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, March 10, 2010

March 10 9:30 pm

Darn it. Claire and Jared have the cold now too. Benson and I are still getting over ours. The cough is linger on and on and on!! Claire is doing pretty well even with the cold though. So far so good. She will have labs again tomorrow morning. Her desire to eat has definitely diminished. NOT gone, but decreased. Some of which I'm sure is because she has a cold/cough....and some probably also attributed to the drop in her prednisolone dose. Oh well. At least we made a few steps forward!!

Benson's new favorite thing: every time we say "ya" instead of "you" he corrects us. "It's you not ya, silly!" I never realized how much I said ya until now!! And he doesn't miss a single correction!! At least we have a want-to-be English major in our home now!

1 comment:

~adelle said...

I am so ready for this winter to be over! It seems like those darn colds just go around and around and around. Hope you all can get some good rest and get better soon.