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, April 19, 2010

Feeling better

Well, Claire is feeling better and figuring out how to get around. She's been scooting around the house with an occasional roll when on the rug. She hasn't tried to crawl yet, but she's definitely happy to be able to get somewhere!

We did labs today and the port that was placed last Tuesday works like a charm!! No problems whatsoever! That's a relief and blessing. SO much easier than poking her arm and even easier than a dialysis catheter--it's so much less maintenance and nothing is hanging out! I love it! We'll get the lab results back tomorrow.
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1 comment:

Unknown said...

So glad she's doing a bit better and that she doesn't have to get poked so often now! We've got you guys first in line in our prayers and we really hope she continues to feel better and not be in pain. Praying for you too, mom and dad!

April 21, 2010 at 7:00 AM

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