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.

Monday, November 23, 2009

Day 70

We got off to a slow start today and had to wait almost ONE HOUR for the lab people to come before we could start dialysis. It's just slightly frustrating to wake up early, get two kids ready and out the door by 7:40, and then not start Claire's dialysis till just before 9:00. But that's just the way the ball rolled today. Most days we get a quick start and she is on the clock by 8:20ish; but whenever there are blood draws to be done pre-dialysis, there's no telling how long the delay may be. Gratefully, that's not every day! Everything went well after we got her up and going, and Claire was of course very patient with everything.

Benson went to preschool and came home with a black thanksgiving top hat! So fun! Benson has a big day tomorrow. We will be doing some tests on his kidneys, oxalate levels, and other things to see how his body is keeping up with the overload of oxalate his body is producing. He hasn't been tested for a few months, so I'm anxious to get those results. He will also have an ultrasound done on his kidneys tomorrow to see if any stones are forming or if there are any changes from the last one. We will meet with the doctor on Friday afternoon specifically for Benson to discuss the results.

I get a late-night out with some friends to go see New Moon! I'm so excited!!

In honor of the warmth that we won't be seeing for quite some time!
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1 comment:

~adelle said...

SO did you like the movie???

November 24, 2009 at 7:43 PM

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