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.


Thursday, September 24, 2009

Day 10

Today we got off to a slow start because the machine wasn't ready when we got there. Only slightly bothersome...but can't let something like that throw things off. It could be a lot worse (as we've experienced in days past). A half and hour later we were up and going and had a smooth run from there on out. The medicine (TPA) we put in her catheter ports helps her run a lot better and we're going to start putting that in more often. Benson came to with us again and he was such a good boy today. He watched Cars while we watched Baby Einstein, we played bubbles, had a tea party, read a book or two, played puppets, and sang a few songs. Benson and I took a walk around the hospital, which inevitably turned into a race that he won, of course.

Claire got her dressing changed today on her catheter. (Meaning they take off the old bandage/tegaderm/tape that holds the line in place, clean it, and tape it all back up again).
We do this once a week. I think today is the first day I can remember that she hasn't fussed a single word about it. I held her the whole time and she seriously never whimpered a word of complaint. She holds her arm up the whole time and takes it all in like a champ. Amazing.

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