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, February 19, 2010

Feb 19 9:00 pm

Well, the Princess isn't still 100% normal. She just didn't feel quite well today. I'm not convinced that there's nothing going on even if we can't pinpoint exactly what it is. There are tonz of viruses out there...she doesn't have any of the common ones they test for....but that doesn't mean she doesn't have some other one. I don't know what it is but I just know that she's just not herself yet.

The weird thing is that she can be distracted enough (mainly via Benson) to forget about how she feels and act somewhat normal. But you can just tell that even when she's busy, she's just doesn't feel all that great. Today she didn't tolerate her tube feedings well at all. I think she "threw up" every single time we fed her. I don't know what's going on. Her temperature has been higher than her usual, but still not high enough to be a fever.

We're going in tomorrow morning for more labs because the lab didn't draw all the labs they were supposed to this morning. We'll also see the doctor there tomorrow so we'll see what she has to say. She's tired tonight, even after a 3 hour nap, and will hopefully sleep well.

Other than that, Jared and I have enjoyed being home with the kids. We haven't wanted to do anything today...just enjoy being home!!

2 comments:

C said...

What a sweet little girl. I think of her all the time, as well as her parents and family! She is in our prayers. Keep up your good work with keeping 24 hour watch and care for her, I know it can be draining. She is so precious.

Anonymous said...

Jared and Natalie,

I'm sorry to hear that Claire is still not quite herself. I check your blog everyday in hopes that the latest post will be that she's feeling 100% again. I can't even imagine how tiring it must be for you as parents. And of course little Claire. You guys are truly an inspiration to me and my family! I pray that they can figure out what is going on with her and that she'll feel better soon. She sure deserves it!

Erica Blackburn Holmes