. But they have told us that it can be easily controlled with a few days of steroids.
After the ultrasound, we'll know more. They may do a biopsy tomorrow.
Posted By: Retired DQ
Re: Update - Rejection? - 02/28/05 05:57 PM
My Dad (kidneys), has had mild rejections in the past. The steroids always worked. She will be OK.
Posted By: Princess Leia
Re: Update - Rejection? - 02/28/05 06:46 PM
Becca, I just saw the update on her website. Grrr is right. Prayers still coming.
Posted By: RVFlyboy
Re: Update - Rejection? - 02/28/05 07:37 PM
Having been on the roller coaster too for some time now, I can certainly relate. Hang in there, Becca. Better days are to come. I am really praying that they will be able to control any rejection and that Natalie will continue to improve. I also pray for energy, peace, and strength for you and your husband. I do pray that your recovery is going well still.
Posted By: Bones
Re: Update - Rejection? - 02/28/05 11:41 PM
I am praying that all goes well. Stay stong!
Posted By: CRAatBOK
Re: Update - Rejection? - 03/01/05 02:03 AM
Becca, Hope you were able to get a picture of them together. Sorry about the small set back but it sounds like the progress is outweighing it. Keep on smiling.
Posted By: Princess Leia
Better News for Natalie - 03/01/05 09:42 PM
This is from her website today:
This morning they decided to repeat the ultrasound from yesterday. Something looked funny and after a second look, it was determined that all was fine.
Her liver numbers went down. Most likely this is explained by her having a mild case of rejection followed with the steroids the gave her prior to pulling the vent. It is believed that the steriods helped to get the rejection under control. At least that is the theory for now.
We'll continue to monitor her LFTs.
She just drank 8oz of apple juice and happily played with her new Fisher Price Castle this morning!!!
Posted By: deppfan
Re: Better News for Natalie - 03/01/05 09:46 PM
Posted By: Beagles22
Re: Better News for Natalie - 03/01/05 09:47 PM
That is wonderful news! I am glad to hear she is feeling better and that maybe our prayers have helped!
Posted By: Nanwa
Re: Better News for Natalie - 03/01/05 10:41 PM
I am praying that things continue in such a positive way!
Posted By: corkygirl
Re: Better News for Natalie - 03/01/05 10:49 PM
"just drank 8oz of apple juice and happily played with her new Fisher Price Castle this morning!!!"
That sounds nice and it's amasing how these small steps seem like giant ones!!! Continued prayers and good thoughts. (And I was a day off on the snow
)
Posted By: Retired DQ
Re: Better News for Natalie - 03/02/05 01:12 PM
Great news, I just knew those steroids would help!!!
Posted By: QCL
Re: Better News for Natalie - 03/02/05 06:51 PM
Right now Natalie is running a fever of 102. But her LFTs continue to improve. She is also starting to get puffy as a side affect of the steroids.
For breakfast she ate 1/2 of a breakfast sausage - we're taking baby steps on the food thing.
Today's plan of action looks like this:
-Do cultures of blood to look for a bacterial infection (she's been on anti-viral meds up to now)
-Pull her subclavian line since it's been in for 21 days
-SEND US TO 6 WEST!!!
That's right, we're getting out of the ICU!!! WOOHOO!
I'll make changes to the page once I know the room number. Hopefully the move will be today...
Posted By: Okie Dokie
Re: Better News for Natalie - 03/02/05 06:53 PM
I'm so happy you all are getting out of ICU!!! That's great news.
Posted By: Princess Leia
Re: Better News for Natalie - 03/02/05 06:53 PM
Such great news - we love the first hand updates!!! Prayers still coming.
Posted By: HRH Dawnie
Re: Better News for Natalie - 03/02/05 07:15 PM
Wonderful news! She's still in our prayers of course, but it's so nice to see that she's continuing a strong progress!!!
Posted By: deppfan
Re: Better News for Natalie - 03/02/05 07:22 PM
Posted By: Citrus
Re: Better News for Natalie - 03/02/05 07:30 PM
That is so wonderful and special! Goodbye ICU...
Posted By: Angel Eyes
Re: Better News for Natalie - 03/02/05 08:24 PM
What wonderful progress for such a tough little girl. We are all still praying here.
Posted By: Princess Leia
Re: Better News for Natalie - 03/04/05 01:51 PM
This is from Natalie's website (I love being the "bear"er of happier news):
What a very busy day we all had. First things first, she kept daddy up ALL night and then she took a 5 hour "nap" today. Poor daddy. He's sleeping at the hospital with her and I am here at the Kohl's house.
Natalie is eating like a horse (well, a little pony anyway)! For dinner she had some cut up pieces of chicken, 3 smily-face fries, applesauce, 2 chicken nuggets (of mommies), a few french fries, 4 cookies, and 3 ounces of apple juice to wash it down! Gotta' love those steroids!!!
Her LFTs went back up today, so a liver biopsy was done at 4 pm. This was to confirm rejection. An hour prior to the biopsy she had a new PICC line placed and her femoral line removed. Her PICC line, it should be said, was done WITHOUT sedation, just a local to numb the site. Her nurses and the docs said that they've never seen a kid like her. She didn't cry! Oh my sweet Natalie, how strong you are. Once she recovered from these procedures she was back to her normal self.
About the rejection: They went ahead and increased her steroids and they tell us that this should get the rejection under control. She was given a dose of steroids prior to having the vent pulled and this helped, but she'll need a few more days.
Posted By: P*Q
Re: Better News for Natalie - 03/04/05 02:06 PM
Great news, glad to hear of the progress.
Posted By: Bones
Re: Better News for Natalie - 03/04/05 03:14 PM
You have a very strong little girl there! I will continue to pray for all of you.
Posted By: deppfan
Re: Better News for Natalie - 03/04/05 04:19 PM
What an incredible little one you have. I teared up when I read what the doctors said. God Bless you guys. I'm praying for bright days. (and restful nights....hang in there Jason.
)
Posted By: hmdagal
Re: Better News for Natalie - 03/04/05 04:56 PM
Hospitals are hard to sleep in to start with. It must be really tough with a restless child!
It's great that she's doing so well.
Posted By: Countess Kiwi
Re: Better News for Natalie - 03/04/05 06:36 PM
Every time I read the updates they bring tears to my eyes. She is such a tough little bear. Hang in there and we are thinking of you.
Posted By: HRH Dawnie
Re: Better News for Natalie - 03/04/05 10:36 PM
I can almost picture her, you've shared so much with us. Thank you, this is a nice way to start off the weekend!
Posted By: CRAatBOK
Re: Better News for Natalie - 03/05/05 12:27 AM
I can't believe how tough this kid is. I could never go through what she has been through. Once she is through all of this, nothing will phase her.
Posted By: QCL
Re: Better News for Natalie - 03/05/05 03:10 AM
That's what I am afraid of!
Here's today's news...from the webpage sorry that I'm getting lazy.
Friday, March 4, 2005 8:45 PM CST
It turns out that the biopsy taken yesterday does indeed show rejection. That's OK, though, as Natalie's LFTs improved today after one REALLY REALLY big dose of steroids last night. So we'll continue this stronger dose until the rejection is no more.
Lots of visitors today...Natalie's Grandma and Grandpa Dempsey and Becca's cousin Shane and his wife Tina stopped by to see the Princess!
Natalie is doing well. She spent the day playing with toys on the floor and as hard as we tried to keep her on the sterile playmat, she had other ideas and crawled all over the room!
GOOD NEWS...I always wait until the end to do this...If Natalie continues to do well, we'll be outta' here on Tuesday!!! (Out of the hospital anyway, and discharged to Kohl's house for a few weeks of monitoring.) Pray that all goes well.
Posted By: Pup
Re: Better News for Natalie - 03/05/05 04:51 AM
I don't know what to say, Becca. That is INCREDIBLE news!!
Posted By: deppfan
Re: Better News for Natalie - 03/05/05 05:06 PM
Wow! I'm so excited for you all.
Posted By: Princess Leia
Re: Better News for Natalie - 03/05/05 08:55 PM
There's some new pictures on Natalie's website.
Posted By: Truffle Royale
Re: Better News for Natalie - 03/06/05 02:18 AM
Absolutely fabulous!!!
Do you all realize that our little bear was just getting listed a mere four months ago?! This is amazing!
Keep it going, little one.
Posted By: QCL
Re: Better News for Natalie - 03/07/05 04:53 AM
I hate to bring you all down on the roller coaster with me, really I do...
Rotavirus - there's another icky "R" word.
Miss Natalie is again sick. How she contracted this is anybody's guess - but hospitals are not always the cleanest place to be.
She's back to getting IV fluids, mostly because we've been hard pressed to get her to keep anything down. She kept daddy - who, bless his heart, has been staying with her at the hospital - up ALL night last night. But she hasn't gotten sick since 9 this morning, so we're hoping that all is getting better.
It freaked us out a bit, since all of her meds are now oral.
She's on 11 meds, given a total of 25 times a day, so we're really hoping that this virus gets better soon. Even though she's immunosuppresed, she sould be able to fight it.
Posted By: Pup
Re: Better News for Natalie - 03/07/05 05:04 AM
The good news, Becca, is that once a child contracts and beats a rotavirus, they never get it as severely as they originally did. She's being tested, isn't she! Well, she and her parents, of course. Keep fighting alongside the little angel and she'll keep on fighting as she has been. You are doing a wonderful job, it seems. More prayers just went out to you from Oklahoma.
Jeremy
Posted By: Nanwa
Re: Better News for Natalie - 03/07/05 01:18 PM
B, I am praying that all these ups and downs turn into all ups! May God give Natalie His healing touch.
Posted By: Cat Woman
Re: Better News for Natalie - 03/07/05 03:30 PM
Prayers still coming from me, too!
Posted By: corkygirl
Re: Better News for Natalie - 03/07/05 07:24 PM
I am getting caught up with the updates today and what a rollercoaster ride it has been. The three of you are in my prayers daily.
Posted By: CRAatBOK
Re: Better News for Natalie - 03/07/05 08:10 PM
I just went to the web site and looked at the pictures. How scary that must of been with all the tubes and wires, she looks so small. Tell that old virus to get the Hell out of there and leave that precious baby alone. She needs to get well so she can drive her mom and dad crazy.
Posted By: QCL
Re: Better News for Natalie - 03/07/05 08:30 PM
The roller coaster is starting to climb up again.
Rotavirus - a blessing in disguise?
Long story short - we may be going home tomorrow or Wednesday - to our own home!!!!!
During the doctor's rounds it was stated to us that there is no longer a medical need for Natalie to be staying here. They would like to discharge us to Kohl's house due to the driving distance between Byron and Chicago, but Natalie has to be Rotavirus-free for 3 weeks in order to not spread the virus to other kids at Kohl's house.
So it looks like home is a better option.
Posted By: Busy Bee, CRCM
Re: Better News for Natalie - 03/07/05 08:35 PM
I've been praying for all of you during this test of faith. I haven't posted to this thread, but I am praying.
I just went to your website and viewed the photographs. It makes your situation so much more real. Many more prayers will be said for you and your family.
Prayers from California continuing to pour your way. May God continue to work miracles in your lives.
I just read the Prayer of Jabez and Beyond Jabez....if you have time it might be encouraging to you as well.
Posted By: deppfan
Re: Better News for Natalie - 03/08/05 02:56 PM
Bless you all. I can't even imagine what all you have been through with your sweet girl. Every time I think of you all, I say a prayer. I stared at the pictures, trying to imagine how I would feel if that was my little girl, and I am amazed at your faith, strength and courage. I can't wait to see the pictures of Natalie at home, playing and laughing when all this is over. God Bless you all, and know that there is a permanent place in my heart for you guys.
Posted By: Bengals Fan
Re: Better News for Natalie - 03/08/05 03:02 PM
I'm so excited to see all the good things finally happening. God bless all of you!
Just think, you will have less than a decade of normacy between this crisis and the next.... PRETEEN and TEENAGE DAUGHTERHOOD!
Posted By: Angel Eyes
Re: Better News for Natalie - 03/08/05 03:30 PM
HOME - what a wonderful word. I hope that you are going there as I write this. Best of luck with everything. You are such a blessed family
Posted By: corkygirl
Re: Better News for Natalie - 03/08/05 05:12 PM
HOME HOME HOME - what could sound or be better!! You have all been through so much and your faith has sustained you. Hopefully we have all helped by keeping you all in our prayers and thoughts, we will all continue to do that going forward. Give that little one a hug and kiss from me.
Posted By: Retired DQ
Re: Better News for Natalie - 03/08/05 05:46 PM
Great news!
Posted By: KSK
Re: Better News for Natalie - 03/08/05 06:41 PM
There's no place like HOME! (Click) There's no place like HOME! (click) There's no place like HOME! (click).
Godspeed and our prayers are with you all.
Posted By: QCL
Re: Better News for Natalie - 03/08/05 06:54 PM
What a roller coaster...it's like a bad theme now.
We're still here for a little while. This morning we were told that we could go home, so Jason started packing up all our stuff.
Then a few hours later, we found out that her meds (which we'll need to go home) did not arrive today like they were supposed to and that the doctors changed their minds - they'd like her to stay for a little while longer. Their reason for this is that she's still pooping (due to the Rotavirus) WAY too much. They are afraid that she's going to get too dehydrated if they send us home - even though she's no longer on IV fluid and she's drinking fine. Sigh...we're starting to get frustrated. Up to now I've maintained a pretty positive attitude. But she's been through so much already and now this *&$# (insert explitive) virus.
Posted By: Princess Leia
Re: Better News for Natalie - 03/08/05 07:05 PM
Gosh, Becca, it seems like you guys have been through the wringer. We're still lifting you all up and praying that this roller coaster ride ends soon. Like someone said (I think it was elena), we can't wait to see the pictures of Natalie running around!
Posted By: KSK
Re: Better News for Natalie - 03/08/05 07:07 PM
Surely this is just a temporary delay. As anxious as you are to finally take your SweetPea home, take a deep breath a relax for a moment. The talented hands of the entire medical team that have attended to your medical needs must have a concern for Natalie's health.
You've trusted the medical team up to this point - don't lose faith in them now. Also know that you have whole bunch of BOLers out here that have expressed their faith and will continue to keep you in their prayers.
Posted By: Anonymous
Re: Better News for Natalie - 03/08/05 07:21 PM
I can't imagine your disappointment. I am so sorry you can't go home yet but am relieved they are going to monitor her a little while longer. I was really surprised when they were going to send you home because when my twins had rotavirus they were in the hospital for two days and they had no other medical issues. I am glad they are going to monitor her because they can get so dehydrated even when they are drinking and on top of everything else she is already enduring, it's probably good in the long run. Hang in there, our prayers and thoughts continue to be with you. Take Care!
Posted By: Citrus
Re: Better News for Natalie - 03/08/05 08:46 PM
Becca - Hang tough - you'll be home soon!
There's a light at the end of the tunnel - and guess what? We're all there - clapping and cheering and waiting for you!!
Posted By: Quadspapa
Re: Better News for Natalie - 03/08/05 08:49 PM
Quote:
Becca - Hang tough - you'll be home soon!
There's a light at the end of the tunnel - and guess what? We're all there - clapping and cheering and waiting for you!!
Ditto, 100.00%
Posted By: starfish
Re: Better News for Natalie - 03/08/05 08:57 PM
I know how frustrating it is to think you're going home, pack up, and then be told you need to stay. Be strong and know that you will be going home soon. I admire the strength that you've exhibited for your daughter and your family! You continue to remain in my daily prayers!
Posted By: Truffle Royale
Re: Better News for Natalie - 03/08/05 09:02 PM
Better the doctors keep her under their watchful eyes a bit longer than shoo you out the door too soon.
Give yourselves a break and order a nice dinner brought in from one of the million restaurants down there. A little bit of good food may help shore you up again. Bet Nattie would love french fries about now too.
Know that we're still here praying for the ride to level off soon.
Posted By: HRH Dawnie
Re: Better News for Natalie - 03/08/05 10:00 PM
Give yourself and hubby a hug from BOL and then our little bear. Do take that break bjp suggests. You need it Becca
Better she be under safe eyes and ready for instant help, than be far away, so while it's disapointing, it's for the best, because, as we all keep saying, we need her healthy as a horse so we can see the screaming meammie vidios
Nothing better than a healthy little girl yelling MINE MINE MINE or NO NO NO or I WANNNNNNTTTTT
heh heh
Posted By: Beagles22
Re: Better News for Natalie - 03/09/05 04:52 PM
Ditto @ bjp's comment on better to be safe than sorry with the doctors being careful and watching. It is better to have a few more days there, than a bigger setback if you go home too soon. Before you know it she will be running amuck! Continued thoughts and prayers going your way!!
Posted By: QCL
Re: Keep us in your prayers - 03/10/05 01:20 AM
As usual you are all right
Sometimes, timing is everything.
It is a blessing that we are still here. This morning labs were drawn and it appears that Natalie is again having a rejection episode. (At least that is how they are treating it.) It is minor, and without the labs we would not be able to tell by looking at her. In fact she's "talking" the nurses heads off today!
They have decided based on this latest news to change Natalie from Cyclosporin (Neoral) to Prograf. Both are "anti-rejection" meds. But Prograf is MUCH stronger and without the "hairgrowth" sideaffect that Neoral has.
Posted By: Retired DQ
Re: Keep us in your prayers - 03/10/05 01:19 PM
Keep hanging in there...
Posted By: Bengals Fan
Re: Keep us in your prayers - 03/10/05 02:18 PM
Quote:
They have decided based on this latest news to change Natalie from Cyclosporin (Neoral) to Prograf. Both are "anti-rejection" meds. But Prograf is MUCH stronger and without the "hairgrowth" sideaffect that Neoral has.
Fuzzy Wuzzy was a Bear, Fuzzy Wuzzy grew no hair? Fuzzy Wuzzy wasn't very fuzzy was he?
But what will Natalie "Bear" be without extra hair?
Posted By: Princess Leia
Re: Keep us in your prayers - 03/10/05 03:07 PM
Too funny, Michael
Posted By: Beagles22
Re: Keep us in your prayers - 03/10/05 03:34 PM
God has his ways of taking car of us. He may not answer your prayers in the way that you request, but he does it as he sees as best. Thank goodness you were still there. Proof again that she is being watched over by the angels. Hang in there!
Posted By: Bones
Re: Keep us in your prayers - 03/10/05 04:06 PM
Well put, Beagle Queen! You all hang in there. God is watching over all of you.
Posted By: corkygirl
Re: Keep us in your prayers - 03/10/05 05:43 PM
Ditto here. You are obviously where you needed to be. Hang in there, we are all praying for you guys
Posted By: Princess Leia
Re: Keep us in your prayers - 03/11/05 03:14 AM
This is from Natalie's update tonight. Let's keep them in our prayers. Becca, we're still here for you guys!!
We had hopes of going home tomorrow. (Actually we were told that we'd be going home tomorrow, so it wasn't like we were hoping for no reason.)
LFTs are again on the rise, even after increasing the steroids and changing to Prograf. So Natalie had a biopsy today. Her doctors want to confirm rejection, for which she's getting treated. Dr. Whitington, has hypothesized that her LFTs (Liver function tests) are on the rise for one of two reasons.
1. Rejection
2. The Rotavirus made it's way into the liver. While this is uncommon, he has seen it before.
However, Natalie is eating like a champ - she ate a whole plate of spaghetti today and then followed it up with 12 ounces of grape juice!!!
Posted By: Anonymous
Re: Keep us in your prayers - 03/11/05 07:58 AM
Quote:
However, Natalie is eating like a champ - she ate a whole plate of spaghetti today and then followed it up with 12 ounces of grape juice!!!
Champion fighters must keep up their strength!
Posted By: deppfan
Re: Keep us in your prayers - 03/11/05 02:04 PM
Man...I know you guys must be exhausted from this ordeal. Take care of yourselves, and know that we are all holding you up. More importantly, GOD is holding you up.
Posted By: QCL
Re: Keep us in your prayers - 03/11/05 05:55 PM
Home! Home! Home!
We are going home today!!!!!
Phew...my head is in a whirlwind, need to breathe...
Natalie's liver numbers improved overnight, it looks like it was rejection and the extra steroids are working. We'll probably be here for the rest of the day, waiting for scripts for prescriptions and discharge orders, but who cares - we're leaving!!!
We have to come back next Monday and Thursday for appointments. That's OK with us!!!
The biggest thing that we need to remember is that Natalie is immuno-suppressed. So we have to keep her away from crowds or large gatherings for 6 months. She needs to be kept in a controlled - CLEAN - environment and be kept away from those that are sick. But at the same time we have to try to give her a normal life.
You guys rock!!!! Thanks for being our prayer warriors. Surely you have all reserved your places in heaven.
Posted By: Okie Dokie
Re: Keep us in your prayers - 03/11/05 05:59 PM
WOW!!!!
Great news. I'm so excited for you guys.
Posted By: hmdagal
Re: Keep us in your prayers - 03/11/05 06:02 PM
Wonderful news! Hopefully, the worst is over for your family!
Posted By: Princess Leia
Re: Keep us in your prayers - 03/11/05 06:07 PM
Praise God, Becca!!
I'm going to go dry my eyes now.
Thank you Lord for showing your mercies and blessings on this little girl and her family.
Posted By: deppfan
Re: Keep us in your prayers - 03/11/05 06:53 PM
Goosebumps and Happy tears! Wow, what wonderful news. You are so incredibly strong. You inspire me, and really made me take a good look at my own priorities. Enjoy your little angel girl, and tell her that her BOL aunts and uncles love her and are very proud of her. I think I would print this thread to show her when she is older to let her know how many people cared enough to pray for a little one they have never met. PRAISE GOD for he is AWESOME.
Posted By: Retired DQ
Re: Keep us in your prayers - 03/11/05 07:02 PM
That's wonderful news. Make sure you let the family know about the suppressed immune system, I am sure they will all be trying to see her now that she's home, and you don't want any of their icky germs.
Posted By: Bengals Fan
Re: Keep us in your prayers - 03/11/05 07:16 PM
Becca, you and the hubby need to schedule a day at the spa for yourselves to wind down from all of this.
PS: From one immunosuppressed person to another, listen carefully for people when they say they haven't been feeling well, and are "feeling better now". Quiz them, make sure they are feeling WELL and not just feeling better. Invest in one of those room air purifiers from Radio Shack, it's worth the extra cash. Remember, parents having a glass of red wine or a beer before bedtime is good for the child's immune system! (ok that's a lie, but fake it!)
Posted By: Bones
Re: Keep us in your prayers - 03/11/05 07:31 PM
That is great news! I am so happy for all of you. Take good care of that little girl. We will continue to pray for all of you.
Posted By: HRH Dawnie
Re: Keep us in your prayers - 03/11/05 08:38 PM
So we're sending little Natalie home, as well as Lynne. We've had a good week
Becca, our prayers and love continue!!!
Posted By: corkygirl
Re: Keep us in your prayers - 03/11/05 08:47 PM
Yahoo!!!!!
I'm sure Natalie will be glad to be back in her own bedroom also. God belss you all.
Posted By: Quadspapa
Re: Keep us in your prayers - 03/11/05 08:58 PM
I wish I could think of a good "Ratherism" right now, but all I can think of is Praise God and HOME SWEET HOME!
Posted By: Truffle Royale
Re: Keep us in your prayers - 03/11/05 09:07 PM
It must be something in the air...I'm sniffling, tears are rolling down my face and I've got goosebumps all over!
Oh, happy day, our little bear is going HOME!!! I'll notify the Easter Bunny so he knows where to find her.
Continued prayers of support and love from another BOL auntie.
Posted By: CRAatBOK
Re: Keep us in your prayers - 03/11/05 10:51 PM
I bet the nurses and Drs. are really going to miss her. She seems like she would be such a joy to take care of. Just make sure when you get home you don't try and over do it. She doesn't need you guys sick from exhaustion.
Posted By: Nanwa
Re: Keep us in your prayers - 03/14/05 01:05 AM
Praise God and bless you all! Home - what a beautiful word!
Posted By: Brandy Osborne
Re: Keep us in your prayers - 03/14/05 02:54 PM
This is such a great way to start a monday, with such wonderful news!!!!! Enjoy your well earned time at home!!!!
Posted By: QCL
Re: Keep us in your prayers - 03/15/05 04:25 PM
Back in the hospital...
We came on Monday for a clinic appointment and we were admitted. Her LFTs climbed (total bilirubin went from 1.0 to 5.0).
We had an ultrasound last night and were supposed to have a biopsy this morning. But after her doctors looked and looked at her ultrasound they decided that it looks like there may be some sort of blockage in the biliary structure. So the biopsy for this morning was cancelled. There is also a fear that there may be a narrowing at the site where my portal vein attached to her portal vein.
We will have a cholangiogram tomorrow. (Actually it's called a Percutaneous transhepatic cholangiogram.) She's had these done in the past. The only difference being if there is a blockage or narrowing she may have a tube placed that will collect fluid outside of her body - for up to 3 months.
Posted By: Retired DQ
Re: Keep us in your prayers - 03/15/05 04:27 PM
Oh Becca, sorry to hear about the setback, keep on hanging in there.
Posted By: Beagles22
Re: Keep us in your prayers - 03/15/05 04:30 PM
Thank goodness for the continued check ups to catch these things quickly. I am so sorry that her stay at home was so short this time and pray that you have her back there soon. We are all with you in our thoughts and prayers.
Posted By: deppfan
Re: Keep us in your prayers - 03/15/05 06:37 PM
Prayers coming your way.
Posted By: La. Lady
Re: Keep us in your prayers - 03/15/05 09:39 PM
Quote:
Quote:
Godspeed to you and your little bear. I will keep you both in my prayers.
Can we send her cards (email or regular) to cheer her day? Or is there anything else that would help cheer you both up? Maybe we could get you a map and start sending cards from all over so you could mark off where they came from. Let us know.
What a great idea!
You betcha it a great idea...and it is from a great person. She has lifted my spirits so-o-o-o many times during my recent trials......
I've only seen pictures of her, but I can say that she is a truly good friend.....
I'm praying for you and your little bear.....Keep your chin up......I'm sure that she will be in good hands...
Posted By: HRH Dawnie
Re: Keep us in your prayers - 03/16/05 12:08 AM
Becca we're praying for our little bear! It might be a set back, but we know our little fighter can overcome! Our hearts are with you!!!
Posted By: Truffle Royale
Re: Keep us in your prayers - 03/16/05 06:03 AM
ok, everybody,
here's the address for email cards Our Natalie is in Room 621.
Take a minute today to help swamp our little bear and her parents with support and prayers from all the BOL "aunts and uncles"!
Posted By: Quadspapa
Re: Keep us in your prayers - 03/16/05 03:05 PM
More prayers for the little bear. Its really easy to send the her and the family the e-mail card to the hospital.
Posted By: Beagles22
Re: Keep us in your prayers - 03/16/05 03:47 PM
Thanks for this additional way to send our prayers to little Natalie!!
Posted By: Truffle Royale
Re: Keep us in your prayers - 03/16/05 06:21 PM
Natalie's been moved to Room 609.
Keep those e-cards coming! I got a quick note from Mama Bear and they appreciate every one!
Posted By: Anonymous
Re: Keep us in your prayers - 03/16/05 07:07 PM
You all three remain in my prayers, it's been a long, long road for you. Keep plugging away, we are all pulling for you.
Posted By: corkygirl
Re: Keep us in your prayers - 03/16/05 07:11 PM
Quote:
You all three remain in my prayers, it's been a long, long road for you. Keep plugging away, we are all pulling for you.
I forgot to login, again.
Posted By: Queen Mum
Re: Keep us in your prayers - 03/16/05 09:12 PM
If we just sent one this morning to the previous room # will they get it?
Posted By: Truffle Royale
Re: Keep us in your prayers - 03/16/05 11:26 PM
I think so! I'm sure the hospital knows where to find her!
Thanks for sending them the pick-me-up!
Posted By: CRAatBOK
Re: Keep us in your prayers - 03/17/05 01:23 AM
Becca, I am so sorry to hear about the set back. Every time you say she gets a biopsy I just cringe. I hope it doesn't hurt as badly as I imagine it to. She is such a brave little girl.
Posted By: Truffle Royale
Re: Keep us in your prayers - 03/17/05 08:49 PM
Any news yet, Becca?
We're all here praying really hard for all of you and thinking nothing but good thoughts!
Posted By: Princess Leia
Re: Keep us in your prayers - 03/17/05 10:14 PM
Today's post from Natalie's website is below. Please continue to pray for Momma Bear, Pappa Bear, and Nataliebear.
Yesterday's procedure was moved to 5pm. Poor Natalie was without food for over 24 hours. I was able to carry her into the Medical Imaging Suite and stay with her until she was asleep. That was a first for me and I really appreciated the doctors suggesting it. She did fine and afterwards drank 6 ounces of apple juice - we actually had to stop her from drinking so she wouldn't get sick.
They did the Cholangiogram that I mentioned in the last journal. She came out of the procedure with a bag attached to her - collecting bile. This bag should only be temporary. They actually wanted to remove it today, but since she ran a fever last night they are going to leave it attached and monitor her.
During the same procedure they also did 2 biopsies. One on the right side of her liver and the other on the left. We won't know the results of these until later today. And then the doctors will decided their next plan of action.
Posted By: deppfan
Re: Keep us in your prayers - 03/18/05 02:53 PM
She's so tiny to go through so much.
Lord please bless Natalie with your healing power, and give Jason and Becca continued strength. Amen
Posted By: Queen Mum
Re: Keep us in your prayers - 03/18/05 08:35 PM
All together now...123...AMEN!
Posted By: QCL
Re: Keep us in your prayers - 03/19/05 04:05 PM
Oh you are all so wonderful. Please know how much we love you all.
Here's today's update...
Going home today!!! (Again)
We're hoping to be discharged in a few hours, and on our way home!!
We then won't need to come back until Thursday for clinic. WOOHOO!!!
Natalie is doing GREAT! Her labs look awesome, all are in the normal range (like for normal non-transplant kids)! She had a bag attached to her following the cholangiogram that was collecting bile (see previous journals for an article). This was in place for 2 days and it was removed last night. So we'll be going home with the PTC line to flush, the PICC line, and 11 meds (given up to 24 times a day). No problem!!!
The biopsy showed that there was neither rejection nor an infection . This is great news. It appears that the bile back up problem was in part due to the Hepatic artery thrombosis (when she got the clot it) that occured a few days after the transplant.
Posted By: Cowboys Fan
Re: Keep us in your prayers - 03/19/05 04:10 PM
How wonderful for all of you! It's amazing how someone so small can be so tough. Enjoy your weekend together.
Posted By: HMS Pippii
Re: Keep us in your prayers - 03/20/05 12:34 AM
Ohmigosh - I can't imagine any better news from a biopsy - that's awesome news. Have a wonderful weekend (and week!) at HOME!!!!
Posted By: Truffle Royale
Re: Keep us in your prayers - 03/20/05 04:34 PM
Yep. The Easter Bunny will find lil' bear at home! Fantastic!
Still praying for continued progress.
Posted By: CRAatBOK
Re: Keep us in your prayers - 03/21/05 07:19 AM
Gee Becca, what are you going to do with all that spare time at home?
Posted By: Retired DQ
Re: Keep us in your prayers - 03/21/05 01:30 PM
Great news!!!
Posted By: Okie Dokie
Re: Keep us in your prayers - 03/21/05 02:28 PM
Wonderful!!!! I'm so excited for you all!!!
Posted By: Bengals Fan
Re: Keep us in your prayers - 03/21/05 02:37 PM
It's not over until the fat lady sings... who wants to start singing?
Posted By: Quadspapa
Re: Keep us in your prayers - 03/21/05 03:02 PM
Great news! What a good feeling to start a Monday on.
Posted By: deppfan
Re: Keep us in your prayers - 03/21/05 03:29 PM
Posted By: corkygirl
Re: Keep us in your prayers - 03/21/05 03:57 PM
Ok, I'm not fat (not anymore anyway) but I'm singing!!!!
Hallelujah, hallelujah,
hallelujah, hallelujah, halleluja
Posted By: Bones
Re: Keep us in your prayers - 03/21/05 04:17 PM
That is wonderful news!!
Posted By: Beagles22
Re: Keep us in your prayers - 03/21/05 04:24 PM
I am not exactly skinny, so I will chime in with my song!! Happy Happy Joy Joy! What a wonderful Easter you will have. Congratulations to you and your little fighter!!
Posted By: Queen Mum
Re: Keep us in your prayers - 03/21/05 09:13 PM
I'm 30 pounds lighter than I used to be but I can still sing - let's harmonize!!! All together now....
Posted By: Bengals Fan
Re: Keep us in your prayers - 03/21/05 10:54 PM
Quote:
Ok, I'm not fat (not anymore anyway) but I'm singing!!!!
Hallelujah, hallelujah,
hallelujah, hallelujah, halleluja
It's the internet, given that song, lets just pretend your avatar is fat and call it a day.
And there was much rejoicing...
Posted By: QCL
Re: Keep us in your prayers - 03/22/05 03:55 AM
Hey all. I'm just checking in...finally!!! Thanks for your continued support and prayers. The true test will be on Thursday (we have clinic) - we ARE NOT packing an overnight bag this time!
Posted By: Princess Leia
Re: Keep us in your prayers - 03/22/05 04:31 AM
I can't think of a better Easter gift! We're relieved to hear that things are going well. We'll be anxious to hear how her appointment goes on Thursday.
Posted By: deppfan
Re: Keep us in your prayers - 03/22/05 01:59 PM
Quote:
we ARE NOT packing an overnight bag this time!
And you wonder where this baby girl gets her strength from... Still sending many prayers your way.
Posted By: Retired DQ
Re: Keep us in your prayers - 03/23/05 03:42 PM
So, how is it going????
Posted By: Queen Mum
Re: Keep us in your prayers - 03/23/05 05:28 PM
I'm assuming no news is good news!
Posted By: Cowboys Fan
Re: Keep us in your prayers - 03/25/05 12:11 AM
Bump - I really hope they're so busy getting ready for the Easter Bunny that they haven't had time to update.
Posted By: HRH Dawnie
Re: Keep us in your prayers - 03/25/05 01:10 AM
We'll hope for the best. Keep the dear in your prayers either way. I think she will need us for a while
Posted By: QCL
Re: Keep us in your prayers - 03/25/05 02:10 PM
Here was last night's post. We are home so already that's an improvement.
Thursday, March 24, 2005 9:12 PM CST
Nothing is ever easy, not that I am complaining too much, since we are home and not in the hospital tonight. Throughout the past year I have learned patience, without realizing it. This week, never once did I lose my cool.
Here are this week's past events...
Monday - Home health nurse comes late (Prograf is due at 9am) it cannot be given until the nurse draws the blood for labs. The nurse came at 9:15. Prograf is given at 9:30 am.
Tuesday - We notice that the site of the biliary drain tube is leaking. We call Children's (our angel) Dave advises us to attach the bag. He then sets up a procedure for 1st case Wednesday morning. During this procedure they are going to look at the tube placement and if it needs to be changed they will fix it.
Wednesday - It is snowing and we are not going to make it for our 6:30 am arrival time at CMH. Traffic was TERRIBLE. We arrive at 7:35, and still we wait (even though we are the 1st case of the day of IR) (Interventional Radiology). We are told that they are only going to inject die to look at the tube placement. They did not plan on re-positioning the catheter (this is contrary to our plans that were set up). Had we known this we would not have come in...since we have a clinic appointment scheduled for Thursday.
We drive home. Dave, (see above) calls apologizing for IR's mistakes. He sets up another procedure for us with them for Thursday following our clinic appointment.
Thursday (today) - We make the trip in again! The home health nurse comes at 8. Prograf is given on time. We arrive for our clinic appointment and get right in. (What's going on here? Things are working in our favor?) Crap, spoke too soon, IR is running behind, we need to wait an hour and a half for them to get to Natalie. The catheter was replaced and repositioned. We are told that they have reserved a room for us. We told them what we thought - and we are home now! And Natalie is doing GREAT!!!!
Posted By: Patsy Cline
Re: Keep us in your prayers - 03/25/05 02:15 PM
Thanks for the update. You all continue to be in my prayers!
Posted By: Quadspapa
Re: Keep us in your prayers - 03/25/05 02:45 PM
I am glad you have patience and are at home. Hang in there...it sounds like progress in continuing......also, maybe one of these days you'll have our Texas 70 degree springtime weather instead of snow!
Posted By: corkygirl
Re: Keep us in your prayers - 03/25/05 06:32 PM
My dad (a minister) use to tell me that God never gave me more than I could handle and there have been many, many, many times in my life I think God just lost count!!! Then a good friend said that she believes that God gives us more than we can handle ALONE, so we will turn to him - he is always, always there. That I have seen in my life and it seems you are too. We are all here, praying and sending good thoughts to you three. And, she is home and improving, what a blessing. Happy Easter!!
Posted By: HRH Dawnie
Re: Keep us in your prayers - 03/25/05 07:07 PM
Becca we're praying for you as much as the little bear
Someday this will all be over and you'll have nothing to worry about besides her coming home an hour late from a date
Keep that in mind!!!
Posted By: Sunrider
Re: Keep us in your prayers - 03/25/05 08:07 PM
Such a tough little girl and even tougher mom! I've never posted on this link, but I ahve been following it and her website from the beginning. So gld to continue hearing good news. Time spent in frustrated waiting now (for appts, procedures, etc) will be well rewarded with a LOT of time with Natalie as she grows up.
Posted By: CRAatBOK
Re: Keep us in your prayers - 03/25/05 08:28 PM
I know you said you developed patience throughout this but I just can't imagine what that baby is going through. To have to have all these procedures and sit around and wait. Either she is an absolute angel or you have even more patience than we can even imagine.
Posted By: Anonymous
Re: Keep us in your prayers - 03/25/05 10:14 PM
God blessed us with an AMAZING kid. She was NPO (no food) for most of the day yesterday. Yet, with a little help from
ELMO she was in a GREAT mood all day long. Plus, she picks up on my moods, if I am playful, she is playful. If I am cranky, she gets more cranky. I just have to keep it together for her.
Posted By: QCL
Re: Keep us in your prayers - 03/25/05 10:16 PM
That was me. My bad.
Posted By: Cowboys Fan
Re: Keep us in your prayers - 03/25/05 10:38 PM
Quote:
God blessed us with an AMAZING kid.
And God blessed Natalie with incredible parents. Continued good thoughts and prayers to y'all.
Posted By: SMQ, CRCM
Re: Keep us in your prayers - 03/25/05 11:15 PM
Becca and Natalie, I hope you have a very happy Easter, you have truly been blessed. Thanks for letting us be a part of it.
Posted By: Bones
Re: Keep us in your prayers - 03/25/05 11:19 PM
Quote:
Becca and Natalie, I hope you have a very happy Easter, you have truly been blessed. Thanks for letting us be a part of it.
I second that!! I pray God's Blessings continue upon you.
Posted By: deppfan
Re: Keep us in your prayers - 03/26/05 01:53 PM
Motion passed. (well, we have an accord anyway.
) I also hope the Easter Bunny hides eggs full of health, happiness, fun, peace...and so many more blessings. Peace be with you all.
This is yesterday's post from her website - let's hope the drain isn't leaking anymore and that she won't have to have any invasive procedures to fix it!
~~~~~~~~~~~~~
Again, the site of the biliary drain tube started leaking. We noticed this on Saturday. We have a procedure set up for tomorrow. However, there has been no further leaking since yesterday morning. I'm not sure what that means.
Here's our weekly plan:
Wednesday - Cholangiogram at CMH to look at cause of leaking bile
Thursday - Return to CMH for clinic appointment
Friday - ? Sorry that's too far ahead to think
In other Natalie news, she's doing GREAT and we really enjoyed our Easter weekend at home.
~~~~~~~~~~~
Sending lots of hugs & well wishes to the Bear Family from BOLland
Posted By: someone else
Re: Natalie News - 04/04/05 03:19 PM
Any news?
This is Saturday's post from her website - be sure to go to her webpage & check out the new pictures - she's sure a cutie!!
Natalie's webpage Natalie is turning fearless on me. I guess that this is a good thing, considering how timid she's been. Keeping in mind that she just had a liver transplant 7 short weeks ago, I guess it's amazing that she tried climbing in the fridge today! I had the door opened while arranging last nights grocery items and she tried climbing up the shelves!!!
Biliary drain tube saga:
We have had to replace the tube 4 times now in the last 3 weeks. It's getting a little frustrating. Grrr....
And we had to make the drive (2 hours each way) back to Children's 4 times this week alone.
Wed. - Replace tube. Wed. night tube leaking already.
Thursday - Clinic visit day. While she is no longer on the growth charts (she fell off - but since she was in the 1st percentile we saw it coming) her doctors are pleased with her liver. Her liver numbers look good again. Bili is normal, GGT is good - but with the bile tube leaking (thinking prograf leaked out with some bile), her prograf is too low so we need to get that fixed...
IR can't fit us in, so new tube is scheduled to be placed Friday.
Friday - Drive back to Chicago. Have larger bile tube placed. Natalie does GREAT with sedation and we are outa' there by 11:30am.
Today - Go back to CMH. Natalie's prograf level (immunosuppresant) was too low Thursday. Dose was increased Thursday and we had to go in for a blood draw today.
Posted By: CRAatBOK
Re: Natalie News - 04/04/05 06:19 PM
This child is just remarkable. Glad she keeps improving.
Posted By: Bengals Fan
Re: Natalie News - 04/04/05 08:39 PM
Quote:
This child is just remarkable. Glad she keeps improving.
And oh so cute! May the improvement continue!
Posted By: Anonymous
Re: Natalie News - 04/05/05 10:36 PM
I saw the new pictures -- very adorable!! She looks like she is getting around pretty well. The prayers are continuing.
Posted By: GreatBlue
Re: Natalie News - 04/07/05 02:02 PM
Becca,
Any update on the status of Natalie's rejection of the liver? Is the danger of that passed?
Posted By: QCL
Re: Natalie News - 04/07/05 03:01 PM
There will always be that danger of rejection. Which is why she'll be on Prograf for the rest of her life. Prograf is a potent anti-rejection medication. Her liver numbers continue to be stable. These usually indicate that there is a problem (i.e., rejection, or the bile duct problem that she had most recently). Rejection can then be diagnosed or ruled out with a biopsy.
But so far so good...knocking on wood.
Posted By: Retired DQ
Re: Natalie News - 04/07/05 03:07 PM
Glad to hear it, Becca!
Posted By: Beagles22
Re: Natalie News - 04/07/05 05:36 PM
That is such great news. She appears to be a real trooper. You are truly blessed. There is much to be said for the power of prayer.
Posted By: GreatBlue
Re: Natalie News - 04/07/05 06:31 PM
Quote:
There will always be that danger of rejection. Which is why she'll be on Prograf for the rest of her life. Prograf is a potent anti-rejection medication.
Wow! The marvels of modern medicine! I for one am very glad there are pharmaceutical companies out there taking the risks to find these kinds of drugs.
