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 7, 2012

wednesday

Well, we finally got word about Claire's liver. The test they were waiting for was to see if one particular virus was present in the liver. It came back negative (which I'm assuming is good)...but we are going to start her on a high dose of oral prednisolone to try to get the body to stop rejecting the liver. She'll be on it for 2 weeks and then do labs again to see where we're at. Sounds like a plan.

Claire was happy to be back to ballet class this week! I was lucky enough to sneak a nap in with Mabel this afternoon to get rid of a headache. It worked!
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2 comments:

Ryan & Keri said...

Natalie, how are you? I just caught up on your blog. I missed your optimism and amazing courage. I already feel uplifted, after just 10 minutes of reading. You and your family are such troopers. I LOVE that you savor every family moment--even the not-so-fun ones at the hospital (but you guys make it happy). And I LOVELOVELOVE the pic of the kids rowing in the back yard in their sled boat. Mabel is HUGE now. How did she get that big so fast?? Missing you and thinking of you. And sending lots of prayers your way.

March 8, 2012 at 10:14 PM
Grandpa Terry and Diana said...

Glad to hear about Claire's liver. Hope things continue to move along in a positive manner.

March 10, 2012 at 5:14 PM

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