We had a good day today. Claire's liver labs were repeated today and they are still elevated, but have gone down by half since yesterday. Normal (for one of the levels) is between 7-45. Claire's level was 12 a week and a half ago. Monday morning it was 427! But today it was down to 251. So it is still high, but at least headed in the right direction. The tests for some of the common viruses she may have gotten came back negative today, so we're not quite sure what has caused this all to happen. But at least everything has checked out to be "normal" so far. Hopefully those liver numbers will find their way back down within the normal range and we can just scratch our head and move on!
Claire is feeling, looking, and acting great! Her rash is pretty much gone so she's much happier, content, and rested after getting over that. Still not quite sure what caused that either. I'm still leaning towards the velvety fabric from the dress....but I'm not about to put it on again just to see if that was it or not!
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, January 27, 2010
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1 comment:
I am SO relieved! I have been thinking of you nearly every moment since you told me the tests were elevated. No more velvety fabric for you!! :)
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