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.


Thursday, May 20, 2010

May 20 8:00 pm

The report about Claire's blood clot is good. It is definitely getting smaller but still not where they'd like to see it. So we'll continue with the heparin shots for another 2 months. At least the blood thinner is doing it's job and we haven't had any other complications from it. We also got Claire's leg measured today for a brace. She wasn't too excited about the idea; mostly because we had to put a temporary cast on--and then take it right off--just to get a mold of her leg so they can make the brace custom to her leg. But I really think it will be good to have. She is still limping a bit on her leg when she walks and I think this will help support it and protect it from further injuries. It should be ready the first of next week.

Yesterday when Claire and I were at the hospital for her medicine shindig (which is still going well) we were playing dinosaurs. Our dinosaurs were chasing after each other and making the loud roaaaaaaaarrrrring sounds as all good pretend dinosaurs do. Then Claire put hers on the arm of the chair and pushed it off the cliff. It was injured, of course, so I decided to have my dinosaur follow his friend and fall off the cliff. We talked for a minute about how they were injured and then after a few seconds of thinking (and ready to play again) Claire said, "It's okay mommy. They have a new liver now. They're all better!" And we continued our dinosaur fun!!

Look what Benson can do. No training wheels! I love this look on his face.


1 comment:

Megan said...

Reminds me of Ben...learning how to ride a bike without training wheels down a grassy hill.