Benson and Claire were born with a rare genetic disease in which their liver produces too much oxalate--called primary hyperoxaluria. Claire's condition has progressed much faster than Benson's. She was on dialysis since she was 3 months old and for much of that time, did dialysis 3 hours a day, 6 days a week. She receive a much needed kidney / liver transplant on December 18, 2009. It is expected Benson will eventually need similar transplants.


Wednesday, December 23, 2009

Dec 23 10:00 pm

Another day with more improvements. It's definitely been a process as we've weaned her off the fentanyl, but we're getting there. She has started the other pain med in its place and that seems to be working. She is still on a small dose of fentanyl and every time we cut the dose in half she gets fidgety and unable to relax. That zombie look comes back into her eyes. But with time, it will get better. This other pain med makes her sleepy so I guess that's good, at least for the night time. She still jerks herself awake quite often and needs comfort to calm down and relax again.

Our biggest worry for the night is our sweet friend Gifty. She did not have a good day today. She was rushed down for a brain surgery because she had internal bleeding on her brain. They had to remove part of the brain because it was soaked in blood. She did okay through the surgery but there is a chance that she could start bleeding in the brain again. They don't know why the bleeding started. Both Claire and Gifty are on Heparin to thin their blood so the blood flows easily through the arteries to the liver. They really like to keep the blood thin so the artery doesn't clot off. But now for Gifty, they don't want her blood thinned since there is a chance that the brain could bleed again. They have stopped her heparin. BUT that puts the artery to the new liver at risk of clotting off. Please remember her and her family in your prayers. Things are still questionable as to why this happened or how it will turn out but we're hoping for the best. Please remember Gifty.

Gifty

Gifty has an amazing mom. Its so rare to find someone willing to travel to another country and rescue a sweet girl. Her and her husband gave Gifty a second chance at life.

6 comments:

** Adrian ** said...

OOOH! That is so sad to hear that Gifty is not doing well. I will be praying for her & her family.

You're in my thoughts as well.

sharpfamiy said...

Wow, what a wonderful couple to save that sweet little girl. They (and you) will be in our prayers!

Mary said...

We'll be praying for both sweet angels!

dawnkp said...

Hi, I'm Kayleen Oldham's (your neighbor in Colorado)sister. I have been following Benson and Claire's blog since she told me about them and Claire getting her transplant. I am so happy to see that her body is being receptive to the transplants, and that she is making a recovery. Seeing the pictures and videos of her made me laugh and cry at the same time. She is adorable and so sweet. What a little trouper. Your whole sweet family are troupers! My husband and I have been looking at the blog tonight and he was amazed at how sweet and Strong little Claire is. We have a daughter her age named Halle. We want you to know that Claire and Gifty and your families are in our prayers and thoughts. Benson and Claire are very special gifts from God and you are very special parents to be entrusted with them. Good luck and God be with you! Dawn

Nathan & Michelle Watabe said...

Gifty will be added to my prayers.

What happened with the donations??!! They sky rocketed overnight! Is it another Christmas Miracle? :)

Rebecca said...

That just breaks your heart for Gifty! It really makes you appreciate everything that much more, thanks for sharing Nat. Claire is looking so much better, I'm so glad. MERRY CHRISTMAS, We LOVE you guys!