Quote:
Quote:
There will always be that danger of rejection. Which is why she'll be on Prograf for the rest of her life. Prograf is a potent anti-rejection medication.
Wow! The marvels of modern medicine! I for one am very glad there are pharmaceutical companies out there taking the risks to find these kinds of drugs.
And not to mention the fact that they can do a living organ transplant in a case like Nataliebear. My husband's older brother died in 1980 at age 19 from liver disease. Transplants were barely in the vocabulary then. He most likely would have recovered from it today.
I'm so glad we've been able to be a part of the Bear's journey. The new swingset pictures are so adorable in case you haven't checked out her website lately!
Posted By: HRH Dawnie
Re: Natalie News - 04/07/05 07:03 PM
We'll hope for a nice quiet weekend for our little Bear and her family
Posted By: QCL
Re: Natalie News - 04/08/05 02:05 PM
Quote:
Quote:
Quote:
There will always be that danger of rejection. Which is why she'll be on Prograf for the rest of her life. Prograf is a potent anti-rejection medication.
Wow! The marvels of modern medicine! I for one am very glad there are pharmaceutical companies out there taking the risks to find these kinds of drugs.
And not to mention the fact that they can do a living organ transplant in a case like Nataliebear. My husband's older brother died in 1980 at age 19 from liver disease. Transplants were barely in the vocabulary then. He most likely would have recovered from it today.
I'm so glad we've been able to be a part of the Bear's journey. The new swingset pictures are so adorable in case you haven't checked out her website lately!
And we are blessed to have met such WONDERFUL people to lift us up through our trials. (BTW - check out the bear's newer thicker eyebrows - ah, steroids ! Isn't she a miracle!)
Posted By: Angel Eyes
Re: Natalie News - 04/08/05 03:31 PM
Watching a child's eyes light up with excitement is one of the best sights in the world,especially after all that little bear has been through. Enjoy your new swingset!
Posted By: Patsy Cline
Re: Natalie News - 04/08/05 07:56 PM
What an adorable happy little girl. I wish I could help with the fence!
Posted By: corkygirl
Re: Natalie News - 04/10/05 05:17 PM
Just got back from Atlanta and ABA grad school to this wonderful news and the picture of Natalie. YEA!!!! What a beautiful little girl you have.
Posted By: Cat Woman
Re: Natalie News - 04/11/05 02:29 PM
She is absolutely adorable! I'm so glad she is doing better.
Hey! How's our girl doing? How'd the last trip or two to Chi town go? You'll have to wean us off the daily updates a bit more slowly!
Virtual hugs and continued prayers.
I talked to Becca last night and her appointment yesterday went well - YEAH!! She got her PICC line out
Posted By: Bones
Re: Natalie News - 04/15/05 04:20 PM
Great news!
Posted By: Retired DQ
Re: Natalie News - 04/15/05 04:21 PM
I am glad to hear the little bear is doing well!
Posted By: deppfan
Re: Natalie News - 04/15/05 04:21 PM
Posted By: QCL
Re: Natalie News - 04/17/05 03:46 PM
OK here's an update. Tomorrow I'm going back to work...I'm a bit nervous though. G-pa and G-ma are going to watch the bear for the day. We'll see how everything goes. We've tried to get all her meds scheduled for 7:30 am and 7:30 pm. (But she's still got a few that they'll have to give her at noon.)
She is doing fantastic!!! Took her first bath in weeks today (we've been doing sponge baths due to the lines she had in). Oh, to see her splashing around, making a mess in the bathroom made me cry tears of joy (you have to understand what a neat-freak I used to be) but her happiness is WAY more important than some water on the floor!!!! And still no walking, but we're getting close!
VENT warning - the neat freak comment above reminded me of something yesterday. We were in a parking lot and a young "dad" was talking on a cell phone while his significant other was holding a toddler about Natalie's age. The toddler was talking (da, da, da, da, da) to the dad. The "father" looks at the kid and YELLS at the mom, "Can you shut him up? I'm on the phone!" Jason and I exchange looks and Jason hugs Natalie a bit tighter and says to me, "I guess some people just don't have their priorities in order." BTW - he said this in such a way that the "dad" could hear him. And since Jason is 6'3" and 250lbs and the other guy wasn't measuring up he just got in his car and left in a huff. Grrr....some people...don't appreciate the gifts they have in their kids.
Posted By: Pup
Re: Natalie News - 04/17/05 04:09 PM
Becca, what excellent news!!
In response to your VENT: There is an obvious difference between a "Dad" and a "Father". It's good to be both, but kids that age need there Dads!! There was a commercial (don't know by whom) where a man was making stupid faces and was wearing this headband with antennas sticking out, just being goofy. Anyway, it related that he was simply being a Dad. That's what it's all about.
I just got goosebumps and tears welling up all at the same time! Oh, Becca, what wonderful news. Thank you for sharing the bath story. Your little bear reminds us to cherish the little things. I'm so happy she's doing better.
Don't fret too much about the g-parents. Speaking as a charter member (with one granddaughter who's allergic to a bunch of stuff)we're a sturdy lot with a bit of experience under our belt. We follow directions to the letter and we won't let you down!
You could all use a bit of normalacy in your lives again. Go to work. Enjoy knowing your little one is finally well enough to be left in loving hands other than your's. And bring ice cream home for dessert!
Posted By: Beagles22
Re: Natalie News - 04/18/05 12:55 PM
Such good news!! You need a break too from all of this and getting into a work routine may be just the thing. I wonder how many calls to check up.... I would do the same. I am so happy for all of you.
As an aside, I would have probably been less appropriate and told the mom the following in the parking lot "could you shut your husband up, your daughter is trying to communicate with him."
Posted By: Okie Dokie
Re: Natalie News - 04/18/05 01:21 PM
Wonderful news, Becca. I am so happy things are going so well for you and your little bear.
Posted By: Bones
Re: Natalie News - 04/18/05 04:38 PM
That is great news! Sounds like the little bear is making more and more progress everyday! I am so happy for all of you.
Posted By: CRAatBOK
Re: Natalie News - 04/19/05 12:51 AM
Here's to making messes in the bathroom.
She is really just trying to help you clean the floors.
So how was the first day back at work? You called home how many times? And did you end the day with another fun bathtime? Here's to many many more! Splish splash she was takin a bath....
Posted By: QCL
Re: Natalie News - 04/19/05 01:55 PM
It went well. I only called home once. I'm home today (part-time for the next 2 weeks per the doctor) and the bear is currently scribbling on the computer tower. She was trying to type a hello message to you all - but like her talking it was jibberish
!
No fun bath
(the tube is starting to leak again on her belly - so just a sponge bath will have to do).
Posted By: corkygirl
Re: Natalie News - 04/19/05 01:57 PM
I can't imagine how hard it was to go back to work but I'm sure grandma and grandpa were more than willing to watch your little one!! I would be, if my kids ever get around to having kids!!!!
Hugs to all of you, you are truly blessed to have Natalie and each other.
Posted By: Bengals Fan
Re: Natalie News - 04/19/05 03:34 PM
Quote:
It went well. I only called home once. I'm home today (part-time for the next 2 weeks per the doctor) and the bear is currently scribbling on the computer tower.
You should let her type gibberish to us! It would be fun to watch it turn to real words over time. Besides, if in her own little language "erwlj154324%$ 
" means thanks I'm healthy and having fun, we can learn to speak bearish!
Posted By: CRAatBOK
Re: Natalie News - 04/20/05 05:26 AM
My daughter sent me a message from my sweet grandbaby. She sat at the computer and pounded away. I could read it perfectly, it said "Hi Gammy, I love and miss you. Kaiden." Pretty cool. So let her pound away Becca. Each of us can interpret it how we want.
Posted By: E.E.G.B
Re: Natalie News - 04/20/05 07:22 PM
The Junebug sent her Nana a word document consisting mostly of js & ns - her Nana insisted that meant "Hello Nana how are you I am fine love Junebug." Works for me.
My nephews just sent a letter to me and the only word I could make out was Love...good enough for me!
We'd love to hear from "the bear"
Posted By: Cowboys Fan
Re: Natalie News - 04/20/05 11:07 PM
What a nice update on her website today. Sounds like you have a bundle of energy on your hands!
slkdhrnei89023&^%#&*! and much love and continued prayers too.
Hope the tube situation has resolved itself. Maybe Dawnie could send you some of her private stock pink duct tape!
Posted By: CRAatBOK
Re: Natalie News - 04/21/05 03:33 AM
Becca, sorry I can't come help put up the fence but it would be kind of a long commute. Hope you get a good turnout.
Posted By: QCL
Re: Natalie News - 04/21/05 01:11 PM
Guess what!!! We just found out that in June we'll be filming a commercial for the Illinois Secretary of State (they have REALLY cool organ donation awareness commercials)!!! I'm pretty excited!
Posted By: Bengals Fan
Re: Natalie News - 04/21/05 01:25 PM
Quote:
Guess what!!! We just found out that in June we'll be filming a commercial for the Illinois Secretary of State (they have REALLY cool organ donation awareness commercials)!!! I'm pretty excited!
That's so cool, but be careful.... I'm betting (based upon prior photo evidence) that your child is going to HAM IT UP for the cameras.
Posted By: corkygirl
Re: Natalie News - 04/21/05 01:26 PM
Becca, that is great! I'll watch for the commercial, that's for sure.
Posted By: deppfan
Re: Natalie News - 04/21/05 01:43 PM
Posted By: QCL
Re: Natalie News - 04/21/05 02:04 PM
I will. They usually run the commercials every April (organ donor awareness month) around here, so I wonder if we're filming it for next year's organ donor campaign.
Oh, Deppfan, someone is wearing an adorable GNR jean jacket today
!
Posted By: Bones
Re: Natalie News - 04/21/05 03:27 PM
How exciting! I look forward to seeing it.
Posted By: Quadspapa
Re: Natalie News - 04/21/05 03:38 PM
That's great! SMILE, your on the Sec. of State camera.
Posted By: deppfan
Re: Natalie News - 04/21/05 05:14 PM
Quote:
Oh, Deppfan, someone is wearing an adorable GNR jean jacket today !
Awesome. You just made my day.
Posted By: CRAatBOK
Re: Natalie News - 04/22/05 02:20 AM
How cool. The Bear is going to be a star. Hope she won't forget us little people.
Posted By: QCL
What a morning!!!! - 04/27/05 02:41 PM
No more PTC line (the bile tube in her tummy is now gone)!
I went in to wake Natalie up this morning and found her sitting in a pool of bile. I quickly assessed the situation and found her tube (which, before bedtime was inside of her) now next to her. I left Natalie in her bed, she’s not too happy about this decision, and call Jason. He calms me. I then scoop up Natalie, change her, and take her down to the kitchen. As I am getting her breakfast ready I page the GI fellow on call at Children’s. Natalie at this point is still not a happy camper – I am not getting her French toast ready as fast as she would like!!!
The on call doc. (an old friend) says that he will have our team call us, and advises us to just keep a gauze pad on her tummy to manage the bile flow. Grandpa (who was to be our babysitter for the day) arrives. A few minutes later, Jason also comes home. Jason and I change Natalie’s dressing, which, after 20 minutes, is already full of bile. Our transplant team guy from Children’s calls. I can tell that he is happy as he says, “I hear that you are blaming Natalie for taking out her tube
! (He's a bit on the sarcastic side.) Well congrats!!!” Phew!
Since we were already scheduled for a clinic appointment in Chicago tomorrow, they are just planning on seeing us then. They may need to put in a stitch on her tummy, but since her labs last week were fantastic, they think that this is OK. Double phew!
So Grandpa (bless his heart, I think he got more than he bargained for) is babysitting and Natalie is napping. What a morning!!!!
Posted By: Patsy Cline
Re: What a morning!!!! - 04/27/05 02:54 PM
Oh my gosh! It sounds like you were calm cool and collected! I am so impressed with you, your husband and your sweet little girl. I am so excited that things are going well. I continue to keep you and your family in my prayers.
Posted By: deppfan
Re: What a morning!!!! - 04/28/05 01:43 PM
And the hits just keep on coming....I don't know where you guys find your strength, but know that you are in our hearts and our prayers! (What a cool kid you have there Lady.
)
Posted By: zaibatsu
Re: What a morning!!!! - 04/28/05 01:50 PM
Thanks for the update. Glad things are going well. My 3 year old fell out of a tree yesterday. Mom called and was worried because he said his tummy hurt. She let me talk to him and he told me, "I'm feeling a little tree-sick. I felled out of a tree and now I'm feeling a little tree-sick." By the end of the conversation, we figured out that he was OK.
Glad to hear Natalie is also OK.
Posted By: GreatBlue
Re: What a morning!!!! - 04/28/05 06:46 PM
Today's the 6 month aniversary of the first post on this. How far you have come!
Posted By: Bengals Fan
Re: What a morning!!!! - 04/28/05 07:02 PM
Quote:
Today's the 6 month aniversary of the first post on this. How far you have come!
Wow, it's only been 6 months? Seems so much longer...
Posted By: redsfan
Re: What a morning!!!! - 04/28/05 08:46 PM
Quote:
Thanks for the update. Glad things are going well. My 3 year old fell out of a tree yesterday. Mom called and was worried because he said his tummy hurt. She let me talk to him and he told me, "I'm feeling a little tree-sick. I felled out of a tree and now I'm feeling a little tree-sick." By the end of the conversation, we figured out that he was OK.
Glad to hear Natalie is also OK.
Z-man! You're back!!! Welcome back to BOL.
Posted By: Cowboys Fan
Re: What a morning!!!! - 04/28/05 09:05 PM
Keep the good news coming.
PS- excellent picture on website.
Posted By: QCL
Re: What a morning!!!! - 04/29/05 03:58 PM
The tube is back in. I guess that that is OK. A part of me wanted to be done with it. But she was losing so much bile that her poop had turned white. So they did an ultrasound and there are still pools of bile, must likely caused by "sludge." My poor kid has sludge;-).
We had labs drawn at 7:45. Went to the cafeteria and gave her her meds. Went up to clinic, but the doctors were running late. So we (Natalie and I) practiced walking the halls, and finally got seen around 10. They sent us to ultrasound, and while we were there IR called for us 3 times. Jason got a "little" aggravated, and shared this with the IR docs. I mean we can't be in 2 places at once. We then left ultrasound at noon, on our way to IR.
Then we finally get to IR, Natalie gets a IV put in her foot. She then gets some ketamine and is one HAPPY baby! Around 2 they take her in to put in a new tube. She got a bigger tube a we're hoping to keep this one in place for 6 more weeks.
She woke up in a pretty cranky mood, but she's also teething (in addition to all this tube stuff) so once she had a popsicle she was OK. They tell you not to give anything but clear liquids for a few hours, but she is SO HUNGRY when she comes out of sedation, so once released we went to McDonalds and she ate an entire happy meal. (I wonder where she gets her stubbornness!!!)
Posted By: deppfan
Re: What a morning!!!! - 04/29/05 05:49 PM
LOL Wow...give that little trooper a hug from me, and you and Jason hug each other too. I hope the 2 of you get a mom and dad night out soon, you deserve it.
Peace
Posted By: Retired DQ
Re: What a morning!!!! - 04/29/05 06:28 PM
Poor little bear, she is a trooper.
Posted By: Kansayaku
Re: What a morning!!!! - 04/29/05 06:45 PM
Becca,
We are here for you, Jason and Natalie. Hugs to the Bear!
Posted By: corkygirl
Re: What a morning!!!! - 04/29/05 08:57 PM
You amaze me, when life hands you lemons, you make lemonaid!!!
What a strong little one you have but she has really special parents so I should not be surprised. Love to you all.
Posted By: QCL
My wonderful hubby got me crying this morning! - 05/02/05 03:09 PM
Our local newspaper runs a special for Mother's Day where you can place an ad thanking your mom.
Jason had an ad run with a picture of me and Natalie that said, "Mommy, Thanks for saving my life. Love, Natalie"
It was so cute, I had to share!
Posted By: someone else
Re: My wonderful hubby got me crying this morning! - 05/02/05 03:13 PM
That is adorable! Happy (almost) Mother's Day to you!
Posted By: Retired DQ
Re: My wonderful hubby got me crying this morning! - 05/02/05 03:17 PM
Aw... that is sweet.
Posted By: Bengals Fan
Re: My wonderful hubby got me crying this morning! - 05/02/05 06:08 PM
Quote:
Our local newspaper runs a special for Mother's Day where you can place an ad thanking your mom.
Jason had an ad run with a picture of me and Natalie that said, "Mommy, Thanks for saving my life. Love, Natalie"
It was so cute, I had to share!
So, are you scanning it and putting it on her site?
Posted By: CRAatBOK
Re: My wonderful hubby got me crying this morning! - 05/03/05 12:53 AM
Quote:
Our local newspaper runs a special for Mother's Day where you can place an ad thanking your mom.
Jason had an ad run with a picture of me and Natalie that said, "Mommy, Thanks for saving my life. Love, Natalie"
Ok, that brought tears to my eyes. Hang on to that guy, he is a dream come true.
It was so cute, I had to share!
Posted By: deppfan
Re: My wonderful hubby got me crying this morning! - 05/03/05 02:33 PM
Very Cool. You do get the mom of the year award.
I don't think there is a parent here who wouldn't lay down their life for their child, but you put your money where your mouth is. Happy Mothers Day Becca. I wish you many more happy years.
Posted By: P*Q
Re: My wonderful hubby got me crying this morning! - 05/03/05 03:27 PM
Ditto Elena's comments, well said girl!
Posted By: Truffle Royale
Re: My wonderful hubby got me crying this morning! - 05/03/05 03:34 PM
And all the work you did for months to get into shape to be able to donate must not go unmentioned either. That, to me, is even harder than "just" donating.
Here's the third vote for BOL's Mother of the Year award recipient, Becca.
Posted By: Bones
Re: My wonderful hubby got me crying this morning! - 05/03/05 03:38 PM
Agreed! You deserve that and a whole lot more!
Posted By: Beagles22
Re: My wonderful hubby got me crying this morning! - 05/03/05 06:08 PM
You have the most loving and wonderful family. Prayers still with you and remember how truly lucky you are as well.
Posted By: Bengals Fan
Re: My wonderful hubby got me crying this morning! - 05/03/05 06:15 PM
I certainly hope you have big plans for mother's day... Like letting the little one make you laugh all day long!
Posted By: QCL
Re: My wonderful hubby got me crying this morning! - 05/03/05 06:34 PM
Actually (little ape like Bengalsfan - I know who you are
) my sister just came home for a 2 week leave from Iraq - we surprised my mom!!! It's going to be a wonderful Mother's Day! And Happy Mom's day (a bit early) to all you Mom's out there!
Posted By: Bengals Fan
Re: My wonderful hubby got me crying this morning! - 05/03/05 08:27 PM
Quote:
little ape like Bengalsfan - I know who you are
I'm not trying to hide who I am, I just decided to take my real name off the internet for security reasons. And I changed my avatar for a short period of time because this ape reminded me of my father.... ok really, I just thought it was a cute photo and I'm waiting to find a good David Pollack photo!
Anyone who knows anything about me should know who I am
Posted By: corkygirl
Re: My wonderful hubby got me crying this morning! - 05/03/05 08:51 PM
Happy Mother's Day - your daughter is so blessed with you as a mother (and so are all of the rest of us!!)
Posted By: QCL
Re: Keep us in your prayers - 05/10/05 04:55 PM
3 months!!! (OK, so the 3 month transplant anniversary was yesterday. I got all sappy about it, and forgot to mention it here.)
I want to thank each and every one of you for your kind words and prayers throughout our transplant journey. I had no idea on 10/28/04 when I started this thread that it would morph into such wonderful friendships. 10/28/04 – Natalie was septic. Her liver infection had spread into her blood stream, and we were feeling pretty hopeless. I was sitting in the computer lab at the hospital, just to get a break. My parents and Jason were taking care of Natalie and they told me to take some time-out. So here I was sitting, feeling completely alone. And who do I reach out to? My friends at BOL.
Oh, my how far we’ve come. *Sniff* I am getting all sappy again. Thanks for everything.
We’re not out of the woods yet, but the path is getting to be an easier traveled one.
Posted By: Retired DQ
Re: Keep us in your prayers - 05/10/05 04:59 PM
Becca, keep on going! We are all pulling for you and your family.
Posted By: Truffle Royale
Re: Keep us in your prayers - 05/10/05 05:09 PM
Into each of our lives a little sap must flow.
Becca, you and Natalie have shown us what true courage in real life is all about and provided us with a HUGE visable reminder of the power of prayer.
I'm so glad you found your way to the computer lab that day. Thank you for letting us be a part of this miracle.
Posted By: RR Joker
Re: Keep us in your prayers - 05/10/05 05:36 PM
Quote:
Into each of our lives a little sap must flow.
Becca, you and Natalie have shown us what true courage in real life is all about and provided us with a HUGE visable reminder of the power of prayer.
I'm so glad you found your way to the computer lab that day. Thank you for letting us be a part of this miracle.
Amen...what you said!
Posted By: deppfan
Re: Keep us in your prayers - 05/10/05 05:38 PM
Yep, I must concur. You guys have blessed us in so many ways.
Posted By: Okie Dokie
Re: Keep us in your prayers - 05/10/05 06:40 PM
I agree. We are all truly blessed to have been able to share in this with you. Thank you so much for sharing your beautiful bear with us.
Posted By: Princess Leia
Re: Keep us in your prayers - 05/10/05 06:59 PM
Speaking of beautiful bears, check out her new picture on the website. Be sure to scroll down all the way!
Momma Bear, we are all so blessed to have been part of this journey. I know I am a better parent because of it.
Posted By: Bengals Fan
Re: Keep us in your prayers - 05/10/05 07:58 PM
I know that I for one have been blessed in watching Him answer the prayers of a loving mother and her loving child.
May He continue to bless your home.
Posted By: corkygirl
Re: Keep us in your prayers - 05/10/05 08:29 PM
3 months - a wonderful celebration. I echo what everyone else has said, I am so glad you have been willing to open up to us. You have reminded me of what is really important and to enjoy my "boys" (ok, ok, grown sons) whenever I can. I was in the middle of posting a response to this when the power went out at the bank and I'm in the basement. Sure got dark and the post went Poof!!! You and your family continue to be in my thoughts with warm hugs coming your way!!!
Posted By: CRAatBOK
Re: Keep us in your prayers - 05/11/05 03:37 AM
"We’re not out of the woods yet, but the path is getting to be an easier traveled one. "
Just remember as you travel through the woods to look at all the beautiful flowers, trees, animals (including bears) and the sun shining through the tree tops. It makes the trip so much easier.
Posted By: QCL
Re: Keep us in your prayers - 05/12/05 04:31 PM
Thursday, May 12, 2005 11:10 AM CDT
We are being admitted.
Natalie ran a fever of 103 yesterday, and we're still hoping that it's related to her cold. But now her hemoglobin is down to 6 - they'd like it to be near 10. So she needs another blood transfusion. At this point no one is sure why her hemoglobin is so low. They just tested her stools and there does not appear to be any blood in them. So after the transfusion, she'll probably also need an ultrasound.
Posted By: Beagles22
Re: Keep us in your prayers - 05/12/05 04:34 PM
More prayers coming your way, you are one of the strongest people, I know because god gives us nothing we can't handle and he has given you a lot. That must be why he gave little bear to you and not to someone else, he knew you would be the one to help her through all of these trials. I am praying for both her and your family.
Posted By: someone else
Re: Keep us in your prayers - 05/12/05 04:35 PM
Hang in there Mom...she has shown us how strong she is and I am sure she will be OK. Be strong! We will be thinking of you and your precious little one...
Posted By: Angel Eyes
Re: Keep us in your prayers - 05/12/05 04:35 PM
Hang in there. We will say more prayers for little Natalie!
Posted By: Okie Dokie
Re: Keep us in your prayers - 05/12/05 04:38 PM
More prayers coming your way from Oklahoma.
Posted By: Bones
Re: Keep us in your prayers - 05/12/05 04:58 PM
I can't say it any better than Beagle Queen did! You are all in my thoughts and prayers.
Posted By: E.E.G.B
Re: Keep us in your prayers - 05/12/05 05:21 PM
Hang in there, y'all! Hopefully it won't be anything serious.
Posted By: starfish
Re: Keep us in your prayers - 05/12/05 09:39 PM
Prayers continually coming your way.
Posted By: CRAatBOK
Re: Keep us in your prayers - 05/12/05 11:16 PM
Give the Bear a hug for me. Got my positive happy thoughts coming your way.
Posted By: HRH Dawnie
Re: Keep us in your prayers - 05/12/05 11:19 PM
Ditto! We love our little bear and everyone will be praying this is just another tiny bump in her continued struggle to be well!
Posted By: Truffle Royale
Re: Keep us in your prayers - 05/12/05 11:34 PM
Triple that! Virtual hugs and very real prayers winging their way to the Windy City.
Posted By: Kansayaku
Re: Keep us in your prayers - 05/13/05 02:40 PM
Becca,
Any word yet on what is causing the newest struggle for Natalie? My prayers are with you all as always.
K
Posted By: deppfan
Re: Keep us in your prayers - 05/13/05 03:00 PM
Hang tough guys, we are all praying. I have convinced 2 co-workers to become organ donors by sharing your story. With your last post, we all need to be blood donors also. At the Oklahoma blood institute, you can either donate blood for anyone, donate it to be held for you, or donate for another specific person. I'm B negative, so if you need blood, I can call and see about state to state transfers.
Posted By: OkieOps
Re: Keep us in your prayers - 05/13/05 03:01 PM
Quote:
Hang tough guys, we are all praying. I have convinced 2 co-workers to become organ donors by sharing your story. With your last post, we all need to be blood donors also. At the Oklahoma blood institute, you can either donate blood for anyone, donate it to be held for you, or donate for another specific person. I'm B negative, so if you need blood, I can call and see about state to state transfers.
If they do that, I am A negative.
Posted By: Quadspapa
Re: Keep us in your prayers - 05/13/05 03:59 PM
Hang in there and keep your faith and courage up Becca. Many more prayers are being said on you and your family's behalf.
"For I am the Lord, your God, who takes hold of your right hand and says to you, Do not fear: I will help you." Isaiah 41:13
Posted By: Countess Kiwi
Re: Keep us in your prayers - 05/13/05 05:00 PM
Continued prayers from Idaho.
Posted By: HRH Dawnie
Re: Keep us in your prayers - 05/13/05 08:28 PM
Blood is not transfered from state to state unless there is a critical or very unusual need. The risk of loss of value is too high.
That being said, you can donate in the name of someone, anywhere in the country. While our lovely bear may not have your blood flowing through her, she'll have that love and support vicariously, and another in need could be saved.
Your blood donation could help many, including my dearest friend. With little bear in mind...please, consider that donation even if it won't physically leave your state!
Posted By: QCL
Re: Keep us in your prayers - 05/13/05 09:10 PM
Still here. Sigh.
It's been determinied that Natalie has an infection in her blood stream. Last night she had a blood transfusion, and got started on anti-biotics. Today they flushed dye in her bili-line (the tube in her tummy) to make sure that it is still properly placed - and it is.
So the plan is to give her a PICC line on Monday and then do 2 weeks of IV anti-biotics at home. Hopefully we'll be leaving on Monday - but knowing how things around here are it will be Tuesday.
The plan for the fence is still on. I am at the hospital and Jason is at home working on it. I don't mean to whine, but I really miss having him here. I never realized how hard it is to do all of this hospital stuff alone.
Posted By: HRH Dawnie
Re: Keep us in your prayers - 05/13/05 09:16 PM
Virtual hugs and love from me to you Becca! I remember once, driving myself to the emergency room, thinking "how much more alone can a person get?" but I think dealing with your little one on your own would be much harder
I'll bet ya anything he's just as torn about being home.
HUGS!!!
Posted By: tahdah
Re: Keep us in your prayers - 05/13/05 09:25 PM
You have every right to "whine". And I don't think anyone of us would consider that a "whine". We are here to support you and let you unload in anyway that makes you feel better. You are one stong lady. Thanks for taking the time to update us. You must be exhausted.
Posted By: CRAatBOK
Re: Keep us in your prayers - 05/13/05 09:32 PM
Becca, you aren't alone. While we can't be there to hold your hand or give you a hug, we are all doing it virtually. Heck, I will even virtually help Jason build the fence.
Posted By: Countess Kiwi
Re: Keep us in your prayers - 05/13/05 10:30 PM
I wish I were closer so that I could help you out at the hospital. Our kids have only been in there a night or two when they were small and doing that alone (someone had to be home with our other children) was difficult, I can't even fathom what it is like for you. virtual hugs and you aren't even close to whining and sometimes we all need to vent in one way or another. Take care of yourself and we are all thinking about you and Natalie and praying for a speedy recovery.
Posted By: Truffle Royale
Re: Keep us in your prayers - 05/13/05 11:49 PM
Feel like you've had the stuffings hugged out of you yet? If not, I'm next in line with the hugs and prayers.
Give our little trooper a hug and a smile from all of us. Then turn your back to the mirror, look over your shoulder and hug yourself and pretend it's all of us hugging you!
Posted By: corkygirl
Re: Keep us in your prayers - 05/14/05 03:57 PM
Becca, I have not had time to check the threads for a few days and I am so sorry to hear about this latest set back.
You can never get enough hugs so more coming your way from me. Keep pluggin along and remember that we all care.
Posted By: Quadspapa
Re: Keep us in your prayers - 05/16/05 03:23 PM
I hope you don't get tired of seeing this, but hang in there Becca. Be assured that many prayers are being offered on you and your entire family's behalf.
Posted By: Patsy Cline
Re: Keep us in your prayers - 05/16/05 04:55 PM
Still in my thoughts and prayers! I am glad to learn you are going home today!
Posted By: Princess Leia
Re: Keep us in your prayers - 05/16/05 08:01 PM
Yep, as Joey's Mom said, Natalie's going home today. She had a PICC line put in this morning so antibiotics can be administered from home! YEAH!!
Posted By: Queen Mum
Re: Keep us in your prayers - 05/17/05 09:50 PM
Quote:
Blood is not transfered from state to state unless there is a critical or very unusual need. The risk of loss of value is too high.
That being said, you can donate in the name of someone, anywhere in the country. While our lovely bear may not have your blood flowing through her, she'll have that love and support vicariously, and another in need could be saved.
Your blood donation could help many, including my dearest friend. With little bear in mind...please, consider that donation even if it won't physically leave your state!
YOu might check on this locally if you are interested. The Red Cross I am affiliated with - the blood center is with the Central Plains Region based out of Wichita, Kansas. Blood can be given here in Oklahoma and transported to Kansas. So it could be where you live or the blood region you live in.
Posted By: michele2005
Re: Keep us in your prayers - 05/19/05 09:48 PM
Also from Mississippi
Posted By: Anonymous
Re: Keep us in your prayers - 05/20/05 02:15 PM
Prayers from Kentucky!
Posted By: QCL
Re: Keep us in your prayers - 05/20/05 02:36 PM
Thanks.
Here's the latest...She had clinic yesterday. Her liver numbers continue to look good. But her hemoglobin dropped from 9 to 8 from Monday to Wednesday of this week. Natalie's latest infection - she was septic with pseudomonas, a NASTY little bacteria - in her blood system has made her doctors look into the possibility of an immune hemolytic anemia. Her hemoglobin is always low and this time it got to 6. We did a blood transfusion last weekend and now it appears that another one is coming.
From emedicine:
Immune hemolytic anemia occurs when antibodies form against the body's own red blood cells.
The antibodies may have been acquired from the transplant, even though we are the same blood type - I'm still confused by all of this - but I am holding off on research until we go back to Children's. Right now this is all theory - we're going to see a hematologist who will run a test called a Coomb's test and provide us with answers.
I'm so flipping frustrated. I mean she still has the PTC line in her tummy, she now has a PICC line for the infection, we've got 9 meds in the morning and at night, and now this. Sorry to vent...but is there a light at the end of this tunnel?
On a slightly more positive note, her mood is FANTASTIC
!!! And she ate 1 1/2 waffles this morning
!!!
Posted By: Truffle Royale
Re: Keep us in your prayers - 05/20/05 03:04 PM
God never gives us more than we can handle.
You are an amazing woman, Becca, and I'm not the only one who admires your ability to mother this wonderful (hungry
) little girl.
You're well on your way through the tunnel but, unfortunately, it's not one of those quick in and out ones. Hang in there and know we're all still here praying for the light to shine for you and the bear.
Posted By: TTC Queen
Re: Keep us in your prayers - 05/20/05 03:06 PM
Hang in there. (I know--that sounds trite!) I have a son who was born with several birth defects. The doctors did not give him a chance to live to be 1 year old. He is now 41, married, the father of 2 daughters and a pastor of a church. The doctors began calling him a miracle baby after he passed his 1st birthday. I now understand that God had a special plan for him and of course none of us knew that back then. I remember crying and being so frustrated because we seemed to take 1 step forward and 3 steps back for years and the things that were done to him--I swear they came from a medieval torture chamber.
I share this only because I wanted to help you keep your head up. I hope this does not sound like I am pontificating--I certainly don't mean to. I truly understand what you are going through and wish I could help you in other ways.
Please know that I am praying for your baby and your family. I always try to keep in mind--God never gives you more than he thinks you can handle. I just wish he did not have so much faith in me.
Posted By: Bones
Re: Keep us in your prayers - 05/20/05 03:32 PM
You have got to be one of the strongest people I (virtually) know. I can't imagine going through the roller coaster ride you are taking, but you have that special little girl to be strong for. You and Natalie are in my prayers. Just continue to have faith in God and he will take care of all of you.
Posted By: RobinB
Re: Keep us in your prayers - 05/20/05 04:48 PM
Hi from a newbie! I will add you to my prayers.
Posted By: Bengals Fan
Re: Keep us in your prayers - 05/20/05 04:49 PM
Becca, I totally agree that God never gives us more than we can handle, and that you are being made very very strong through all of this. Remember, when this is all over, you will be able to be an even better advocate for living organ donors and organ donation as a whole. The troubles you have gone through will make anything that comes up afterwards seem so small.
Just don't forget to enjoy the extra time you have with Natalie, and to smile at the fact that not only is your wonderful daughter alive, she's happy and hungry!
Posted By: Okie Dokie
Re: Keep us in your prayers - 05/20/05 05:34 PM
Becca, try to stay strong and know that we are all praying for you and your little bear.
Posted By: deppfan
Re: Keep us in your prayers - 05/20/05 08:10 PM
The Bear is going to grow up to be an amazing woman! Who know, maybe she'll be President...can I design her inaugural gown?
Posted By: Patsy Cline
Re: Keep us in your prayers - 05/20/05 08:31 PM
Becca... hang in there. You are in my thoughts and prayers.
Posted By: Princess Leia
Re: Keep us in your prayers - 05/20/05 09:06 PM
Lots and lots and lots of hugs, love & prayers coming from "Geekville"
Posted By: QCL
Re: Keep us in your prayers - 05/20/05 10:04 PM
Quote:
The Bear is going to grow up to be an amazing woman! Who know, maybe she'll be President...can I design her inaugural gown?
You bet!!!
Posted By: Princess Leia
Re: Keep us in your prayers - 05/24/05 04:05 PM
The Bear was admitted to Children's Memorial last night because her hemoglobin level was quite low. She had a blood transfusion and they're hoping to see the hemotologist today rather than having to wait for their appointment on Thursday. Other than the low hemoglobin, she's still doing well.
Please keep mom & dad in your prayers (and of course Natalie!) We pray for comfort & patience for them, and for the doctors to figure out what is causing the hemoglobin level drops and to quickly determine what the course of action is.
Posted By: Beagles22
Re: Keep us in your prayers - 05/24/05 04:10 PM
I am already praying for our little bear, as well as her parents and family. Thank god we know she is a fighter with very good doctors.
Posted By: Angel Eyes
Re: Keep us in your prayers - 05/24/05 04:24 PM
Gosh, I know they are all strong...and have lots of prayers coming their way, but how much more of this roller coaster can they take?
Best of Luck Natalie, Mom and Dad! Stay stong, you have a lot of people pulling for you. We are sending more prayers your way
Posted By: Patsy Cline
Re: Keep us in your prayers - 05/24/05 05:16 PM
Oh my goodness! I pray for their continued strength and patience. It the face of their ups and downs it forces me to see that what I have believed to be my life's problems or chalenges are really nothing at all.
Posted By: CRAatBOK
Re: Keep us in your prayers - 05/25/05 12:01 AM
Look out Becca, here come the hugs again. Hope we don't squeeze too tight.
Posted By: HRH Dawnie
Re: Keep us in your prayers - 05/25/05 01:44 AM
If KC's hug does not do you in, here comes mine. Becca we love ya hun. We're there in spirit if not body. God will guard our little bear
I just know he will!!!
Posted By: Truffle Royale
Re: Keep us in your prayers - 05/25/05 02:18 AM
ok, I'm next, move over Dawnie!!! I'm here to hug the remaining stuffins out of you, Becca. Know that we're here, still praying and thinking healing thoughts. Much love as always to our bear too.
Posted By: P*Q
Re: Keep us in your prayers - 05/25/05 12:31 PM
Big hugs headed your way from Mass too! Still praying and hug the bear for all of us too.
Posted By: QCL
Re: Keep us in your prayers - 05/25/05 02:11 PM
Thanks all.
We are home. For now. I wish I had more good news to tell you. But for now we're are going to wait for the powers that be in the hospital to decide what the next step is.
However, the bear does have a new den (webpage) to call home. Give me a bit and I'll add to my profile. And there is a picture of the bear with her mommy - however the picture was taken 3 days after the transplant surgery - so I'm not looking my bestest.
Posted By: Kansayaku
Re: Keep us in your prayers - 05/25/05 02:14 PM
Quote:
And there is a picture of the bear with her mommy - however the picture was taken 3 days after the transplant surgery - so I'm not looking my bestest.
The new webpage is great and you both look like the angels that you are.
Let your faith guide you and the comfort of the father give you strength.
Posted By: QCL
Re: UPDATE - 05/25/05 05:21 PM
Here's the email that I just got. With commentary by me in {}. Don't worry if you don't understand all the medical speak - it's taken me 19 months.
I love our nurse...
"US {ultrasound} again showed persistent portal vein (PV) stenosis with evidence of increasing spleen size. When we found this before, she was not having any of the symptoms that she is now, so we decided, with input from the surgery team, to monitor it. Well now that she is having symptoms - low blood counts, increasing spleen size- we’re most likely going to need to do a portal vein venogram, by your special friends in Interventional Radiology {he knows how well IR and I get along
- detect the sarcasm here?}. Basically they would put a catheter in her PV with a balloon to angioplasty the narrowing- much like they do in coronary artery disease. They could measure the pressure of the blood flow in the PV before and after the procedure to ensure that they did a good job. Then we would watch her closely (with serial US) for recurrence of this problem. If it came back, she may require a indwelling mesh stent- not like the one she has now in her bile duct. Dr. Whitington wanted to wait for the hematology testing to come back, first, and have Dr Alonso go over all this stuff too. For now, I will send a repeat CBC on Thursday- to look for sudden drop of hemoglobin and then weekly on Mondays. I called home care with those instructions. Hematology will be following her closely as well. Argh.
{When I read it I try to sound like a pirate - it makes me smile more.
}"
Posted By: CRAatBOK
Re: UPDATE - 05/25/05 05:40 PM
Becca, I don't know what I can say that hasn't already been said. Just know that I am thinking about you, Jason and NatBear. I will have to look for some additional ways to make you smile.
Posted By: corkygirl
Re: UPDATE - 05/25/05 05:51 PM
I was too busy to look at the BOL Couch yesterday much and I missed your posts. I am so sorry to hear that the ups and downs continue for you guys. Lots of hugs coming your way with prayers to support you. Give that little one a kiss for me.
Posted By: TTC Queen
Re: UPDATE - 05/25/05 07:41 PM
More prayers and hugs coming from the Texan who lives in Oklahoma.
Posted By: QCL
Re: UPDATE - 05/25/05 08:25 PM
Can I vent a little more? The car broke down while I was on my lunch break. I went to the babysitter's house to give the bear her IV meds and then poof it wouldn't start. It's all covered under warranty and everything is going to work out ...but Argh (said like a pirate) I need a vacation!!!!!
Quote:
I need a vacation!!!!!
I hear Minneapolis is quite nice this time of year
And Madison is a nice half-way stop on the way!
Posted By: CRAatBOK
Re: UPDATE - 05/26/05 04:53 AM
Calgon, take me away.
Posted By: E.E.G.B
Re: UPDATE - 05/26/05 10:42 AM
OTOH, it's SUMMER in Dallas already...... AND we have the best Mexican food.
Cincinnati is having Taste of Cincinnati this weekend, and they are opening the new Wolf Woods at the Cincinnati Zoo too... Plus, we have Cincinnati Chili!
Cincinnati Chili - mmmm ... good stuff!!
It has been nice and sunny here in Twin. No humidity and little to no mosquitos and I haven't noticed too many fly's yet...sounds good, doesn't it.
Posted By: QCL
Re: UPDATE - 05/26/05 07:15 PM
Well, I did get a mini-vacation today. The bear woke up with a slight fever and vomiting (mmm...sorry if anyone just ate). And she was kind enough to share this bug with me. So today her and I are cuddling on the couch watching Star Wars Episode II.
Posted By: Bones
Re: UPDATE - 05/26/05 10:26 PM
The cuddling sounds nice! Prayers and hugs from New Mexico.
Posted By: CRAatBOK
Re: UPDATE - 05/27/05 02:59 AM
Quote:
Cincinnati is having Taste of Cincinnati this weekend, and they are opening the new Wolf Woods at the Cincinnati Zoo too... Plus, we have Cincinnati Chili!
they were actually talking about the Chili on NPR this evening.
Becca, sorry you got a bug, but glad you got some down time.
They were talking about Cincy Chili in KC? Cool.
By the way, if you come, go to Camp Washington Chili or Price Hill Chili. Don't fall for the "Skyline" or "Goldstar" mass produced stuff
Posted By: CRAatBOK
Re: UPDATE - 05/27/05 09:16 PM
Actually it was a national show that was on in KC. I think it is called "The next Best Thing" It is on Thurs. nights here.
Posted By: QCL
Re: Calling all prayer warriors... - 05/31/05 03:28 PM
I really need you guys right now...
On top of everything else...a test for EBV just came back positive. This can lead to PTLD and her trans. team mentioned it today for the first time (which caused much shock to me). We are scheduling a CT scan for this week and will be doing the portal vein angioplasty on Friday.
~Definition from CLASSKIDS.org:
PTLD stands for post transplant lymphoproliferative disease. This is a problem that occurs in transplant patients and is believed to be caused by an interaction between immunosuppression medications and a chronic viral infection called EBV (Epstein Barr Virus). PTLD occurs in a small percentage of transplanted patients and
can progress to lymphoma, a cancer of the blood cells . PTLD can sometimes be treated by decreasing or stopping the immunosuppression medications.
