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.


Saturday, April 17, 2010

Pink Cast Day 1

Claire hasn't felt great today. It is especially painful for her when she wants to change her position. Even just picking her up and setting her back down is not very pleasant. The cast is heavy and still so new that she's just not used to the weight of it yet. The doctor does want her to stay off from her leg (walking) for at least 1-2 weeks. But she's not even kind of interested in walking around at all so at least it's getting a good healing start. She does get board, though. She is definitely not one to just sit around and enjoy watching a movie. She's always on the go! We'll have to go back to our stationary entertainment games for the next few weeks and try to keep her occupied!

I still can't believe this happened. Especially the way it did. When I first heard the crack, I was just convinced (or in denial) that anything serious had happened. I mean who breaks their leg playing ring around the rosie?!?! I was hoping I had just heard a joint pop or something of that sort. As the day slowly progressed, I knew it was more serious that I first hoped. I just didn't want it to be true!!! I feel so bad for her and just didn't want her to have to go through ONE MORE THING! Good thing she's tough. One amazingly tough 2-year old.

Good news is the doctor did say that based on the X-Rays of her bones, her bone strength actually did look MUCH better than what it did last October when she had the other fracture. Her bone strength is still far from a normal child's, but at least it's improving post-transplant. That gives us hope that perhaps things won't always be like this...her bones are/will continue to get stronger!!

Sleeping is rough still for Claire. She's hurts and just can't roll over as she wishes. I know things will get better as the days/weeks go on but these first few might be a bit rough.

3 comments:

chris said...

Sweet dolly. I hope she is able to rest and recoup quickly. She is so much tougher than I am!

~adelle said...

I am glad to hear that her bones are getting stronger. I hope this is the LAST break she gets in a long long time.

Emily Anne said...

Oh my - not the news I wanted to hear about sweet Claire. Hopefully she'll heal up quickly. You guys are still in our prayers.


xo
emily
(bloom)