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.


Friday, April 23, 2010

good friday

Claire's cast leg looks good! And we all are in agreement that there may be something else bothering Claire (in relation to her leg) but it's nothing major...and she seems less and less bothered by it every day. So perhaps it was just a pulled mussel or something...but nothing else major showed up on the x-ray today. So that's good. The leg is healing well. She's began scooting herself around the house again, just on her little behind, but at least she's feeling well enough to move a little. She was pretty disappointed when Benson wanted all of us to go play outside yesterday. She cried, "but my cast!! Can't go outside..." However she did enjoy watching Benson and I play soccer (Benson's new passion) from her stroller. A little fresh, warm air did ALL of us good!

Other labs from this week are also looking good. The liver numbers are back down. As usual, they're still not quite normal, but down is good. Kidney function is awesome and everything else looks to be in line as well! I'm so happy for another weekend...especially after a week like this!

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