But on a side note - Natalie (good girl that she is
) pulled her PICC line out (Saturday)!! This was the last day of the meds and she got all of her doses for the day, so she pulled it (how she knew that it was the last day is beyond me). She had a pretty good weekend, but she’s quite moody (we’ll see what the labs show I guess), she’s also not sleeping well, but I’m trying not to get myself all worked up.
Posted By: TTC Queen
Re: Calling all prayer warriors... - 05/31/05 03:32 PM
Your family is in my prayers.
Posted By: Retired DQ
Re: Calling all prayer warriors... - 05/31/05 03:40 PM
Continuous in my thoughts as well.
Posted By: Princess Leia
Re: Calling all prayer warriors... - 05/31/05 03:46 PM
What can I say to take away your pain? I think we all have the same feeling of helplessness. Sending lots of prayers and virtual hugs.
Posted By: Angel Eyes
Re: Calling all prayer warriors... - 05/31/05 03:46 PM
Oh my....we are definitly going to say extra prayers for Natalie and her family! Hang in there
Posted By: Bengals Fan
Re: Calling all prayer warriors... - 05/31/05 03:56 PM
And just when I thought I could stop praying for that sweet little angel.... You're back on top my prayer list!
Posted By: Bones
Re: Calling all prayer warriors... - 05/31/05 04:04 PM
Prayers still coming your way.
Posted By: Busy Bee, CRCM
Re: Calling all prayer warriors... - 05/31/05 04:09 PM
I said a prayer for you, your husband, Natalie, and the medical staff just as I finished reading your latest post.
Hang in there!
Posted By: P*Q
Re: Calling all prayer warriors... - 05/31/05 04:27 PM
Continues prayers Becca.
Posted By: VioletRose
Re: Calling all prayer warriors... - 05/31/05 04:37 PM
Praying for you, thinking of you and knowing you will get through this.
Posted By: someone else
Re: Calling all prayer warriors... - 05/31/05 05:00 PM
You will be in my thoughts and in my heart. She is a tough little girl and so are you. Hang in there!
Posted By: Beagles22
Re: Calling all prayer warriors... - 05/31/05 05:01 PM
Praying for all of you in this time of need. I am sending virtual hugs to you and yours and thinking of you often!!
OOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO
Posted By: deppfan
Re: Calling all prayer warriors... - 05/31/05 05:30 PM
You, Jason, and Natalie are in my thoughts and prayers. I also pray for all medical personnel who have anything to do with you all. Hang tough Becca. As Carman says..."It may seem like Friday night, but Sunday's on the way!"
Posted By: Countess Kiwi
Re: Calling all prayer warriors... - 05/31/05 05:39 PM
Continued prayers for your family and all that are involved. Hang in there, we are all here for you whenever you need to talk (type
)
Posted By: Skittles
Re: Calling all prayer warriors... - 05/31/05 06:18 PM
Prayers are coming from Georgia also.
Posted By: Princess Romeo
Re: Calling all prayer warriors... - 05/31/05 07:03 PM
Becca and Natalie - You are in my prayers also. May G-d's all powerful Love shine upon both of you and bring you strength and well-being.
Posted By: Okie Dokie
Re: Calling all prayer warriors... - 05/31/05 08:39 PM
Continued prayers from me as well.
Posted By: waldensouth
Re: Calling all prayer warriors... - 05/31/05 08:45 PM
Continued prayers coming your way!
Posted By: CRAatBOK
Re: Calling all prayer warriors... - 05/31/05 11:20 PM
Becca, wish I could say or do something to make your pain and angst go away, but I can't. Just know that I am thinking of you and Bear.
Posted By: Truffle Royale
Re: Calling all prayer warriors... - 06/01/05 12:38 AM
Things happen in threes for me...I've gotten two biggies answered by praying recently. I'm making the bear's recovery with NO sign of PTLD or any other alphabet soup problem my number three.
Posted By: corkygirl
Re: Calling all prayer warriors... - 06/01/05 03:04 AM
I wish I could do anything that would make everything better RIGHT NOW!!! All I can do is let you know that I care and that you are all in my thoughts. Hugs your way
Posted By: RR Joker
Re: Calling all prayer warriors... - 06/01/05 12:49 PM
What a tough, rough road you all have been traveling. I pray your trail will smooth out for each of you very soon. Thoughts and prayers continue from Georgia.
Posted By: Princess Leia
Re: Calling all prayer warriors... - 06/01/05 01:05 PM
Bear Mom - I hope you have a better day today. Always in my prayers - Leia
Posted By: QCL
Re: Calling all prayer warriors... - 06/01/05 01:54 PM
We're going to be admitted again
- to the housepillow
(that's how my cousin's son thought hospital was spelled when he sent us a card) - hemoglobin down to 4.5! She needs another transfusion
. We'll probably also do the portal vein angioplasty while we are there.
Posted By: Beagles22
Re: Calling all prayer warriors... - 06/01/05 02:55 PM
May His strength and power be with you today!!! I am praying for you and your little bear Becca!!!
Posted By: Quadspapa
Re: Calling all prayer warriors... - 06/01/05 02:58 PM
You have my prayers for you Natalie and Becca.
Posted By: Silent Valley
Re: Calling all prayer warriors... - 06/01/05 08:56 PM
Prayers from South Texas for the whole family.
Posted By: Princess Leia
Re: Calling all prayer warriors... - 06/02/05 03:33 PM
New post on Natalie's new webpage
www.nataliebear.com (if you haven't checked it out - do so ... there are so many cute pictures of the Bear!)
Thursday, June 02, 2005 09:13 AM CDT
We are back in the hospital. Natalie got a transfusion last night. Her hemoglobin was down to 4.5. (Below 10 they will usually do a transfusion, but before transplant Natalie usually hovered around the 10 mark.)
We are going for a CT (Cat) Scan later this morning and will most likely do the Portal Vein Angioplasty tomorrow. We were supposed to do the CAT scan yesterday, but it was more important that she got the blood transfusion than the CT scan.
I'll post again, when I know more. We'll be here awhile - at least until we figure out what is going on with her.
It sounds like they'll be there for awhile. If you'd like to send The Bears an e-card, here is the
Link. Hopefully, they'll have some answers soon.
Posted By: Bengals Fan
Re: Calling all prayer warriors... - 06/02/05 04:21 PM
Princess,
Do you have a room number?
Posted By: Anonymous
Re: Calling all prayer warriors... - 06/02/05 05:38 PM
Quote:
Princess,
Do you have a room number?
It's on the web-site.
VR
Posted By: Princess Leia
Re: Calling all prayer warriors... - 06/02/05 07:09 PM
Sorry, my bad ... anon is right, it's on the website - room 609.
Posted By: Beagles22
Re: Calling all prayer warriors... - 06/03/05 01:55 PM
I love the new pictures, she is the most adorable little girl!! Still praying for you, stay strong!
Posted By: QCL
Re: Calling all prayer warriors... - 06/03/05 04:12 PM
Hey all!
Here's an update....and it's not an especially good one.
CT scan showed that her lymph nodes are indeed larger than they should be. So in our discussions with the doctors, it was decided that they would go forward like this is PTLD in the early stages. This makes sense.
Jason came up with a good explanation, EBV is attacking the bone marrow, which produces hemoglobin - hence the low low low hemoglobin numbers. Tha plan of attack is to gradually DECREASE immuno-suppression drugs, to allow the body to fight the EBV/ PTLD. Right now she's in a procedure to take a portion of her bone marrow to get a better idea of what to do and to see how severe the PTLD is.
Say lots of prayers for our little fighter.
Posted By: someone else
Re: Calling all prayer warriors... - 06/03/05 04:33 PM
She will be in my heart, as will you and your husband. Hang in there...
Posted By: deppfan
Re: Calling all prayer warriors... - 06/03/05 05:09 PM
Lots and lots of prayers coming your way. Hang on Becca and Jason. May God Bless and keep you all.
Posted By: Patsy Cline
Re: Calling all prayer warriors... - 06/03/05 08:34 PM
Continued prayers for your little fighter!
Posted By: CRAatBOK
Re: Calling all prayer warriors... - 06/03/05 10:41 PM
Adorable picture. Hope she is getting lots of cards to look at.
Posted By: corkygirl
Re: Calling all prayer warriors... - 06/04/05 10:21 PM
Pulled up Natalie's website today and just had to call my hubbie in to look, what a wonderful picture of your little fighter!!
Posted By: QCL
Re: Calling all prayer warriors... - 06/05/05 03:46 PM
Hey all...taking a little break in the computer area...
if you do send cards (and for those that have - THANKS) please make sure to use Natalie's last name: Natalie K. Some people have put Nataliebear (which is just fine with us) but confusing for the poor volunteers.
Posted By: Truffle Royale
Re: Calling all prayer warriors... - 06/05/05 07:04 PM
Hey, Becca! How's our bear today? And how are you and hubby holding up? Hope you at least get a chance to use the sunroom at the hospital to soak up some of those healing rays. It looks like summer is finally coming to the Midwest. Continued prayers and hugs.
Posted By: Princess Leia
Re: Calling all prayer warriors... - 06/08/05 02:07 PM
Please keep the bears in your prayers today as Natalie undergoes surgery. Here is today's post on her
Website :
Wednesday, June 08, 2005 07:47 AM CDT
Today is the day..for the lymph node tissue biopsy.
It is a fairly easy surgery, but it is just that, a surgery. We had 2 of Dr. Superina's residents come and talk to us yesterday. They will go in around her right lung and take a sample of a lymph node near that (since that was the most enlarged one on the CT scan).
Natalie is scheduled to be 2nd case (10 am). But last night was running a fever of 39 C (102.2 F) and her hemoglobin this morning was 5.2. So we'll see what these 2 new factors will play in her surgery's scheduling.
Her doctors let us know that her liver numbers look GREAT!!!
Posted By: Princess Romeo
Re: Calling all prayer warriors... - 06/09/05 12:50 AM
Continued prayers for G-d's perfection to shine through Becca and illuminate the pefectness of her being.
Posted By: deppfan
Re: Calling all prayer warriors... - 06/09/05 01:43 PM
Still praying for you guys!
Posted By: Okie Dokie
Re: Calling all prayer warriors... - 06/09/05 03:43 PM
Quote:
Still praying for you guys!
Me too.
Posted By: Busy Bee, CRCM
Re: Calling all prayer warriors... - 06/09/05 03:56 PM
I'm also praying for your family! I showed my son the pictures of sweet Natalie and he's praying too (he's only 7!)
Posted By: Beagles22
Re: Calling all prayer warriors... - 06/09/05 05:58 PM
I too have shared the beautiful photos with a couple of my co-workers and asked for their prayers. They have been added! What a wonderful family you have!! All my hopes and dreams for Natalie and your family coming your way!!
Posted By: corkygirl
Re: Calling all prayer warriors... - 06/10/05 01:30 PM
As always, Natalie is in my prayers. I hope the surgery went well, she is such a fighter.
Posted By: P*Q
Re: Calling all prayer warriors... - 06/10/05 01:37 PM
Prayers flowing heavily from Mass!
Posted By: Queen Mum
Re: Calling all prayer warriors... - 06/10/05 03:22 PM
Any news on how the surgery came out?
Posted By: Patsy Cline
Re: Calling all prayer warriors... - 06/10/05 04:10 PM
Her latest journal entry...
Quote:
Wednesday, June 08, 2005 09:39 PM CDT
Natalie is out of surgery.
She looks good.
She has a chest-drain helping to drain any air or fluid that may be around the lungs from surgery. She also has a catheter (Natalie, honey, when you're older don't kill mommy for this) and they reinforced her PTC tube (bili line).
They did a small incision in her chest right above her right breast. Dr. Superina was able to remove 3 nodes. 2 small and one "larger, about 3cm, nasty looking one" (his words not mine). It would be about the size of a ping-pong ball. Results will most likely not be back on this until Friday. He is hoping to get some good tests run with the larger node. They have her on a PCA pump for pain for the next few days. Jason or I can give her a dose once every 8 minutes if she needs it.
In my prayers!
Posted By: Walleye Woman
Re: Calling all prayer warriors... - 06/10/05 04:33 PM
I'm definitely praying for you and Natalie.
Posted By: Quadspapa
Re: Calling all prayer warriors... - 06/10/05 04:51 PM
Rest assured, we will keep on praying for you Becca and Natalie...
Posted By: Princess Leia
Re: Calling all prayer warriors... - 06/10/05 04:59 PM
Quote:
Any news on how the surgery came out?
There's a new update on her new website . They're hoping for results of the biopsy this afternoon.
Posted By: Cat Woman
Re: Calling all prayer warriors... - 06/13/05 04:35 PM
I've been reading these posts and praying for the bear. But, I checked her website today and Friday and it really hit me how much you've been going through. It's one thing to talk about it; it's another to actually see the pictures and that adorable little girl's face.
You have continued prayers coming from MA!
Posted By: Truffle Royale
Re: Calling all prayer warriors... - 06/15/05 02:24 AM
Just checked her website (9:00pm Tuesday) and Becca writes they expect to go home tomorrow. Whoopie! They could all use the time at home, I'm sure. Hopefully Becca will find time to update us again. More prayers from just a bit north of you headed your way, little bear!
Posted By: LoisLane
Re: Calling all prayer warriors... - 06/15/05 02:43 PM
Thanks for sharing the good news!
Posted By: Anonymous
Re: Calling all prayer warriors... - 06/15/05 02:47 PM
Prayers are with you from Kentucky!
Posted By: CRAatBOK
Re: Calling all prayer warriors... - 06/16/05 12:46 AM
Holy cow, I was gone for a week and missed a lot. Becca, I hope you did get to go home and I am glad that you and Jason were able to get away for a while. Give the little trouper a hug for me. And here is one for you.
Posted By: QCL
Re: Calling all prayer warriors... - 06/16/05 03:44 PM
There is nothing quite like sleeping in your own bed!! Oh, happy day.
Thanks all for your prayers and encouraging words!!! Here's an update:
We will not have to go back next week for a repeat bone marrow biopsy. They are sending the previous bone marrow slides to Pittsburg (they are PTLD experts) and I think that our doctors still suspect that the dead bone marrow cells are related to the PTLD. If not, we’re asking them to send it to other hospitals that specialize in looking at bone marrow.
For the time being, we will have blood drawn every Monday. This is due to Natalie’s continuing anemia. If her hemoglobin drops we’ll have to get more blood transfusions – but this is something that we can come in and do and then be sent home. Then we’ll go back on the 30th for a repeat CAT scan, to see if the lymph nodes are shrinking and if the PTLD treatment is working.
PTLD stands for post transplant lymphoproliferative disease (try saying that 3 times fast). It is believed to be caused by an interaction between immunosuppression medications and a chronic viral infection called EBV (Epstein Barr Virus). 85% of the population gets EBV, for most it’s like mono, you feel icky and then you get over it. Only neither Natalie nor I (her liver donor) ever had it, so since this was her first case of EBV, it was bound to hit her hard.
In non-medical news, after being discharged yesterday we took Natalie for her first visit to the Zoo (the Lincoln Park Zoo – it’s a free zoo). She loved the bears (like that was a surprise) and kept pointing at them. She also loved the tiger and giggled as it paced back and forth in front of her (I was making meowing noises, so she may have been laughing at me too). Then she and daddy went for a ride on the Carousel!
Posted By: Beagles22
Re: Calling all prayer warriors... - 06/16/05 04:01 PM
Happy Day! The little ones just love the animals don't they. I hope things keep getting better for you and Jason and Natalie. My thoughts and prayers are still with you!!
Posted By: hmdagal
Re: Calling all prayer warriors... - 06/16/05 04:47 PM
It's always great to hear good news. I'm amazed that Natalie was able to go out to the zoo after all that she's been through in the last week. That's wonderful!
Posted By: Okie Dokie
Re: Calling all prayer warriors... - 06/16/05 05:29 PM
Great news, Becca. Natalie is an amazing little girl!
Posted By: Bones
Re: Calling all prayer warriors... - 06/16/05 07:15 PM
That is such good news. I'm so happy you got to go home. Give your bear a big hug for all of us.
Posted By: Bengals Fan
Re: Calling all prayer warriors... - 06/16/05 07:20 PM
Quote:
In non-medical news, after being discharged yesterday we took Natalie for her first visit to the Zoo (the Lincoln Park Zoo – it’s a free zoo). She loved the bears (like that was a surprise) and kept pointing at them. She also loved the tiger and giggled as it paced back and forth in front of her (I was making meowing noises, so she may have been laughing at me too). Then she and daddy went for a ride on the Carousel!
If she liked the Lincoln Park Zoo, you should take her out to Brookfield Zoo and let her watch the Dolphin Show! You will ALL have fun with that. (Don't sit in the "Splash Zone")
Posted By: corkygirl
Re: Calling all prayer warriors... - 06/16/05 08:47 PM
That is such good news and there is nothing like a trip to the zoo to perk up a little one. We just joined the Brookfield Zoo, figured we two old folks would enjoy just walking around from time to time, watching the little ones (no grandchildren yet). Maybe we'll see you there one of these nice warm Sunday afternoons!!!!
Posted By: SMQ, CRCM
Re: Calling all prayer warriors... - 06/16/05 10:07 PM
Great news, it just amazes me how resilient kids are. Natalie is such a cutie. I bet she enjoyed being home even more than you did. I will keep praying that things just keep getting better and better.
Posted By: Angel Eyes
Re: Calling all prayer warriors... - 06/17/05 02:12 PM
Have a great weekend, Happy Father's Day to Jason!
You all are such amazing people. As I may have said before and I know others have said it to. You are an inspiration to all! Keep your chin up and we will continue to pray that Natalie gets better every day.
Posted By: Patsy Cline
Re: Calling all prayer warriors... - 06/17/05 04:58 PM
What a fun day at the zoo!
Posted By: CRAatBOK
Re: Calling all prayer warriors... - 06/18/05 01:13 AM
Becca thanks for the update and glad you got to go home. I am beginning to feel pretty darn educated with all the medical lessons you give us. You may consider a change in careers when this is all over, you are become quite an expert.
Posted By: Anonymous
Re: Calling all prayer warriors... - 06/20/05 06:48 PM
So glad to hear she was up to the zoo! That's amazing, kids are amazing. Best wishes that your daughter gets better with each passing day! You're in my thoughts & prayers!
Posted By: Truffle Royale
Re: Calling all prayer warriors... - 06/21/05 02:53 AM
So, here we are late on Monday night, wondering how the bear's blood work went today. Hope she's doing ok in the heat we've been having.
Posted By: QCL
Re: Calling all prayer warriors... - 06/21/05 01:14 PM
Sorry bjp
Here's an
update and since I made you wait, I even added new pictures!!
Posted By: RR Joker
Re: Calling all prayer warriors... - 06/21/05 01:21 PM
Great News! About the tube tho...sounds like the bear wants it gone as much as ya'll do!!
Posted By: deppfan
Re: Calling all prayer warriors... - 06/21/05 02:58 PM
Doin the Happy Dance in my office!
Great news Becca.
Posted By: Bengals Fan
Re: Calling all prayer warriors... - 06/21/05 03:07 PM
Becca, you poor thing you, how do you put up with a child that stubborn and that dog gone CUTE?!
Posted By: Beagles22
Re: Calling all prayer warriors... - 06/21/05 04:16 PM
Those pictures are soooo adorable! I love the little pool pic's. I am glad to hear about the labs coming back good, sounds like it's getting better for you and yours!!!
Posted By: waldensouth
Re: Calling all prayer warriors... - 06/21/05 05:14 PM
Wonderful, wonderful news!
Posted By: Truffle Royale
Doin' the bear's happy dance! - 06/22/05 01:15 AM
My little pony picture is the best!!! I'm grinning ear to ear and doin the happy dance with deppfan long into the night. Will keep on praying for continued progress for the bear and her parents too.
Posted By: corkygirl
Re: Doin' the bear's happy dance! - 06/22/05 01:33 PM
What wonderful news and again, what beautiful little girl you have.
Thanks for the update and the pictures, the pool pictures make me want to join her!!
Posted By: CRAatBOK
Re: Doin' the bear's happy dance! - 06/22/05 10:52 PM
Great pictures Becca. She is a doll. She just makes you want to give her a hug.
Posted By: Queen Mum
Re: Doin' the bear's happy dance! - 06/23/05 04:26 PM
Love those big eyes! She is just adorable!
Posted By: QCL
Re: Keep us in your prayers - 06/28/05 01:40 PM
Fever of 102.5 yesterday (already back to normal today)...home nurse came out to take blood, but we haven't gotten results yet. grrr....
Posted By: corkygirl
Re: Keep us in your prayers - 06/28/05 03:37 PM
It must be so frustrating, like living on a rollercoaster with so many ups and downs. Hopefully this is just one of those small dips
Posted By: QCL
Re: Keep us in your prayers - 06/28/05 06:35 PM
OK here's an update.
We're going back to the hospital Wednesday at 7pm. Little miss Natalie's hemoglobin dropped again. So we need another blood transfusion. Then on Thursday we will pull the PTC (bili) tube in her tummy (WOOHOO) and do a CT scan of her lymph nodes. (She needs the transfusion before she can be sedated for the CT scan). Then we're hoping to come home Thursday.
Posted By: Bengals Fan
Re: Keep us in your prayers - 06/28/05 08:44 PM
May God be the pilot on your roller coaster ride!
PS: You mean she hasn't pulled her tube on her own again yet?
Posted By: Truffle Royale
Re: Keep us in your prayers - 06/28/05 08:54 PM
Godspeed.
Posted By: Beagles22
Re: Keep us in your prayers - 06/29/05 01:02 PM
LUCK LUCK PRAYERS PRAYERS LUCK LUCK PRAYERS PRAYERS
LUCK LUCK PRAYERS PRAYERS LUCK LUCK PRAYERS PRAYERS
LUCK LUCK PRAYERS PRAYERS LUCK LUCK PRAYERS PRAYERS
LUCK LUCK PRAYERS PRAYERS LUCK LUCK PRAYERS PRAYERS
Posted By: Quadspapa
Re: Keep us in your prayers - 06/30/05 03:04 PM
Lots of BOL friends are with you
Posted By: Truffle Royale
Re: Keep us in your prayers - 07/01/05 03:05 AM
Happy 4th of July to the entire Bear Clan! Hope all went well and you're back home watching the fireworks.
Hugs & prayers...bjp
Posted By: Princess Leia
Re: Keep us in your prayers - 07/01/05 01:53 PM
They're home
There's an update on the
Website
Posted By: QCL
Re: Keep us in your prayers - 07/01/05 02:30 PM
Hey, PL your link isn't working:
Thursday, June 30, 2005 09:06 PM CDT
"You take the good, you take the bad..." I've got the "The Facts of Life" theme song running through my head right now.
The good:
*Natalie had a blood transfusion last night which slightly bumped up her hemoglobin. This morning she then got her PTC line pulled (WOOHOO!!!) and had a CT scan. And we were actually able to coordinate the IR team with the CT team and only needed to sedate for the CT scan.
*The CT scan showed mixed results. Some of the lymph nodes appear to be smaller (that's what we want), but some of them look the same or a hair larger - further analysis needed. Larger is not good and can mean that the PTLD condition is progressing badly. We were told to remember that it takes time (perhaps a month even) for these things to start to shrink back to their normal size, and we should still have hope.
*And we're home now, so that's always a good thing.
NOTE: For any of you liver parents that frequent 6 west at Children's - ask for room 684!!! It's the only room on the floor with a SHOWER!!! And of course we only stayed for one night.
The bad:
*Bile is leaking out of the hole where the tube was in her tummy. When we got home a few hours ago, Natalie (as usual) pulled the dressing - in this case steri-strips and liquid-stitches - off.
*We still don't know for certain what is making her hemoglobin act like a roller-coaster, so we'll probably be back for a transfusion in the near future again.
Posted By: Princess Leia
Re: Keep us in your prayers - 07/01/05 03:19 PM
Quote:
Hey, PL your link isn't working:
Duh! Helps to add the link
Posted By: Beagles22
Re: Keep us in your prayers - 07/01/05 04:16 PM
So glad you get to be home for the holiday weekend. I hope you do something relaxing for all. Thinking of you and yours!!!
Posted By: QCL
An update and call for action. - 07/05/05 08:52 PM
1st things, 1st...The red cross is in a full emergency for blood. Here is the website where you can schedule an appt:
Please give blood or
For info in your area.
Natalie has had at least 11 transfusions (we've lost count, honestly) please give a little of yourselves.
OK now to the fun stuff.
Phew...what a whirlwind of a weekend!!!!
Our friends from "up-north" (the creators of our AWESOME website) drove 5.5 hours each way for a weekend visit. And my parents graciously offered to let all of us use their pool - well everyone but Natalie (I'll get to that).
On Sunday the home nurse came out to take labs (late...argh!). Natalie was in a great mood - that is until I called Children's. Her bili tube site was still leaking - hence no swimming in the pool - it needs to heal from the inside-out but they told me to try putting an ace bandage around her tummy to apply pressure. I guess I applied too much pressure, because Natalie threw up on me! The rest of Sunday was spent playing and re-dressing the ever leaking wound. Then it stopped. Sunday afternoon I changed the dressing with my mom and a nurse friend and that did the trick, no leaking since - WOOHOO!!!
Natalie LOVED the fireworks (as long as she was sitting on her daddy's shoulders) last night.
In medical news:
The labs from Sunday look terrific!! Bili is steady, AST and ALT are normal, GGT is up a bit...and drum-roll please...hemoglobin is actually up to 10
!!!!!!!!!!!! Thanks so much for the prayers - they are working.
Posted By: Cat Woman
Re: An update and call for action. - 07/05/05 08:55 PM
I was just considering donating blood tonight. I think I definitely will now!
Great news! I'll continue my prayers!
Posted By: Bengals Fan
Re: An update and call for action. - 07/05/05 09:11 PM
Up until I went on Methotrexate and Remicade, I gave blood regularly. Now they won't let me
Posted By: Countess Kiwi
Re: An update and call for action. - 07/05/05 10:08 PM
What awesome news! Thanks for the update!
Posted By: CRAatBOK
Re: An update and call for action. - 07/06/05 02:20 AM
Wooopeee. Good news. Glad she got to see the fire works. Wish I could give blood but my veins don't allow it. I can barley get enough out for testing when needed.
Posted By: corkygirl
Re: An update and call for action. - 07/06/05 10:26 PM
What a wonderful update to read today, YEA!!!!!!! Glad she liked the fireworks, did you manage to dodge the rain?
Posted By: Bones
Re: An update and call for action. - 07/06/05 10:42 PM
So happy to hear the good news! Keep it coming!
Posted By: Beagles22
Re: An update and call for action. - 07/08/05 04:32 PM
We have a blood drive this weekend, the red cross was on the news this morning. I always give, but it makes my hubby sick to see the blood at all so he can't come with me. I am SOSOSOSOSO glad that the bear is feeling better. HE listens to us!!
Posted By: Queen Mum
Re: An update and call for action. - 07/12/05 08:36 PM
Our bank has started in in-house blood-drive every 50 some days (which is the time you can give again). The slots have been full every time.
Posted By: HRH Dawnie
Re: An update and call for action. - 07/12/05 08:47 PM
Beagle and Boomer, when they give blood they can also choose to be added to the national doner registery for Luekemia
Our blood mobile now asks every donor (at the bank's request) if they want to be added. We've had amazing success adding to the list of potential donors
Posted By: Princess Leia
Re: An update and call for action. - 07/12/05 09:49 PM
The bear had a reaction after a transfusion yesterday. It sounds like she'll be ok, but quite scary nonetheless.
Check out momma bear's post on the
Website
Posted By: Countess Kiwi
Re: An update and call for action. - 07/12/05 10:01 PM
OMG! I hope they can relax a little more today.
Posted By: tahdah
Re: An update and call for action. - 07/12/05 10:06 PM
Thanks PL for keeping us posted. Prayers still coming their way. I can't imagine, I'm not sure I would have the strength, but I guess when you love someone, you find it.
Posted By: Truffle Royale
Re: An update and call for action. - 07/13/05 01:25 AM
Dear Becca, Little Bear and Daddy Bear,
I cannot imagine where you get the strength and fortitude you show time and again. Saying a prayer seems so small in comparison yet it's all I have to offer. So, I'm doubling my efforts and asking all my personal angels to step it up a notch too. Wishing a speedy recovery for the Bear and sending lots of (((hugs))) for all of you.
Posted By: corkygirl
Re: An update and call for action. - 07/13/05 06:19 PM
I can't imageine what a difficult and scary night that was for you all. I'm glad things seem to be better and you will be in my prayers, as always. I printed a copy of Natalie's picture from the website and posted it on the board next to my desk, keeps her in my thoughts all day. Anyone that comes in to my office, asks who she is and after I tell them about her, they add her to their prayers also. Hope you can feel that we are all with you.
Posted By: HRH Dawnie
Re: An update and call for action. - 07/13/05 09:26 PM
Hug our bear for me. The little dear is such a fighter and so are her lovely parents. We're keeping the entire family in our prayers!
Posted By: Anonymous
Re: An update and call for action. - 07/21/05 12:54 PM
waiting for news on the Bear....I've been checking her journel, but no update since they brought her home. Hoping and praying that all is going well.
Posted By: corkygirl
Re: An update and call for action. - 07/21/05 01:21 PM
Me too. I keep checking to see if we have an update, how are things going? How is "our"
little girl doing????
Posted By: someone else
Re: An update and call for action. - 07/21/05 04:59 PM
I am hoping that no news = good news!
Posted By: Cat Woman
Re: An update and call for action. - 07/21/05 06:00 PM
Quote:
waiting for news on the Bear....I've been checking her journel, but no update since they brought her home. Hoping and praying that all is going well.
I've been checking too. I hope everything is OK!! You have some serious prayers coming from MA!
Posted By: QCL
Re: Keep us in your prayers - 07/22/05 02:18 PM
Things are better...
Sorry for the delay in updates...
Let's see...Natalie's hemoglobin on Tuesday was 10. The level is good, but since the hospital didn't do a check of it after her transfusion on Monday, we don't know if it's a steady level or not. Today it is 9.0. A slight drop, but not enough to admit us. Retic is up to 3.2 the highest that it has ever been (when she was diagnosed with PTLD and IHA (immune hemolitic anemia), it was 0.2). This means that the bone marrow is starting to create new red blood cells - a positive thing.
The CT angiogram went well yesterday. The most difficult part was putting an IV in Natalie. Her PICC line was too small for the fast flowing contrast that they wanted to use. But our (nurse) friends from IR were around and since they didn't have any patients at the time, they offered to use an ultrasound to help them place the IV. And right before, they gave Natalie a little versed (a sedative) to help calm her...ah, versed. This was a great help!
Then we proceeded to the CT scan room. They were running late, a PICU patient bumped us. But we'd rather be bumped than be the patient doing the bumping, so we waited.
Natalie was a hoot yesterday. Her Papa Dempsey came with and she talked and played with him all day.
Partial results from yesterday's CT scan:
*Lymph nodes (issue from PTLD) are improving.
*Bile duct dilation was seen, but also improved.
*Portal vein issue is stable. It has not narrowed anymore, and there is not clotting to be seen behind the narrowing. It actually widened a small (1mm) amount - this is a small improvement.
Posted By: Retired DQ
Re: Keep us in your prayers - 07/22/05 02:24 PM
Glad to hear the good news!
Posted By: LoisLane
Re: Keep us in your prayers - 07/22/05 03:24 PM
Ditto on the good news
Posted By: RR Joker
Re: Keep us in your prayers - 07/22/05 03:36 PM
Glad to hear the news is promising...but Mom...you sound exhausted...I hope you all can get some rest this weekend.
Posted By: Angel Eyes
Re: Keep us in your prayers - 07/22/05 04:50 PM
Funny - I thought the same thing when I read the thread.
Mom sounds very exhausted....is their any way you guys can get a little break. Even for a couple of hours. I think you and Jason need a nice dinner out and a long relaxing bubble bath!
Don't forget while you take care of that precious angel of yours to take care of yourself.
Congratulations on the good news.
Posted By: deppfan
Re: Keep us in your prayers - 07/22/05 04:57 PM
Thoughts and Prayers Becca.
Posted By: Princess Leia
Re: Keep us in your prayers - 07/22/05 05:08 PM
Be sure to check out the new bear pictures on her webpage under Pictures ---> Lots of Fun
Posted By: QCL
Re: Keep us in your prayers - 07/22/05 05:24 PM
Thanks guys, I'm not sure why I sound exhausted
honestly, I didn't mean to come across that way...sorry
.
But being home, sleeping in my own bed, and running on the treadmill did me a world of good this morning! And I'm discovering that coffee - ick - is fast becoming a dear friend.
Natalie just called me (daddy helped) and said "Quack, quack, quack" into the phone...I'm instantly feeling energized!
Posted By: corkygirl
Re: Keep us in your prayers - 07/22/05 08:52 PM
It was good to read your update. Isn't it amazing how sleeping in your own bed, even for one night, can made a difference. Take care of yourself, as always, yous guys are in my thoughts
Posted By: Bones
Re: Keep us in your prayers - 07/22/05 09:14 PM
So happy the news is good!
Posted By: Citrus
Re: Keep us in your prayers - 07/23/05 01:35 AM
During the recent 4 months that I was in the hospital I thought of the little bear often. I am so glad to read the updates and to read good news!
Bear and family: you are still in my prayers.
(Regarding giving blood : Bless you all for giving blood - I had to have three transfusions myself. It's a wonderful gift.)
Posted By: deppfan
Re: Keep us in your prayers - 07/23/05 01:41 PM
Posted By: Truffle Royale
Re: Keep us in your prayers - 07/24/05 09:56 PM
Hey, kiddo! Glad to hear from you. Tea has caffeine in it to and it's better for you than coffee. And if you can drink green tea it's even better! Personally, I could live on honeydew green tea icies from Panera and sun tea.
Animal sounds are so much fun, aren't they? She'll be talking your ear off in no time flat.
continued hugs and prayers....
Posted By: P*Q
Re: Keep us in your prayers - 07/25/05 12:48 PM
Take care lady, thoughts and prayers continue from up north.
Posted By: QCL
Re: Keep us in your prayers - 07/25/05 01:16 PM
deppfan - to answer your question "How in the world have you survived without it?"
- Diet Coke and God
Posted By: Beagles22
Re: Keep us in your prayers - 07/25/05 04:26 PM
Glad to hear a good update for you Becca. I agree that it is sounding like you could use a break, but I know it's hard to walk away from the situation in your mind whether you are there or not! God bless!!!
Posted By: Okie Dokie
Re: Keep us in your prayers - 07/25/05 09:04 PM
There is a beautiful new update on Natalie's website. Almost makes me want to cry.
Posted By: Truffle Royale
Re: Keep us in your prayers - 07/25/05 11:55 PM
Only almost, Okie? I definitely had tears trickling down my face. As a mima (pronounced mema just like the bear does) myself with a pool for my little one to jump in to me, I can really see Natalie doing this...over and over and over and over......and nothing makes me feel like she's getting stronger every day than that. Thanks for sharing, Becca!
Posted By: CRAatBOK
Re: Keep us in your prayers - 07/26/05 01:02 AM
Sounds like things are going well. That is such good news. Becca, don't ever feel like you have to appologize for sounding tired. If anyone deserves to be tired, it is you. I am constantly amazed at the energy and stamana you have.
Posted By: QCL
Re: Keep us in your prayers - 07/27/05 03:29 PM
Thanks all for the encouragement...it means so very very much!!!
Here is the plan for the next 3 days...we'll be staying 3 days and 2 nights in lovely Chicago
!!!!
Today Natalie is scheduled to be admitted to CMH for a blood transfusion. (As of right now, it's room 686.) Her hemoglobin dropped again to 6.7. But it took a week and a half to drop this much - so I guess that is an improvement
. Tomorrow, we will do an angioplasty of her portal vein and put a stent in it. The procedure can last several hours. She will be under general anesthesia. As of now, she's scheduled for about 1100 tomorrow. We've been planning this for a while now, so it will be good to see if it makes a difference.
She will be required to stay overnight on 6 West for observation after the procedure (bleeding is the most common complication). She'll get an ultrasound the next morning (Friday) to make sure the vein is open. If she's doing well, she'll be discharged.
While it is a procedure with risk, it is fairly simple and routine compared to the other things that she's gone through. But prayers are appreciated, nonetheless.
And while you're at it, could you also pray for my uncle (Natalie's great-uncle) Dennis? He is going to Madison to start chemo on Friday, in preparation for his stem cell transplant on August 5.
Posted By: Okie Dokie
Re: Keep us in your prayers - 07/27/05 04:03 PM
Prayers continuing to come your way from Oklahoma.
Posted By: RR Joker
Re: Keep us in your prayers - 07/27/05 04:11 PM
You got it!
Posted By: VioletRose
Re: Keep us in your prayers - 07/27/05 04:22 PM
Thinking of you in California.
Thoughts & Prayers for the whole family.
Posted By: Beagles22
Re: Keep us in your prayers - 07/27/05 06:18 PM
Prayers coming from Wisconsin! But you guys are in my daily prayers so I will have to do extra this time!
Posted By: P*Q
Re: Keep us in your prayers - 07/27/05 07:22 PM
Just checked out the latest pics, so adorable! I definitely feel for you and can't imagine what you all have gone through. You are all so strong and an inspiration to us all. Prayers and thoughts continue as always.
Posted By: Truffle Royale
Re: Keep us in your prayers - 07/27/05 07:57 PM
more ((hugs)) and ditto BQ on the prayers.
Posted By: Quadspapa
Re: Keep us in your prayers - 07/28/05 08:39 PM
Good luck and lots of prayers for Natalie and Dennis.
Posted By: CRAatBOK
Re: Keep us in your prayers - 07/28/05 10:28 PM
I will be thinking of you and your family. You are one tough bunch.
Posted By: Bengals Fan
Re: Keep us in your prayers - 07/29/05 02:07 PM
You are an inspiration to us all. After reading the recent diary entry about all the little things happening, you know, like the first steps, I was moved. I'm amazed at the strength you all have shown. God bless you!
Hoping everything went well! Have been praying for your family. Bless the little one.
Posted By: Princess Leia
Re: Keep us in your prayers - 07/29/05 03:29 PM
Mom O'Bear updated the website last night. So far so good.
Posted By: QCL
Re: Keep us in your prayers - 08/01/05 01:49 PM
She's walking. We're home. We're not in the hospital and she's walking. (I cried when she did it last night and I'm crying again as I type this.)
Just another example of how Natalie refuses to take all this stuff sitting down!
Oh, and she had labs drawn this morning...so we'll see...
But did I mention that she's walking?!?!?!?!
Posted By: redsfan
Re: Keep us in your prayers - 08/01/05 02:16 PM
Posted By: deppfan
Re: Keep us in your prayers - 08/01/05 02:22 PM
YAY! Soon she will be climbing, running...how wonderful! Hang on for the next phase Becca, and enjoy.
Posted By: Bengals Fan
Re: Keep us in your prayers - 08/01/05 02:32 PM
Quote:
YAY! Soon she will be climbing, running...how wonderful! Hang on for the next phase Becca, and enjoy.
It usually isn't very long from figuring out the walking thing to forgetting how to walk and going straight to run!
Posted By: Retired DQ
Re: Keep us in your prayers - 08/01/05 02:35 PM
Great news, Becca!
Posted By: Quadspapa
Re: Keep us in your prayers - 08/01/05 02:48 PM
That's just down right wonderful!
Posted By: Angel Eyes
Re: Keep us in your prayers - 08/01/05 02:57 PM
Congratulations to Natalie!
Posted By: Princess Romeo
Re: Keep us in your prayers - 08/01/05 03:29 PM
She's walking, and before you know it, she'll be asking for the keys to the car!!!!
Going through that right now.....
Posted By: Countess Kiwi
Re: Keep us in your prayers - 08/01/05 03:31 PM
Way to go Natalie!!! How awesome!
Posted By: HRH Dawnie
Re: Keep us in your prayers - 08/01/05 10:41 PM
Becca you bring tears to my eyes! Walking!!! I'd love to have a child as strong as your darling
She's one amazing little girl.
You know...we could arrange a marriage now.... heh heh
Posted By: CRAatBOK
Re: Keep us in your prayers - 08/02/05 01:03 AM
I just found out Kaiden is walking too. Maybe we should get them together and they can entertain us with their cute little wobbley walks.
I haven't had a chance to see her walk yet since my computer at home is down (cat spilt tea on it and the monitor went out).
Posted By: HRH Dawnie
Re: Keep us in your prayers - 08/02/05 01:06 AM
If you'd give the poor kitty water instead of tea this stuff wouldn't happen silly
Posted By: CRAatBOK
Re: Keep us in your prayers - 08/02/05 01:08 AM
We have made up but it was touch and go for a while. I may have to buy a whole new lap top just because the monitor is out. Grrrrr.
Posted By: corkygirl
Re: Keep us in your prayers - 08/02/05 12:21 PM
Posted By: QCL
Re: Keep us in your prayers - 08/02/05 01:06 PM
Quote:
Becca you bring tears to my eyes! Walking!!! I'd love to have a child as strong as your darling She's one amazing little girl.
You know...we could arrange a marriage now.... heh heh
Hmmmm...younger man...we'll have to talk
I've been reading this thread since the beginning but have never written anything. I have Natalie's webpage in my favorites and love to look at all her pictures and read your updates.
I just wanted to say how much I admire your strength, love and willpower. Letting so many strangers in to this area of your life is very hard I'm sure. But the education I am getting about transplants and the aftermath is priceless. I always thought that once someone received a transplant, they went home and that was it. They got on with their lives. I had no idea that there could be so many other problems that could come up later that would have the recipient in and out of hospital so long after the surgery.
I know that you would say to me that you are lucky to have Natalie in your lives, but I think Natalie is just as lucky to have you, Jason and all your family and friends in her life.
Posted By: QCL
Re: Keep us in your prayers - 08/05/05 06:52 PM
Thank you for your kind words "Are we there yet?" It's funny because your user name puts into words the way that I am feeling as I type this latest update. Are we there yet? When will we get to the "easy" part of transplant living? We too had hoped that after the transplant things would be easier...but that's not God's plan and He does have one. I guess this is part of it - allowing me to touch the hearts and lives of others...anyway sorry to ramble, I'm feeling frustrated.
Hemoglobin is 8.7 (down almost a gram since last draw, but not as steep a drop as before)- platelets and white count are better.
Now the problem is a GGT level that is up in the range where they think she needs a biopsy. This could mean rejection. GGT is 277 (normal is around 50, her's is up from 70). Could also be a recurrence of the biliary problem, let's hope she doesn't need another PTC tube.
In order to be safe- we'll do an ultrasound at 2 pm Monday, then admit her, give her a transfusion, and biopsy her on Tuesday am. We would have results of the biopsy by that afternoon, per the hospital.
I'm nervous.
Crap.
At least we get to enjoy the weekend.
Posted By: waldensouth
Re: Keep us in your prayers - 08/05/05 07:10 PM
I wish we could all be there for you in person and give you a big hug! But, know that you and your little bear are in our prayers constantly.
