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.


Sunday, November 15, 2009

Day 62

((The online auction closes tomorrow at midnight!!))

It's been a very peaceful, relaxing Sunday. Just how we like them. Benson came down with a pretty bad cough Saturday, so we kept him home from Church today. The highlight of the day for Benson and Claire was the blanket hut we made while Daddy was at church. What little kid doesn't like playing in a blanket hut?! Reading book after book (and then making a road out of the books for the monster trucks to drive on) was so much more fun inside the hut than it would have been without! I even enjoyed being enclosed in an envelop of blankets!

Claire is really trying to get around the house, even with her left leg in a cast. She walks along the furniture and even tries to push her stroller and use it as a walker. But it is even more dangerous with her leg in a cast than it would be without! She's so unsteady because she can't step flat on that leg. I can't seem to ever get an pictures/footage of it because I'm too nervous that she's going to topple over again. It's hard to leave her side when she's on a mission to get somewhere! But I'm happy to see her feeling so well and making do with the circumstances before her! That's what life's all about, right?!!

Claire will get an ultrasound of her right leg with the blood clot this Tuesday. I'm excited to hear the report about that and see what progress has been made. It just doesn't get any easier to give her shots every time the clock strikes 4.

Besides that, it should be a quiet week. Unless the phone rings with a transplant call! Wouldn't that be great?! I'm looking forward to it more and more lately!


1 comment:

Camille said...

Such darling kids you've got there! And that is one serious tent. How fun!