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.

Tuesday, August 30, 2011

how life is

Little Claire will get 3 pokes in her arm this week for blood work! Of course once you take out the port, since she's only doing labs once a month, something comes up and she needs blood work 3 times in one week! Isn't that just how life goes?!

Claire has had some diarrhea since we've been back from our vacation and it hasn't gone away. We did a stool culture last week and everything has come back negative so we did some blood work on Monday to see what else may be going on. Her liver numbers had increased about 3 times as much as they were (the wrong way) and her potassium was high. Kidney function is good, so that's a bonus, right?!

We did blood work again today to test the potassium and it was down a bit, so the doctors feel comfortable with that; then she'll do blood work again on Thursday to see how the liver numbers are trending. I'm not super surprised that her liver numbers are up. It seems like whenever she gets any type of sickness, those numbers go up. Nevertheless, we still have to double check everything else to make sure we're not overlooking something else.

I really hope this doesn't drag on too long. We've got birthday parties to throw and school to BEGIN!

In the mean time, Mabel is discovering new things every day now that she's mobile. Like the joys of the kleenex box!



"It's great, mom! No matter how many I pull out, another one just pops right up!"
Posted by at

No comments:

Post a Comment

Subscribe to: Post Comments (Atom)