Posted By: Beagles22
Re: Keep us in your prayers - 08/05/05 08:17 PM
Mama Bear I am so sorry. Every step you take hurts our hearts. My prayers are with you as always. Be strong, laugh loud, and when you must cry, cry quickly. We are thinking of you.
Posted By: deppfan
Re: Keep us in your prayers - 08/05/05 08:29 PM
Couldn't have said it better. You know we love you guys.
Posted By: QCL
Re: Keep us in your prayers - 08/05/05 08:46 PM
Can I just share the most wonderful sentiment that I heard (read) today. This is from a fellow "liver" mom, whose child has gone to God earlier this year. She was explaining to her other children, the reason that God takes some of us home a little sooner:
"[I reminded him of the time we were] at DisneyWorld and were in line for the Monorail. [Our other daughter] was chosen to ride up front with the captain and I was not able to go with her. I went ahead and let her go, even though we had to ride a few cars back. We were going to the same destination, but she just got there quicker than we did, and she was there waiting for us when we got to the station. I hesistate to say this for fear some will really think I have lost it, but in some way, [our youngest daughter's] passing is like getting a "FastPass" at Disney. We are all in line waiting, not knowing when our turn will be to get on the ride. Some wait with eager anticipation of the excitement yet to come, some find things to gripe about while they are waiting to go and make themselves and others miserable, some give up on waiting and leave the line, but [our baby] got to go to the front of the line!
Someone once asked me why I thought God made "sick" babies when He has the power to create perfectly healthy children from the beginning. The only reason that I could come up with was that the way the world sees these children as fragile and needing extra attention is the way He sees all of us. We each have our flaws and imperfections, some are just more noticeable to the world than others. Just as we parents love these children, He loves us even more, He loves us anyway. Scars and All."
Even though she was talking about the child that she lost, it renewed my hope in God and in HIS plan. And who am I to argue with the Big Guy?
Posted By: deppfan
Re: Keep us in your prayers - 08/05/05 09:04 PM
Posted By: Okie Dokie
Re: Keep us in your prayers - 08/05/05 10:31 PM
That was absolutely beautiful, Becca. God does work in mysterious ways. Love and prayers to you and the bear.
Posted By: D Gem
Re: Keep us in your prayers - 08/08/05 08:26 PM
Brand new to BOL and just spent a better part of my afternoon crying smiling and crying and smiling reading about the trials and tribulations of Natalie, Becca and Jason. My heart goes out to you and your great strength to hold your head high and take what life has dealt you. I myself have a daughter who is only a month younger than Natalie and it could so easily have been me and my little one. I pray for you everyday and that your lives will very soon be blessed with normalcy. God bless you and your family!!!!!!
Posted By: Anonymous
Re: Keep us in your prayers - 08/09/05 09:31 PM
Quote:
Mom O'Bear updated the website last night. So far so good.
What is the website address?
Posted By: Cowboys Fan
Re: Keep us in your prayers - 08/09/05 10:02 PM
Posted By: Princess Leia
Re: Keep us in your prayers - 08/10/05 02:40 PM
The Bears are home ... but go back Friday for further tests.
Nataliebear's Den Happy 6 month birthday to Natalie's new liver!
Posted By: Bengals Fan
Re: Keep us in your prayers - 08/10/05 03:15 PM
Leia, isn't Natalie's liver older than she is?
Posted By: QCL
Re: Keep us in your prayers - 08/10/05 03:36 PM
Hardy har, har. It's like a used car. It's new to her! And it will be 28 years old next month.
Posted By: Bengals Fan
Re: Keep us in your prayers - 08/10/05 05:00 PM
Quote:
Hardy har, har. It's like a used car. It's new to her! And it will be 28 years old next month.
I thought it came from her mother, and we all know mother's are NEVER older than 25 until they retire!
Posted By: CRAatBOK
Re: Keep us in your prayers - 08/11/05 12:26 AM
Quote:
Quote:
Hardy har, har. It's like a used car. It's new to her! And it will be 28 years old next month.
I thought it came from her mother, and we all know mother's are NEVER older than 25 until they retire!
No, until they become grandmothers. Then it is ok to age a year or two.
Posted By: Bengals Fan
Re: Keep us in your prayers - 08/11/05 02:55 PM
Quote:
Quote:
Quote:
Hardy har, har. It's like a used car. It's new to her! And it will be 28 years old next month.
I thought it came from her mother, and we all know mother's are NEVER older than 25 until they retire!
No, until they become grandmothers. Then it is ok to age a year or two.
You know, you're right, my mother became 40 when my nephew was born. Didn't bother her that it meant she would have been 8 when I was born
Posted By: CRAatBOK
Re: Keep us in your prayers - 08/12/05 12:06 AM
Yeah, well I was 12 when my daughter was born.
Posted By: QCL
Re: Keep us in your prayers - 08/13/05 03:26 AM
Natalie is in the PICU.
I am taking a short break to post. Jason is on his way. He was going to work this weekend since we thought that this would be a simple procedure and outpatient.
The procedure (cholangiogram and biopsy) went well and her doctors said that they had good and bad news.
~Good- her liver numbers went up because of bile backing up at the point where the main bile duct connected to the intestine and not due to rejection.
~Bad - they had to put in a new PTC tube.
I thought all was well as I went to see Natalie in recovery. But she wasn't herself. She was running a fever near 103 and was VERY lethargic (similar to how she was in November 2004) and puking. Doctors said that she is septic. (Bile got into her blood stream - this can happen)
She's getting 3 antibiotics and an antifungal, and that's all I know for now.
Posted By: CRAatBOK
Re: Keep us in your prayers - 08/13/05 06:10 AM
Becca, I am so sorry to hear the bear has had another set back. Give her a hug and kiss for me and tell her BOL Aunt KC is thinking of her. You and Jason give each other a hug too. That's from me too.
Posted By: deppfan
Re: Keep us in your prayers - 08/13/05 01:18 PM
Tears... Oh Becca,
Hang in there, and kiss that sweet little one on the forehead for me. I am so glad that you and Jason are strong and able to be there for each other. I hit my knees when I read your post, and know that I won't ever stop praying for you and your family. Here in OK there is a commercial for the OK Blood Institute with a little girl who appears to be 5-6. It says her life was saved when she had a liver transplant before she was a year old. I think of Natalie every time I see that commercial. Stay strong, and know that I'm thinking of you guys.
Posted By: Princess Romeo
Re: Keep us in your prayers - 08/13/05 04:11 PM
Prayers are continuing for you and Natalie. G-d is with you, always.
Posted By: Truffle Royale
Re: Keep us in your prayers - 08/13/05 04:40 PM
I'm here too, Becca, praying and sending virtual hugs to all of you. Stay strong so Natalie feels your strength pulling her back to health.
Posted By: Citrus
Re: Keep us in your prayers - 08/13/05 10:13 PM
Oh, shoot! Continued prayers for little Bear and you and your family. Big hugs.
(Come to think of it - we're givin' you a great big BOL group hug right now!)
Posted By: QCL
Re: PICU update - 08/14/05 02:30 PM
We are on 6 west now (out of the PICU - Pediatric ICU).
We moved here yesterday afternoon, following Natalie's eating a Happy Meal in the PICU. She had a rough night last night, due mostly to the amount of meds that she is on and the frequent visits by the nurse to administer those meds.
She got up this morning (nurse accidentaly woke her up - when she came to draw labs) and ate a little breakfast and watched the Wiggles. Then she went right back to bed.
She hasn't been able to - nor has she wanted to- walk much, and I hope that she doesn't forget what she just learned.
It's been a rough couple of days and to those of you that have reached out to us, thank you.
Still here praying and thinking good thoughts. Thanks for the update.
prayers keep coming from KY...
Posted By: Retired DQ
Re: PICU update - 08/15/05 12:10 PM
Becca, you and your family are in my thoughts. Keep on hanging on.
Posted By: Beagles22
Re: PICU update - 08/15/05 12:59 PM
Thanks for the update Becca. My prayers are with you and yours!!
Posted By: Okie Dokie
Re: PICU update - 08/15/05 01:34 PM
Oh, Becca, I'm so sorry for the set back. I continue to pray for you, Jason and Natalie. But don't worry about the walking, she will be running all over the place before you know it.
Posted By: RR Joker
Re: PICU update - 08/15/05 03:50 PM
Warm thoughts and prayers on your way again from Georgia.
Posted By: Bengals Fan
Re: PICU update - 08/15/05 04:05 PM
Becca, relax and remember that this is just another little hill on the roller coaster you are on. She'll be fine, and this is just a minor setback. God will give you the strength to carry on, and will give her the strength to keep growing and conquer anything He throws at her.
Posted By: Patsy Cline
Re: PICU update - 08/15/05 05:27 PM
Continued prayers from me!
Posted By: corkygirl
Re: PICU update - 08/15/05 05:43 PM
I've been on vacation and didn't have access to a computer to check on Natalie till today. I am so sorry to hear about the set back, continued prayers from me.
Posted By: TTC Queen
Re: PICU update - 08/16/05 02:14 PM
More prayers are coming from Oklahoma. deppfan--I also think of NatalieBear when I see the little girl on tv dressed as a sunflower gathering people for blood donations. Pretty soon it will be Nataliebear doing the commercial!!
Posted By: Bengals Fan
Re: PICU update - 08/16/05 03:16 PM
I just read the update on Da Bear's website. Let the roller coaster continue! Great news on the lack of rejection to counter the bad news on the going septic.
Posted By: Anonymous
Re: PICU update - 08/16/05 06:18 PM
Prayers are going out for you from the Great Lake State. Hang in there. I know it's hard, but she'll sense your strength and positive thinking.
csb
Here's to the Queen Mum, home with our Princess. That has to be a good feeling. And hallalujah for her liver not rejecting too. Ah, the untold joys of happy meals! Continued prayers and hugs.
Posted By: Bengals Fan
Re: PICU update - 08/17/05 01:49 PM
How on earth could that little darling reject anything of her mommy's?
Posted By: Anonymous
Re: PICU update - 08/17/05 01:57 PM
Prayers from Kentucky.
Hmmm...
Someone sent me a
clue in my
Mailbox that Princess Natalie likes
Blues Clues
Posted By: QCL
Re: PICU update - 08/17/05 02:24 PM
To explain to so you don't think that PL is nuts (she is BTW
). For the bear's birthday I sent out invitations that were Joe's Handy Dandy Notebook. Inside were clues:
1. A cake
2. Balloon
3. A picture of the bear
And you're supposed to sit in your thinking chair and guess that Blue wants you to go to Natalie's birthday!!!
(See what happens when you have too much free time in the hospital
!)
Then I went to zazzle.com (or you can do it at stamps.com and had stamps made with her picture on them for mailing)
Quote:
To explain to so you don't think that PL is nuts (she is BTW ).
Hey, I resemble that remark
Posted By: Bengals Fan
Re: PICU update - 08/17/05 05:48 PM
When did Nataliebear become a princess?
Posted By: deppfan
Re: PICU update - 08/17/05 06:44 PM
Quote:
When did Nataliebear become a princess?
The day she was born!
Posted By: slick
Re: PICU update - 08/17/05 06:45 PM
She's always been one, but officially the other day.
Posted By: Bengals Fan
Re: PICU update - 08/17/05 07:51 PM
Quote:
She's always been one, but officially the other day.
Oh, ok, I missed that!
Posted By: QCL
Re: PICU update - 08/17/05 08:41 PM
With all the "queens" here I was starting to feel left out. That and I want to have the L-o-n-g-e-s-t user name
!
I think your name should be Queen Mum of Princess Nataliebear. Will it all fit?
Posted By: CRAatBOK
Re: PICU update - 08/18/05 12:13 AM
We may have to do QMofPNB. So what does the Bear want for her birthday?
Posted By: Bengals Fan
Re: PICU update - 08/18/05 01:22 PM
Quote:
We may have to do QMofPNB. So what does the Bear want for her birthday?
A happy meal?
Posted By: Cathy P
Re: PICU update - 08/18/05 03:48 PM
Your Blues Clues invites sound awesome Mom of Princess Natalie Bear!! We are also having a Blues Clues theme for my daughter's 2nd birthday in October. I found invitation templates on Nick JR. that I printed out on a color printer.
Posted By: Kansayaku
Re: PICU update - 08/18/05 03:53 PM
My cousin had a Blue's (2nd) B-Day party for her little boy about five years ago. She got the cutest pinata that looked alot like Blue though and the little guy burst into tears when Blue got bashed. We actually ended up putting a pinata back together at the operating (kitchen) table. It was something I will never forget.
Give the Bear a hug for me Becca and birthday wishes as well.
Posted By: QCL
Re: PICU update - 08/18/05 05:11 PM
Quote:
We may have to do QMofPNB. So what does the Bear want for her birthday?
Actually, I agonized over this - but ended up putting a link to her wish list on her website. The reason that I say that I agonized over it, is because I really hate asking people for things, but realized that it's not for me so it's OK.
Posted By: wanted
Re: PICU update - 08/19/05 02:08 PM
Just read the latest update on Natalie's page. Great news! I thank God for your Natalie and pray for your strength. I have her picture posted in my office and have her page saved to favorites here and at home. She truly is a princess.
Posted By: CRAatBOK
Re: PICU update - 08/20/05 01:26 AM
So glad she is in a good spell. Hey, pretty tricky of you to put the vacuum cleaner on there. Boy, as soon as she starts walking, you have her cleaning the house.
Posted By: QCL
Re: PICU update - 08/22/05 01:37 PM
KC,
Did I mention here that she is finally walking
? And she wants to vacuum now
. She runs over to it when ever I have it on and tries to help. But she's so little and the vacuum cleaner that I have is so big that it scares me.
The older grangirl had the little pop-pop vacuum while the younger one got a toy vacuum that actually cleaned! Maybe the bear would like one of those for her birthday!
Posted By: CRAatBOK
Re: PICU update - 08/22/05 11:52 PM
My nephew went through that stage too. He loved "helping" everone vacuum. He even wanted to vacuum when it didn't need it. Amazing how men change as they get older.
Posted By: HRH Dawnie
Re: PICU update - 08/23/05 12:02 AM
Hey there...I want a daughter who vaccuummsss (I can't spell that word so I used lots of extra letters). Send her up and I'll trade you for a kicking tummy
Just until the floor are done mind you
Oh and she can play kitty. My boys are good cuddlers. (She can then vaccummmmzzzz them as well) heh heh
Decided I wanted my 1800th post to be one of celebration. Per the website, our bear loves her new bed and is vacuuming the world clean and sprinkling sunshine for all of us to bask in. Thanks, Becca, for sharing the joy of your life.
Posted By: QCL
Re: PICU update - 08/23/05 07:48 PM
You are most welcome. Thanks truffle for making me cry
.
Love the new signature line, MofPNB
Posted By: Anonymous
Re: PICU update - 08/25/05 03:07 PM
Wow...What a great job you and your Mom-in-law did on the Bears room, or should I say Princess Bear? I LOVE it and am sure she does too. Did you free paint the scene at the head of her bed?
Posted By: Nanwa
Re: PICU update - 08/25/05 04:54 PM
So then, correct me if I am wrong, but, pink ribbons are for breast cancer awareness, yellow ribbons are for the soldiers, and green ribbons are for organ donation?
Posted By: QCL
Re: PICU update - 08/26/05 02:02 AM
You are not wrong Nanwa. This
link has more ribbon meanings.
And thanks anon for the comments on the bedroom. My mom was the official painter, the rest was me. (I really really hate to paint!!!)
Posted By: CRAatBOK
Re: PICU update - 08/26/05 05:06 AM
What a pretty room for a pretty little girl. I she thinking of becoming a mechanic?
Posted By: corkygirl
Re: PICU update - 08/26/05 12:54 PM
Quote:
Wow...What a great job you and your Mom-in-law did on the Bears room, or should I say Princess Bear? I LOVE it and am sure she does too. Did you free paint the scene at the head of her bed?
Boy do I agree with this, what a wonderful beadroom for your special little girl!!!! I'm so glad she is doing better and I'm sure your enjoying her walking everywhere . So, how "child proof" is your house now???? Not as "child proof" as you thought I'd bet. Enjoy your angel and thanks for sharing her with all of us.
Posted By: Patsy Cline
What a beautiful room! - 08/29/05 08:18 PM
Oh my goodness! The room is beautiful. Absolutely beautiful! I cried while reading your latest journal entry. What a touching photo of Natalie placing flowers on your sisters grave marker. God bless you and your family! You are in my prayers.
Posted By: CRAatBOK
Re: What a beautiful room! - 08/30/05 01:41 AM
Lady I agree, even though you warned me, I still cried.
Becca, you should write a book. If your story isn't inspirational, I don't know what is.
Posted By: Bengals Fan
Re: What a beautiful room! - 08/30/05 01:45 PM
Quote:
Lady I agree, even though you warned me, I still cried.
Becca, you should write a book. If your story isn't inspirational, I don't know what is.
No kidding!
Posted By: Anonymous
Re: What a beautiful room! - 08/30/05 06:06 PM
What's the website? I wanna see, I wanna see...
Posted By: Bengals Fan
Re: What a beautiful room! - 08/30/05 06:23 PM
Posted By: Citrus
Re: What a beautiful room! - 08/31/05 01:43 AM
Mom of PN - So precious, so precious! Your thread here is such a joy. Your child a doll. Her life a miracle. A lot of stress, but you are so fortunate and blessed. Thanks for sharing the sweet pictures.
Posted By: QCL
Re: Thanks - 08/31/05 01:32 PM
MTnFull and everyone else,
Thank you for your kind words. Back when this thread started I could never have imagined what a world of difference the support of other bankers would make.
I can honestly say that I've never met some of my greatest friends!!!
Through the powers of BOL we've received cards and letters, we've received care packages, fantastic friends, a gifted person to create a beautiful webpage, our spirits have been lifted and our hearts filled by all of you my BOL friends.
Oh yeah, and because of the generosity of my friends at BOL this weekend I'm going to eat at a resturant in my area called - PARAGON
.
I thank you all for all that you have done for my family and if you'll still read them, I'll continue to post updates about my transplant kid
!
Quote:
I thank you all for all that you have done for my family and , if you'll still read them I'll continue to post updates about my transplant kid !
You HAVE to keep posting. Becca, you've done more for me than you can ever know. More than any of the religious debates on other threads, this thread has shown me the love of God and the power of prayer. Thank you!
Posted By: Quadspapa
Re: Thanks - 08/31/05 02:43 PM
Oh pleeeeze Becca, keep us informed. God bless ya'll.
Posted By: CRAatBOK
Re: Thanks - 08/31/05 11:35 PM
Heck, I added your web site to my favorites. I can't wait until the day you write about how the Bear is completely in the clear and the three of you have nothing but the ordinary life events to write about.
Posted By: HMS Pippii
Re: Thanks - 09/01/05 02:10 AM
Yeah, you really have to keep posting updates about the Princess Bear -- it's on my favorites at home. I want to see the pictures when the Bear goes tripping off to kindergarten and starts her trek to med school!
Posted By: QCL
Little update - 09/09/05 02:15 PM
We had some really good news yesterday – we don’t have to go back to the hospital for a clinic visit for 2 whole weeks. I guess it’s all relative. What is good news to us may not be to someone else.
Yesterday, after our hospital visit, we caught up with another liver transplant kid (he was transplanted at the same time as Natalie), but he has CF as the underlying cause of his previous liver’s failure. Anyway, they asked how the bear was and we said, “GREAT!” But being the observant ones, they asked why Natalie had a PICC line if things were great.
To which I said something like, well after transplant she had 3, or 4, rejection episodes. So we switched her to a stronger immunosuppressant. But then she developed PTLD (early lymphoma) and had to have a biopsy of some lymph nodes to determine if chemo was needed. It wasn’t. Then Natalie started having blood issues – her body was attacking her own red blood cells while at the same time her bone marrow was suppressed so she wasn’t creating enough red blood cells anyway. So she got blood transfusions every few days. Then they noticed a narrowing in her portal vein and we did an angioplasty of it to fix it. Then her liver numbers went up and it was determined that one of her bile ducts had significant narrowing. So we did a PTC (Percutanious Transhepatic Cholangiogram) to insert a tube in through her tummy, through the bile duct and into the bowel.
But it seems like right now things have settled down – she hasn’t needed a transfusion in weeks, liver numbers are improved, we’re at home and not in the hospital – so I say she’s GREAT! My friend and I hugged and said our favorite line, “We love seeing you, but lets hope we don’t get to for a while,” and we left for home
.
Natalie also got to hang out with some other "liver kids" while at her checkup - there is more on her webpage on that.
Posted By: Skittles
Re: Little update - 09/09/05 02:21 PM
That's wonderful news Mom. Thanks for sharing.
Posted By: Retired DQ
Re: Little update - 09/09/05 02:32 PM
Becca, that is great news!
(Although, I guess we can't hook up in Chicago... oh well, it is better to have it this way!) Yay, Natalie!!!!
Posted By: E.E.G.B
Re: Little update - 09/09/05 02:34 PM
Sounds like things are going GREAT indeed!!
Posted By: someone else
Re: Little update - 09/09/05 02:57 PM
Funny that you posted this Mom...I was just on the website this morning catching up on the latest entries into your journal. A remarkable child, and an even more remarkable set of parents. You are in my thoughts daily.
Posted By: doodles
Re: Little update - 09/09/05 03:16 PM
Becca
So glad to hear that all is going well with Natalie. I continue to check for updates daily and have kept all of you in my prayers. You have educated me in regards to transplants - helping me to understand what a little boy in our Sunday School class has gone through over the past 3 years. He received a heart transplant when he was just days old and has had good days and very bad days as well. After keeping up with Natalie's progress and setbacks - I now understand what this family has endured as well as the lingo that they use in the prayer partner updates. Thanks for sharing your beautiful daughter with all of us at BOL and continued prayers coming from PA.
Posted By: Angel Eyes
Re: Little update - 09/09/05 04:20 PM
You don't have to go back for two weeks! WOW...that must be such a feedom for you. Enjoy your time off from doctors and the hospital. We continue to pray that Natalie gets better and better
Posted By: CRAatBOK
Re: Little update - 09/09/05 05:37 PM
Congrats to you and your family. You enjoy your down time from the hospital visits.
Posted By: P*Q
Re: Little update - 09/09/05 05:38 PM
Great news Becca, glad to hear it!
Posted By: Beagles22
Re: Little update - 09/09/05 06:08 PM
What a wonderful spirit you all have! CONGRATULATIONS on your vacation Becca!!
Posted By: Bones
Re: Little update - 09/09/05 07:49 PM
Great news! I pray for Natalie's continued improvement.
Yipee! It's been rough all over lately so the good news about Natalie is twice as nice. Thanks for sharing...I needed that!
Posted By: deppfan
Re: Little update - 09/09/05 09:18 PM
Posted By: corkygirl
Re: Little update - 09/09/05 10:23 PM
What a wonderful way to start my weekend, with such good news from you. Yes, we want to hear updates on your princess, don't you dare stop. Enjoy your weekend and your 2 months off from Doctors and Hospitals!!!!!
Posted By: Cat Woman
Re: Little update - 09/10/05 09:22 PM
I'm so glad things are looking brighter!
Posted By: LoisLane
Re: Little update - 09/14/05 06:01 PM
I love hearing good news!
Posted By: QCL
Another Little update - 09/16/05 07:13 PM
I posted an update on her webpage...he, he, he
...I'm going to make you go there to read it (click on my profile, it's there).
Feeling a bit devilish today
.
Posted By: Angel Eyes
Re: Another Little update - 09/16/05 07:18 PM
Great news! We are glad to hear it
Posted By: Skittles
Re: Another Little update - 09/16/05 07:26 PM
I don't blame you for being nervous, but I have one small piece of advice. This is something they taught my mother after her heart surgery (she is an incredible worrier and couldn't sleep). Try to take each day at a time and not look at what happened yesterday. That's in the past and just look at all of the good things in the future.
BTW - congratulations on all of the great news. I think of you and your strength often.
Posted By: Countess Kiwi
Re: Another Little update - 09/16/05 08:30 PM
Wonderful news!
We are praying for Annika also. I read her link a few weeks ago, and honestly couldn't finish the post today. She sounds like an amazing little girl.
Posted By: RR Jen
Re: Another Little update - 09/16/05 08:44 PM
I read her's also...I saw the picture of the girls playing together. They are just precious!
Posted By: QCL
Re: Another Little update - 09/16/05 09:47 PM
Quote:
She sounds like an amazing little girl.
We've only met in person a few times, but you would not believe how right you are.
Posted By: QCL
Update...sorry if it's long... - 09/22/05 08:53 PM
I'm just going to copy and paste from her website:
Home at last.
We got on the road for Chicago at 4:30 this morning! Natalie was scheduled for the first case (7:30am) this morning in IR - to squirt her PTC tube with dye, check for blockages and proper placement, and replace the tube if necessary. But because she got her PICC line out recently, we had to start an IV so we could give her sedation.
Poor daddy, he got the task of holding Natalie down - we take turns doing this, unfortunately. She was understandably upset, screaming until her face and neck was bright red. While we gave the IV, labs were also drawn so Natalie wouldn't have to get stuck with a needle twice in one day. Then we started the sedation. Suddenly she looked up at me and smiled. Then Jason said, "Well, it looks like the versed is working." So, Becky our favorite IR nurse whisked Natalie away and less than half an hour later, they were done. The tube was completely blocked so they exchanged it with a new tube.
Then we waited in the IR recovery area with Natalie for the side affects of the sedation (versed) to wear off. She is so darned cute on versed. She tries to sit up and then flops her head around talking in a sort of sing-song way. After another half hour Natalie was good-to-go and we made our way from the 2nd floor to the 3rd for our transplant clinic appointment. Natalie's doctors came in and said her labs are "FANTASTIC!" We are going to adjust her Actigall a bit (it thins bile) to help keep the PTC tube clearer. And we don't have to go back to clinic for 3 weeks!!!! WOOHOO!!!
So we left the hospital and took a stroll to the Lincoln Park Zoo. The clouds were threatening us with off and on rain, so it was a quick trip, but worth it as Natalie checked out her favorite - the BEARS!!! We walked up to the Polar Bear underwater viewing area and Natalie gasped, "Wow." (That Wow needs to be read in a sort of awestruck whisper for full effect.)
While we were in the Zoo, Jason got a call. He will be going to Louisiana with 5 other members of his SWAT team. They will be leaving September 29, the day before Natalie's birthday and he will miss her party. But I couldn't be more proud of him. He has been called to help those less fortunate than us. Natalie has a house and food and the best medical care in the world, but some little kids in Mississippi and Louisiana lost all of that.
Posted By: CRAatBOK
Re: Update...sorry if it's long... - 09/22/05 11:05 PM
Becca, Glad you had such a good report and a day at the zoo. Tell Jason we will be thinking of him and looking over you while he is gone.
Posted By: Truffle Royale
Re: Update...sorry if it's long... - 09/22/05 11:24 PM
wiping another tear from my cheek My post in the things we're grateful for thread comes to mind again. You and Jason and Natalie are linemen on God's strength team. You all cotinue to amaze me with all that you've done and continue to do.
((((hugs)))) and continued prayers for you all!
Posted By: HRH Dawnie
Re: Update...sorry if it's long... - 09/23/05 12:22 AM
Quote:
walked up to the Polar Bear underwater viewing area and Natalie gasped, "Wow."
Becca, you get that girl strong and well and when she is, I promise you that I can arrange for her to see polar bears Really, I will arrange for the hotel and everything for ya'll and go with you to see her see some polar bears in the wild Our hotel is way way up in the arctic, so we need her to be very very strong and safe but one day that will be the case, and at that time, she can stay at our hotel on us! I'd be so very happy to be a part, even a small part of seeing that lovely girl experience such a treat!
Posted By: Beagles22
Re: Update...sorry if it's long... - 09/23/05 12:58 PM
Never be sorry for a long update!! We love to hear about your little bear. It makes us all grateful that we get to hear the stories because it lets us know the strength faith can give. People can endure anything with love and faith. My thoughts and prayers are with you, Natalie and Jason in every endevor.
Posted By: zaibatsu
Re: Update...sorry if it's long... - 09/23/05 01:11 PM
'For I know the plans I have for you,' declares the Lord, 'plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call upon me and come and pray to me, and I will listen to you. You will seek me...and I will be found by you,' declares the Lord."
Posted By: Okie Dokie
Re: Update...sorry if it's long... - 09/23/05 01:38 PM
Becca, so happy to hear that things are going well! I know that Jason must be sad to miss Natalie's party, but he is doing something very worthwhile. I can understand why you are so proud. You have an amazing family.
Posted By: corkygirl
Re: Update...sorry if it's long... - 09/23/05 03:03 PM
Once again, a good way to start the weekend with good news on "our little girl"
Posted By: Angel Eyes
Re: Update...sorry if it's long... - 09/23/05 03:26 PM
Awesome news! Thanks for the update.
Posted By: Quadspapa
Re: Update...sorry if it's long... - 09/23/05 03:57 PM
I'll have to agree with Natalie with my opinion of your update, WOW!
Posted By: QCL
Re: Update...sorry if it's short! - 10/10/05 03:13 AM
Sorry that I haven't posted an update lately! Things have been crazy-busy at work - notice I am posting this on a Sunday night! I feel weird doing these updates still - but I had a request so here goes:
Since my last update Natalie had a birthday, I got a new niece (Goddaughter) and one of our liver buddies went to Heaven.
From my webpage:
It was this time last year when Natalie started to get so very sick. If you go back and read my journals starting with October 15, 2004 you can see how quickly her health went from really good to oh-crap-really-bad. At the end of October in 2004 was Natalie's sickest pre-transplant. And it was at that time that we along with her liver team decided to list her for a transplant.
Maybe it's because I'm still raw and hurting following the passing of one of our liver buddies, sweet Haley. Whatever it is, I find myself reflecting and remembering last October and November...by the way Natalie's party was AWESOME!!! Pictures are in the pictures page! And Natalie today is doing really well. Her labs from last week are steady, she still has the PTC tube in her belly, and she continues to take her 7 medications like a champ. We will go back to Children's on October 13 for a clinic visit.
Posted By: SMQ, CRCM
Re: Update...sorry if it's short! - 10/10/05 03:27 AM
It has been a long road for all of you, so glad that things are going well now. Hard to believe that one day she will remember very little of this. I am still praying that things just keep getting better.
Posted By: Truffle Royale
Re: Update...sorry if it's short! - 10/10/05 03:21 PM
Thanks for the update. We all became so invested in all three of you bears. Think of us as the grandmother (and aunts and uncles too) in the woods. Periodically we need a visit from the little bear.
Many ((hugs)) and prayers for our bear's continued journey on the road to full recovery.
Posted By: Beagles22
Re: Update...sorry if it's short! - 10/10/05 06:04 PM
Don't stop telling us the news Becca. I would love to hear about her prom, graduation, and wedding day. She gives me strength and I am SURE I am not the only one that feels that way. My continued prayers are with you, Bear and Jason.
Posted By: Bengals Fan
Re: Update...sorry if it's short! - 10/10/05 06:17 PM
No kidding. You aren't allowed to stop giving us the news! We were here for the heartache and the bad times, at least let us share some of the good times too
Funny how much people can grow to love a little girl and her family that they have never met.
Posted By: QCL
Re: Update...sorry if it's short! - 10/10/05 06:20 PM
You guys rock
! I guess what I meant was, I don't want to have my updates take away from the problems that someone else is having.
We go back to the hospital Thursday for clinic, so I promise to post an update.
Posted By: HMS Pippii
Re: Update...sorry if it's short! - 10/10/05 07:12 PM
Becca - your updates never take away from anything. Sometimes, it's the best news we get all day. The rest of the time, you know our prayers continue - and yeah, we want prom pictures!!!!
Posted By: CRAatBOK
Re: Update...sorry if it's short! - 10/10/05 10:39 PM
Becca, I think you put the rest of our lives in perspective. You guys symbolize not giving up and what a positive attitude can do. Thank you for trusting us enough to share the good time and to come to us when it get hard and you need encouragement. Thanks for letting us be part of your family.
Posted By: corkygirl
Re: Update...sorry if it's short! - 10/11/05 11:36 AM
I echo what's been said, I know that I love your updates and that's the first thing I check when I get online most of the time. Keep them coming!!!
Posted By: QCL
Procedure for tomorrow at 7:30 am. - 10/12/05 08:12 PM
See what I mean when I say that things change overnight for us?
In addition to going to our clinic appointment tomorrow, we have now been scheduled for a 7:30 am procedure. Last night I noticed that Natallie's PTC tube (this is the tube that's keeping her main bile duct open and clear) was leaking AGAIN...grrr! So we need to arrive at CMH in Chicago by 6:30 am - WOOHOO that means leaving home at 4:30am! Then they will start an IV, sedate her, and wisk her away to check the tube.
I know I don't need to ask - but can you please say a little prayer. It's probably nothing but a tube blockage, but I always worry.
Posted By: E.E.G.B
Re: Procedure for tomorrow at 7:30 am. - 10/12/05 08:43 PM
Thinking of y'all! Hang in there, Becca.
Posted By: someone else
Re: Procedure for tomorrow at 7:30 am. - 10/12/05 08:46 PM
You and your family are always in my heart and on my mind. Have faith and keep strong!
Posted By: Bengals Fan
Re: Procedure for tomorrow at 7:30 am. - 10/12/05 09:02 PM
MOPNB,
You have our prayers! Enjoy your new CDs on the ride in the car
Posted By: Okie Dokie
Re: Procedure for tomorrow at 7:30 am. - 10/12/05 09:09 PM
You guys are always in my prayers, but I will say an extra one for you tonight. On a brighter note, I am glad to see that your sister is back in the U.S.
Posted By: corkygirl
Re: Procedure for tomorrow at 7:30 am. - 10/12/05 09:53 PM
I'll be awake at about 4:30 AM tomorrow so I'll say a prayer to send you on your way
Posted By: Viking Princess
Re: Procedure for tomorrow at 7:30 am. - 10/12/05 09:58 PM
Continued prayers...
Posted By: Citrus
Re: Procedure for tomorrow at 7:30 am. - 10/13/05 02:22 AM
Bless her sweet little adorable heart - I'll pray it's just a little blip and easily "fixable" - you take care!
Posted By: Retired DQ
Re: Procedure for tomorrow at 7:30 am. - 10/13/05 12:17 PM
Becca, hang in there, friend.
Posted By: Beagles22
Re: Procedure for tomorrow at 7:30 am. - 10/13/05 12:59 PM
I hope everything is going well for the Bear. My prayers are going out with the rest of yours.
Posted By: TTC Queen
Re: Procedure for tomorrow at 7:30 am. - 10/13/05 01:59 PM
More prayers from Oklahoma.
I echo the other's sentiments. Please keep the updates coming.
Posted By: QCL
Re: Procedure for tomorrow at 7:30 am. - 10/14/05 01:14 PM
All that worry over nothing...yesterday went really smoothly for Natalie and I. Jason had to work so it was just the 2 of us girls again. And she was an angel all day!
We arrived at the hospital a little before 7am (running a little late as usual). And went proptly to IR. An IV was started in Natalie (and that was fun for everyone involved
), labs were drawn, and she was given Versed. Ah, the wonder drug Versed
. I think that I have spoken of it before! Natalie was then taken into the procedure area and not 20 minutes later a new PTC tube had been placed.
After sitting in recovery with the cutest-out-of-her-mind baby
(she really is adorable when she's sedated) we made it to clinic. We learned that some of the labs that were drawn before the procedure needed to be redone. Yup, you guessed it, another poke in Natalie's arm. Now you see why my house is full of guilt-gifts and looks like Toy-R-Us threw up in it!
Dr. Alonso said that Natalie looks fantastic
. She is holding on near the 5th percentile for height and weight (anywhere on the chart is great with us
). We don't have to go back for a month
and at that time we're going to get the PTC tube out!! WOOHOO!!!
After I got home, Joan, one of our nurses called to let me know that Natalie's labs continue to look great - hemoglobin is 13.9 and the other LFTs (Liver Function Tests) are terrific too!
Posted By: Retired DQ
Re: Procedure for tomorrow at 7:30 am. - 10/14/05 01:26 PM
Glad to hear that all went well.
Posted By: Bengals Fan
Re: Procedure for tomorrow at 7:30 am. - 10/14/05 01:40 PM
Sounds like someone needs to have a big party this weekend welcoming home family and celebrating health!
Hip Hip Hoorah!
Posted By: TTC Queen
Re: Procedure for tomorrow at 7:30 am. - 10/14/05 01:55 PM
Thanks for letting us know the great news.
By the way--I completely understand the "guilt gift" syndrome. I did the same thing.
Posted By: Okie Dokie
Re: Procedure for tomorrow at 7:30 am. - 10/14/05 02:39 PM
Yippee!!!! Great news!!!!!
Posted By: Truffle Royale
Re: Procedure for tomorrow at 7:30 am. - 10/14/05 02:56 PM
Let's hear it for the Bear! And her wonderful Mama Bear too. Thanks for keeping this grandmother up in the woods informed.
Posted By: Quadspapa
Re: Procedure for tomorrow at 7:30 am. - 10/14/05 03:58 PM
Congrats on the good news. Have a wonderful weekend.
Posted By: Countess Kiwi
Re: Procedure for tomorrow at 7:30 am. - 10/14/05 04:16 PM
Great news!!!!
Posted By: Skittles
Re: Procedure for tomorrow at 7:30 am. - 10/14/05 05:22 PM
That's great to hear!!
Posted By: Beagles22
Re: Procedure for tomorrow at 7:30 am. - 10/14/05 06:14 PM
I too understand the guilt gifts. How else do I explain the 4 foot high 3 foot wide bear that my son has. After a couple of days with tubes stuck up his nose and in his legs I couldn't see a reason not to. I am SO glad to hear everything seems so bright right now. Have a restful weekend Becca, you deserve it and so does Bear!
Posted By: CRAatBOK
Re: Procedure for tomorrow at 7:30 am. - 10/14/05 10:49 PM
One of these days you are going to wonder what to do with all that time you have since you don't have to go in for Dr. appts. etc. You may even have a "normal" life.
Posted By: Citrus
Re: Procedure for tomorrow at 7:30 am. - 10/15/05 09:47 PM
Posted By: Busy Bee, CRCM
Re: Procedure for tomorrow at 7:30 am. - 10/28/05 06:31 PM
I haven't heard anything about Miss Natalie for a while, so I'm hoping that no news is good news. Continuing my prayers...
Posted By: Anonymous
Re: Procedure for tomorrow at 7:30 am. - 10/28/05 06:49 PM
You're in my prayers
Posted By: GreatBlue
Re: Procedure for tomorrow at 7:30 am. - 10/28/05 07:50 PM
One year anniversary of this thread!! Congratulations Becca on coming so far!
Posted By: Bengals Fan
Re: Procedure for tomorrow at 7:30 am. - 10/28/05 08:50 PM
There is a nice post on her site
Posted By: QCL
One year later... - 10/31/05 05:24 PM
I'm getting all choked up just typing this. I don't know what to say or how to thank all of you. You have made our lives easier, through your kind words, your constant prayer, your phone calls, the creation of an awesome website by a BOL user's husband... Bless you all that have blessed us, may God return the favor 10-fold.
Thanks to everyone that have prayed and continue to pray.
Last year at this time we were at such a terrible low. A nurse brought in a rocking chair and I just rocked my moaning 104 degree temp baby, wondering how long she could hold on.
Here is the the request that I made on 10/28/04 that started this massive thread.
Keep us in your prayers 10/28/04 04:45 PM
Well the "bear" is finally getting listed to receive a new liver. She is getting progressively worse. I am going to start the testing process to see if I am a good match for a living liver donation.
Keep us in your thoughts and prayers.
BTW - I'm in the hospital computer lab taking a much needed stress break and where do I come - BOL! LOL!
And remember you can always check for updates at
www.nataliebear.com
Posted By: QCL
Re: An update is long overdue and I'm sorry - 11/30/05 03:35 PM
For those of you that have never read this very long thread, my daughter got part of my liver in February of this year. I frequently post updates here.
Parts of this update are also on her webpage (click my profile):
I just wanted to let you know that for the month of December, the bear (and her story) is being featured on
Make a Child Smile .
I am humbled to say the least. Kids with life threatening illnesses are featured monthly and volunteers from all over the world send cards and letters to each child. Sometimes I forget just how sick she really is. I try to pretend that everything is normal. But to be featured on this site means that things are very far from normal.
Please check out the site and the story that we have submitted there. Also if you have time, please send a card this holiday season to one of the other kids that are featured there and make them smile.
Liver labs are in...and they are good.
Numbers are trending downward and that's a good thing.
They don't want to see us again until mid December (that's a new record - 5 weeks away from the hospital - knock on wood)!!!
A cute Christmas Story from us :
The bear is obsessed with the big guy in Red.
My daughter LOVES Santa. We went to our local pharmacy last weekend and he was there. She saw him and looked at me - her eyes were gleaming as she whispered, with awe, "Santa." He came over to her and she gave him, "Five." She turned her shy charm on and said, "Hi, Santa." As he walked away she said, "Santa, oh, no." I told her that it was OK; Santa had to visit with other kids too. And she said, "Bye Santa," and blew him a kiss. Oh, my heart just melted.
You see her relationship with Santa first started last Christmas. He came to our annual family Christmas party as he does every year. As he picked my daughter up, my grandma whispered in Santa's ear, "Santa, this is the little girl that needs a transplant." The bear (at 14 months old) was curious. She poked his nose and tugged on his very real beard. She made a new friend. At this age she was just beginning to experience a fear of strangers - but not with Santa.
Santa hugged her tight and asked, "Well, little one what do you want for Christmas?" One of my little cousins said, "She needs a liver!" Santa's eyes welled up with tears. He gave her a big hug and said, "I will pray for you, the Big Guy [Jesus] and I are close." Well, we all lost it then. I cried. But when don't I?
Christmas wishes can come true.
Posted By: gone
Re: An update is long overdue and I'm sorry - 11/30/05 05:23 PM
Thank you for the beautiful story and the update. That brought a tear to my eye and a lump in my throat.
You have a very special little girl there. Keep up the good work.
Posted By: waldensouth
Re: An update is long overdue and I'm sorry - 11/30/05 06:07 PM
It's great to hear that she's doing so well. and thanks for making me cry at work.....
Posted By: hmdagal
Re: An update is long overdue and I'm sorry - 11/30/05 06:20 PM
But they're good tears!
Thanks for the great news...
Posted By: Okie Dokie
Re: An update is long overdue and I'm sorry - 11/30/05 06:57 PM
Becca, I am so glad to hear that everything is going well with the bear. I try to keep up with her on her website, but I so enjoy reading about her here too.
Posted By: Nanwa
Re: An update is long overdue and I'm sorry - 11/30/05 07:05 PM
Hey Mom, of course the Big Guy and Santa are close. His other name is Saint Nick, isn't it?
Posted By: Darkhorse
Re: An update is long overdue and I'm sorry - 11/30/05 07:07 PM
Becca, everytime I'm here I get choked up. The Santa story is so wonderful, thank you for sharing. Your entire family continues to be in my prayers.
