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.


Thursday, October 15, 2009

Oct 15

Claire had a better day today. She was miserable at first on dialysis but then when I cuddled with her on my lap, she settled right down and had a pleasant run on dialysis. Her doctor even got her to blow her a kiss bye bye! We were all shocked she did it, but she did! The first blown kiss for at least 2 weeks! That's a good sign.

The meds from the surgery are definitely wearing off. They're not 100% gone yet, but she is getting to be more herself. She actually still has one patch of medicine on her shoulder that is still helping her wean off the meds, but we get to take that off tomorrow. Then she'll be officially medicine free! I hope she starts talking more when that comes off. She still is super quiet...nods and shakes her head for answers but really hardly says anything else. I'm sure it will come around.

Her body seems to ache a lot. She looks at her poked and vein-blown hands all the time and it really hurts her to change her diaper; some of which is from the blood clot and some from the pokes she gets twice a day for her heparin shots. We rotate those in the legs instead of the abdomen because we thought it would be less painful for her...and easier access. She just doesn't have a lot of flab around her stomach to pinch up for a shot! Imagine that.

Her leg is even looking better today! It didn't look as swollen and it didn't seem to bother her as much. She even stood on her feet for a few minutes and she used help limping from one spot to another. It is still painful and she definitely favors the other leg, but at least we saw a slight glimpse of improvement. We'll take whatever we can get!

She was a cuddle bug today. Lots of hugs, loves, and cuddles. It was great!


These were taken just before she was discharged from the hospital two days ago but she still does this all the time! Her facial expressions say it all!




1 comment:

~adelle said...

First: That puppet she is holding is so cute!
Second: I bet she does hurt all over. Poor thing.
Third: Mommies give the best hugs and snuggles in the world. That is exactly what makes the world okay again.
Fourth: That is one lucky doctor to get the first kiss blow.
Fifth: I hope hope hope that her leg continues to heal.