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, February 9, 2010

Feb 9 8:45 pm

Claire's liver labs from yesterday are still quite high. They had been coming down the past few times we've tested them, but now they are hanging a bit high. Ugh!! We've got to figure out what's wrong! And the rash is not better, but definitely not worse. She hasn't been incredibly itchy the past two days but we are going in tomorrow to see the Infections Disease team as well as the Dermatologist. We'll get both their opinions about the rash/itchiness and hopefully come up with some kind of a solution from there. We did stop one other of her meds on Friday night and since then, things have been improving. So I'm wondering if it was an allergic reaction to that. Who knows.

I'm not sure what's going to be done about investigating the liver issue yet. I talked with them yesterday and they were going to get back with me. We've just kind of been expecting the numbers to come down to normal on their own, but this last test didn't show the improvement we were hoping for.

Claire still feels well. No fever, lots of energy, and happy! So that's a bonus. But if something internally is not right we gotta figure out what it is!

We are having fun with family and a nice snow storm these past few days! Gotta love it.

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