Signed: another Becca
Posted By: Bones
Re: An update is long overdue and I'm sorry - 11/30/05 07:40 PM
Gosh, like everyone else, that story brought tears to my eyes. I am so happy that she is doing well. I hope all of you have a special Christmas and you and The Bear get everything on your wishlist.
Posted By: D2Xs
Re: An update is long overdue and I'm sorry - 11/30/05 08:01 PM
Glad to hear she is doing well. Tell her to keep it up.
Posted By: Quadspapa
Re: An update is long overdue and I'm sorry - 11/30/05 08:21 PM
OK, I teared up too. I'm glad she's happy to see Santa and I pray that she continues to improve each and every day. Merry Christmas Nat.
Posted By: Princess Leia
Re: An update is long overdue and I'm sorry - 11/30/05 08:48 PM
Thanks for the update on Bear Bear. It's just what this place needed!
Posted By: Beagles22
Re: An update is long overdue and I'm sorry - 11/30/05 09:59 PM
LOVE the update Becca! Can't we all just use good news this time of year. I hope your family has a WONDERFUL holiday with your bear.
Posted By: CRAatBOK
Re: An update is long overdue and I'm sorry - 12/01/05 03:01 AM
You know Becca, it is awful hard to read this stuff with tears in your eyes. How can you not believe in Santa Claus when he comes through like that.
Posted By: RR Sarah
Re: An update is long overdue and I'm sorry - 12/01/05 02:20 PM
MOPNB-Your family is truly an inspiration to us all! And that settles it...there really is a Santa Claus!!
Posted By: corkygirl
Re: An update is long overdue and I'm sorry - 12/01/05 09:59 PM
What a special Santa!!! Glad she continues to do so well. I'm sure you will enjoy your Christmas with her this year!!!
Posted By: Cowboys Fan
Re: An update is long overdue and I'm sorry - 12/01/05 11:34 PM
Quote:
Christmas wishes can come true.
Isn't that the truth? It's so nice to have a Bear story and good news to boot!!
There's a new Bear update on
Natalie's Webpage .
Please keep them in your prayers for a quick recovery.
Posted By: tahdah
Re: Bear Update - 12/22/05 02:12 AM
More prayers on the way. Sounds like she is still at home and hoping that she can enjoy Santa. Mom and Dad, God grant you both strength.
Posted By: corkygirl
Re: Bear Update - 12/22/05 02:40 PM
Love and prayers to Natalie and Mom and Dad, as always. Loved the pictures on the website, looks like she is enjoying the snow!!! Merry Christmas Natalie
Posted By: QCL
Re: Bear Update - 01/30/06 08:17 PM
I've had a couple of requests for an update...so here goes.
Life is good!!!
We're doing "normal" kid stuff. Like potty training (whereby I think the parent is really the one that gets trained) and running all over the house and watching cartoons and laughing because you realize that the cartoon characters are funny – she just did that this week, by the way, watching "Brother Bear" of all things, and dancing and singing. And loving every single second of it.
So like I said, life is good.
She still has to get poked every once in a while for lab (blood) draws and for now her levels are stable. Stable. I love that word.
We still have to be careful with this being a germy season (she's at a high risk for pneumonia, etc.) but in all things are stable.
We will return on February 9 (the one year liver transplant anniversary - already) for a CAT scan of her lymph nodes to check for any reoccurrence of the PTLD (cancer of the lymph system) and we're praying that we'll get the "all clear."
Another thanks to all of you that have come along for the ride. It was bumpy there for a while...
(If you want to check it out, I posted new pictures on the front page of the webpage. Not for the squeamish.)
Posted By: Bones
Re: Bear Update - 01/30/06 08:29 PM
One year anniversary already?!
Amazing ... it seems like it just took place. Maybe not for you though. I am so happy to hear Natalie is doing so well. What a joy it must be for you to see her running around laughing, dancing and singing. You all have come a long way and you are truly an inspiration to us all!
HEY, HAPPY ANNIVERSARY TO YOU ALL!!! I can't believe it's a whole year already. I check out the website periodically...especially when I need to believe. Thanks for giving all of us the chance to chime in and celebrate with you. Here's to many happy returns of the day!
What is the address for the web site?
Posted By: Cowboys Fan
Re: Bear Update - 01/31/06 01:28 PM
Posted By: Bengals Fan
Re: Bear Update - 01/31/06 04:14 PM
Becca,
Never forget that it is not just you who are blessed by our prayers and support but us by your courage, devotion, and the heartwrenching roller coaster soap opera you have shared with us.
My question is, when are you going to have someone write the screen play for Lifetime or ABC Family?
PS: Brother Bear is one of my favorites!
Posted By: QCL
Re: Bear Update - 01/31/06 05:25 PM
BF-
The Kindney Foundation (who puts on the US and World Transplant games) is currently pitching our story to 5 or 6 magazines.
Posted By: Texas Boy
Re: Bear Update - 01/31/06 06:43 PM
I have always tried to keep up with Natalie but I have never really posted anything before. What I think is going to be special is when the Bear gets old enough to read and she see's this thread and her Mom's devotion and everyone on BOL's prayers and thoughts. This truly is a touching story and my thoughts and prayers will continue to be you and your family.
Posted By: Bengals Fan
Re: Bear Update - 01/31/06 09:30 PM
Quote:
BF-
The Kindney Foundation (who puts on the US and World Transplant games) is currently pitching our story to 5 or 6 magazines.
So, is there going to be a scene of all the people keeping up with your story on BOL sitting at their computers all over the world reading your story and praying for you and showing how much you all touched our lives? If so, I want Anthony Lapaglia to play me when they do the screen play!
Posted By: QCL
Re: Going to the hospital... - 02/01/06 10:03 PM
Crap. Crap.
No time for a full update. We're being admitted to the hospital tonight. Bilirubin is 12. Not sure why. It's not been this high since before transplant.
Posted By: Anonymous
Re: Going to the hospital... - 02/01/06 10:17 PM
Prayers from California. I will be thinking of you.
VioletRose
Posted By: Busy Bee, CRCM
Re: Going to the hospital... - 02/01/06 10:21 PM
As soon as I read your post, I said a prayer for all of you. I ask the Lord to give you and Jason a peace that surpasses all understanding, I ask that the Lord strengthen Miss Natalie's body to fight off any bugs that she may have gotten, and I pray that the doctors have keen intuition to figure out what's going on.
Please be comforted knowing that your prayer partners here in BOL-Land are on their knees!
Posted By: Countess Kiwi
Re: Going to the hospital... - 02/01/06 10:41 PM
Praying for all of you.
Posted By: Truffle Royale
Re: Going to the hospital... - 02/01/06 10:45 PM
Another prayer partner checking in to let you know I'm doing double time prayers that all's well asap! ((hugs))
Posted By: Princess Leia
Re: Going to the hospital... - 02/01/06 10:46 PM
Becca, a wonderful friend sent something similar to me recently:
"Father in Heaven, please be with Becca, Jason & Natalie. Please give them comfort. Wrap your heavenly arms around them and support them as the doctors heal Natalie, Lord. Let this be but a bump in the road for them.
In Your name, I pray.
Amen."
Prayers of comfort to all of you during this scary and uncertain time.
Posted By: RR Jen
Re: Going to the hospital... - 02/01/06 10:55 PM
More prayers from MO...
Posted By: AngelinaLM
Re: Going to the hospital... - 02/01/06 10:56 PM
Prayers from ID
Posted By: tahdah
Re: Going to the hospital... - 02/01/06 10:58 PM
Prayers from Mi. Strength to you and your husband. Faith that the doctors can fix this. Hope that all will be well.
Posted By: Jay Bruce
Re: Going to the hospital... - 02/01/06 10:58 PM
Quote:
Becca, a wonderful friend sent something similar to me recently:
"Father in Heaven, please be with Becca, Jason & Natalie. Please give them comfort. Wrap your heavenly arms around them and support them as the doctors heal Natalie, Lord. Let this be but a bump in the road for them.
In Your name, I pray.
Amen."
Prayers of comfort to all of you during this scary and uncertain time.
Amen.
Posted By: someone else
Re: Going to the hospital... - 02/01/06 10:59 PM
You and your family are in my heart! Keep us posted!
Posted By: *nUnZeO*
Re: Going to the hospital... - 02/01/06 11:05 PM
prayers frm TX
Posted By: Search_Me
Re: Going to the hospital... - 02/01/06 11:20 PM
More prayers from Texas, God bless you and your family at this time and always.
Posted By: CRAatBOK
Re: Going to the hospital... - 02/02/06 12:45 AM
Becca, Sorry to hear the Bear isn't doing well. Please give her a hug for me and tell her I am sending lots of love her way.
Posted By: wavewatcher
Re: Going to the hospital... - 02/02/06 02:47 AM
prayers from HI, strength to you...
Posted By: Citrus
Re: Going to the hospital... - 02/02/06 04:26 AM
Prayers for you and your lovely family, Becca. May healing come quickly to Miss Natalie. Keep strong!
Posted By: waldensouth
Re: Going to the hospital... - 02/02/06 01:09 PM
May God heal Miss Natalie and give Becca and Jason the strength they need to get through this. May HE wrap HIS loving arms around them and fill them with the love, peace, comfort, and joy that only HE can give.
Posted By: doodles
Re: Going to the hospital... - 02/02/06 01:18 PM
Prayers already going up from Pennsylvania. "This is the confidence we have in approaching God: that if we ask anything according to His will, He hears us." 1 John 5:14. You have been a blessing to many of us at BOL and we will continue to lift your family up in prayer for strength and comfort.
Posted By: RBanker
Re: Going to the hospital... - 02/02/06 02:15 PM
God sends special angels to watch over our precious children - continued thoughts.
Posted By: Bengals Fan
Re: Going to the hospital... - 02/02/06 02:30 PM
May God continue to guard and protect your precious family. May He bless you with his healing touch.
We will never cease to think of you, your husband, and the little bear that could (just like the engine). You are in our prayers.
Posted By: Retired DQ
Re: Going to the hospital... - 02/02/06 03:59 PM
Oh Becca, that stinks. My thoughts are with you, Jason and the bear...
Posted By: Nameless
Re: Going to the hospital... - 02/02/06 04:18 PM
Becca - I'm sorry to hear that news. My thoughts and best wishes are with the bear and your family.
Posted By: Okie Dokie
Re: Going to the hospital... - 02/02/06 05:42 PM
Sorry to hear that Natalie is headed back to the hospital. I will keep her and your family in my prayers.
Posted By: LoisLane
Re: Going to the hospital... - 02/02/06 07:06 PM
Here's hoping that the next news you post to us will be good news.
Posted By: HRH Okie Banker
Re: Going to the hospital... - 02/02/06 07:49 PM
Golly - I hope everything is going well. I keep checking, hoping we'll hear some good news soon. Lots of prayers!
Posted By: Deena
Re: Going to the hospital... - 02/02/06 08:49 PM
More prayers from PA, Becca. You know if God brings it to you, He'll give you the strengh to get through it. I pray that this will be but a brief "bump in the road."
Posted By: Darkhorse
Re: Going to the hospital... - 02/02/06 09:18 PM
Prayers from New Mexico for you, Jason and the bear.
Posted By: Bengals Fan
Re: Going to the hospital... - 02/02/06 09:20 PM
News from Natalies site, completely and totally plagarized, but I don't think Becca will mind....
Thursday, February 02, 2006 01:03 PM CST
Just another day on 6 West
It had been 5 months 2 weeks and 2 days since we were last in the hospital, but who was counting? We're back on 6 West.
Long story that I'll try to make short...Natalie has been sick the past few days, with what we thought was a virus. Tuesday she threw up on me and then slept all day, Wednesday it was more sleeping, and then she turned a bright shade of yellow in just a few hours.
So we went to Swedish American for labs. Once the results were in, CMH called us and told us to come to the ER.
We arrived at the ER at 7pm last night, blood tests were drawn, cultures were taken, an IV was started, chest X-rays were performed, and Natalie was given glucose. Within just a few hours, we saw improvement. She had lost 3 pounds since our last clinic visit in January and since starting the IV, she'd gained one pound back in fluid.
We got a room on the floor at 11pm. Natalie had a big girl bed. I think that some of the nurses got a little choked up to see "their girl" growing up!
Tests today
No results yet, but Natalie had an ultrasound and a CAT scan today.
There are 3 theories, in order of the best case being first and worse case being last:
1. This is another episode of the bile ducts being blocked and Natalie needing a PTC tube.
2. Her portal vein stenosis (narrowing) issues has returned or clotted.
3. Her Hepatic Artery clotted.
The ultrasound looked at the bile ducts and the CAT scan looked at the vein and artery. They wanted to look at the lymph nodes (for next week's CAT scan), but it would have meant using too much contrast and making the results hard to read.
I love and hate seeing old friends
I love our nurses. I love the staff here. But seeing them means that Natalie is here and I hate that.
IR gave Natalie a care bear that they've been saving for her since Christmas and the nurses on 6 west just gave her the Kewpie doll that they've been saving for her.
Resting comfortably
Natalie is now in her hospital room resting after her busy busy morning. I'll update when I know more.
Posted By: TTC Queen
Re: Going to the hospital... - 02/02/06 10:29 PM
Prayers are coming from Oklahoma for all of your family.
Posted By: SMQ, CRCM
Re: Going to the hospital... - 02/03/06 05:32 AM
Lots and lots of prayers from MS. May the Lord be with you and bless you.
Posted By: MStateFan
Re: Going to the hospital... - 02/03/06 03:09 PM
More prayers from MS . . .
Posted By: Angel Eyes
Re: Going to the hospital... - 02/03/06 04:18 PM
Hang in there! You guys have so many people praying for you it is just amazing. I don't know which of the options is best....but what ever it is, I hope it is something that can be fixed quickly and easily for all of your sake.
Posted By: QCL
Re: home... - 02/07/06 04:39 PM
Thanks all for the prayers...we are home.
Here is a
link to our page with an update. I'd post more, but I've got 86 more emails to weed through
!
Posted By: Beagles22
Re: home... - 02/07/06 10:35 PM
Prayers coming from Wisconsin!! I am sorry I didn't know more earlier, not much time recently, but I am praying for you now!!
Posted By: Search_Me
Re: home... - 02/07/06 10:54 PM
Continued prayers. She is such a cutie.
Posted By: *BUSTER*
Re: home... - 02/07/06 11:47 PM
More prayers From Texas!!! What a heartwarming(and heartbreaking at times) story y'all are!!!
Posted By: Citrus
Re: home... - 02/08/06 03:53 AM
Nannie home! Yay!!!
Will keep you in my prayers, as well!
Posted By: QCL
Re: A year later - 02/09/06 03:28 PM
What a roller coaster of a year it has been. Thanks to all of you for praying us through it!!!
I have posted pictures of the livers on the bear's page. You are welcome to take a look, if it won't bother you.
Posted By: doodles
Re: A year later - 02/09/06 04:45 PM
Happy Anniversary here to! I had tears in my eyes as I read your account of last year on Natalie's website. What a story! What a way to glorify God and all He can do. "The Lord is good, a refuge in times of trouble. He cares for those who trust in Him." Nahum 1:7 You have definitely been an inspiration to many.
Happy Anniversary to my favorite little Bear. And to one of my personal hero's ... Mom.
To answer your question on the website ... I didn't get a lot done that day at work, but spent an enormous amount of time in prayer. Towards the end it was desperate prayer because news was hard to come by, but I remember the tremendous sense of relief when an update to the Caringbridge page finally came.
Posted By: cheekEE
Re: A year later - 02/09/06 07:58 PM
Wow Becca-
I can't believe the difference in the livers (I looked at your pictures). One of my friends passed away this year and was an organ donor. He supplied a liver, 2 kidneys, 2 lungs, and a heart!
Happy Anniversary
Posted By: QCL
Re: A year later - 02/09/06 08:03 PM
Thanks BC,
And God Bless the family of your friend that was able to make such an amazing decision (to save the lives of 6 strangers) at such a terrible time of grief.
Posted By: corkygirl
Re: home... - 02/11/06 08:44 PM
This is one of those times I really hate my breast cancer history cause I am not allowed to donate any of my organs!!!
I'm sad to read the latest struggle but glad your home and hopefully your little one is getting better. Prayers coming your way, as always.
Posted By: QCL
An update...retransplant mentioned as an option - 03/14/06 07:38 PM
I am essentially copying and pasting from our webpage, but wanted to give an update for all of you that have been gracious with your prayers over the past year...
Why is it we always end up having 3 options?
So we had our clinic visit in Chicago yesterday. We went straight to the lab for a blood draw ...and while at the lab, the phone rang. It was our nurse Joan, Dr. Superina (our surgeon) had found a few minutes to meet with us...so we sprinted upstairs. Our discussion went like this. He wants a better look at what is going on inside before making a decision, so we have scheduled an appointment in a month for a squirt of the PTC tube (with dye) in IR.
As a reminder - The site where Natalie's new liver's main bile duct is connected to the small intestine is becoming "elastic." (While it sounds like it would be a good thing, it's not) As it continues to narrow the "sludge" within the bile (everyone has this - but Natalie has more we think do to possible damage from the hepatic artery clotting after transplant) is clogging up everything and making her very very sick. It needs to be fixed with surgery.)
From there, there are 3 options we may have:
1. Surgery to correct the narrowing, if the problem is actually with the connection between the duct and the intestine.
2. Leave the tube in for another 6 months.
3. Retransplant - This one is causing me stomach pains. But the reason is that the good doctor has a theory; there may be lasting damage to the bile duct other than just at the connection between the duct and the intestine. This damage may be from when her hepatic artery clotted (2 days after transplant) and that surgery may not help. See the liver was not getting blood for a period of time, even if brief, and typically a repair of the hepatic artery is not successful. (That is why she was listed Status 1, after the transplant).
So for the next month, we will be hospital free and loving every minute of it.
Natalie's labs look good. And the EBV level is holding steady.
I wrote more about our little trip to the Shedd Aquarium at our webpage...
Posted By: MichelleDawn
Re: An update...retransplant mentioned as an option - 03/14/06 07:42 PM
As always, your family is in my thoughts and prayers.
Posted By: Okie Dokie
Re: An update...retransplant mentioned as an option - 03/14/06 07:48 PM
I keep up with you guys on your website and pray for you all daily.
Posted By: Search_Me
Re: An update...retransplant mentioned as an option - 03/14/06 08:17 PM
Prayers still coming from Texas for the Bear and all involved.
Posted By: TTC Queen
Re: An update...retransplant mentioned as an option - 03/14/06 08:37 PM
And prayers are still coming from Oklahoma.
Thanks for the update.
Posted By: *BUSTER*
Re: An update...retransplant mentioned as an option - 03/14/06 11:06 PM
More prayers from Texas.
Posted By: corkygirl
Re: An update...retransplant mentioned as an option - 03/14/06 11:20 PM
Prayers, as always from the western suburbs of Chicago. I wish I could just fix it all for you, no doctors needed.
Posted By: NY2004
Re: An update...retransplant mentioned as an option - 03/15/06 01:41 PM
Praying and many hugs.
Posted By: P*Q
Re: An update...retransplant mentioned as an option - 03/15/06 02:00 PM
Prayers continue from here!
Posted By: Bengals Fan
Re: An update...retransplant mentioned as an option - 03/15/06 02:53 PM
Should we put you in for a role in Miracle Workers? They don't build you a house, they just fix you. (Well, fix Natalie)
You are still an inspiration.
Posted By: QCL
Re: An update...retransplant mentioned as an option - 03/15/06 04:07 PM
Thanks BF et al.,
Her surgeons and their hands working with the hands of God are the only miracle workers we need...
Posted By: Bengals Fan
Re: An update...retransplant mentioned as an option - 03/15/06 06:23 PM
Quote:
Thanks BF et al.,
Her surgeons and their hands working with the hands of God are the only miracle workers we need...
I know, I know, but every time I see pictures of that little dollbaby, I think gee, she should be on TV!
Posted By: wavewatcher
Re: An update...retransplant mentioned as an option - 03/17/06 10:40 PM
we keep praying for you folks. We know you will be guided to the "right" decision for Natalie.
Posted By: QCL
A new update - 04/24/06 01:03 PM
Sorry...for this but I am just going to copy and paste from our webpage:
I don't want to post...
Have you ever not wanted to communicate happy news for fear of somehow "jinxing" it - and then causing it to not be happy news anymore. That's where I am right now. I want to shout from the mountain tops how great Natalie's labs are. I really do want to tell you that that despite the PTC drain still being in, or because of it, she is doing awesome. Really, I want to tell you. It's like jumping in a pool that you know will be cold. You know that you will acclimate to it eventually, and that everything will be fine, and the water looks gorgeous...
Here goes...
Lab results are in.
We started weaning prednisolone about 2 weeks ago, but I haven't really talked about it much since then in case it didn't work. I hate getting my own hopes up, let alone the hope of perfect strangers and web page readers.
And so far so good. We started it like this: 0.5ml on the first day (half of a normal dose), then 1.0 ml the next day, then 0.5 ml the next, then 1.0 ml the next day...well you get the point, for a week. We were told if her labs were good, we could go to prednisolone every other day. Pred. is not the easiest drug to wean, so many kids have problems, I've been so nervous.
Total Bili - 1.0 {1.1}
Conj bili - 0.2 {0.3}
AST - 35 {30}
ALT - 30 {37}
GGT - 44 (yeah, I'm crying...this is so good for her) {69}
Alk Phos - 267 {270}
Hemoglobin - 12.1 (holy crap, it's holding steady!) {13}
Back in January, she had some pretty good labs - those are in { } and these are even better. Then in February all he!! broke lose and bile got blocked up inside of her, and her bili shot up to 12. The current labs are the work of the PTC drain which I loath. I guess it's doing miraculous things.
So thanks for checking in on us. I promise to get the Easter pictures up from this past weekend. (They are there on the webpage now!)
Posted By: waldensouth
Re: A new update - 04/24/06 01:06 PM
What wonderful news, MOPNB!! Here's praying that the trend continues.. Stay Strong.
Go Bear!!!
MOPNB, get used to the water.
prayers and ((hugs))
Posted By: Patsy Cline
Re: A new update - 04/24/06 02:12 PM
Thanks for the wonderful update.
I loved all the new pictures too!
Posted By: corkygirl
Re: A new update - 04/24/06 08:41 PM
Thanks for the update, I was just wondering and thinking about "yous'guys". Sharing good news will not jinx it, we won't let it. Enjoy the positive news and wonderful spring weather in Illinois right now.
Posted By: CRAatBOK
Re: A new update - 04/24/06 10:41 PM
Becca, That is great news. I am so glad she is doing better.
Posted By: Anonymous
Re: A new update - 04/24/06 11:12 PM
Becca, you and Natalie are always in my thoughts. You're my roll model as we go through our challenges. While I don't post much anymore, I do keep up on what's up with little Bear
I'm glad to read it's going well, and we'll keep those prayers going for even more good news in the future!
Love Dawnie and ElJay!
Posted By: QCL
Could you please lift us in prayer a little more? - 05/02/06 05:35 PM
(Copied from her page)
Like I've been kicked in the gut repeatedly...
I cannot post. I am numb.
Here is the email that I just got from the hospital:
Hi Becca,
Dr. Superina finally responded to my request - I just got his email today. He says the cholangiogram still shows pretty "sick ducts" and that leaving the tube in longer would not help. He mentioned retransplant (I'm saying this here because I seem to recall that he did mention this to you when you saw him last) as the next step. I'll confirm that with you. I will discuss Natalie with the team, see if everyone is in agreement re: pulling the tube.
Holy [censored]. Does that mean we watch her get sicker while we wait?
I did just call and Joan, the nurse practitioner that I got this from, is not leaning towards having the tube pulled. She is on her way to the good doctor's office for a face to face talk.
She is currently listed, although it's inactive, but at least we won't have to go through insurance approval again, like that is really what I care about right now anyway.
Posted By: Skittles
Re: Could you please lift us in prayer a little more? - 05/02/06 05:57 PM
Becca, I don't know what to say. With all that you have been through over the past couple of years, this must have been an unimaginable e-mail to receive.
Just know that your BOL family is here and have never stopped praying for you and Natalie.
Posted By: someone else
Re: Could you please lift us in prayer a little more? - 05/02/06 05:58 PM
Hang in there Super Mom! You will be in my thoughts. Keep us posted.
Posted By: Kathleen O. Blanchard
Re: Could you please lift us in prayer a little more? - 05/02/06 05:59 PM
I am so sorry to hear this news. I will keep your family in my prayers. At least the insurance won't delay anything!
Posted By: Countess Kiwi
Re: Could you please lift us in prayer a little more? - 05/02/06 06:01 PM
Dang. Praying for you guys, hang in there.
Posted By: P*Q
Re: Could you please lift us in prayer a little more? - 05/02/06 06:05 PM
Oh gosh. Becca, so sorry. Hang in there, we're all pulling and praying for you in a big way!
Posted By: Retired DQ
Re: Could you please lift us in prayer a little more? - 05/02/06 06:06 PM
Dang is right, the poor little Bear. Hang in there Becca, we are pulling for you.
Posted By: Truffle Royale
Re: Could you please lift us in prayer a little more? - 05/02/06 06:39 PM
Dang isn't strong enough.
Becca, words fail me.
I'm on my knees praying for our Bear and her parents.
We're here if you need us.
TR
Posted By: E.E.G.B
Re: Could you please lift us in prayer a little more? - 05/02/06 06:45 PM
Thinking of you guys, Becca. Kick in the guts is putting it mildly.
Posted By: Patsy Cline
Re: Could you please lift us in prayer a little more? - 05/02/06 07:14 PM
Oh Becca - I will up the prayers!
Posted By: slick
Re: Could you please lift us in prayer a little more? - 05/02/06 07:25 PM
so sorry becca, thoughts and prayers for you guys!
Posted By: TTC Queen
Re: Could you please lift us in prayer a little more? - 05/02/06 07:36 PM
Well D%#n!!! I am sooooo sorry to hear this unwelcome news--I am pretty sure what I really wanted to say would be censored. "That is the pits!" just doesn't quite cover it.
Your family is in my thoughts and prayers.
Posted By: MichelleDawn
Re: Could you please lift us in prayer a little more? - 05/02/06 08:44 PM
My heart just aches for your and your family. As always, you are in my prayers.
Michelle
Posted By: waldensouth
Re: Could you please lift us in prayer a little more? - 05/02/06 08:45 PM
Becca, there are no words... We've all come to love You, your family, and little Nataliebear. ((HUGS)) to all of you. May God give you all the strength that you need to get through this next challenge. We will continue to lift you up in prayer daily.
Posted By: Okie Dokie
Re: Could you please lift us in prayer a little more? - 05/02/06 08:52 PM
I'm so sorry to hear this news. I will keep praying that everything works out.
Posted By: Darkhorse
Re: Could you please lift us in prayer a little more? - 05/02/06 09:34 PM
Oh Becca, I can't imagine . . . words fail me right now, but I will be praying for you, Jason and Bear.
Posted By: MStateFan
Re: Could you please lift us in prayer a little more? - 05/02/06 10:02 PM
Thoughts and prayers are with y'all.
Posted By: Cowboys Fan
Re: Could you please lift us in prayer a little more? - 05/02/06 10:07 PM
Quote:
Thoughts and prayers are with y'all.
From all over the country
Posted By: Princess Leia
Re: Could you please lift us in prayer a little mo - 05/03/06 01:21 AM
I don't know what to say, but know we're praying.
Posted By: Citrus
Re: Could you please lift us in prayer a little mo - 05/03/06 06:04 AM
Poo! I don’t like setbacks!
Posted By: Citrus
Re: Could you please lift us in prayer a little mo - 05/03/06 06:06 AM
Sweet little Bear
A child full of grace
A single prayer’s not enough
For the challenge you face.
Rested assured we’re all here
Praying and pulling for you
Each day for your care
To grow real healthy too!
You are in our BOL hearts! We are praying for special blessings to come your way soon!
Posted By: NY2004
Re: Could you please lift us in prayer a little more? - 05/03/06 12:36 PM
Hugs and prayers!
Posted By: KAT
Re: Could you please lift us in prayer a little more? - 05/03/06 01:27 PM
Becca I have been a poster for less than 2 years and have followed this thread. I am humbled by the strength you and your family posess. Please know that my thoughts and prayers are with all of you.
Posted By: Anonymous
Re: Could you please lift us in prayer a little more? - 05/03/06 03:32 PM
Sorry to hear this news. I will continue to pray for you and the Bear. Stay strong!
Posted By: deppfan
Re: Could you please lift us in prayer a little more? - 05/03/06 04:37 PM
Becca, you are all a part of my "family" and I am numb too. I will continue praying and I just added you guys to a world-wide prayer list that I belong to. Damn....I don't know what else to say except don't lose faith. I'm so sorry that you are all having to go through this.
Posted By: hmdagal
Re: Could you please lift us in prayer a little more? - 05/03/06 05:21 PM
I'm so sorry for this setback, and will pray that another solution will present itself.
Posted By: Deena
Re: Could you please lift us in prayer a little more? - 05/03/06 07:22 PM
Oh, Becca, I'm so very sorry to hear of this latest setback. Please know that I join with the others in lifting you and your family in prayer. Keep the faith and know that in Him all things are possible.
Posted By: tahdah
Re: Could you please lift us in prayer a little more? - 05/03/06 09:18 PM
Lots of prayers coming your way. Take care of yourself as well.
Posted By: CRAatBOK
Re: Could you please lift us in prayer a little more? - 05/05/06 04:30 AM
Becca, So sorry to hear this news. Stay strong and know that we are all pulling for the bear and her family.
Posted By: QCL
Re: No answers... still... - 05/05/06 02:49 PM
So yesterday, we went to Children's for a scheduled CAT scan. Its purpose was to look at Natalie's lymph nodes, following her PTLD diagnosis last summer - to make sure that they have not grown. Jason and I made the trip together, hoping to get some answers.
Natalie did awesome yesterday. As we neared our turn, our nurse came in to place the IV (necessary for giving the sedation meds and for the contrast for the CAT scan). Natalie looked at her and said, "No VI." Poor kid knew exactly what was coming. Our nurse got the IV placed on the first try and Natalie, through tears, said, "Thank you." But it took 2 doses of versed and one of ketamine to calm her down, once she saw the CAT scan machine. She knew what was coming and was not happy about it. She talked to the machine, instead of sleeping, in that little sing-song voice of hers. Thankfully, our Dr. for the day came to us in recovery, instead of making us go up to clinic.
Here is what they had to say.
All conversations with Dr. Superina (the transplant surgeon) have been via Blackberry (yeah, I'm so need one) from South Carolina. So no face to face conversations have been had with him, yet. However, our "team" is in agreement with him that surgery to correct the bile duct connection is most likely not going to work. And why put her through something like that if it won't be beneficial? And a new transplant is probably the best solution. There it is though..."probably." They would like to do another squirt of the tube and then most likely they will pull it. That makes me so very nervous. After we came home we got a call from our nurse. The CT scan of the nodes looked good and they were able to see some of the bile dusts in the liver too. However, those bile ducts still looked enlarged and "sick." Even with the tube being in place.
Not sure what that means or what the future holds. Like I said, no answers, only more questions. I'm praying that the answers come soon.
So there it is; prayers are appreciated.
Posted By: Rie A
Re: No answers... still... - 05/05/06 02:55 PM
I am so sorry, I so wish I could give you more than my thoughts and prayers, but these I give to you abundantly.
Posted By: TTC Queen
Re: No answers... still... - 05/05/06 02:56 PM
Please remember that you and your family are in my thoughts and prayers.
Posted By: Okie Dokie
Re: No answers... still... - 05/05/06 03:16 PM
Becca, I am so sorry that you did not get the answers you were seeking. I pray for you all daily and I know that God is watching over you and the bear.
Posted By: thomasj
Re: No answers... still... - 05/05/06 04:03 PM
I am among the many others here who think of and pray for you and your family often.
Posted By: Nanwa
Re: No answers... still... - 05/05/06 08:02 PM
Your little one and you are constantly in my thoughts and prayers.
Posted By: Anonymous
Re: No answers... still... - 05/05/06 08:33 PM
You have such a brave little girl there! She, as well as all of you, have been through so much. I will continue to keep all of you in prayer.
==LadyLuck
Posted By: P*Q
Re: No answers... still... - 05/05/06 08:45 PM
Always in my thoughts and prayers continue for you and your little girl.
Posted By: lawmansbabe
Re: No answers... still... - 05/05/06 08:53 PM
Hold strong...in a few months you'll be able to look back and be amazed at how you all came through this fire. Your family, and especially your precious little girl, are in my prayers.
Posted By: Anonymous
Re: No answers... still... - 05/05/06 09:10 PM
I will keep you and your precious child in my thoughts and prayers and I will encourage my children to do the same. I admire your grace and determination and I know that you'll triumph over this adversity.
God bless you.
Suzy
Posted By: CRAatBOK
Re: No answers... still... - 05/06/06 02:30 AM
It just breaks my heart when I think of all the Bear is going through. She is so lucky to have you as her parent. Hang in there and keep thinking positive thoughts.
Posted By: Citrus
Re: No answers... still... - 05/06/06 04:48 AM
Continued prayers.
Posted By: Princess Leia
Re: No answers... still... - 05/06/06 05:22 PM
Hugs to the bears. Hang in there. You know we're here for you.
Posted By: Truffle Royale
Re: No answers... still... - 05/06/06 10:41 PM
Ditto PL. And you know some of us can be there for you too if you need us. Prayers and hugs.
TR
Posted By: Patsy Cline
Re: No answers... still... - 05/08/06 02:42 PM
With tears in my eyes... please know that you are in my prayers. Natalie is so brave and strong. You and your husband are wonderful parents.
Posted By: LoisLane
Re: No answers... still... - 05/08/06 07:09 PM
Love and Prayers...
Posted By: CRAatBOK
Re: No answers... still... - 05/08/06 07:20 PM
Becca, I saw a billboard down her in Abilene that said, Donors make better Livers. I thought of you and the Bear. Hope things are going well.
Posted By: Beagles22
Re: No answers... still... - 05/08/06 08:37 PM
Prayers from me in WI Becca. You have all been through so much, may the Lord bless you and keep you...
Posted By: corkygirl
Re: No answers... still... - 05/11/06 09:11 PM
Becca, I've read this a few times, trying to think grasp this development and what I can say that might help. All I can think of is that the three of you are in my thoughts and prayers and if I could do more I would. She is a brave little girl with really special parents and we are all blessed that you allow us to give you strength and comfort when we can.
Posted By: Nanwa
Re: No answers... still... - 05/12/06 12:37 PM
A special Happy Mother's Day to a very special mom. We love you MomofNatalieBear!
And from NatalieBear to you: Thanx Mom!
Posted By: Suzie
Re: No answers... still... - 05/12/06 05:22 PM
Quote:
A special Happy Mother's Day to a very special mom. We love you MomofNatalieBear!
I want to second that. I don't know of any Mom more deserving of a very special M Day than MomofNatalieBear. Hoping your special day is full of joy and love --
Absolutely Happy Mothers Day to a very special mother and her special daughter!
Posted By: Bones
Re: No answers... still... - 05/12/06 06:51 PM
Ditto on the mother's day wishes! You certainly deserve that special day!
Posted By: Princess Leia
New pictures of the Nataliebear - 06/27/06 12:45 PM
There are new pictures of Natalie on her website - on the front page and also under the "pictures" tab at the top.
Posted By: CRAatBOK
Re: New pictures of the Nataliebear - 07/04/06 05:55 AM
What fantastic pictures. It is so great seening her enjoy herself. She looks great. Why no pictures of Mom?
Posted By: QCL
Re: A little update on the bear... - 09/06/06 02:01 PM
Click here to see pictures from my sister's wedding:
http://static.flickr.com/97/233767615_05da0484ae.jpg?v=0 http://static.flickr.com/94/233760741_9266918023.jpg?v=0I bought the dress back in May, when we were first beginning to discuss re-transplant. No decision has been made yet. But just buying the dress was a real test of faith for me.
Thanks all, for your continued support.
Posted By: Skittles
Re: A little update on the bear... - 09/06/06 02:05 PM
What beautiful pictures. Thanks so much for sharing.
Posted By: P*Q
Re: A little update on the bear... - 09/06/06 02:08 PM
Oh my gosh, she is simply beyond precious! Absolutely beautiful!!!!!!!!!!
Posted By: Okie Dokie
Re: A little update on the bear... - 09/06/06 02:11 PM
She is sooooo beautiful!!! I absolutley love the picture of her and daddy.
Posted By: Beagles22
Re: A little update on the bear... - 09/06/06 02:16 PM
She is just a little princess. What priceless pictures! I too thank you for sharing.
Again though...no pictures of mom?
Posted By: Snowqueen
Re: A little update on the bear... - 09/06/06 02:30 PM
She is soooooo adorable! What a little Princess!
Thanks for sharing!
Posted By: Retired DQ
Re: A little update on the bear... - 09/06/06 02:37 PM
Becca, great pics!!!
Posted By: QCL
Re: A little update on the bear... - 09/06/06 02:39 PM
Here is one more. Natalie and cousin Ava wanted to talk to Mary:
http://static.flickr.com/98/233760739_302d46c465.jpg?v=0
Posted By: KAT
Re: A little update on the bear... - 09/06/06 03:22 PM
The pictures are fantastic
Posted By: cheekEE
Re: A little update on the bear... - 09/06/06 03:29 PM
Natalie and Ava are so cute together!
Did she twirl all day in her fancy dress?
Posted By: corkygirl
Re: A little update on the bear... - 09/06/06 03:43 PM
Oh Becca, what a beautiful little girl, thanks so much for sharing the pictures with us. Actually, thanks for sharing your daughter with us, her "extra aunts and uncles"
Posted By: CRAatBOK
Re: A little update on the bear... - 09/06/06 06:03 PM
She is growing up so fast. The picture of her and Ava almost makes them look like twins. Would love to see one of mom and dad all dressed up.
Posted By: Truffle Royale
Re: A little update on the bear... - 09/06/06 06:16 PM
I liked the picture on the website where her little bare toes stick out from under the dress. How like a child to get all gussied up and still want to run through the grass barefooted.
congrats to your sister and husband...and all the rest of your family too. Thanks for sharing the joy.
Posted By: wavewatcher
Re: A little update on the bear... - 09/06/06 08:18 PM
great pics - thanks for sharing. Natalie looked like the fairy tale princess - you must have been overwhelmed with her beauty and the joy she felt wearing the princess dress.
Posted By: E.E.G.B
Re: A little update on the bear... - 09/08/06 08:41 PM
SOOOOOOOO pretty!!
Posted By: Countess Kiwi
Re: A little update on the bear... - 09/09/06 03:00 PM
She is so beautiful.
We will be praying especially hard for you on Monday.
Posted By: tahdah
Re: A little update on the bear... - 09/10/06 01:05 AM
What a great looking kid, I so wish your family much happiness.
Posted By: Truffle Royale
bear's back in hospital for tests - 09/11/06 04:49 PM
Well, the wedding's over and the Bear is back at Children's in Chicago undergoing tests to determine what's going on and what they will do next.
Pray, everyone...hard. Give it all you've got! Let's flood those pearly gates with our own little tidal wave of prayer that God will help Natalie come through this with the best possible results!
Posted By: Skittles
Re: bear's back in hospital for tests - 09/11/06 05:01 PM
Thanks for keeping us informed, Truff. My prayers are with them.
Posted By: QCL
Re: bear's back in hospital for tests - 09/11/06 07:26 PM
Back at Hotel-Children's Memorial...
And the news is not the greatest.
Sorry.
Dr. Donaldson and Dr. Kim from IR told me before the procedure that it would either take 15 minutes or an hour and a half, depending on what they found. After an hour and 35 minutes my stomach cramped into knots. Then Dr. Kim came with the news.
The tube is still in. At this point they do not feel comfortable taking it out, considering how rotten everything looked. She had not only sludge but also stones that had formed out of the sludge. One could call them gallstones, but since she no longer has a gallbladder (since Dec. 19 2003) I'll just call them stones. Stupid stones.
So Dr. Kim said, "At this point I would recommend re-transplant, but we cannot get in touch with Dr. Superina or Dr. Alonso, since they are both out of town for the next 2 days." (Those are her main doctors and the head of the department.)
As I sat there, dropping everything I came in with, my coat on the floor, spilling my latte, and picking my jaw off of the floor, I was stunned.
She is now inpatient at least for the nexst 24 hours to monitor her. Since they did some major cleaning of the ducts, they want to watch her. She is having some bleeding in her stool, so we are keeping an eye on it.
She's feeling kind of crappy right now, in every sense of the word.
Posted By: Skittles
Re: bear's back in hospital for tests - 09/11/06 07:29 PM
Hang in there Becca and know that your BOL family is all here for you. You and your family are in my prayers.
Posted By: Princess Leia
Re: bear's back in hospital for tests - 09/11/06 07:29 PM
Grrr. I'm so sorry that it wasn't what we were all hoping for. Please know you're in our prayers.
Posted By: Truffle Royale
Re: bear's back in hospital for tests - 09/11/06 07:46 PM
oh dear. I was so hoping and praying for a bit of good news on this dreary sad day.
She's in the best place she could be getting care from the best doctors and, while I cannot claim that my prayers are the best, she (and you and Jason) have them too.
((hugs)) dear Becca. Stay strong. Let us know if you need anything beyond what we write here.
TR
Posted By: Quadspapa
Re: bear's back in hospital for tests - 09/11/06 08:02 PM
I am so sorry to read your report on the latest condition. Prayers being said......Please continue on with faith...
Posted By: Deena
Re: bear's back in hospital for tests - 09/11/06 08:25 PM
Continued prayers for you and your family, Becca. Hold on to your faith and to each other.
Posted By: RBanker
Re: bear's back in hospital for tests - 09/11/06 08:31 PM
I've been reading the news, but not posting - after holding my precious nieces and nephews this past weekend, my heart is overflowing with thoughts of your precious little one - She's beautiful and our thoughts and prayers are with you!!!
Posted By: Okie Dokie
Re: bear's back in hospital for tests - 09/11/06 08:33 PM
Becca, so sorry you did not get the news you were hoping for. I will continue to lift you and your family up in prayers.
Posted By: Cowboys Fan
Re: bear's back in hospital for tests - 09/11/06 08:33 PM
Continued prayers for your entire family.
Posted By: Bones
Re: bear's back in hospital for tests - 09/11/06 10:15 PM
Becca, it is so hard to read your words without tears coming to my eyes. Natalie, as well as you and your husband, have been through so much. Stay strong for your Bear and know that all of us here are praying like crazy for all of you. Take care!
Posted By: wavewatcher
Re: bear's back in hospital for tests - 09/11/06 10:23 PM
I'm sorry you did not get good news. Like LL, it's hard to read your posts without my eyes welling up. I can't imagine how difficult it is for you to post and update.
Prayers for Strength and love and good days are coming from Hawaii.
Posted By: Countess Kiwi
Re: bear's back in hospital for tests - 09/12/06 03:30 AM
Oh I am so sorry Becca. Continued prayers and extra (((hugs))) for everyone.
