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, April 12, 2012

Thursday

Well....the results from the kidney biopsy are great! No worries there at all. Good. Mark that organ off the list. Now if we could just get the liver on that list!

They tested Claire for a particular virus called CMV on Tuesday and it came back positive. Kind of crazy because it hasn't made her sick at all. We only know she has it because of a blood test. Her liver doctor thinks that's the reason her liver numbers jumped so high last week. We know it's not rejection, and the stretch of the bile duct went so well that we know there's not a problem there...so we're concluding the elevated numbers are from this CMV virus. So he's going to get her off her prednisolone faster so her own immune system can kick in and fight this virus off. Instead of it taking 6 weeks to stop her prednisolone, it will only take 4. Hopefully within the next two weeks, her body will be able to fight off the CMV virus and her liver numbers will return to normal. Or at least close to normal! That's the hope. We'll see if the hopes turn into reality.

In the mean time, everyone is happy, healthy (well, kind of not Mabel but I think she might be teething) and just a tid bit crazy! We've got some major kitchen construction going on here. Floors, cabinets, counters. It's a disaster. Bits and pieces of the kitchen are placed all around the house...so we're just trying to survive the demolition project! Fun stuff. It'll be even funner when it's done!

2 comments:

Stephanie said...

fun to read good news about Claire. Thanks for all the updates on your blog, it is fun to stay up to date on you guys. I need to do a little bit better

Grandpa Terry and Diana said...

Glad to hear about the kidney. And yes if we can only get the liver on board. Some things take longer than others.

Hang in there.