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.


Sunday, October 11, 2009

Oct 11 a.m.

Claire has had a much better morning. She slept on and off last night. Jared said she'd stay asleep for 20-40 minutes at a time and then eventually get back to sleep again. We'll take it! She is resting again now. She is focusing better today and doesn't have that same glazed look in her eyes that she had yesterday. I feel like things are definitely improving.

They are moving us out of the PICU to a different room on the 3rd floor. Since she doesn't have a central line anymore, she doesn't need to be in the PICU. They are really hoping we'll be able to go home tomorrow afternoon. She will recover soooooo much better at home, in a safe, familiar environment. It all depends on what the hematology group decides to do about the blood clot. They will do an ultrasound in the morning and decide what to do from there.

Thanks again to everyone for keeping Claire in your prayers.

2 comments:

Unknown said...

SO glad to hear she is getting some rest. Ty has been asking "who's Benson and Claire?" because they are constantly in our prayers. Now he has started saying "please bless my buddies Benson and Claire, but 'pecially Claire today" It's so cute! You guys are amazing- wish I could be there to do something more helpful! Keep on truckin'!

~adelle said...

I am so relieved. What good news. I hope you get to go home soon. She will surly recover better there. Funny isn't it? You have to go home from the hospital to get some sleep and get better. :) I have been thinking of her all day. You and Jared can give her the best care of all--full of love. I hope she continues to improve all day and sleeps well tonight!