Posted By: Retired DQ
Re: bear's back in hospital for tests - 09/12/06 11:12 AM
Becca, you and your whole family are in my thoughts. Poor little Bear...
Posted By: TTC Queen
Re: bear's back in hospital for tests - 09/12/06 02:18 PM
You and your family are in my thoughts and prayers. I am so sorry that the news was so rotten.
Posted By: corkygirl
Re: bear's back in hospital for tests - 09/12/06 06:24 PM
Becca, I am so sorry the news was so bad and that your little Natalie is feeling so rotten. D***, I wish I had that magic wand now and with just the flip of a wrist, everything would be wonderful!! Just know that we are all praying for you all and feel our love and hugs.
Posted By: deppfan
Re: bear's back in hospital for tests - 09/12/06 06:49 PM
Dam*, I'm so sorry that the roller-coaster started uphill again.
I still would be happy to be tested if there is any chance I could help her Becca. Please keep me posted.
Posted By: Citrus
Re: bear's back in hospital for tests - 09/13/06 02:39 AM
Becca, Bear and family - You're in my thoughts and prayers, too.
Posted By: Beagles22
Re: bear's back in hospital for tests - 09/13/06 01:20 PM
Becca, you and your wonderful family are in my prayers. I am so very sorry to hear of this sad news, I find myself wiping tears from my eyes as I am reading. Poor little bear to go through so many setbacks, but just think what a strong woman she will grow to be. She is in my daily prayers along with both you and Jason. She is getting the very best care possible, keep your faith strong.
Posted By: someone else
Re: bear's back in hospital for tests - 09/13/06 03:47 PM
Gosh, I am sorry to hear this news. Please stay strong and lean on us anytime.
Posted By: pjs
Re: bear's back in hospital for tests - 09/13/06 04:18 PM
Prayers to you and your family. Keep strong. Thinking of you.
Posted By: Not2much$anymore
Re: bear's back in hospital for tests - 09/13/06 04:23 PM
I'm really sorry to hear the bad news. I really admire you for being so strong. Now that I have a little one I can not imagine what you are going through. Keep praying as I will for you and your little one.
WAIT! Everyone here in the office will be praying for you two!
Posted By: Just Suzy
Re: bear's back in hospital for tests - 09/13/06 04:52 PM
I'm very sorry to hear this. I'll continue to hold the bear and her family in my thoughts and prayers.
Stay strong and keep faith in God.
Posted By: P*Q
Re: bear's back in hospital for tests - 09/13/06 05:13 PM
So sorry to hear this Becca. Know that your all of us are here for you!
Posted By: QCL
Natalie update 9-14-06 - 09/14/06 09:12 PM
From her page:
Who is ready for a roller coaster ride?
So I heard back from the hospital today...and Natalie does not have narrowing at her bile ducts like was suspected. No, instead she has a central scar at the confluence of the ducts - much worse. Because this is higher than expected in the liver Dr. Superina said that she is "not a candidate for surgical revision" because it would be almost impossible for him to reach the scar.
Wheeeeee, isn't this ride fun?
However , here we go again on the ride... it may be worth another shot to try something new.
He still is not wanting to give up on the graft (my liver). This week she had NORMAL, that's right NORMAL, liver function tests. He, Dr. Superina, said that he feels that Dr. Donaldson (our favorite IR doctor) has some new tools and technology that will enable us to try and reach the scar - and perhaps place a metal stent of some sort. We were previously told that a stent was not a possibility - so I have lots of questions.
Is there a plan?
1. Keep the tube in - which is doing AWESOME by the way thanks to nurse Joan.
2. Come back towards the end of October for another cholangiogram squirt - that's what we just did Monday of this week.
3. See what Natalie's body does in the meantime.
So basically things are worse than we thought, but we are still holding onto some glimmer of hope that a new transplant is not needed.
and the roller coaster rolls to a stop for another day...All passengers please find the exits to your left...
Posted By: CRAatBOK
Re: Natalie update 9-14-06 - 09/15/06 12:35 AM
Becca, So sorry to hear about your recent loop-de-loop. I think about you and the Bear often. I wish there was something I could do to help, but know you two are in my thoughts.
Posted By: deppfan
Re: Natalie update 9-14-06 - 09/15/06 02:06 PM
Wow...I don't know how you do it Becca. Just know that we are holding you all up in our prayers. What an amazing family you are.
Posted By: Beagles22
Re: Natalie update 9-14-06 - 09/15/06 04:12 PM
Becca, I know you have angels watching you, bear and your medical staff. I have faith that He will see you through all of this.
Posted By: Truffle Royale
Re: Natalie update 9-14-06 - 09/15/06 04:16 PM
Dear Becca,
I really hate roller coasters. Any chance we could try the tilt-a-whirl next time? You know they don't go up and down nor do they spin quite as much if you sit still in the middle. Ok, so we'll sit REAL still in this car and pray REALLY HARD for a miracle. Come on, fellow BOLers, the prayer warriors are filling up this ride and not getting off till our Bear is better!
Do you think if we gave Natalie lots of veggies the roughage could make the scar disappear?
There, at least I made you smile. Lots and lots of prayers and a big virtual ((hug)) to you and Bear.
TR
Posted By: LoisLane
Re: Natalie update 9-14-06 - 09/15/06 07:53 PM
I'm sending my good thoughts and prayers out to this very special young lady
Posted By: P*Q
Re: Natalie update 9-14-06 - 09/15/06 07:59 PM
Always praying for and thinking of you! {{{{hugs}}}}
Posted By: wavewatcher
Re: Natalie update 9-14-06 - 09/15/06 08:19 PM
Supermom (and dad) we are still praying for you. Normal is a good thing - keep it coming.
Posted By: Carly Girl
Re: Natalie update 9-14-06 - 09/15/06 09:24 PM
Bless your little one MOPNB! Lifting you all up in prayers.
Lots of thoughts and prayers for the Miss Natalie family coming from Oklahoma.
Posted By: tahdah
Re: Natalie update 9-14-06 - 09/16/06 01:04 AM
Thank you for taking time to update. As always prayers to you. I don't know how you do this. I was hospitalized early this week and thought of you. I was only in for a couple of days but I hated it. I just can't imagine how hard it is for the Bear and your family to spend at a hospital. God Bless all of you.
Posted By: corkygirl
Re: Natalie update 9-14-06 - 09/18/06 01:39 PM
Normal liver function, that is wonderful to hear!! It sounds like you have really great doctors and no one is giving up, what a blessing that is for you. Your little one continues to be in my prayers, and her picture from the wedding up on the wall above my desk.
Posted By: E.E.G.B
Re: Natalie update 9-14-06 - 09/19/06 05:36 PM
Becca, thinking of y'all!
Posted By: QCL
Re: Natalie update 9-14-06 - 09/19/06 09:47 PM
Thanks all!!!
We are scheduled to take a look at the situation again October 23. So until then, I am back to the denial game
while enjoying my adorable "big girl."
Her latest cute quote: When I called her my baby girl, I got "
I not a baby, mommy. I a big girl. I a big girl Nannanie!"
Posted By: thomasj
Re: Natalie update 9-14-06 - 09/20/06 12:56 PM
Prayers for you guys as always Becca. Enjoy that little one, sounds like she is growing up fast!
A quote from my son when I called him Honey the other day "My name not Honey, it's Luke!!!"
Posted By: QCL
Natalie update 10-19-06 - 10/19/06 02:31 PM
This is hard...
This is a hard update to write. I've been sitting on this news for 2 days now, not saying anything. I hate taking you all on our roller coaster, really I do.
I mentioned in my last update that when we got home Tuesday I called Joan, Natalie's transplant coordinator. What I did not mention to you all was part of the conversation.
Dr. Superina (who, Natalie will tell you, "Has a hurt foot" - he just had surgery on his Achilles tendon) took a look at last week's IR study and the study from this Tuesday. Dr. Superina, the man that didn't want to give up on this liver. Dr. Superina is ready to re-transplant.
And I think that I am too.
A shunt would be too hard.
After talking to Dr. Kim (one of the IR doctors) I learned that these mush metal shunts are typically used for cancer patients to improve quality of life when there are few options left. The shunts usually fail within 6 months. Since the liver would grow around the shunt, if there was a problem with it, surgery of the liver would be necessary to remove it.
And the study from this week is showing that her bile ducts are doing very little draining on their own anymore, anyway.
From what we know now, she will most likely be re-activated on the list sometime next week.
And yet, Natalie is still reminding me that we need to "color a card for Dr. Superina. To make his foot feel better." God, I love this kid.
__________________
www.nataliebear.com
Posted By: Okie Dokie
Re: Natalie update 10-19-06 - 10/19/06 02:50 PM
I'm so sorry that things are not going the way we all hoped they would. I will continue to pray for you and your little bear that the new transplant will be all that you need it to be. She is such a sweet girl and the stories you tell of her really brighten my day.
Posted By: pjs
Re: Natalie update 10-19-06 - 10/19/06 02:47 PM
Praying here and hoping things take a turn for the better.
Posted By: cheekEE
Re: Natalie update 10-19-06 - 10/19/06 02:58 PM
Wow...I am so sorry to hear this news. I don't know a lot about liver transplants, but I hope you find what you need quickly and she feels better quickly.
Posted By: Skittles
Re: Natalie update 10-19-06 - 10/19/06 02:53 PM
This is devastating news for all of us and I can't phathom the feelings you have right now. I am praying constantly for your Little Bear and her parents.
Posted By: Cowboys Fan
Re: Natalie update 10-19-06 - 10/19/06 03:13 PM
Your family is always in my prayers.
Posted By: Nanwa
Re: Natalie update 10-19-06 - 10/19/06 03:27 PM
Here too! I think of you often. Prayers for the bear.
Posted By: Busy Bee, CRCM
Re: Natalie update 10-19-06 - 10/19/06 03:52 PM
So frustrating! You all will be in my prayers!
Posted By: TTC Queen
Re: Natalie update 10-19-06 - 10/19/06 03:57 PM
Well
D@mn and Double
D@mn! I am so sorry for your news. I wish I could do something--even throwing something would be good, but I am at work. (What I am doing is crying out of frustration as I type this.) I am truly amazed at Natalie's personality resilience. I will continue to keep you all in my prayers.
Posted By: doodles
Re: Natalie update 10-19-06 - 10/19/06 04:02 PM
Continued prayers from PA. - "Because of the Lord's great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness." Lamentations 3:22-23. May you feel God's compassion fresh each morning so that you do not feel consumed by the burden that you have been carrying.
Posted By: *BUSTER*
Re: Natalie update 10-19-06 - 10/19/06 04:28 PM
MOPN, you arn't the only one who loves the Bear, everyone who has read this thread has been touched by her in some way.
Posted By: hmdagal
Re: Natalie update 10-19-06 - 10/19/06 04:30 PM
I'm so sorry for this latest bad news, and hope it won't be long before the next transplant is behind you.
Posted By: Copper Top
Re: Natalie update 10-19-06 - 10/19/06 04:44 PM
I am a new poster to BOL, and still don't do that much. However, I am a long time lurker, and have kept up on Natalie. My heart and prayers go out to you and your family. I have tears in my eyes from reading your last post and Natalie thinking of her dr with a hurt foot. That not only says a lot about the kind of child Natalie is, but also speaks volumes about you mom. You are an example to all of us on how to raise a child right.
Posted By: Deena
Re: Natalie update 10-19-06 - 10/19/06 05:10 PM
Oh, Becca, I'm so very sorry to hear this latest news. I will continue to keep Natalie and your family in my prayers. I know your faith is strong, so just keep leaning on Him.
Posted By: Reg Gal
Re: Natalie update 10-19-06 - 10/19/06 05:15 PM
Darn! Darn! Darn! Please know my prayers are with you. I get chills every time I read your posts. What an incrediblly special family you are. God bless.
Posted By: Truffle Royale
Re: Natalie update 10-19-06 - 10/19/06 05:48 PM
Dear Becca,
Sitting at my desk is not the best place to cry but I am. I cannot imagine what you are going through.
Please don't worry about us and roller coasters. As is often pointed out on these threads, no one is forcing us to read or post here. Over the last 47 pages of posts and months of time we've all come to love Natalie and made her our own Bear too. We're invested because we want to be. You and your daughter have given us all so much through your examples of love and strength and faith.
My prayers continue.
((hugs))
TR
Posted By: Ops
Re: Natalie update 10-19-06 - 10/19/06 07:11 PM
Like so many others, I don't post too terribly often on here.. I do always keep up with Natalie Bear.. always anxious to read that next update. She's such an amazing little girl (with amazing parents). In my eyes, all kids are miracles, but God reserves some of his most special miracles for very special people. What an honor to have one of those miracles.
Coming from the aunt of a little girl with a donor pulminary valve (who is about to face yet another heart cath & possibly a stint), I know how nauseating reports like that can be. You have so many people who love you, and I know how comforting it is/must be to know that God is on your side. I don't have children yet, so I can't pretend to know what it feels like from a mother's perspective... What I can do is constantly pray for Natalie Bear, you, your hubby, & your family.
Posted By: Bones
Re: Natalie update 10-19-06 - 10/19/06 07:48 PM
Quote:
MOPN, you arn't the only one who loves the Bear, everyone who has read this thread has been touched by her in some way.
So true! I'm so sad to hear the latest news! My heart goes out to you and the Bear. You are all in my prayers!
Posted By: Beagles22
Re: Natalie update 10-19-06 - 10/19/06 08:12 PM
Becca, I am so very sorry for this setback. My heart is breaking for all of you. My prayers are all that I can offer, adding them to the rest. Let them lift you and your spirit along with Natalie.
Posted By: P*Q
Re: Natalie update 10-19-06 - 10/19/06 08:17 PM
Oh Becca, I'm so sad to hear the news isn't the best. We are ALWAYS here for you and praying always.
Posted By: Countess Kiwi
Re: Natalie update 10-19-06 - 10/19/06 08:18 PM
Like PQ stated, we are always here for you and have never stopped praying for "our" little Bear and her family.
Posted By: Just Suzy
Re: Natalie update 10-19-06 - 10/19/06 09:53 PM
I'm very sorry to hear this. I hope and pray that everything will turn out fine. Keep your strength up and your faith strong. Sent with love for your small one.
Posted By: CRAatBOK
Re: Natalie update 10-19-06 - 10/19/06 10:49 PM
Becca, while this may not be the best news, at least they have finally made a decision and can get on with it. We just need to sell lots of cookbooks. Go help the Bear color the get well picture and enjoy you beautiful daughter. With all of us praying and sending positive thoughts your way you don't have anything to worry about.
Posted By: MISS VIDA BOEM
Re: Natalie update 10-19-06 - 10/19/06 11:50 PM
Like KC Cane Corsos and Ops, I too don't post very often but do check-in frequently to see how Natalie is doing. I think that Truffle Royal said it the best; "we are all invested". We all want to give all the support and prayer possible for Natalie and her wonderful parents. Thank-you so much for giving us updates, even the hard ones, and sharing your most heartfelt thoughts and feelings.
Prayers and hugs are coming to you from Ventura, California!
Posted By: wavewatcher
Re: Natalie update 10-19-06 - 10/20/06 12:41 AM
You folks are in my prayers. Like KC said, at least they made a decision, you can come to terms with the decision and begin the coping/healing process. Hoping things can only get better...
Prayers from Oklahoma for the whole family. The BOL Prayer Family is powerful and like KC said "sending positive thoughts your way".
Posted By: tahdah
Re: Natalie update 10-19-06 - 10/20/06 01:09 AM
As with all, my prayers are with you. Nothing more left to say except that I will pray for strength and the best outcome for all three of you.
Posted By: CHLOBURT
Re: Natalie update 10-19-06 - 10/20/06 11:46 AM
Like some of the others I don't post often but I do keep up with "the very special bear". I'm so sorry to her this news but will continue to pray for Natalie and your family.
Posted By: Angel Eyes
Re: Natalie update 10-19-06 - 10/20/06 02:30 PM
I don't know anything to say that hasn't already been said. I am so sorry to hear this news. Hang in there and give that little angel a hug from all of us at BOL that care so much for a little girl that we have never met.
Posted By: E.E.G.B
Re: Natalie update 10-19-06 - 10/20/06 02:51 PM
Oh Becca, I'm so sorry. I know this isn't what you wanted, but maybe it's for the best - the shunt doesn't sound like a viable option at this point. I'm just so sorry y'all have to even think about this.
Posted By: OnTheEdge
Re: Natalie update 10-19-06 - 10/20/06 04:37 PM
Becca, you, your family and especially your precious Natalie Bear are in my prayers.
Posted By: corkygirl
Re: Natalie update 10-19-06 - 10/20/06 05:24 PM
Oh Becca I am so sorry to read this news. Please know that you and your precious little one are in my prayers and a copy of the picture of her in the dress for the wedding in on the board above my computer at work, so I can send God short little "prayerlets".
Posted By: Citrus
Re: Natalie update 10-19-06 - 10/21/06 03:35 AM
Becca, I agree with all of the above posts. Little Bear is in my heart, as well - and I will keep her in my prayers for a perfect donor, perfect transplant, and some amazing healing.
Can you feel the love and hugs??
Hope so!
Posted By: Bengals Fan
Re: Natalie update 10-19-06 - 10/24/06 03:05 PM
Becca,
Like so many others, my prayers for this perfect little child will continue. No matter what happens down the road, God has used your family and your little girl to show others what love is all about. Her reward is waiting for her, of this I am sure. I pray it is waiting just around the corner with a good match and a long happy life!
Posted By: HRH Dawnie
Re: Natalie update 10-19-06 - 10/25/06 04:19 PM
Oh Becca, I hated to read that news.
I don't get a chance to post often, but I hope you know that you are my hero...and little Bear is my heroette
You hold a special place in my prayers...and while I will always have room for your family there, I'd love to hear someday that we can quit praying for you, and start planning on your visit to see the polar bears with our darlings.
Keep that strong heart and head working. We'll get through this with you!!!!
Posted By: QCL
Re: Make a Wish - 10/25/06 05:54 PM
Have you ever heard, "A dream is a wish your heart makes?"
Well Natalie's dream of seeing "Dolphins, and Whales, and Mickey Mouse, and oh, yeah, Minnie too," is about to come true!
On Monday November 6th Make a Wish will be sending a limo to pick Natalie (and her parents) up and take them to O'Hare Airport, where they will board a plane for Orlando!! This is one amazing organization. And the smile that comes to my child's face when we talk about her "dream", well it causes my heart to swell.
We will go for 6 days and Stay at
Give Kids the World. I honestly believe that the founders of this place are heaven sent. We will get 3 days of Disney Park Hopper Passes, 2 days to Universal Studios, and 1 Day to Sea World.
(And we're going to meet a liver buddy Aiden - I write about him sometimes on my website.) Natalie has a new pink suitcase that she is "helping" to pack.
I just wanted to give you all some uplifting news, about us, in the midst of all of this re-listing, re-transplant stuff.
Posted By: Skittles
Re: Make a Wish - 10/25/06 06:12 PM
This is just amazing! I am very happy that Natalie's dream is coming true.
This time it's happy tears at work!
Thanks for letting us know.
Looking forward to LOTS of new pictures on the Bear's website.
Enjoy ~ you REALLY deserve it!!!
Posted By: *BUSTER*
Re: Make a Wish - 10/25/06 06:21 PM
That's great! Hope yall enjoy it!
Posted By: Snowqueen
Re: Make a Wish - 10/25/06 06:35 PM
You are going to have such a wonderful time in Orlando. One of my coworkers and his family went a few years ago through make-a-wish. Natalie will get to meet all her favorite characters (the Princesses, of course) up close and have her picture took. The folks at Disney will treat your family like royalty. They also went to Sea World and loved it. Have a great time!!
P.S. They stayed in a condo area that was only for make-a-wish families and if I remember there were activities for the families too. BBQ's, swimming, etc...
I think Natalie needs to bring her pink Minnie Mouse ears along
Posted By: wavewatcher
Re: Make a Wish - 10/25/06 06:56 PM
I'm so happy for you. Have a really good time. You folks deserve a break and some really happy memories outside of your hometown.
Posted By: Mrs. Rizzo
Re: Make a Wish - 10/25/06 07:38 PM
That's amazing to hear, MOPNB! I hope you all have a GREAT time and have make wonderful memories!!! Best wishes for a safe trip!!
Posted By: RVFlyboy
Re: Make a Wish - 10/25/06 08:58 PM
I'm so happy that her Disney wish is coming true. I wonder if DeppFan had any input into this or did it all happen before she got on board with Make-a-Wish. In either case, may your visit to the land of Mickey Mouse be filled with wonder and awe.
Posted By: CRAatBOK
Re: Make a Wish - 10/25/06 09:05 PM
I can't wait to see the pictures from the trip.
Posted By: corkygirl
Re: Make a Wish - 10/25/06 09:15 PM
Oh Becca, how absolutely awesome!!!! I'm sure all three of you will have a wonderful time in the happy land of Mickey, Dolphins etc. I have never heard of Give Kids the World before, what a wonderful place that must be.
Posted By: tahdah
Re: Make a Wish - 10/25/06 11:37 PM
I'm crying tears of joy. We took our son after his hero, his papa died. He was all of newly turned 5 and he said that he "much preferred Epcot to Disney", cracked us up. And since then he really has never enjoyed amusememt (rides) parks. We walked into the Majic Kingdom thinking he would be mesmerized and it was ho hum to him, little stinker. Just never know with a kid. Hope Natalie finds it "magical".
Disney was great as a child, but there is absolutely nothing like seeing it for the first time with your own little one. To see the sheer magic in their eyes as they see the character parade for the first time, or the castle for the first time....Ah, it makes me smile to think about it. My kiddo was 5 the first time we went and I cried as I watched him!
Have a wonderful time and try to forget about all your worries at home. I can only imagine that Miss NatalieBear will absolutely fall in love with Disney!!
Posted By: HRH Dawnie
Re: Make a Wish - 10/26/06 01:39 AM
Becca you made me cry tears of joy
You all have SOOOOO MUCH FUN!!! You hear me!!!! (Obey...I'm practicing my mother skills)
Hug Miss Bear for me will you? She's been on my mind a lot lately.
Posted By: Citrus
Re: Make a Wish - 10/26/06 08:06 AM
(I've got tears in my eyes, too!)
Wonderful news! Disney parks are the best! You will have soooo much fun! Like everyone else, I can't wait to see the photos!!
Posted By: TTC Queen
Re: Make a Wish - 10/26/06 02:44 PM
What wonderful news! I can't wait to "hear" all about it.
Posted By: QCL
Re: Make a Wish - 10/26/06 03:24 PM
Quote:
I'm so happy that her Disney wish is coming true. I wonder if DeppFan had any input into this or did it all happen before she got on board with Make-a-Wish. In either case, may your visit to the land of Mickey Mouse be filled with wonder and awe.
It happened just before she got the job...but now they are an even better organization
Posted By: Okie Dokie
Re: Make a Wish - 10/26/06 03:25 PM
I'm so happy for you guys. I know the Bear is going to have so much fun. I can't wait to see pictures!
Posted By: E.E.G.B
Re: Make a Wish - 10/26/06 03:47 PM
The only thing that could possibly make it better is if Elena could be there to personally escort you around!! I hope y'all have a fabulous time and I can't wait to see pix. (Warning - Disney is notorious for being Gymbo-ridden.)
Posted By: Patsy Cline
Re: Make a Wish - 10/26/06 03:52 PM
Becca - I am so happy that you all get this fabulous trip! Natalie and you and your husband deserve it!
Still in my prayers!
Have a wonderful time and I will wait patiently (ha ha) to see some pictures of "our" little girl...and her parents too, enjoying the fun.
Posted By: Bengals Fan
Re: Make a Wish - 10/27/06 01:20 PM
Absolutely! HAVE FUN! Post photos!
I'm picturing that commercial on T.V. where everyone in the house is "too excited to sleep". Can't wait for the pictures. Enjoy!
Posted By: Truffle Royale
Natalie's Nummies cookbook - 11/02/06 03:28 PM
Finally we have a chance to actually DO something for our Bear!!! (and just in time for holiday gift giving too)
Check out
Natalie's website Scroll down past the picture of Natalie at the pumpkin patch and
click on the cookbook cover where it says Pay Pal to
ORDER A COPY OF NATALIE'S NUMMIES Over 500 recipes have been contributed by family and friends of Mom of Princess Natalie Bear...including some of your fellow BOLers.
I've sent the link to everyone in my mailbox too in the hopes of padding Natalie's coffers as she faces her second transplant.
Thanks to you all!
Edited to correct website link. It should work now! Thanks again. TR
Posted By: Skittles
Re: Please order a cookbook - 11/02/06 03:32 PM
Great post, Truff!
Posted By: Truffle Royale
Natalie's Nummies cookbook - 11/02/06 10:15 PM
Wanted to make sure you all saw this so I'm posting to change how the title appears on the main index
Posted By: Master_shakE
Re: Natalie's Nummies cookbook - 11/03/06 03:07 PM
I looked on the website but the link isn't coming up to order one (maybe it is just my computer??) Can I please have it. Thanks!
Posted By: Countess Kiwi
Re: Natalie's Nummies cookbook - 11/03/06 03:14 PM
Cookbook If this doesn't work, click on the paypal box on the bottom of the cover of the book on the website.
Posted By: Master_shakE
Re: Natalie's Nummies cookbook - 11/03/06 03:57 PM
I just got the pay pal main website. Am I doing something wrong?
Posted By: Countess Kiwi
Re: Natalie's Nummies cookbook - 11/03/06 04:17 PM
When you click from her website you will be in paypal, but there will be a line item where you can enter how many of Nataliebear's Nummies you want. I think with my link above, you need to sign in to your paypal account first. Sorry I am not much help.
Posted By: TTC Queen
Re: Natalie's Nummies cookbook - 11/03/06 05:02 PM
Did you click on the picture of the cookbook? That is where I clicked to order.
Posted By: Busy Bee, CRCM
Re: Natalie's Nummies cookbook - 11/03/06 10:35 PM
Since it's Friday and Miss Natalie's Make A Wish trip is only three days away, I wanted to wish you all a fabulous trip. Have a wonderful, wonderful time! I'll be thinkin' about ya and prayin' for ya while your gone!!
Posted By: deppfan
Re: Natalie's Nummies cookbook - 11/05/06 04:55 AM
I wish that I had been able to be personally involved with her wish. I am hoping to get lots of photos to forward on to the National Office. I'm going to meet David Williams, the President and CEO in December, and I would love to hand him the pictures and tell him just how much joy this particular Wish brought to Natalie and family. I know she will have a blast!
Posted By: Truffle Royale
Re: Natalie's Nummies cookbook - 11/07/06 07:45 PM
If you haven't ordered your cookbook(s) yet, please do! I'd love to have Becca's mailbox overflowing with cookbook orders when they get back from Orlando. It'll give them one less thing to fret about as Natalie faces her second transplant...hopefully soon.
Posted By: Bengals Fan
Re: Natalie's Nummies cookbook - 11/08/06 07:16 PM
My make a wish is to see pictures of the little bear with a grin from ear to ear wearing her poppa and momma OUT!
Hope everyone is having a great time on this trip!
Posted By: Patsy Cline
Re: Natalie's Nummies cookbook - 11/13/06 07:49 PM
An update on Natalie's website since Disney and a few "teaser" picutres!
Home of Nataliebear
Posted By: Skittles
Re: Natalie's Nummies cookbook - 11/13/06 08:01 PM
OK - I had tears in my eyes reading the journal entry (actually they are still there). What beautiful pictures!!
Posted By: RR Jen
Re: Natalie's Nummies cookbook - 11/13/06 08:12 PM
They look like they're having a great time!
Posted By: Truffle Royale
Re: Natalie's Nummies cookbook - 11/13/06 10:46 PM
Is she trying to catch snowflakes? Whatever it is, I've got tears...I've got goosebumps...and I'm smiling from ear to ear.
And to think our own deppfan is now part of the wonderful organization that made this happen for the Bear!
What a bright ray of sunshine on an otherwise dreary Monday.
Posted By: corkygirl
Re: Natalie's Nummies cookbook - 11/14/06 02:56 PM
What wonderful "teaser" pictures and journal entry. This lady needed to see this positive entry today!!!
Posted By: deppfan
Re: Natalie's Nummies cookbook - 11/15/06 12:44 AM
Oh Becca...I have happy tears! Please send me a photo CD from your trip so I can take it to National! I will personally thank David Williams for you. She is such a beautiful little girl, and I think you are so right about the timing of the trip.
Posted By: Citrus
Re: Natalie's Nummies cookbook - 11/15/06 06:14 AM
Quote:
OK - I had tears in my eyes reading the journal entry (actually they are still there). What beautiful pictures!!
Me, too!
Quote:
Whatever it is, I've got tears...I've got goosebumps...and I'm smiling from ear to ear.
Me, too!
Three cheers for Natalie!!! ... Hooray! Hooray! Hooray!
Posted By: QCL
Natalie's Wish Trip - 11/15/06 02:48 PM
Thanks all.
You are so wonderful.
If anyone want's to see her MAW pictures, PM me your email and I'll send you the link to the Kodak gallery.
Posted By: FlBankerGal
Re: Natalie's Wish Trip - 11/17/06 06:13 PM
Love the Painter video! Just ordered my book - can't wait it get it. Your faith and courage inspires us all!
Posted By: *BUSTER*
Re: Natalie's Wish Trip - 11/18/06 08:54 PM
Becca, thanks so much for the link, I had tears in my eyes going through those pictures last night.
Posted By: QCL
Natalie update 12-1-06 - 12/01/06 02:39 PM
Clinic update...
We had clinic yesterday and all was well.
Natalie's labs look fantastic!! Just beautiful. It is hard to believe that with them looking this good, that we are re-listed for another transplant.
But she can't live forever with the tube in. She needs to bathe like all the other kids, and be able to swim. She needs to learn to pull up and down her pants, without worrying about yanking the tube out of place, or worse out completely.
She needs to not have a continuous open sore on her tummy.
And so, even with perfect liver labs, she needs a new liver. A liver that will drain bile on its own, that will create healthy non-clumpy bile. A liver that will let her live.
This liver was perfect. Then her hepatic artery clotted, damaging part of it. It can't be helped.
But still, her team doesn't want to see her for 2 months in clinic!! Which really does mean that the tube is doing wonderful things, again. We will go back probably before then for a tube squirt - just to make sure that it is still in place. I don't want to jinx anything...but for right now...things are good.
And 7-12 inches of "snowy" is falling right now!!! I'll post pictures later on her website...
Posted By: Skittles
Re: Natalie update 12-1-06 - 12/01/06 03:06 PM
Becca - thanks for the update and I'm glad everything sounds good. I am constantly praying that you find the right liver for Natalie.
Posted By: Okie Dokie
Re: Natalie update 12-1-06 - 12/01/06 03:47 PM
I'm glad that news was good. I will continue to pray for you and your beautiful bear!
Posted By: Truffle Royale
Re: Natalie update 12-1-06 - 12/01/06 04:27 PM
What a wonderful note to dive into the holiday season on!
I, for one, was thrilled to hear about that group of six patients and their donors that were able to make the best matches by switching who got the transplants from whom. (I tried to find the story to link it but couldn't. Hopefully you all remember this from the news a week or two ago.) This has got to make a new liver for the Bear, and everyone else on transplant lists, seem just that much more accessible.
Happy Holidays to the Bear and her mommy and daddy.
And thanks to all my fellow BOLers for helping make their cookbook a sell-out!
Posted By: Beagles22
Re: Natalie update 12-1-06 - 12/01/06 04:36 PM
WONDERFUL!! Happy holidays are among us, along with our angels. I am so happy to hear this great news, all of you enjoy the holiday at home!!
Posted By: corkygirl
Re: Natalie update 12-1-06 - 12/01/06 11:15 PM
YEA!!!!! Happy Holidays without a clinic visit, what more could Santa bring??? Enjoy the snow, I will once I get home tonight and hopefully the drive home will be better than the drive to work!!
Posted By: Cowboys Fan
Re: Natalie update 12-1-06 - 12/01/06 11:29 PM
What a nice way to end the week- Go Natalie!!
Posted By: CRAatBOK
Re: Natalie update 12-1-06 - 12/02/06 12:36 AM
Guess that trip to Disney Land really did do her good. Congrats on the great news.
Posted By: wavewatcher
Re: Natalie update 12-1-06 - 12/02/06 02:45 AM
Such wonderful news. It's a great way to start the holiday season. All the blessings.
Posted By: QCL
No update...but new pictures - 12/29/06 03:19 PM
For those of you that check in on us from time to time, I have posted new Christmas pictures on the bear's webpage.
Click on my user profile to see the webpage.
Posted By: Skittles
Re: No update...but new pictures - 12/29/06 03:25 PM
Too cute. Thanks for posting!
Posted By: Beagles22
Re: No update...but new pictures - 12/29/06 03:34 PM
Absolutely adorable, what a treasure you have in her.
Posted By: QCL
No update...but new prayer request - 02/07/07 02:15 AM
Before you worry...all is fine with Natalie. We are approaching her 2nd re-birthday (the transplant 2nd anniversary) this Friday and still on the transplant list.
Now, on to the prayer request:
Many of you may rememgber me asking for prayers for my sister Mandy and her husband Kyle. Both went to Iraq with the 1644th. They lost a dear friend on the same day as Natalie's transplant. Well, Mandy and Kyle's home, the one they have been working tirelessly to remodel for their growing family (10.5 month old Greta and the new little one – who is scheduled to arrive in March), well their home is going up in flames!!!
At this hour, we are unsure of the damage. Mandy is worried about her and Kyle's Army uniforms and medals and the accompanying paperwork, as well as Greta and the new baby’s toys and clothes. The kitchen and back porch and bathroom sustained the most damage (the kitchen door melted!) and only Kyle was at the house and he is fine (Mandy and Greta were at my parents).
I guess the reason that I am sending this email is to ask for any help that you can offer in getting them back on their feet, again. Coming back from Iraq has been hard enough, and now this...If you want to be updated, please let me know.
God Bless,
-Becca
http://www.nataliebear.com
Posted By: Deena
Re: No update...but new prayer request - 02/07/07 03:04 PM
Oh, Becca, how awful. Many thoughts and prayers for your sister and her family. And, of course we want to be updated. Please let us know if there is anything that we can do to help.
Posted By: corkygirl
Re: No update...but new prayer request - 02/07/07 04:23 PM
Becca, just let us know what we can do to help and we will. And please keep us updated, I can't imagine how difficult this is and will be for them.
Posted By: Truffle Royale
Re: No update...but new prayer request - 02/07/07 06:31 PM
What size is Greta? Do we know the new baby's sex yet? Clothes and toys and kitchen supplies...we can do that, can't we BOLers? I've got a bunch of Fisher Price toys I was about to donate. Would your sister like them? Give us an address, Becca, and get ready to field some mail. If nothing else, I'm sure some of us would send a check. This is truly supporting our military at home.
Anything else we could send them?
Posted By: someone else
Re: No update...but new prayer request - 02/07/07 06:50 PM
Wow...when it rains it pours! I am so sorry to hear about this. Please let us know what we can do to help.
Posted By: QCL
Re: No update...but new prayer request - 02/07/07 06:58 PM
Greta is 10.5 months old and wears 9-12 months right now. She still fits into 6-9 months, but most of the hand me downs were lost. They also lost the car seat for Luke.
Most of the kitchen stuff can be turned into the Insurance - since most of it was from the wedding registry my sister has model numbers. But it's a total loss. For those of you that want to send something, anything, PM me and I'll send you an address.
Posted By: E.E.G.B
Re: No update...but new prayer request - 02/07/07 07:16 PM
I'm going to start packing a box tonight.
Posted By: corkygirl
Re: No update...but new prayer request - 02/07/07 07:57 PM
If ever there was a good reason to hit the outlet mall and shop, this is it. Baby clothes, etc on it's way shortly.
Posted By: Deena
Re: No update...but new prayer request - 02/07/07 09:26 PM
What about clothes for your sister and her husband and for Luke? What about toys?
Posted By: Truffle Royale
Re: No update...but new prayer request - 02/07/07 09:38 PM
I take it Luke will be born in March? So you need an infant car seat? The one we have is in use right now (Carly Rose is only 8 weeks old tomorrow) but maybe someone else is done with their's?
So first year clothes for a boy and 2nd year for a girl.
Toys for both. Parents need what?
Bless your family for rallying around and reaching out for help. Thank you for giving us the opportunity to pay it forward.
Posted By: P*Q
Re: No update...but new prayer request - 02/07/07 10:00 PM
So sorry for your family Becca. I second Truff's question, Luke, a boy, is due next month? I have a TON of boys clothes since I have 2! I can check on the infant car seat. I believe we do have one in awesome shape, never been in an accident, along with 2 bases (let me check with my sister first, she's due in July but she already has one kid, don't think she'll need it.) I just used it for Evan a year ago.Got tons of baby stuff all around, toys, swing, etc. You can have it all but not sure how to get it all to you. Let me know Becca.
Posted By: CRAatBOK
Re: No update...but new prayer request - 02/07/07 11:44 PM
I am so sorry to hear this Becca. I sent a message to my daughter to see if the Bees have anythings they can send your way.
She is so lucky no one was hurt and she has her wonderful family for support.
Posted By: HRH Dawnie
Re: No update...but new prayer request - 02/08/07 10:54 PM
Let me know on the car seat. We have one that Jesse has FINALLY grown out of (he's not 20lbs yet but he's too tall for it to be safe). I was going to go out and shop for a new one tomorrow or this weekend. It's a Graco, a year ago it was their best. I was going to send it to my sister's son, who is expecting a little guy in a few months (they don't have much so I've already sent most of our little guy's cloths) but if Luke needs it, I'll send it to ya'll instead. Just let me know if PQ is giving you one or if you want mine. Oh and the one we have is one of the few rated for babies under 5lbs (don't try for that mind you) and up to the standard 20lbs. I'd just want to wash up the linings and stuff, but could get it out next week when I'm mailing back sinks and stuff...hey wait, do they need a kitchen sink? :p I really do have extras...
OK Back to the kiddo's...I do have some jammies and things that I haven't sent my sister either. If you PM an address I'll be able to fill a box with some things that might be helpful. I know there's a couple snow suits sitting around here somewhere...oh and a couple bath's too if I remember right (we didn't return the duplicates so I have tripple of several things). Anyhoo, I'm rambling...pop me out an address and I'll put together a box that might help out with the little guy.
Posted By: QCL
Happy Re-birthday Princess Nataliebear - 02/09/07 03:51 PM
What were you doing 2 years ago?
I was laying in the hospital. So was Natalie. I was about to have a big hunk of liver taken out of me and given to my daughter.
I have written a pretty good summary of it all, but you'll have to go to the post written on Thursday, February 09, 2006 07:52 AM CST to read it.
For a look back at this year, go to last night's post at http://www.nataliebear.com. Also be sure to check out the new pics!
Thank you all for being in this with us over the past 2+ years. WE love you.
Posted By: Master_shakE
Re: Happy Re-birthday Princess Nataliebear - 02/09/07 04:23 PM
Happy Re-Birthday! Yipppeee
Posted By: Truffle Royale
Re: Happy Re-birthday Princess Nataliebear - 02/09/07 04:27 PM
Our Bear looks ssssoooo grown up in that first picture on the website! Happy rebirthday to you both.
Posted By: Okie Dokie
Re: Happy Re-birthday Princess Nataliebear - 02/09/07 05:32 PM
Happy Re-Birthday Natalie!!!!!
Posted By: Lip Gloss
Re: Happy Re-birthday Princess Nataliebear - 02/09/07 10:15 PM
Best wishes!!
Posted By: Quality Seeker
Re: Keep us in your prayers - 02/09/07 10:45 PM
My prayers are with Natalie and with you and the rest of the family. Prayers from Florida to heaven and back to Natalie.
Posted By: corkygirl
Re: Keep us in your prayers - 02/10/07 07:00 PM
Oh Becca, thanks for sharing your pictures and you little one with us. I just love the pictures, what a beautiful little girl and yes, she is growing up!! Prayers for you guys, every day!!
Posted By: CRAatBOK
Re: Keep us in your prayers - 02/13/07 04:33 AM
I can't believe it has been two years. I was just thinking, when you are my age, you sure can use some new parts. You know, ones that do don't creak, crack and lock up when you get up.
Posted By: Busy Bee, CRCM
Re: Keep us in your prayers - 02/13/07 04:09 PM
Becca - The latest pictures of Natalie are absolutely wonderful! She is a beautiful little girl and growing more so every day! I'm continuing prayers for the situation at hand and I know that God will provide and meet your needs in His time.
Posted By: QCL
In a commercial!!! - 03/07/07 04:50 PM
For those of you in Illinois, you may remember the "Life Goes On" organ donor commercials put out by Jessie White's office.
Well, Natalie and I (and a handful of other people connected to organ donation) will be filming a commercial this Saturday for this year's campaign. The song in the commercial is The Who's Join Together.
Here is a link to the production company's website. If you click on the links on the right hand side of the page you can see past year's commercials. Ian is my favorite!
http://www.vivalundinproductions.com/spots.phpThey always air heavily throughout IL in the month of April
(National Organ Donor month)...so I'll let you all know...
Posted By: B_F
Re: In a commercial!!! - 03/07/07 07:12 PM
Natalie is perfect for commercials. She's WAY too cute for words!
Posted By: Countess Kiwi
Re: In a commercial!!! - 03/07/07 07:15 PM
That is so awesome. I watched Ian and it brought tears to my eyes...a hero without the costume. Make sure to let us know when we can view "our" superstar.
Posted By: corkygirl
Re: In a commercial!!! - 03/11/07 01:54 PM
A a fellow 'Illinoian" - that's probably not a word but who cares - I'll watch for the commercial for sure!!!!
Posted By: QCL
Re: In a commercial!!! - 03/12/07 01:36 PM
Well, we never did get to go...see my latest at
http://www.nataliebear.com.
Posted By: someone else
Re: In a commercial!!! - 03/12/07 01:58 PM
Aw man...what a bummer! I sure hope she is feeling better this morning. What was it? Some sort of pink eye infection?
Posted By: QCL
Re: In a commercial!!! - 03/15/07 04:52 PM
Well I am posting this from the hospital.
Go to
http://www.nataliebear.com for more...
Posted By: Deena
Re: In a commercial!!! - 03/15/07 06:47 PM
Becca, I hope and pray that it is just a "run-of-the-mill" virus. Hang in there!
Posted By: E.E.G.B
Re: In a commercial!!! - 03/15/07 07:37 PM
It sounds kind of like the bug the Junebug had in November - if it is, you should be just about at the end of it. Hope she is doing better and y'all can go home soon.
Posted By: Pale Rider
Re: In a commercial!!! - 03/16/07 03:40 PM
how odd, my kidney transplant son came down with a high fever yesterday, and he was doing so good
God bless your family
Posted By: QCL
Re: In a commercial!!! - 03/16/07 06:37 PM
We're still here in the hospital. Still running tests. The postive thing is that we know there in NO problem with her liver. The not so positive thing is that mommy got food poisoning last night - stupid chicken sandwich.
