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.


Wednesday, August 25, 2010

Aug 25 10:30 pm

One indicator of how our day has been could be told by the number of hospital prizes Claire ends up with by the end of the day. Today she came home with a purple striped duck, a blue stripped duck (chosen specifically for brother), a princess duck with a crown on it, a pig duck, a plush yellow duck, and 4 stickers--2 for her 2 for brother. (yes, she likes ducks). I know...the long hospital days were supposed to be over with! And they were. Until about noon. Out of no where, she simply started not feeling well. Without Claire being able to tell me exactly what was wrong, I would describe her symptoms as mostly achy and nauseated. And it only got worse as the afternoon came on. We put her down for a nap but it didn't last long. She slept for an hour and then just moaned and groaned. She even fell asleep with me on the couch for a few minutes (until Benson needed some more drink) after her nap...which she's never done before. She simply didn't feel well. No fever. Just not well.

Her doctor requested we come in to do blood work and let her look at her. Her blood work looked fine and our doctor was puzzled as to what was causing her discomfort. After we met with the doctor, she requested Claire have blood cultures drawn, just to make sure there isn't some kind of infection within her body. So we did blood work again-hens the extra set of ducks and stickers. Twice the pokes means twice the prizes! Poor princess. I hate seeing her so miserable like this, especially without a good explanation. Our hope is she sleeps it off and feels her fabulous self again in the morning. So far she's been resting well tonight...so we'll see what the day brings tomorrow.

2 comments:

Terry said...

Hope they soon find out what is the cause of discomfort for little Claire.

Hope by the time you get this that things are improving.

John & Shauna said...

Ahhh. It been a little while since we have checked in. Claire and Benson are growing so fast. Claire is such a pretty girl. I love her eyebrows. I hope you are find out soon why is she isn't feeling well. we will keep her in our prayers. By the way, you look adorable pregnant. You are so little. Lucky girl.