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.


Saturday, December 26, 2009

Dec 26 4:00 pm

We gotta get this girl to peeeeee!

We took the urine catheter out again this morning. When she's calm, relaxed, or resting (which isn't all that often) she goes potty fine. But if she's busy, uncomfortable, or uneasy, she won't go. She has to have a wet diaper every 2 hours or they use a temporary catheter to get the urine out. We've only had to do that once so far today but we really don't want to have to put another permanent catheter in again. Pee Claire Pee!

Other than that, she's doing well. Not much different than yesterday. She is now more engaged with toys and playing. We just have to help her focus on something different and get her mind off saying all done.

Gifty is doing better today. They took the breathing tube out this morning and they were relieved to have her breathing on her own. The brain surgeons are really hopeful that she won't have serious brain damage from the surgery; but no one knows for sure how she'll be until she wakes up and is more alert. Her parents are so relieved and feeling hopeful about the future. So far her liver is working well! Things are looking more hopeful every day for her.

2 comments:

Miss L said...

I'm delurking to let you know how thankful our family is for you updating us on Claire and Gifty. I know it's lots of work, but we have been following your journey for a while and have really appreciated knowing how both girls are doing at this important time (and it let's us know specific things to pray for!).

Again, thank you for all you are doing. You and your sweet family are an inspiration! Soon it will, indeed, be "all done."

Wishing you all continued healing, rest, and happy holidays! :)

Kara said...

Natalie I am so happy for your cute little family! I hope that everything from here on out is only good news:) I hope you have and will have a wonderful holiday!!!