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.


Monday, March 12, 2012

monday

Around here...we're just trying to stay healthy! And so far, it's working! I've heard from some of our friends about a yucky stomach/fever causing bug going around...so we're pretty much isolating ourselves from the rest of the community! Claire doesn't need any sort of "bug" to deal with and I'm still trying to get over my cough. So the kids stayed home from church yesterday and preschool this morning, but did get out on a nice walk this afternoon. I'm so excited to have some warmer air!!

Claire is definitely not herself with the start of the high dose prednisolone. Her tummy hurts pretty much most of the day, and she is hungry on top of that...all the time. Which in her case is a good thing. But she's just not really herself at all. She doesn't have much energy and her moods/temperament are different. I'm glad this is only a temporary dose for the next two weeks and hope things look better by then so she can get off this med and get back to feeling herself.

2 comments:

~adelle said...

Poor Claire. I hate tummy aches. It is so hard to be fun and happy when you just don't feel right! I hope things improve in that regard.

I am also anxious for better warmer spring-like weather. Spring Fever is the kind of sickness we have at our house at the moment. :) I'll try not to share it around...

Grandpa Terry and Diana said...

Hope Claire gets feeling better. Spring is just around the corner and it will be great to be outdoors.
Hope things get better real soon for Claire.