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.


Friday, November 20, 2009

Day 67

Yeah for Fridays! I'm always happy to have one more week down--one more week closer to transplant. Claire had another great day today. One week from today she'll get her full-leg cast off and a below-the-knee cast will replace it for at least another three weeks. I am SO excited for her to get a smaller cast that will make it easier for her to move around. This one now is so heavy for such a little one! They put the full-leg cast on so she couldn't walk on it and wouldn't bear weight on it. But last time I was at the orthopedic, he said she could bear weight on it if she was able to. Well, she's able. There isn't much that slows this little one down...and that is definitely a good thing!

Benson and Jared are off to launch a model rocket in the sky!

This is how the princess gets around these days. We are just shocked at how stable she has become walking on her own. She reminds us of a little pirate, limping with a wooden peg leg!


2 comments:

2sisters said...

What a darling little "pirate". She is amazingly mobile with that cast on. Praying for a transplant!!!

Philip, Melissa, & Summer said...

How cute. It reminds me of my nephew who once broke his femur and had a cast all the way up his leg.