Posted By: Countess Kiwi
Re: In a commercial!!! - 03/16/07 07:37 PM
I read your post earlier...hope you are feeling a little bit better. I have had food poisoning and it isn't pretty. Prayers for a speedy recovery for you and for the docs to figure out what is causing the fevers for Natalie.
Posted By: Retired DQ
Re: In a commercial!!! - 03/16/07 08:05 PM
how odd, my kidney transplant son came down with a high fever yesterday, and he was doing so good
God bless your family
My father has had two kidney transplants, fevers are not uncommon, just make sure that he checks in with his Doc. Make sure that he avoids contact with sick folk, his immune system is very weak.
If it weren't for his heart attack a couple of years back, he probably would still have an active transplant today.
How old is he PR?
Posted By: Pale Rider
Re: In a commercial!!! - 03/19/07 06:55 PM
Kidneys stopped functioning when he was 17 and a senior in high school. Missed most of his senior year. I still remember all those letters we got from the school admins saying we were subject to arrest since we were responsible for our son's truency. He was on the type of dialysis that allowed him to do it from home every night. Only needed to do that for two years.
He will be 23 in August. Fever is now gone and we have scheduled a trip to Houston to see his transplant coordinator. That is always a hassle, we are small town folk and don't look forward to the long drive and fighting Houston rush hour traffic. But that is a small price to pay for keeping him healthy as we can.
Posted By: QCL
Re: In a commercial!!! - 03/19/07 06:58 PM
... But that is a small price to pay for keeping him healthy as we can.
And that, my friend, is the best thing that I have read today.
Posted By: Retired DQ
Re: In a commercial!!! - 03/19/07 07:06 PM
Kidneys stopped functioning when he was 17 and a senior in high school. Missed most of his senior year. I still remember all those letters we got from the school admins saying we were subject to arrest since we were responsible for our son's truency. He was on the type of dialysis that allowed him to do it from home every night. Only needed to do that for two years.
He will be 23 in August. Fever is now gone and we have scheduled a trip to Houston to see his transplant coordinator. That is always a hassle, we are small town folk and don't look forward to the long drive and fighting Houston rush hour traffic. But that is a small price to pay for keeping him healthy as we can.
You and your family are in my thoughts. Hang in there.
Posted By: someone else
Re: In a commercial!!! - 05/03/07 09:23 PM
Any updates on the Bear? How's she doing?
Posted By: QCL
Re: update... - 05/08/07 04:05 PM
Bless you for asking...
Natalie is stable. She is still listed for a new liver and moved up on the list she went from a -3 to a -1 this week.
For more on the unos scoring system go here:
MELD/PELD PDF.
But, as always, you can't tell by looking at her. She looks awesome and is super active - and sassy!! She is in ballet and getting weekly piano lessons and for the most part her liver is happy.
When I get busy, I don't always post here, but you can always check our website (in my profile) for updates.
Posted By: Nanwa
Re: update... - 05/11/07 03:41 PM
Ballet? She must look like a little fairy princess doing those piouettes! I like that image in my mind.
Hang in there everyone. I am praying for all who need it (and also for those who won't admit they need it!)
Posted By: QCL
Hold on to your hats...it's an update! - 06/08/07 06:12 PM
Friday, June 08, 2007 10:32 AM CDT
An update from clinic...
Yesterday went well. Very well in fact. But I'm going to keep you hanging for a while.
Jason and Natalie and I made the drive, since this was supposed to be a "Dr. Superina" visit, we wanted to make sure that we were all there. It's helpful - sometimes Jason and I hear and retain different things, so typically we de-brief after an appointment.
So our first step o' the mornin' was IR. And they were ready for Natalie. A blood draw during an IV placement later, and she was on her way to sedation land, and I was off for a Latte while Jason dozed in the waiting room. (He worked 12 hours on the night befores night shift). After a tubey exchange, she went to recovery. We are lucky. Natalie always does well with sedation. Ketamine, Versed, and Atropine are good friends to have. And we had our favorite IR nurses - Terry and Becky there to make sure that our girl did well. Natalie was a good girl, she even said, "Cheese" to the camera taking pictures of the contrast in her tummy!
From IR we made our way to the 5th floor for transplant clinic. And we got to meet Treyton. Treyton's mom and great aunt are
Liver Families members too. And Treyton just recently received part of his daddy's liver. Lucky boy!
We saw nurse Joan, and presented her with the very first Liver Families Luminary Award.
So then we had clinic. Dr. Alonso, Dr. Kholi, Dr. Superina, and Nurse Joan all crowded in the room to discuss Natalie.
Jason and I had no expectations going in. We acknowledged that removing the tube may not be best for Natalie, but told her team that we just needed to know if there was anything to do, other than wait. We said that she is growing, she is eating, she is in ballet, and will be in Pre-K next year - she's doing all these "normal" things, we don't want to rock the boat. I'm sure Jason had some good things to say too...I just don't remember what they are...
Dr. Superina said that whenever Natalie's name comes up when talking about kids on the transplant list, he just thinks that there is a girl that shouldn't need another transplant. So I asked him what we should do. And he turned the question back on me with, "What do you want to do?" I answered that I wanted to do what was best for Natalie.
And he said,
"I would pull the tube." So in 6 weeks we will go back. We will return to IR. Dr. Superina will be present during the study and if all looks well, we will pull the tube. Like I said to my friend PL this morning, you know I was fine until I typed that.
But wow. In 6 weeks we're going to try again.
I nervous...but faithful at the same time.
Posted By: Retired DQ
Re: Hold on to your hats...it's an update! - 06/08/07 06:13 PM
Keep hanging in there Becca!!!! Glad to hear things are getting better for all of you.
Posted By: Truffle Royale
Re: Hold on to your hats...it's an update! - 06/08/07 06:27 PM
I don't understand the ramifications of 'pulling the tube' vs not. I do understand your love and concern for your brave, wonderful daughter. Continued prayers and ((hugs)) from WI heading south to you all.
Posted By: QCL
Re: Hold on to your hats...it's an update! - 06/08/07 06:39 PM
Oh, yeah...I forgot...
Back in December this was my post...
Friday, December 01, 2006 08:20 AM CST
Clinic update...
We had clinic yesterday and all was well.
Natalie's labs look fantastic!! Just beautiful. It is hard to believe that with them looking this good, that we are re-listed for another transplant.
But she can't live forever with the tube in. She needs to bathe like all the other kids, and be able to swim. She needs to learn to pull up and down her pants, without worrying about yanking the tube out of place, or worse out completely.
She needs to not have a continuous open sore on her tummy.
And so, even with perfect liver labs, she needs a new liver. A liver that will drain bile on its own, that will create healthy non-clumpy bile. A liver that will let her live.
And In October I posted:
Thursday, October 19, 2006 09:25 AM CDT
This is hard...
This is a hard update to write. I've been sitting on this news for 2 days now, not saying anything. I hate taking you all on our roller coaster, really I do.
I mentioned in my last update that when we got home Tuesday I called Joan, Natalie's transplant coordinator. What I did not mention to you all was part of the conversation.
Dr. Superina (who, Natalie will tell you, "Has a hurt foot" - he just had surgery on his Achilles tendon) took a look at last week's IR study and the study from this Tuesday. Dr. Superina, the man that didn't want to give up on this liver. Dr. Superina is ready to re-transplant.
And I think that I am too.
A shunt would be too hard.
After talking to Dr. Kim (one of the IR doctors) I learned that these mesh metal shunts are typically used for cancer patients to improve quality of life when there are few options left. The shunts usually fail within 6 months. Since the liver would grow around the shunt, if there was a problem with it, surgery of the liver would be necessary to remove it.
And the study from this week is showing that her bile ducts are doing very little draining on their own anymore, anyway.
From what we know now, she will most likely be re-activated on the list sometime next week.
Whatever the reason, surely a miracle...her team is now saying that they may be able to pull the tube.
Posted By: Patsy Cline
Re: Hold on to your hats...it's an update! - 06/08/07 06:47 PM
Becca, I'm sure that means a world of difference for Natalie. I continue to keep you guys in my prayer and quite regularly check Natalie's website for updates.
Posted By: HRH Okie Banker
Re: Hold on to your hats...it's an update! - 06/08/07 06:50 PM
I'm sorry for the waiting period your family has to go thru and the decisions you had to make. Prayers, best wishes and lots of good thoughts are shooting at you from N, E, S and West!
Posted By: someone else
Re: Hold on to your hats...it's an update! - 06/08/07 08:47 PM
This is excellent news then! I am so glad to hear it...I really needed something cheerful today.
Posted By: Nanwa
Re: Hold on to your hats...it's an update! - 06/14/07 02:29 PM
So does this mean she may not need another transplant, that the current liver may be starting to function properly?
Posted By: QCL
Re: Hold on to your hats...it's an update! - 06/14/07 04:15 PM
Only God knows...her team is wanting to give it a shot, and we're praying.
If the duct can stay open, well then we won't need another transplant.
Posted By: Nanwa
Re: Hold on to your hats...it's an update! - 06/14/07 04:45 PM
I am praying BIG TIME for that!
Posted By: Truffle Royale
Re: Hold on to your hats...it's an update! - 06/14/07 04:58 PM
Thanks for the explanation, Becca. Now I don't feel so bad for asking. Believe me, I will be down on my knees praying for the Bear to come through this with flying colors! Godspeed, my friend. Keep us posted.
Posted By: corkygirl
Re: Hold on to your hats...it's an update! - 06/14/07 06:05 PM
Loads and loads and loads of prayers for "an open duct"!!!! Have her picture in my office so I can sent one up whenever I see her. From our lips to God's ear!!
Posted By: wavewatcher
Re: Hold on to your hats...it's an update! - 06/14/07 10:14 PM
Loads and loads and loads of prayers for "an open duct"!!!!
prayers from Hawaii
Posted By: Sing A Little
Re: Hold on to your hats...it's an update! - 06/14/07 10:47 PM
All my good thoughts and prayers are coming your way!
Posted By: waldensouth
Re: Hold on to your hats...it's an update! - 06/15/07 12:34 PM
Prayers coming your way from Georgia. Hope the duct stays open and the transplant isn't needed. Little one (an parents) needs a rest from all of this.
Posted By: Pale Rider
Re: Hold on to your hats...it's an update! - 06/15/07 01:48 PM
God Bless you and your family MOPN, from another transplant family --
Posted By: Quadspapa
Re: Hold on to your hats...it's an update! - 06/26/07 04:44 PM
MOPN, I hope you can update us soon on the beginning of your summer..
Posted By: Quadspapa
Re: Hold on to your hats...it's an update! - 06/26/07 04:44 PM
MOPN, I hope you can update us soon on the beginning of your summer..
Posted By: Quadspapa
Re: Hold on to your hats...it's an update! - 06/26/07 04:44 PM
MOPN, I hope you can update us soon on the beginning of your summer..
Posted By: QCL
Re: Hold on to your hats...it's an update! - 06/27/07 01:03 PM
Wow Waco...3 times
Our next big step is July 19th at 8:30 am. That is when we pull Natalie's tubey. If her bile ducts can stay open on their own, then we won't need another transplant.
Posted By: Nanwa
Re: Hold on to your hats...it's an update! - 06/27/07 01:11 PM
Hopehopehopehopehopehopehope....HOPE!
Posted By: *BUSTER*
Re: Hold on to your hats...it's an update! - 06/27/07 01:19 PM
Praypraypraypraypraypraypray...PRAY!
Posted By: P*Q
Re: Hold on to your hats...it's an update! - 06/27/07 02:10 PM
Praying, hoping and positive thoughts for you Becca!!!!
Posted By: Quadspapa
Re: Hold on to your hats...it's an update! - 06/27/07 02:27 PM
Ditto on all the above comments.....re: July 19th
Posted By: Truffle Royale
Re: Hold on to your hats...it's an update! - 06/27/07 05:50 PM
wishing and hoping and praying ...dang now that song and Natie's picture will be stuck in my head all day. Lots of good thoughts and ((hugs)) for all of you too. I'll keep adding an extra prayer every day till the 20th when you let us know all went well. Godspeed, my friend.
Posted By: QCL
Re: Hold on to your hats...it's an update! - 06/27/07 06:05 PM
Thanks...oh and BTW there are new pics of the bear on her webpage...and since we lost a good chunck of the guestbook you all need to sign it
please
Posted By: Mrs. Rizzo
Re: Hold on to your hats...it's an update! - 06/27/07 06:49 PM
Good thoughts coming your way, MOPN!!! Hope all goes well for your beautiful daughter!!!
Posted By: CRAatBOK
Re: Hold on to your hats...it's an update! - 06/28/07 10:18 PM
Got my fingers and toes crossed.
Posted By: waldensouth
Re: Hold on to your hats...it's an update! - 06/29/07 01:13 PM
Praying mightily for the little bear AND mama and papa bear.
Posted By: Citrus
Re: Hold on to your hats...it's an update! - 07/02/07 03:05 AM
Lotsa prayers and good wishes coming your way!
Please pray for Natalie's Daddy
Nataliebear
Posted By: doodles
Re: Natalie's Daddy - 08/06/07 03:55 PM
I saw that this morning when I checked her site and have been praying that everything is okay. Hopefully we will get an update before too long.
Posted By: corkygirl
Re: Natalie's Daddy - 08/06/07 04:03 PM
All I could think when I read this was "Oh No!!" Many, many, many prayers for Natalie's Daddy's recovery!! I know it's said that God never gives us more than we can handle but sometimes I swear he loses count!! He must have lost count with Natalie's family!! Love to Becca, with prayers for God to give her the strength to get thru this and showers of comfort coming her way!!
Posted By: blue
Re: Natalie's Daddy - 08/06/07 04:18 PM
Can't read the site from here. I take it something bad happened?
Sunday, August 05, 2007 07:02 PM CDT
This site is being temporarily taken over with news about NAtalie's daddy, who is in the hospital. At this time we know that he did not have a stroke and that his week long migraine may be some sort of virus in his spine.
Posted By: Skittles
Re: Natalie's Daddy - 08/06/07 04:28 PM
This is awful, but hopefully they'll figure out what has caused the migraine and get it taken care of. My thoughts and prayers are with Natalie, Becca and Jason.
All I could think when I read this was "Oh No!!" Many, many, many prayers for Natalie's Daddy's recovery!! I know it's said that God never gives us more than we can handle but sometimes I swear he loses count!! He must have lost count with Natalie's family!! Love to Becca, with prayers for God to give her the strength to get thru this and showers of comfort coming her way!!
Posted By: blue
Re: Natalie's Daddy - 08/06/07 04:46 PM
Nothing but positive healing thoughts are headed their way. Hopefully, it's just a migraine -- a very long one, but nonetheless a migraine.
Posted By: CRAatBOK
Re: Natalie's Daddy - 08/06/07 05:17 PM
Man, this just sucks. I hope they can figure it out soon and get him relief. I can't even imagine a week long headache.
Posted By: B_F
Re: Natalie's Daddy - 08/06/07 07:32 PM
Prayers for Poppa Bear are coming from me as well!
Posted By: thomasj
Re: Natalie's Daddy - 08/06/07 07:57 PM
Prayers for the entire bear family as always.
Posted By: RR Joker
Re: Natalie's Daddy - 08/06/07 08:18 PM
sounds like meningitis. I hope not...irregardless, I hope he will get better soon..poor Becca.
Posted By: BurntSienna
Re: Natalie's Daddy - 08/06/07 08:25 PM
I agree, joker, it does sound like meningitis. They'll likely do a spinal tap and figure out what's going on; the entire family, as always, are in my prayers.
Posted By: Skittles
Re: Natalie's Daddy - 08/06/07 08:36 PM
That's what I thought, too, I just didn't want to say it or put it in print.
Many thoughts and prayers for Poppa Bear and the whole Bear family.
Posted By: wavewatcher
Re: Natalie's Daddy - 08/07/07 12:47 AM
Any update on Papa Bear's condition? many prayers for him and the whole Bear family.
Why, I ask, are is this family asked to bear so much? I know there is a plan, but please let the plan have good health and happiness for all family members.
I talked to MammaBear last night and they ruled out both bacterial & viral meningitis (phew). They're waiting for some test results for various things including (but obviously not limited to) West Nile.
Posted By: corkygirl
Re: Natalie's Daddy - 08/07/07 01:48 AM
Well, thank goodness they have ruled out the meningitis!! West Nile, ugh
Posted By: Retired DQ
Re: Natalie's Daddy - 08/07/07 10:59 AM
Oh, Geez, will they ever get a break?
Posted By: waldensouth
Re: Natalie's Daddy - 08/07/07 12:02 PM
Prayers heading their way. With as much stress as they have been thru, its bound to have weakened their immune systems. They've been holding up pretty good until now. We'll pray for a quick recovery.
Posted By: B_F
Re: Natalie's Daddy - 08/07/07 01:34 PM
Oh, Geez, will they ever get a break?
In a way, they have. Natalie, has no tubey still, and we are talking about someone else in the family instead of that little girl... Not that this is any easier.
Posted By: Pale Rider
Re: Natalie's Daddy - 08/07/07 01:41 PM
Well, thank goodness they have ruled out the meningitis!! West Nile, ugh
I pray it is not West Nile because often paralysis is involved and a very long term recovery. God grant this family your grace and physical healing.
Posted By: mck401
Re: Natalie's Daddy - 08/07/07 01:42 PM
Prayers for Poppa Bear, Baby Bear and Momma Bear too.
Posted By: doodles
Re: Natalie's Daddy - 08/07/07 01:49 PM
Continued prayers here as well. Just hope and pray they figure out what is going on and are able to treat it quickly. Prayers for all of them.
Posted By: AngelinaLM
Re: Natalie's Daddy - 08/07/07 01:57 PM
I pray that it's not encephalitis, inflammation of the brain, well I hope it's nothing horrible at all for that matter. Prayers from Idaho. I cant read the website from work, so please keep updating BOL if you can.
Posted By: Adrian Barker
Re: Keep us in your prayers - 08/07/07 02:12 PM
Hello;
I have been out of state and have just gotten this news. Although I am not a regular poster, please know my wife and I are praying for you all. May you sense clearly the love and grace of God around you.
Posted By: E.E.G.B
Re: Keep us in your prayers - 08/07/07 04:08 PM
Talked to Mama Bear a little bit ago, Papa Bear is doing much better and they hope he can go home today! So WHEW.
Posted By: Beagles22
Re: Keep us in your prayers - 08/07/07 04:14 PM
Add my prayers to the list, I am grateful they are heading home as that is a very positive sign. God is truly testing their family, their strength is amazing.
Posted By: LoisLane
Re: Natalie's Daddy - 08/07/07 09:21 PM
All good wishes for good health to the Bear family.
Posted By: doodles
Re: Natalie's Daddy - 08/08/07 01:21 PM
Natalie's website today said that Daddy is still in the hospital and now they think it might be viral meningitis. Prayers still going up for all of them.
Posted By: Skittles
Re: Natalie's Daddy - 08/08/07 01:28 PM
Thanks for the update, doodles. Prayers are still coming from Central GA for the family.
Posted By: AngelinaLM
Re: Natalie's Daddy - 08/08/07 02:00 PM
It's not good that he has it, but thank goodness it's not bacterial! Prayers from Idaho again.
Posted By: QCL
Re: Natalie's Daddy - 08/08/07 02:36 PM
You guys are awesome!!!
EGB, I was so not me when you called... actually I was, just a different version of myself the "Hospital Mamma Bear - task manager" version.
Jason is still in the hospital.
But I am at work for a few hours.
Like I told KIWI, PL, and EGB this morning, I really really thought on Saturday, well, that I, was kissing Jason for the last time before that ambulance ride.
Super scary.
For now, we know that it was not a stroke, an aneurysm, or a tumor.
The doctors at this time are still saying that it is most likely viral meningitis (not sure why they waffled on this but whatever), but until the spinal tap results come back he's staying where he is.
Thanks again, so much!
Posted By: Skittles
Re: Natalie's Daddy - 08/08/07 02:48 PM
Thanks so much for posting the update MOPNB and please keep us posted when you can. Nothing but prayers and good thoughts headed your way. You know how much everyone here on BOL Land cares about your family.
Posted By: doodles
Re: Natalie's Daddy - 08/08/07 02:49 PM
Oh Becca. So much to deal with. I pray that Jason continues to get stronger and that he is able to come home soon. Praying for all of you - for strength and healing. You are one special lady and have had to deal with so much. We are thinking of you and praying for your whole family.
Dear Becca, so much for you to deal with! 'They' always say God never gives you more than you can handle but maybe it's time for Him to spread that around elsewhere. I'll say my prayers that He gives you guys peace and healing and keeps illness at bay from all of you for a good long stretch of time...say...years, please God.
Let us know if there's anything beyond praying any of you Bears need. ((hugs))
Posted By: P*Q
Re: Natalie's Daddy - 08/08/07 05:02 PM
Prayers, ((hugs)) and more ((hugs)) for you Becca. God bless you all. You are an amazing family.
Posted By: Okie Dokie
Re: Natalie's Daddy - 08/08/07 05:51 PM
Oh my goodness, Becca!!! Prayers and hugs headed your way from Oklahoma!
Posted By: Deena
Re: Natalie's Daddy - 08/08/07 08:34 PM
Add my prayers to the list also, Becca.
Posted By: corkygirl
Re: Natalie's Daddy - 08/08/07 09:56 PM
Love and prayers Becca!! How long before the spinal tap results come back? Truffle was right, God needs to spread some of that "stuff" around, I think he lost count!!! Keep us posted and know that you and your family are in our hearts and prayers!
Posted By: CRAatBOK
Re: Natalie's Daddy - 08/09/07 12:16 AM
Becca, thinking of you and your family. Hope you get some good news soon.
Posted By: waldensouth
Re: Natalie's Daddy - 08/09/07 02:29 PM
Prayers continue your way for the whole family. God is with you in the midst of your troubles. Lean on HIM and let HIM take that burden.
Posted By: hmdagal
Re: Natalie's Daddy - 08/09/07 03:40 PM
I'll continue to pray as well. Hopefully they'll make a definite diagnosis soon so they can direct their efforts to his recovery.
Posted By: QCL
Re: Natalie's Daddy - 08/09/07 06:42 PM
Home.
We are all home...but not for long. We're headed to Eagle River WI, land of no cell phone coverage for some much needed relaxation!
Posted By: B_F
Re: Natalie's Daddy - 08/09/07 07:06 PM
I am so glad to hear daddy is up for going fishing! And I can't wait to see pictures of what to me is unbelievable. A Barbie(tm) fishing pole!? I thought Barbie told Ken he wasn't allowed to go fishing :p
Posted By: corkygirl
Re: Natalie's Daddy - 08/09/07 07:13 PM
YEA!!!!! That is wonderful news, enjoy your "land of no cell phones ect" and all of get lots rest and recovery.
Posted By: Mrs. Rizzo
Re: Natalie's Daddy - 08/09/07 09:19 PM
Great news!!! Hope you guys have a wonderful relaxing retreat!! You deserve it!
Posted By: LoisLane
Re: Natalie's Daddy - 08/10/07 07:10 PM
What wonderful news !
Thanks for taking time to let us know.
Posted By: CRAatBOK
Re: Natalie's Daddy - 08/12/07 07:40 PM
Great news. Enjoy your trip and get some rest.
My 6-year-old daughter has a Barbie fishing pole. The cutest thing is watching my husband fish with it because a) she needs help and then b) she lost interest.
Posted By: thomasj
Re: Natalie's Daddy - 08/14/07 12:37 AM
My son has a Sponge Bob fishing rod. At times while I am helping him I realize that I have been fishing with it for too long and that people are staring at me.......
Posted By: B_F
Re: Natalie's Daddy - 08/14/07 03:15 PM
I want photos of grown men holding Sponge Bob and Barbie fishing poles!
Posted By: RR Jen
Re: Natalie's Daddy - 08/14/07 03:33 PM
Yep...my boyfriend is guilty of using the Barbie fishing pole. He actually prefers it when we're at the lake fishing from the dock because he can toss the line in tight spaces with it. It's adorable to see!
Posted By: Quadspapa
Re: Natalie's Daddy - 08/15/07 04:04 PM
I hope you had a great trip and memorable moments!
UPDATE posted today.
Also, for those of you who didn't get a chance the first time around, MOPNB has more cookbooks. They make great holiday gifts at a reasonable price and you get to help our Bear too.
Posted By: CRAatBOK
Re: Natalie's Daddy - 08/20/07 10:42 PM
Thanks Truff.
Posted By: Mrs. Rizzo
Re: Natalie's Daddy - 08/20/07 10:53 PM
So glad to hear that the vacation went well and everyone had a good time! You guys certainly deserve it!!!
Posted By: Retired DQ
Re: Natalie's Daddy - 08/21/07 10:32 AM
Thanks for the update, it is nice to hear some good news about the lovely "Bear" family.
Posted By: B_F
Re: Natalie's Daddy - 08/28/07 01:01 PM
Folks, if you haven't seen the picture of this little girl getting on the bus for the first day of school at her site, you are missing out!
Kid looks like she is selling that backpack she's so darned cute!
Props to MOPNB for dressing that child to kill for the first day of school!
Posted By: Pale Rider
Re: Natalie's Daddy - 08/28/07 02:14 PM
OK, I know I am lazy and all, but could someone post the myspace page reference again?
thanks in advance -
Posted By: Pale Rider
Re: Natalie's Daddy - 08/28/07 03:14 PM
thanks TR; I couldn't even remember if it was myspace or a webpage
Posted By: P*Q
Re: Natalie's Daddy - 08/28/07 03:18 PM
Oh my god,that photo of her getting on the bus is absolutely beautiful! She's so special and an inspiration to all! I feel like we've all sort of "watched" her grow up!
Posted By: hmdagal
Re: Natalie's Daddy - 08/28/07 03:27 PM
When did she get so big? Natalie is absolutely adorable.
Posted By: RR Jen
Re: Natalie's Daddy - 08/28/07 03:28 PM
I couldnt agree more PQ! I cant believe how "grown up" she looks.
Posted By: B_F
Re: Natalie's Daddy - 08/28/07 03:44 PM
Oh my god,that photo of her getting on the bus is absolutely beautiful! She's so special and an inspiration to all! I feel like we've all sort of "watched" her grow up!
Same here. I have a coworker that I show her pictures to once in a while, and she always asks whereI know this child from, nad it is kind of hard to understand. But we have watched this child survive, grow, and turn into a beautiful little girl, and she just keeps getting cuter and cuter.
Posted By: Sinatra Fan
Re: Natalie's Daddy - 08/28/07 03:46 PM
"Beautiful" is almost too mild a word to describe that precious little girl. What a picture!!!
I normally only look at Natalie's page from home but, after you guys all posted about the bus picture, I had to look. Now I'm all teary eyed sitting at my desk.
Becca, she's beautiful. You dressed her so cute too! I'm bummed that we won't get to meet and hug that darling little girl and you too. Soon, tho, ok?
Posted By: corkygirl
Re: Natalie's Daddy - 08/28/07 04:37 PM
Darn!!! Can't see the picture here at work, I'll have to wait until I get home!!! I did see the update that her blood work shows her "liver is happy" YEA!!!!!!!
Posted By: Skittles
Re: Natalie's Daddy - 08/28/07 04:45 PM
An absolutely stunning picture. Thanks, BF, for reminding me to look there.
Posted By: QCL
Re: Natalie's first day of school... - 08/28/07 05:10 PM
You are all amazing to say such wonderful things.
Bless you.
BTW, I changed the subject line.
But Natalie's Daddy is still pretty much an enigma. He is still showing some lasting effects from the Viral Meningitis, if that's what it was. Blood tests from yesterday are pending.
Posted By: Retired DQ
Re: Natalie's first day of school... - 08/28/07 05:38 PM
I am glad he is on the mend, MOPNB.
OMG, that is a precious picture of Natalie, how stylin' she looks!
Posted By: B_F
Re: Natalie's first day of school... - 08/28/07 05:58 PM
I still want to know how so many of us got sucked into watching the life of this little girl!
Posted By: doodles
Re: Natalie's first day of school... - 08/28/07 06:05 PM
How precious Becca! I saw the picture earlier when I checked your site and thought how thankful you have to be to see her get on the bus after all you have been through. Your family has been an inspiration to many - that no matter what life throws at you, don't lose faith. We have enjoyed watching Natalie grow up and look forward to many more posts and pictures to come!
Posted By: someone else
Re: Natalie's first day of school... - 08/28/07 06:05 PM
She is just such a cutie!!
Posted By: Mrs. Rizzo
Re: Natalie's first day of school... - 08/28/07 07:07 PM
That is adorable!!! She looks so excited!!!
Posted By: thomasj
Re: Natalie's first day of school... - 08/28/07 08:32 PM
She is so cute! That backpack looks nearly as big as she is! I will be sending my 4 year old son off to his first day of pre-school next Tuesday, I hope he looks as happy as Natalie!
Posted By: AngelinaLM
Re: Natalie's first day of school... - 08/28/07 08:40 PM
That is the cutest picture ever!!!
Posted By: califgirl
Re: Natalie's first day of school... - 08/29/07 04:34 AM
I finally got to see this famous picture - had to wait until I got home. What a gorgeous child! and she's perfectly accessorized, too, with a bracelet that matches the little buttons on her skirt. Little fashionista, lol.
Posted By: QCL
Re: Natalie's first day of school... - 08/29/07 02:19 PM
And you must know, the bracelet is her medic alert bracelet. I just made it pretty
Posted By: deppfan
Re: Natalie's first day of school... - 08/29/07 03:00 PM
Love that picture! I too am amazed at how big she is. Is she still into Guns N Roses or would she like to introduce Shinedown to her school?
Posted By: B_F
Re: Natalie's first day of school... - 08/29/07 03:12 PM
And you must know, the bracelet is her medic alert bracelet. I just made it pretty
So when are you leaving the banking industry and going into fashion design?
Posted By: Red Lady
Re: Keep us in your prayers - 08/29/07 03:27 PM
I've just joined the Threads and went back to read the mail about your daughter. What a tremendous journey you have been through and what support you have received along the way. I would like to add my prayers for Natalie and your family as you continue to be strong in the love you all share. Where can I see the picture of your daughter?
Posted By: Truffle Royale
Re: Keep us in your prayers - 08/29/07 03:53 PM
clink on the link in the second post of mine up this page.
Posted By: hmdagal
Re: Keep us in your prayers - 08/29/07 04:14 PM
MOPNB also has the link in her profile. If you click on any of her posts, then 'view profile' it's her home page.
Posted By: QCL
Re: Natalie's first day of school... - 08/29/07 06:08 PM
Love that picture! I too am amazed at how big she is. Is she still into Guns N Roses or would she like to introduce Shinedown to her school?
I think that you need to introduce Shinedown to her mom.
Posted By: corkygirl
Re: Natalie's first day of school... - 08/30/07 12:59 AM
Finally got a chance to see the picture!! What an adorable little lady you have there!!! Seems like she has grown up overnight, just from that picture. Gonna make me cry!
Posted By: Citrus
Re: Natalie's first day of school... - 08/30/07 08:07 AM
That is our little Natalie??????
I just can't believe it! What a sweetie!
Isn't it just wonderful, Becca - to see your little girl doing so very very well!?! What a wonderful day for both Natalie and you!
I am so very HAPPY for you!!
Posted By: deppfan
Re: Natalie's first day of school... - 08/30/07 12:59 PM
Posted By: Quadspapa
Re: Natalie's first day of school... - 08/30/07 03:20 PM
Becca, Natalie is so precious and darling.....I hope my new 4 week old quadruplet granddaughter, Savannah Leigh, will grow up just as beautiful!
Posted By: Princess Leia
Re: Natalie's first day of school... - 08/31/07 02:19 AM
MOPNB, I just read your post again on the website and it made me chuckle. Remember when I came to the hospital that time ... you & Natalie were watching "Finding Nemo"
Posted By: HRH Okie Banker
Re: Natalie's first day of school... - 08/31/07 02:06 PM
MOPNB - The picture is darling. How was the first day of school?
Posted By: QCL
3 year anniversary - 02/05/08 07:23 PM
3 years ago today I was waiting...on the 9th of February 2005 I was scheduled to give my daughter part of my liver. You all were there for me then.
Just look at all the pages in this post! What an amazing group of people you all are. From the cards and letters and gifts that you sent in the hospital, to the website (PL - love your hubby), the donations and care-packages, the cookbook help, gosh I really don't think that we could have made it through without the help, love and support of all of you at BOL.
I know that I don't come here as often as I once did. The "normal" life that I prayed for is here, Praise God, and with it came new tasks and roles at work. Praise God.
Anyway, Thursday, Natalie and family will travel to Chicago (after we get our expected 12+ inches of snow) for her 3rd Transplant Anniversary appointment. She is doing AWESOME! Still relisted for a new liver, but awesome, still. Life is great.
Posted By: RR Jen
Re: 3 year anniversary - 02/05/08 07:24 PM
OMG I cant believe it's been that long. She's grown so much! Be save of you trip to Chicago!
I went to the website today to check the date because I knew her anniversary was coming up soon. I thought I'd post a 'happy birthday liver' thread on Friday. I'm so glad you beat me to it because it's great to hear from you and know our Bear is doing so well. Really miss hearing from you but I thank God it's because your life is more 'normal' now. Can't think of any family that deserves it more! ((hugs)) to all the Bears and continued prayers.
TR
Posted By: B_F
Re: 3 year anniversary - 02/05/08 07:54 PM
Can you believe that three years later, our only complaint would be that she's keeping you too busy with doing gymnastics, ballet, soccer, and generally being a normal, active child for you to visit us here and update us on little Natalie's life?!
Congrats and keep posting pictures of her on the website until she gets paid for being a model, because she's one cute little girl!
PS: I still love my cookbook. So many good recipes!
Posted By: QCL
Re: 3 year anniversary - 02/05/08 07:55 PM
Thanks BF - and I just sold cookbook # 1,000!!!
Posted By: P*Q
Re: 3 year anniversary - 02/05/08 08:24 PM
Oh Becca, so good to hear things are well. I love her dancing pics, soooooo cute! You all are still always in my thoughts.
Posted By: B_F
Re: 3 year anniversary - 02/05/08 08:44 PM
Thanks BF - and I just sold cookbook # 1,000!!!
WOW! Maybe I need to do a cookbook to raise funds for my rescue work. Of course I'd probably only sell about 5 of them lol. My dogs aren't nearly as cute as the Bear!
Posted By: Princess Leia
Re: 3 year anniversary - 02/05/08 09:01 PM
From the cards and letters and gifts that you sent in the hospital, to the website (PL - love your hubby), the donations and care-packages, the cookbook help, gosh I really don't think that we could have made it through without the help, love and support of all of you at BOL.
I'm quite fond of him too
Posted By: Retired DQ
Re: 3 year anniversary - 02/06/08 11:52 AM
Becca, that is great, we are all so happy for the little Bear and your family!
Posted By: doodles
Re: 3 year anniversary - 02/06/08 03:33 PM
Becca - good to hear from you and I knew the anniversary was coming up because I still check your website to see any new posts or pictures. Love the latest pics and glad she is doing so well. It IS hard to believe it's been 3 years though. How she has grown and developed into quite the busy young lady.
Posted By: Quadspapa
Re: 3 year anniversary - 02/06/08 06:16 PM
Well that is great news. Funny how time can stand still or it just goes a flying! I am so happy for you and your fam.
Posted By: Princess Leia
Fantastic Natalie News - 02/08/08 01:10 AM
And the email from MOPNB says:
"The dialated bile duct that once was present in the ultrasound is no longer present. She's been inactivated on the transplant list."
Yes, I believe in miracles. MOPNB - that was the best news you could have ever sent!!
((hugs)) to you guys!
Sorry, I just couldn't wait for you to post!
Posted By: CRAatBOK
Re: Fantastic Natalie News - 02/08/08 01:19 AM
Fantastic. She is a miracle child.
Posted By: califgirl
Re: Fantastic Natalie News - 02/08/08 05:26 AM
What wonderful news! And the new pictures are just great - it makes me smile just to see how happy and healthy she is!
Posted By: Citrus
Re: Fantastic Natalie News - 02/08/08 07:44 AM
Happy "Liver Trannie for Nannie" Birthday! LOL
Such wonderful news about being "inactivated" on the transplant list!
And your Smilebox scrapbook is adorable!
((Now I'm smiling!))
Posted By: doodles
Re: Fantastic Natalie News - 02/08/08 02:16 PM
What fantastic news and answers to many prayers! So happy for all of you. Believe in miracles.
Posted By: Skittles
Re: Fantastic Natalie News - 02/08/08 02:44 PM
This is the most wonderful thing I could imagine. How blessed you are!!!
Posted By: B_F
Re: Fantastic Natalie News - 02/08/08 02:46 PM
WOOT!!
This is the best news. And what better time to find this out than just after the anniversary of the transplant.
Posted By: Countess Kiwi
Re: Fantastic Natalie News - 02/08/08 03:05 PM
Awesome news and happy 3rd re-birthday Natalie!
Posted By: Truffle Royale
Re: Fantastic Natalie News - 02/08/08 07:00 PM
Praise God! I rarely have that kind of reaction but it really is the most appropriate here. I'm overwhelmed with joy for Natalie. What a relief for all of you, Becca. Thanks for sharing PL.
Posted By: waldensouth
Re: Fantastic Natalie News - 02/08/08 09:54 PM
This is wonderful news! "Praise God from whom all blessings flow. Praise Him all creatures here below. Praise Him above ye Heavenly hosts. Praise Father, Son, and Holy Ghost. Amen."
Posted By: Okie Dokie
Re: Fantastic Natalie News - 02/08/08 10:31 PM
I am sitting here in tears (of relief and joy) right now!
Is it so awesome that Natalie has been inactivated!!!!!
I agree with everyone else ~~ Praise God for all that miracles that He has worked here!
Posted By: Cowboys Fan
Re: Fantastic Natalie News - 02/08/08 11:14 PM
There's good news and then there's this! I'm so happy for Natalie and all those who love her.
Posted By: pjs
Re: Fantastic Natalie News - 02/09/08 12:28 PM
Can't find the words to express how great this is.
God Bless you all!
Posted By: Retired DQ
Re: Fantastic Natalie News - 02/11/08 12:20 PM
Awesome news, Becca!
Posted By: corkygirl
Re: Fantastic Natalie News - 02/11/08 02:39 PM
What wonderful news and what a blessing!!
Posted By: QCL
Re: Fantastic Natalie News - 02/11/08 07:11 PM
Sorry, I just couldn't wait for you to post!
Love you for doing it.
Praise God indeed.
Posted By: Mrs. Rizzo
Re: Fantastic Natalie News - 02/11/08 09:19 PM
What fantastic (and much deserved) news!!!
Posted By: LoisLane
Re: Fantastic Natalie News - 02/12/08 04:29 PM
What fantastic (and much deserved) news!!!
Amen
Posted By: B_F
Re: Fantastic Natalie News - 04/25/08 07:43 PM
Can you all believe how long it's been since we've needed an update?!
Posted By: Okie Dokie
Re: Fantastic Natalie News - 04/25/08 09:22 PM
Amazing, isn't it? God is good!
Posted By: QCL
Re: Keep us in your prayers - 12/15/08 10:43 PM
It's been 4 years since I first posted about my daughter Natalie being listed for a new liver. And 4 years since manty of you here on BOL came together to contribute your prayers, warm wishes, funds to her benefit, and love to our daughter.
There is power in prayer.
4 years ago, I reflected on the season of advent on my personal webpage, for we too were waiting - for a liver.
Isn't God glorious? (Natalie is the one on the left)Thanks to all of you for your love and support.
May each of you receive His blessings this Christmas.
Posted By: Truffle Royale
Re: Keep us in your prayers - 12/16/08 01:57 AM
She is so pretty and so happy. Thanks for letting us share in your miracle.
Prayers always.
TR
Posted By: Mrs. Rizzo
Re: Keep us in your prayers - 12/16/08 02:20 AM
OK, I soooooooooooooooo want one of those thingy's!!!!! Looks like great fun!!!
And she is a doll!
Posted By: Skittles
Re: Keep us in your prayers - 12/16/08 12:17 PM
What an absolutely gorgeous little girl! Thanks so much for sharing.
Posted By: waldensouth
Re: Keep us in your prayers - 12/16/08 01:44 PM
God is indeed glorious! What a happy, energetic little girl!
Posted By: RR Jen
Re: Keep us in your prayers - 12/16/08 02:14 PM
She is just beautiful. I cant believe how big she is getting!
We know what she is thankful for (loved the Twinkies), but what has she asked Santa to bring her for Christmas?
Posted By: Retired DQ
Re: Keep us in your prayers - 12/16/08 02:32 PM
SHe looks great... choppedLiv'r
Posted By: QCL
Re: Keep us in your prayers - 12/16/08 05:50 PM
Thanks!
Jen,
last night Natalie said,
mom, here's my list...
::Big breath::
a barbie house, a Hannah Montana outfit for my build-a-bear, maybe a Hannah Montana doll, that one toy I saw - you remember the one, right mom, the one with the dots (thank goodness I do remember ) and a tree. Since we just moved into the new house, we still haven't gotten the tree - but we will cut one down this weekend.
She also asked her Grandparents on her daddy's side for a Ruthie American girl doll and asked my parents for a Leapster. The kid is specific in her requests, I'll give her that
Posted By: Tigg
Re: Keep us in your prayers - 12/16/08 06:46 PM
Wow, what a blessing! She's so cute! Wish I had been here earlier to help.
Posted By: Truffle Royale
Re: Keep us in your prayers - 12/16/08 06:51 PM
You CAN still help, Tigg. Go here and buy a cookbook to help defray the cost of Natalie's health care. Natalie's story is included in each one. The cookbooks are great and make fabulous stocking stuffers that people really appreciate and use. I know...I gave a dozen of them when they first came out and people still tell me about different recipes they've tried from it.
Posted By: Pale Rider
Re: Keep us in your prayers - 01/11/09 05:57 PM
dittos what the Truff said!
I got 4 for this past Christmas. The book is very professionally done and the recipes are great. And it is fun to get the recipe authors' autographs when you run into them at trainings, queen convocations, nights on the town, whatever.......
Posted By: QCL
Re: Keep us in your prayers - 02/13/09 03:01 PM
So we got some not so good news yesterday at the hospital -
more at the web site. I know we've been through worse. I know that.
And I know, I just know that this too shall pass...but I just don't know if I have the strength to keep going for roller coaster rides.
Say a prayer, would you?
Posted By: thomasj
Re: Keep us in your prayers - 02/13/09 03:16 PM
Prayers certainly coming from PA!
Posted By: KTMiteComply
Re: Keep us in your prayers - 02/13/09 03:57 PM
What a BEAUTY!!!! Will be thinking and praying for you guys!!! so sorry that you guys are having to go through all of this! Please keep us posted! Prov 3:5-6
Posted By: doodles
Re: Keep us in your prayers - 02/13/09 06:11 PM
I saw this when I checked your website this morning but had not been able to send thoughts your way yet. Continuing prayers from PA and knowing that you have the strength and the Faith that you need to get over this new hurdle. It is so hard to be on a roller coaster but the Guy at the controls wont leave you stranded. Hang in there and know that thoughts and prayers are with you.
