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, March 23, 2010

March 23 9:00 pm

We had so much fun this morning at one of our friend's house for an Easter egg hunt! Benson's favorite part was the treasure hunt, referring to the Easter egg hunt. And all Claire could say was "do it again, again!" Good times with tons of friends to share it with!


Later this afternoon Claire had an eye apt. It went well, except that she hates having the drops put into her eyes to dilate them. Other than that she cooperated well. And things look good. She does have some stigmatism but that has nothing to do with her disease or the transplant...it's just part of being human and not having perfect eyes. But it's not bad enough to have her need glasses...and there is a possibility it will get better and nothing will come of it. She sees well right now so that's what's important! The crystals in her eyes from the oxalate are still there, but it's obviously not getting worse because she has a new liver that produces oxalate normally! According to the ophthalmologist, these crystals don't affect her vision, but some scaring has and will continue to occur...but won't affect her vision. Overall, things went well. They want to see her every 6 months to check up on things. Nice to have that one done for the next half a year!

Other labs for Claire are still looking good. Her liver numbers are still coming down, but are not normal yet. I wish they'd be normal!!!!....but can't complain because they're at least still headed down....slowly. Her blood level (hemoglobin) was a little lower than expected, which was kind of a surprise because we've been cutting down on the number of blood draws....so we'll just keep watching that and hope it gets back up. She looks and feels great, though!! Still a little cough and runny nose here and there, but really nothing. Just enough to say she's not 100% cold free--good enough to feel and act well!

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