We're still here. Doing the same thing we did yesterday. Watching her pee and filling her back up again!
They kept her urine catheter in again today and will hopefully take it out tomorrow. We've been trying to get all the fluid she needs through her g-tube and she did pretty good with the increased amount until about 4:00 pm. Then she just got backed-up and overloaded. She was gagging pretty bad for the next hour or so and we slowed things down for her. So she's not at her feeding goal yet. We're not sure what the docs are going to want to do tomorrow. We think she'll be able to do it but it might take a few days for her body to work up to it. Hopefully we won't have to stay here for those few days! She really is doing wonderful and everyone keeps asking us why she's still here!!
We're just taking one day at a time. Not planning on leaving tomorrow but hoping for Friday.
Her oxalate level today was 9.6. YEAH!!
Benson and Jared went sledding down a huge hill today at a park by our house. Benson pretty much has no fear, according to Jared. He was going down hills that 10-12 year old boys were scared to go down! They loved getting out and having some fun together.
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 30, 2009
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5 comments:
Reading every update... should be commenting more, I guess! Glad to hear how great Claire is doing! That is wonderful. Will continue to pray for you guys after you get home, which I hope is soon. What a great way to start the new year! :)
She looks so cute and so good. I am so happy for you all. :)
How nice to see her smile!
I love that she crosses her leg. It is really cute.
As for sledding, that is fun. We were hoping for some snow in Vancouver over Christmas so we could take Summer.
I am glad they got to get out and enjoy being cold.
We just got home from Idaho and I am finally catching up on your postings. I can't stop crying. I am so happy for you and your sweet family. I hope everything continues to go well for little Claire. She is such a cutie. Happy New Year and good luck!
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