Posted By: waldensouth
Re: Keep us in your prayers - 02/17/09 01:52 PM
Praying for healing and strength for your family.
Posted By: Tigg
Re: Keep us in your prayers - 02/17/09 06:49 PM
Thinking of all of you and sending good thoughts and prayers your way from LA!
Posted By: Retired DQ
Re: Keep us in your prayers - 02/18/09 12:16 PM
You are all in my thoughts.
Posted By: QCL
Re: Keep us in your prayers - 02/18/09 01:47 PM
Thanks all.
The surgery is now scheduled for Feb 23.
Posted By: Countess Kiwi
Re: Keep us in your prayers - 02/18/09 02:47 PM
Prayers from MN.
(((QCL)))
Posted By: Quadspapa
Re: Keep us in your prayers - 02/18/09 03:26 PM
Prayers for your beautiful young daughter, and for you, and for Daddy!
Posted By: QCL
Re: Keep us in your prayers - 02/19/09 02:09 PM
Thank you. I must share that last night Natalie received the Annointing of the Sick sacrament and not a dry eye was in the house. She is in youth choir while I am a youth group leader. The choir kids and our priest all came into youth group and there they stood, ages 5 to 10, circled around Natalie praying with here. It really was a sight to see as all these kids layed hands on Natalie and prayed along with us for her healing.
Posted By: Skittles
Re: Keep us in your prayers - 02/19/09 02:17 PM
That sounds truly amazing.
Posted By: Countess Kiwi
Re: Keep us in your prayers - 02/19/09 05:05 PM
Not a dry eye here either. I agree with Skittles, it sounds amazing.
Posted By: Ops
Re: Keep us in your prayers - 02/19/09 09:02 PM
Prayers from here in GA.
Posted By: Pale Rider
Re: Keep us in your prayers - 02/19/09 10:04 PM
Thank you. I must share that last night Natalie received the Annointing of the Sick sacrament and not a dry eye was in the house. She is in youth choir while I am a youth group leader. The choir kids and our priest all came into youth group and there they stood, ages 5 to 10, circled around Natalie praying with here. It really was a sight to see as all these kids layed hands on Natalie and prayed along with us for her healing.
I pray this annoiting and laying on of hands results in God being glorified in all your family does - and that Princess Nat Bear is healed....
Posted By: QCL
an update... - 04/23/09 03:51 PM
The results came last night.
Most of this I am going to put on her page. But you all get the news first.
our team has been emailing back and forth all week. Discussing and calling and discussing some more.
First, the scope looked beautiful. No varices.
From wiki -> Esophageal varices are extremely dilated sub-mucosal veins in the esophagus. They are most often a consequence of portal hypertension, such as may be seen with cirrhosis or esophageal cancer; patients with esophageal varices have a strong tendency to develop bleeding. This was a HUGE fear, as the portal vein had been blocked in the past - OK not blocked. Last time it was a narrowing at the spot where they attached my portal vein to Natalie's portal vein. And that narrowing closed. (Dr. Superina was good enough to remind me that my memory had failed.
) Anywho, given that it's been blocked before and that this time it kind of came out of no where, all were worried that she was a candidate for a bleed.
So this, for now, gives us a sigh of relief.
The biopsy showed scaring. This means liver damage. This could have been caused by the blocked portal vein. It could have been caused by the damage sustained by her bile duct issues (where she had the tubey in for over 2 years), it could have been caused by the hepatic artery clotting within the first few days following transplant.
What it did show though was signs of Alpha-1
. Antitrypsin Deficiency is a condition that is passed from parents to their children through their genes. This condition may result in serious lung and/or liver disease at various ages in life. Ummm... OK she got the liver from me.
We thought that we'd ruled out Alpha-1 in Natalie's first 3 months of life. What does THIS mean?
Natalie and I have to be re-tested. Both a simple blood test, for which the results will be back in a matter of hours, and a genetic test that could take weeks to get the results.
So for now we know this.
Her spleen is BIG - splenomegaly for those of you that need a label. No contact sports. (Ballet and swimming and golf lessons this summer are okie dokie artichokie -
her new favorite phrase )
She has mild Portal hypertension (blood pressure increase because of the lack of flow in the portal vein)
She has Portal vein thrombosis - fancy word for blockage.
Because the portal vein is narrowed or blocked, pressure in the portal vein increases. This increased pressure causes the spleen to enlarge (splenomegaly).
Her platelets are starting to drop off - another label = Thrombocytopenia (lack of clotting, fear of bleeding) because of the spleen harboring too many platelets, causing a decrease in the number of platelets in circulation. But her white blood cell count is OK. Not great. Just OK. And her neutrophil count (these are white blood cells that help fight bacteria) is adequate - as this and the white blood cell counts drop the more vulnerable you are to infectious diseases.
We know that the team decided she is not a candidate for the Rex Shunt given the survival rate for living donor recipiants - 1 in 4. She is however a candidate for the Distal splenorenal shunt (say that 3 times fast!).
for now we wait. We wait and monitor her via scopes and ultrasounds and CT scans. And wait. And pray.
Posted By: Dip
Re: an update... - 04/23/09 04:00 PM
Your poor little girl has it rough...good luck with everything and do what you can to keep her happy and occupied
Posted By: Mrs. Rizzo
Re: an update... - 04/23/09 04:08 PM
Positive thoughts and prayers for you guys!!
Posted By: Pale Rider
Re: an update... - 04/23/09 04:46 PM
okie dokie artichokie - prayers to continue!!!
Posted By: Cowboys Fan
Re: an update... - 04/23/09 04:57 PM
You guys have a permanent spot in my prayers.
Posted By: Skittles
Re: an update... - 04/23/09 05:29 PM
Becca - You and the Bear are constantly with me in my prayers. Although I don't understand most of your writing <not a medical person>, it looks like there is plenty of room for hope and always room for prayers.
okie dokie artichokie - prayers to continue!!!
You guys are amazingly strong and you've obviously got a great medical team watching over you both. I'm sure this is just another bump in the road that God has decided you're strong enough to handle.
Many ((hugs)) and just as many prayers,
TR
Posted By: KTMiteComply
Re: an update... - 04/23/09 05:51 PM
Double Ditto!!!! Hugs and MANY Prayers for you my friend....can't even begin to imagine!!!!
Posted By: Tigg
Re: an update... - 04/23/09 05:58 PM
Prayers continuing for all.............
Posted By: hmdagal
Re: an update... - 04/23/09 06:12 PM
More prayers from the midwest. Hang in there
Posted By: P*Q
Re: an update... - 04/23/09 06:33 PM
Hugs and prayers and thoughts Becca
Posted By: waldensouth
Re: an update... - 04/23/09 06:42 PM
Prayers for all of you, Becca.
What a tough road you've traveled. I'm sending thoughts and prayers to you and your family.
Posted By: corkygirl
Re: an update... - 04/23/09 07:32 PM
Oh Becca this news just breaks my heart, so much "stuff" for one little girl (and her mommy & daddy) to handle time and time again. ((((hugs)))) many, many, many times over and prayers daily!!
Posted By: TINKerBell
Re: an update... - 04/23/09 07:54 PM
Continued prayers for the Bear.....such a brave little girl!
Posted By: HMS Pippii
Re: an update... - 04/23/09 08:26 PM
I kind of think I got through the med-speak and it's not all good but it's not all bad - somehow, wait, monitor, and keep praying sounds almost normal at this point. This >"Ballet and swimming and golf lessons this summer are okie dokie artichokie"< is what sounds best to me - the Bear keeps rolling with the virtually normal life you've been able to create for her. You guys are awesome and your faith is unparalleled. Keep FROGing and the rest of us will keep praying.
(((BIG HUGS)))
Posted By: QCL
Re: an update... - 04/23/09 08:39 PM
Hawkie - you're right...and my adult onset ADHD most definately is showing in that post.
To look at my girl you have no idea that she's a virtual ticking time bomb - with veins all stopped up. God blessed me with such a wonderful gift in her.
God blessed me with such a wonderful gift in her.
Amen! Prayers from Oklahoma from me and my six dogs (I'm outa control). Can you please tell her that Koda (Rott), Kira (Rott), Patches (Aussie), Corky (Parson), Izzie (Parson) and Jessie (Matsiff) ALL wish they could come swim with her this summer?
Izzie swims in a bucket if she wants to see the picture!
Posted By: CRAatBOK
Re: an update... - 04/28/09 09:06 PM
Bec, I am way behind on my reading. Sorry to hear about all the recent complications. I have faith that you are all strong and will see this throught too. These problems should know better than to mess with the Bear.
Posted By: Ops
Re: an update... - 04/29/09 09:37 PM
Prayers!
Posted By: QCL
5 years of miracles!!! - 02/09/10 02:28 PM
[color:#009900][size:11pt][font:System]Today is the 5th anniversary of the liver transplant. Our re-birthday as we call it!
Looking back over this thread and all the support you have given us, makes one glad for the friends that they never knew that they had. You all have all held us up when we were down and for that we are thankful. You have blessed us more than you'll ever know.
Posted By: Aggs
Re: an update... - 02/09/10 02:54 PM
Gosh, Queen, what an amazing, touching story. I had no idea - I just checked out the website. I will keep you and your beautiful daughter in my ongoing thoughts. She's so precious, she has a smile that reminds me of my own little girl. I can't imagine all that you both have gone through and I am so sorry to hear that she's being re-listed. I hope with all my heart that everything works out for you all soon. Many, many (((hugs))) to you!
Posted By: corkygirl
Re: an update... - 02/09/10 03:09 PM
It has been a blessing to be even a small part of watching Natalie grow into such a beautiful little girl Becca. Happy Re-Birthday to Natalie with tons of hugs and kisses. She has the most awesome mommy I have ever know
Posted By: QCL
Re: an update... - 02/09/10 03:15 PM
Thanks Corky.
Posted By: RR Jen
Re: an update... - 02/09/10 03:18 PM
Happy re-birthday! Lots of hugs and love to you all.
Posted By: Skittles
Re: an update... - 02/09/10 03:31 PM
It doesn't seem like five years, Becca. I'll bet you celebrate this day even more than Natalie's actual birthdate.
Posted By: hmdagal
Re: an update... - 02/09/10 03:44 PM
Happy re-birthday to you and Natalie. Hugs and prayers for many more. It seems like just yesterday that you were going through this.
Posted By: waldensouth
Re: an update... - 02/09/10 04:06 PM
Happy Re-Birthday to you and Natalie! This is just wonderful! May your day and year be filled with lots and lots of blessings from God!
Every time I read that I tear up, Becca. You already know how much love and admiration I have for you...and the Bear...and Jason too. You guys are amazing. Happy Re-Birthday to you all!
((hugs)) and prayers always,
TR
Posted By: califgirl
Re: an update... - 02/09/10 05:19 PM
Happy re-birthday to both of you! It doesn't seem like 5 years could have gone by so fast.
and yes, my donor card has been signed for many years!
Posted By: Tigg
Re: an update... - 02/09/10 06:54 PM
Happy Re-Birthday Natalie!!!
Posted By: QCL
Re: an update... - 02/09/10 09:41 PM
Thanks all!!
I'll pass along the happiness to her tonight (got a call from the school nurse that the poor bear vomited in the classroom). Daddy had to go get her.
I hope she is feeling better soon.
Happy re-Birthday Little (big) NatalieBear! Your virtual aunties send lots of hugs.
Posted By: Cowboys Fan
Re: an update... - 02/10/10 11:45 PM
Happy belated 5th Re-Birthday Natalie! We look forward to celebrating many more with you and your mom and dad.
Posted By: QCL
Re: an update... - 04/23/10 09:24 PM
Hey all,
We're having some minor issues. Could be nothing, could be more than nothing. Not sure. Could you pray? Even if it's just for my continued wisdom and also that the bear's bile ducts are still in an opened position.
Without a doubt! I regularly pray for all of you anyway, but I will be extra diligent in praying for you and your kiddo (as well as the rest of the family)!
Keep your chin up!
Posted By: hmdagal
Re: an update... - 04/23/10 10:19 PM
Prayers that it does, indeed, turn out to be nothing.
Posted By: BurntSienna
Re: an update... - 04/23/10 10:41 PM
Prayers from Illinois for the Bear and her doctors and all who love her.
Add my prayers to this list. She's a beautiful little girl who has a great attitude despite everything she has gone through.
Prayers and hoping it turns out to be really minor.
Posted By: waldensouth
Re: an update... - 04/25/10 11:27 AM
Saying Extra Prayers for Miss Natalie Bear today.
Posted By: East Texas
Re: an update... - 04/26/10 03:08 AM
God's healing and blessings to you all!
Posted By: Pale Rider
Re: an update... - 04/26/10 12:13 PM
praying for the princess QCd'L
Posted By: QCL
Re: an update... - 04/26/10 01:10 PM
All is well. I was just a little freaked out - and needed to keep it stiffled while at home.
Posted By: Aggs
Re: an update... - 04/26/10 01:28 PM
I just read the update - I'm so relieved for you! (((hugs)))
Posted By: Happy2BHere
Re: an update... - 04/26/10 01:57 PM
That's wonderful, wonderful news!! So happy she is ok!
Posted By: East Texas
Re: an update... - 04/26/10 03:08 PM
Praise the Lord! Hope the cold goes away quickly. She's such a lovely girl and you are phenomenal parents!!
Posted By: QCL
A Happy Update... - 05/20/10 04:15 PM
Just a little update.
My little girl...for whom you have been praying for all these years - from the time leading up to her liver transplant, and during the time that followed...
my little girl who continues to defy doctors, beating cancer and biliary issues, proving them wrong when they gave her a week to live...
my little girl who has spent over 300 days in the hospital and learned to walk at the age of 22 months within its walls...
my little girl...
GRADUATES KINDERGARTEN TODAY!!!
damn it, Liver. Don't do that to me at work. I'm grinning like the Cheshire Cat while tears are glistening in my eyes.
Congrats, dear Natalie.
More congrats, Natalie's Mom.
And last but certainly not least...Thank You, God.
Posted By: waldensouth
Re: A Happy Update... - 05/20/10 04:47 PM
Blessings and miracles abound! This is wonderful!
Posted By: Aggs
Re: A Happy Update... - 05/20/10 04:58 PM
Congrats!!! It's amazing
Posted By: madukes
Re: A Happy Update... - 05/20/10 04:59 PM
Congratulations on her/your successes and accomplishments!
Congratulations on her graduation!
Posted By: hmdagal
Re: A Happy Update... - 05/20/10 05:51 PM
Congrats to Natalie! (and her parents, of course
)
^^ oH .... and to Mom and Dad too. They had something to do with it too!
Happy Dance.
Posted By: doodles
Re: A Happy Update... - 05/20/10 08:03 PM
Way to go! I am sure you will post pics on the website and facebook - right?? Such a miracle girl.
Posted By: QCL
Re: A Happy Update... - 05/20/10 08:05 PM
Right
Posted By: Countess Kiwi
Re: A Happy Update... - 05/20/10 08:29 PM
Congrats Nataliebear! Can we still call you that now that you are going to be in first grade?
Posted By: corkygirl
Re: A Happy Update... - 05/20/10 08:44 PM
Way Cool!!! Congratulations to our little Natalie (and mommy and daddy too of-course) Can't wait to see the pictures.
Posted By: ~MunQue~
Re: A Happy Update... - 05/20/10 08:51 PM
Congrats! I will be thinking about you and princess nataliebear as I watch my own little one walk up for her kinder grad awards. I'm so happy for you and your family, I've always admired how strong you are.
Posted By: NotPerfect
Re: A Happy Update... - 05/21/10 12:15 PM
Congrats! That's too awesome!
Posted By: QCL
Re: A Happy Update... - 05/21/10 01:48 PM
I kept it together - most of the time.
I kept getting that "chokey" feeling in my throat as I stiffled the tears though. And then my blasted camera didn't like the glare of the gym lights - I'll need to edit the pictures before posting them.
But the 3 songs that they sang and danced to were so stinkin cute
Posted By: KTMiteComply
Re: A Happy Update... - 05/21/10 02:55 PM
Congratulations Natalie and QCL!!! TO GOD BE ALL THE GLORY!!!!
Posted By: Dip
Re: A Happy Update... - 05/21/10 03:46 PM
Congrats! Saw the pics on FB yesterday--she is such a cute little girl!
Posted By: BrendaC
Re: A Happy Update... - 05/21/10 07:19 PM
That is so exciting. God is still in control. Thanks for the update.
Posted By: doodles
Re: A Happy Update... - 05/24/10 01:28 PM
Becca - the pics on facebook and the website are just too precious! She is a miracle and I am sure you are so proud of her. My how she has grown into a beautiful young lady!
The pictures were precious. Loved the dress. I bet she felt like a princess that day!
Posted By: Pale Rider
Re: A Happy Update... - 05/24/10 04:57 PM
Your family is such a great example of making the most of the time given us....
I can't believe she's graduated from KG!! Great pictures! Thank you for sharing this journey with all of us!
Also, I loved the picture on the website of her swimming while wearing her goggles! I actually laughed out loud when I saw that this morning...so cute and goofy!
Posted By: QCL
Re: A Happy Update... - 05/24/10 09:12 PM
Thanks!
And Pale your comments were lovely, thank you too.
Congratulations! I think my daughter's Kindergarten graduation was more emotional for me than her high school graduation. My best wishes for your and her continued strength and health.
Posted By: East Texas
Re: A Happy Update... - 05/26/10 07:51 PM
And God's blessings keep flowing! Congratulations!!
Posted By: QCL
Re: A Happy Update... - 08/09/10 09:00 PM
And in happy Nataliebear news...I signed her up for swim-team today!!!
Prayers work. Thank to all of you that prayed for my miracle.
Posted By: Skittles
Re: A Happy Update... - 08/09/10 09:16 PM
She's now on a swim team? How cool is that. Congratulations MamaBear!!
Posted By: corkygirl
Re: A Happy Update... - 08/09/10 09:59 PM
I was blessed to spend part of Sunday with Natalie and she is a little waterbug -- a really cute one at that
Posted By: Tigg
Re: A Happy Update... - 08/09/10 11:00 PM
Yay for Natalie!
Posted By: QCL
Re: A Happy Update... - 08/10/10 01:24 PM
I was blessed to spend part of Sunday with Natalie and she is a little waterbug -- a really cute one at that
We were blessed to spend it with you too!
Posted By: pjs
Re: A Happy Update... - 08/10/10 04:19 PM
She's a beautiful girl and an amazing one at that.
Wednesday's first day of school post on Natalie's webpage has me sitting here with tears in my eyes! God is good!
Posted By: QCL
Re: A Happy Update... - 08/23/10 02:13 PM
Yes, He is.
Thanks!
Posted By: QCL
Birthdays are a blessing. - 09/30/10 02:12 PM
Today I am blessed. My little bear is now 7 years old today!
For years you have prayed with us, supported us, bought our cookbooks (of which we still have some
), sent us care packages to the hospital, sent cards to the hospital, etc. For all of these years you have held me up to help me be a better mom. And for that I thank you.
I was reading through this very long thread and realized something... while all of this stuff (in the following post) is still a ticking time bomb inside of her, faith, hope and love are getting us through. And so much of that is due to all of you.
Thanks for being there.
The results came last night.
Most of this I am going to put on her page. But you all get the news first.
our team has been emailing back and forth all week. Discussing and calling and discussing some more.
First, the scope looked beautiful. No varices.
From wiki -> Esophageal varices are extremely dilated sub-mucosal veins in the esophagus. They are most often a consequence of portal hypertension, such as may be seen with cirrhosis or esophageal cancer; patients with esophageal varices have a strong tendency to develop bleeding. This was a HUGE fear, as the portal vein had been blocked in the past - OK not blocked. Last time it was a narrowing at the spot where they attached my portal vein to Natalie's portal vein. And that narrowing closed. (Dr. Superina was good enough to remind me that my memory had failed.
) Anywho, given that it's been blocked before and that this time it kind of came out of no where, all were worried that she was a candidate for a bleed.
So this, for now, gives us a sigh of relief.
The biopsy showed scaring. This means liver damage. This could have been caused by the blocked portal vein. It could have been caused by the damage sustained by her bile duct issues (where she had the tubey in for over 2 years), it could have been caused by the hepatic artery clotting within the first few days following transplant.
What it did show though was signs of Alpha-1
. Antitrypsin Deficiency is a condition that is passed from parents to their children through their genes. This condition may result in serious lung and/or liver disease at various ages in life. Ummm... OK she got the liver from me.
We thought that we'd ruled out Alpha-1 in Natalie's first 3 months of life. What does THIS mean?
Natalie and I have to be re-tested. Both a simple blood test, for which the results will be back in a matter of hours, and a genetic test that could take weeks to get the results.
So for now we know this.
Her spleen is BIG - splenomegaly for those of you that need a label. No contact sports. (Ballet and swimming and golf lessons this summer are okie dokie artichokie -
her new favorite phrase )
She has mild Portal hypertension (blood pressure increase because of the lack of flow in the portal vein)
She has Portal vein thrombosis - fancy word for blockage.
Because the portal vein is narrowed or blocked, pressure in the portal vein increases. This increased pressure causes the spleen to enlarge (splenomegaly).
Her platelets are starting to drop off - another label = Thrombocytopenia (lack of clotting, fear of bleeding) because of the spleen harboring too many platelets, causing a decrease in the number of platelets in circulation. But her white blood cell count is OK. Not great. Just OK. And her neutrophil count (these are white blood cells that help fight bacteria) is adequate - as this and the white blood cell counts drop the more vulnerable you are to infectious diseases.
We know that the team decided she is not a candidate for the Rex Shunt given the survival rate for living donor recipiants - 1 in 4. She is however a candidate for the Distal splenorenal shunt (say that 3 times fast!).
for now we wait. We wait and monitor her via scopes and ultrasounds and CT scans. And wait. And pray.
Posted By: B_F
Re: Birthdays are a blessing. - 09/30/10 02:21 PM
MoPNB,
Thank YOU for letting us in to your life. We too have received much of the joy of watching your little miracle girl grow up so darned cute that some day, daddy is going to need to wear uniform and gun and answer the door to beat the boys off with his night stick. We've shared your joy at her good health. I can only speak for myself of course, but I'd say we've gotten as good as we've given!
So, keep posting the cute pictures, we'll keep praying, and oohing and aahing at all her adorable moments!
Posted By: hmdagal
Re: Birthdays are a blessing. - 09/30/10 03:20 PM
Happy birthday to the little princess!
Thanks to mom and dad for sharing her with us and for doing such a good job as parents
Posted By: doodles
Re: Birthdays are a blessing. - 09/30/10 03:25 PM
Happy 7th Birthday Natalie!! And ditto on the sharing with us - you have been a blessing to all of us and an inspiration. Enjoy this very special day.
Posted By: Quadspapa
Re: Birthdays are a blessing. - 09/30/10 03:28 PM
HAPPY BIRTHDAY!!!
You all have endured so much and kept the faith. Thanks for letting us be informed of the Princess's life during the years.
Like B F said above, we like pictures.....
Posted By: ~MunQue~
Re: Birthdays are a blessing. - 09/30/10 04:10 PM
HAPPY BIRTHDAY PRINCESS NATALIE!!!
Posted By: Truffle Royale
Re: Birthdays are a blessing. - 09/30/10 05:12 PM
She's practically my fourth grangirl, even tho I've never actually met her. Tearing up at my desk thinking back over the blessing this child has been for all of us who have come together because you were so generous in sharing her. Much love and seven (((((((hugs))))))) and
STO LAT! which has never been more appropriate to wish to anyone.
TR
Posted By: Aggs
Re: Birthdays are a blessing. - 09/30/10 05:18 PM
Happy birthday to Natalie!
Posted By: Skittles
Re: Birthdays are a blessing. - 09/30/10 05:57 PM
Happy Birthday, Natalie. You have touched so many lives.
Posted By: waldensouth
Re: Birthdays are a blessing. - 09/30/10 06:18 PM
Happy Birthday Natalie! May your life be as much of a blessing to you as it has been to us!
Posted By: Tigg
Re: Birthdays are a blessing. - 09/30/10 10:45 PM
Happy Birthday to Natalie. Such a blessing and miracle.
Posted By: QCL
Prayers and happy thoughts...please. - 12/22/10 05:15 PM
Argh!!!
Hospital called, they are "concerned" with latest labs - want CT and ultrasound, they think. I am not ready for the roller coaster to start up again. Would someone say a quick prayer?
Posted By: Skittles
Re: Prayers and happy thoughts...please. - 12/22/10 05:16 PM
Done!
Posted By: RR Jen
Re: Prayers and happy thoughts...please. - 12/22/10 05:18 PM
Of course!
Posted By: hmdagal
Re: Prayers and happy thoughts...please. - 12/22/10 05:23 PM
You've got lots of prayers, as always.
Posted By: Countess Kiwi
Re: Prayers and happy thoughts...please. - 12/22/10 05:30 PM
Sending prayers. (((hugs)))
Posted By: ecrew,CRCM
Re: Prayers and happy thoughts...please. - 12/22/10 06:08 PM
Pryaing as I'm typing.
Posted By: waldensouth
Re: Prayers and happy thoughts...please. - 12/22/10 06:44 PM
Prayers for Nataliebear and momma and poppa bear being said.
Posted By: RR Joker
Re: Prayers and happy thoughts...please. - 12/22/10 06:53 PM
You've got it!
Posted By: Carin Eisenhauer
Re: Prayers and happy thoughts...please. - 12/22/10 07:11 PM
Becca, prayers, prayers and more prayers.
Posted By: Pale Rider
Re: Prayers and happy thoughts...please. - 12/22/10 07:14 PM
I am so sorry to hear this momma bear. May wisdom be given to the doctors, I pray the ultrasound shows all to be working as it should.
Posted By: corkygirl
Re: Prayers and happy thoughts...please. - 12/22/10 10:24 PM
Prayers, prayers and more prayers - - plus tons of (((hugs))) for you.
Posted By: Cowboys Fan
Re: Prayers and happy thoughts...please. - 12/22/10 10:31 PM
May all of your roller coaster rides be limited to amusement parks! Y'all are in my thoughts and prayers.
Posted By: HMS Pippii
Re: Prayers and happy thoughts...please. - 12/22/10 11:09 PM
Pray without ceasing and love without ceasing and keeping trusting that God is sitting next to you on any rollercoaster that confronts you.
(((HUGS)))
Posted By: SMQ, CRCM
Re: Prayers and happy thoughts...please. - 12/23/10 04:05 AM
Lots and lots of prayers that all turns out well. Both of you are so tough that I know that you guys can handle whatever comes, but know that we are here for all of you. hugs sweetie
Posted By: RR Sarah
Re: Prayers and happy thoughts...please. - 12/23/10 01:51 PM
Adding my prayers!
Posted By: RR Becca
Re: Prayers and happy thoughts...please. - 12/23/10 02:01 PM
and mine!
Posted By: QCL
Re: Prayers and happy thoughts...please. - 12/23/10 04:56 PM
Thank you all!!! Ultrasound is scheduled for NEXT Thursday. We will have to wait and see what is going on then. I was REALLY low about this yesterday. You cannot know what a blessing your words were to me.
Posted By: Dip
Re: Prayers and happy thoughts...please. - 12/23/10 05:35 PM
I hope it's just an abundance of caution and things will be ok. Hugs for your family!
Posted By: Snowgirl
Re: Prayers and happy thoughts...please. - 12/23/10 05:49 PM
Sending up a prayer for all of you MamaBEAR! May you all be blessed this Christmas.
Posted By: BowlingQueen
Re: Prayers and happy thoughts...please. - 12/24/10 05:00 PM
Thoughts and Prayers going to all of you.
Posted By: wavewatcher
Re: Prayers and happy thoughts...please. - 12/24/10 09:51 PM
thoughtful healing prayers coming your way.
Posted By: B_F
Re: Prayers and happy thoughts...please. - 12/27/10 02:17 PM
God has a plan for your little girl, and I don't think it is for her to lift the spirits of so many for such a short time. You'll be in our prayers!
Posted By: Bankbb1, PITA
Re: Prayers and happy thoughts...please. - 12/29/10 06:35 PM
Prayers to you!
Posted By: QCL
Re: Prayers and happy thoughts...please. - 12/29/10 08:35 PM
Thank you all.
Hopefully, after tomorrow we will have some answers. And hopefully, they are good.
Posted By: Skittles
Re: Prayers and happy thoughts...please. - 12/29/10 08:39 PM
Prayers have already been said - will be said again - and all fingers are crossed MamaBEAR.
Posted By: Aggs
Re: Prayers and happy thoughts...please. - 12/30/10 02:14 PM
(((hugs)))
Thinking of you today!!!
Posted By: Quadspapa
Re: Prayers and happy thoughts...please. - 12/30/10 08:33 PM
Prayers per your request Mama Bear..................
I have a kidney situation with my granddaughter that I'll post about in a day or two.
Posted By: HRH Okie Banker
Re: Prayers and happy thoughts...please. - 12/30/10 09:54 PM
Thinking of the family and sending prayers and happy thoughts.....
Posted By: QCL
I love "stable" news - 12/31/10 01:52 PM
We got good news! The blood is flowing, around the blockage!
I should explain a bit. See N's Portal Vein is blocked - 100% by all estimations. Like a heart blockage, we first sought to remedy this by angiogram/angioplasty. But it failed. The next solution is a shunt (some call it a stent). But she's not done growing yet, and it would have to be replaced year after year after year. Not ideal.
The next solution is a "shunt" using her own veins and vessels.
A procedure developed by her own surgeon!
http://www.portal-hypertension.com/the-rex-shunt-procedure-for-portal-hypertension/ http://www.childrensmemorial.org/depts/conditions.aspx?cID=1888 But in a living donor situation, the failure rate is HIGH (according to the same surgeon). And that's not an option.
And so, now that we know that blood is still flowing, we will continue to wait it out. Praying that her body's own by-pass continues to hold and thanking God, that now is not the time to act.
Posted By: ecrew,CRCM
Re: I love "stable" news - 12/31/10 02:06 PM
MamaBear, I can not imagine what you are going through with your little one. I cann't stand it when my little ones have a cold. You and your family will also be in my prayers. I wish you the best for 2011 and always. And yes "stable" news is good
Posted By: MyBrainHurts
Re: I love "stable" news - 12/31/10 02:42 PM
Good news is a wonderful belated Christmas present. Hope 2011 goes well for your little girl.
Posted By: Pale Rider
Re: I love "stable" news - 12/31/10 04:14 PM
Wonderful news parental unit bear!
Posted By: QCL
6 years of miracles! - 02/09/11 02:45 PM
Today we celebrate the 6th Re-birthday! The anniversary of Natalie's liver transplant.
Thanks to all of you for being with us through all the ups and downs of our journey. I was blessed to have had you along for the ride and pick me up when I was low.
I am rebuilding her website - check it out and let me know what you think.
And thanks again for everything!!!
Posted By: RR Joker
Re: 6 years of miracles! - 02/09/11 02:58 PM
Happy Re- Birthday, Little Bear!
Posted By: waldensouth
Re: 6 years of miracles! - 02/09/11 02:59 PM
Looks good! I can't believe its been 6 years! What wondrous miracles the Lord doth wrought.
Posted By: RR Jen
Re: 6 years of miracles! - 02/09/11 04:20 PM
Happy re-birthday!!!
Posted By: RR Becca
Re: 6 years of miracles! - 02/09/11 04:23 PM
Happy re-Birthday!
Posted By: hmdagal
Re: 6 years of miracles! - 02/09/11 05:02 PM
And another one... happy re-birthday!
Posted By: RR Sarah
Re: 6 years of miracles! - 02/09/11 05:15 PM
Happy Re-Birthday!
Posted By: Skittles
Re: 6 years of miracles! - 02/09/11 05:17 PM
Ditto - Happy re-birthday to Nataliebear.
Posted By: Bankbb1, PITA
Re: 6 years of miracles! - 02/09/11 06:26 PM
What a great miracle! Congratulations!!!
Posted By: doodles
Re: 6 years of miracles! - 02/09/11 06:39 PM
Such a journey and such an inspiration - all of you are! It is hard to believe its been six years - seems like just yesterday... God is good!
Posted By: Skittles
Re: 6 years of miracles! - 02/09/11 06:57 PM
D*mn - I just went to the website and read what you posted about 6 years ago today. Now I have tears. What an amazingly selfless thing you did - from an amazingly selfless person.
Posted By: wavewatcher
Re: 6 years of miracles! - 02/09/11 07:28 PM
i am so happy for you and your family. you journeyed thorough territory no family should face, but did it with style and grace (and lots of prayers).
prayers continue for her good health
Posted By: QCL
Re: 6 years of miracles! - 02/09/11 08:59 PM
Thank you so much friends. Your kinds words mean so much!
Posted By: B_F
Re: 6 years of miracles! - 02/10/11 02:59 PM
Do I spy a new version of the cookbook coming online? Mmmmmmm
Congrats on 6 years of inspiring so many people!
Posted By: QCL
Re: 6 years of miracles! - 02/10/11 07:27 PM
Sadly no.
I still have about 120 of them left and am trying to create an easy way to sell them
And thank you.
Posted By: Pup
Re: 6 years of miracles! - 02/10/11 07:31 PM
You sell cookbooks?
Posted By: QCL
Re: 6 years of miracles! - 02/10/11 07:39 PM
Yes sir...how did you miss that one?
We created Nataliebear's Nummies - there are over 600 recipes (there are 601
) in it (many from BOL users)!
http://www.bankersonline.com/forum/ubbth...true#Post264399 Here is the link where my pal TR mentions it
Posted By: RR Sarah
Re: 6 years of miracles! - 02/10/11 07:50 PM
I would like to purchase a cookbook but it looks like the link isn't available on the website yet. I'll keep checking.
Posted By: Pup
Re: 6 years of miracles! - 02/10/11 08:02 PM
If you'll deliver to Oklahoma, in person, I'll buy 10. What's the damage?
Posted By: Peepers
Re: 6 years of miracles! - 02/11/11 03:16 PM
I was looking through some cookbooks for ideas for this weekend (mostly slow cooker books) I may have to pick this one up as well
Posted By: QCL
Re: 6 years of miracles! - 02/11/11 06:48 PM
Oh my, thanks for the interest all!
I am trying to get the link to work.
They are $15 a piece and then we do charge for shipping (and no, I do not deliver
)
I only accept paypal for payment - it makes my life soooooo much easier
Posted By: RR Joker
Re: 6 years of miracles! - 02/11/11 07:02 PM
I was looking through some cookbooks for ideas for this weekend (mostly slow cooker books) I may have to pick this one up as well
Wow..the man is honest, I'm impressed!
FWIW, I have one of Natalies cookbooks..they are worth it.
Posted By: Pup
Re: 6 years of miracles! - 02/11/11 08:29 PM
MamaBear,
Hit me up on fb when the link is working. I'll buy a few to give for gifts (and one to keep for myself!).
MamaBear,
Hit me up on fb when the link is working. I'll buy a few to give for gifts (and one to keep for myself!).
That's what I did. I gave them to all my employees here for Xmas the year they came out. They were very well received too.
Posted By: Skittles
Re: 6 years of miracles! - 02/11/11 09:49 PM
I also gave some out as Christmas presents one year.
Posted By: Bankbb1, PITA
Re: 6 years of miracles! - 02/11/11 11:04 PM
I'm in Mama! And I've got paypal! You can send me the poop on FB or just tell me what to do. I want one!
Posted By: Truffle Royale
Re: 6 years of miracles! - 02/14/11 06:46 PM
bankbb1, trust me, buy more than one. They make FABULOUS gifts. This is a real people's cookbook not something you have to be a Top Chef to use. I bought a dozen and gave them to friends and relatives for Christmas one year. They still thank me for it.
Posted By: B_F
Re: 6 years of miracles! - 02/16/11 05:46 PM
Truffle says it well. I usually hate cooking from recipes. I equate it to painting by numbers, but I love this one because it is recipes by real people, including many from BOL members. I have actually used a recipe or ten almost exactly from the cookbook.
Posted By: B_F
Re: 6 years of miracles! - 02/16/11 05:48 PM
By the way, sounds like you'll get rid of a bunch of those cookbooks if you just remind people that you have them :0
Posted By: Pale Rider
Re: 6 years of miracles! - 02/22/11 08:48 PM
I have bought a few of the books, the womenfolk in the family enjoy having them....
Posted By: Zoo Mama
Re: 6 years of miracles! - 02/23/11 02:16 PM
Love mine! I got one for my step daughter who is just getting settled in her own apartment. She uses it alot and says it is easy to follow and it has "food she's actually heard of".
Posted By: doodles
Re: How it all began.... - 01/20/12 03:02 PM
Wow Becca - I follow Natalie's story here as well as Facebook but it never ceases to amaze me of all that you have been through and how difficult this is/was to handle as a parent. You, Jason and Natalie definitely have a wonderful story to share with others to give them faith and hope in their circumstances. Its great that you are contributing to this new site with your life story and I am sure that many will be blessed by what they read.
Posted By: Quadspapa
Re: How it all began.... - 01/25/12 04:57 PM
That's neat Becca.....
Posted By: QCL
Re: UPDATE - 09/30/14 02:25 PM
This thread was started many moons ago when me and my family were at our lowest. Our baby girl was waiting for her new liver.
And today - today we celebrate her 11th birthday. The road to this point has not been without its bumps, but so many of you my BOL friends, held us up in the lowest points, and made the road easier to travel.
New video montage today at
www.nataliebear.com - thanks to you all for the prayers and blessings over the last 11 years.
Thank you.
Posted By: MB Guy
Re: UPDATE - 09/30/14 02:45 PM
Congratulations, just awesome.
Posted By: RR Jen
Re: UPDATE - 09/30/14 02:46 PM
HAPPY BIRTHDAY NATALIEBEAR!!!
Posted By: Skittles
Re: UPDATE - 09/30/14 02:49 PM
She's 11? That doesn't seem possible. Thanks for posting this, QCL. And Happy Birthday Natalie!!!
Posted By: edAudit
Re: UPDATE - 09/30/14 03:02 PM
Happy 11 Natalie
Happy Birthday, Nataliebear!
One of the bestest kids I've had the pleasure of meeting.
The fact that she backs the 'right' football team doesn't influence me at all.
Sto Lat to the Bear!
thanks to you all for the prayers and blessings over the last 11 years.
Thank you.
Thank you, for sharing with all of us - friends and strangers, and for the blessings and inspiration we all received.
Happy Birthday NatalieBear!
'Scuse me while I pick my jaw up off the floor! That just doesnt seem possible! It is an amazing thing and a wonderful proof that God meant you to be her mommy. Nothing random there! Happy Birthday and congratulations!
That cookbook is getting some age on it! Happy Birthday to the Bear! How awesome.
Posted By: RVFlyboy
Re: UPDATE - 10/02/14 02:28 PM
That is truly awesome. I think it was a combination of your experience with the BOL community with Natalie and my experiences at the same time with the BOL community with Lynne that really crystallized us as a family. Happy belated birthday to Natalie!
Posted By: QCL
Re: UPDATE - 10/02/14 02:38 PM
We are family, aren't we Jim? And thanks!
Posted By: noelekal
Re: UPDATE - 10/02/14 09:13 PM
Very touching and uplifting to see. Thanks for posting the video montage of your winsome daughter and her fine family.
Wow! Time has flown. Happy birthday Natalie! I have the cookbook, too! I'm going to have to dig that out in her honor!
Posted By: Quadspapa
Re: UPDATE - 10/07/14 01:57 PM
Happy belated 11th Birthday sweetie, go for the full dozen now!
Happy belated birthday to Nataliebear! I loved the video on Facebook. You have been through so much, and survived!! They say God only gives you what he thinks you can handle, he must think you are a real tough one! I will keep you and your family in my thoughts and prayers for continued good health.
Do you have any cookbooks left? I would like one. Thanks.
Posted By: B_F
Re: UPDATE - 10/22/14 01:40 PM
Happy belated birthday to Nataliebear! I loved the video on Facebook. You have been through so much, and survived!! They say God only gives you what he thinks you can handle, he must think you are a real tough one! I will keep you and your family in my thoughts and prayers for continued good health.
Do you have any cookbooks left? I would like one. Thanks.
God doesn't give you what you can handle, he equips you to handle what you are given.
Oh, and I can't believe she's 11 already. Where has the time gone?
Posted By: QCL
Re: UPDATE - 10/22/14 02:22 PM
JWills,
I have less than 30 cookbooks that remain.
PM me your address.
Posted By: QCL
Re: UPDATE - 10/22/14 02:23 PM
The time has flown, BF.
Truly, flown.
Posted By: QCL
Re: UPDATE - 01/30/15 03:13 PM
The 10 year anniversary of the liver transplant is coming up and I just wanted to share, if you can, go to my Facebook page, or instagram and look at the picture I just posted.
In honor of her 10th Transplant anniversary (her liver’s 10th rebirthday), Natalie requested toys!! But these toys are not for herself. No, we are then taking the toys to the children at Lurie Children’s Memorial Hospital (her transplant hospital) and also to the children at the Ronald McDonald house (Natalie’s home away from home).
The kids at her school rose to the challenge. There are boxes and boxes and boxes overflowing with toys!!! Each one of those toys was brought in by the hands of a child to be given to a sick child. And then to top it off, her swim team coach ALSO sent out a flyer to the area swim teams coming to our conference meet this weekend. Seriously, the generosity of those in our community has rendered me speechless and overcome with emotion.
ok...I'm all teary eyed at my desk. Half of the tears are tears of joy for our Natalie celebrating such a milestone. The other half are for the people whose lives you and she have touched in a manner that brings out the best in so many of them. Bask in His Glory.
Posted By: RR Joker
Re: Keep us in your prayers - 01/30/15 04:12 PM
10 year...OH MY! What a wonderful way to celebrate it!
::now I feel really old!::
Posted By: doodles
Re: Keep us in your prayers - 01/30/15 04:33 PM
I saw the picture on FB this morning and was amazed at the response Natalie got to the drive. What a blessing you all have been through this journey and yes - it is hard to believe it has been ten years! You certainly have reason to be proud of your "little" girl - she has a big heart!
Posted By: waldensouth
Re: Keep us in your prayers - 01/30/15 07:29 PM
I saw that on facebook this morning. How wonderful!! I know you are so proud!
Posted By: JWills, CRCM
Re: Keep us in your prayers - 01/30/15 07:43 PM
She is such a remarkable young lady, it appears she takes after her mother!
I am verklempt! I just can't beleive that it has been 10 years now. Her generosity and those around her just overwhelm the emotions.
Go Natalie!
Posted By: basilring
Re: Keep us in your prayers - 02/03/15 03:11 PM
What a great kid!
Posted By: ecrew,CRCM
Re: Keep us in your prayers - 02/04/15 03:25 PM
Awesome! What a remarkable young lady! And good for the children to step up too.