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, February 15, 2010

Feb 15 12:30 pm

Things are looking better this morning. She had a much better night than any of us expected. She was exhausted so she slept as good as anyone can in a hospital. She did start going potty by herself again, after a few close calls and "threats" of a catheter....but she's done it. It still is very curious to ALL of us why she would be holding her pee in. She's never done that before and there's got to be a reason for it....some kind of discomfort or something! (((Unless she's just ready to potty train....but we haven't been working on it at all and I don't know why out of the blue, one day she would just start doing that...weird. And still when it's uncomfortable enough, she should just let it go regardless!))) Still investigating.

Her liver numbers actually were better this morning than they were last night (crazy how quickly they can fluxuate) but they do still want to do a liver biopsy either tonight or tomorrow. They will also do an ultrasound of both the kidney and liver to see if that shines any light as to what's going on.

She's had 3 doses of vanco (the antibiotic) and is feeling much MUCH better. So far her blood cultures are still negative, but they will keep her inpatient in the hospital for 48 hours after the blood culture was drawn to see if they come back positive during that time.

She finally wanted to stand up and walk around just about an hour ago and is acting much more like herself again.

Still some questions to be answered and tests to be done, but we are feeling much more positive about how things are going. Thanks for the prayers and good wishes!!

Crazy coincidence: Gifty was admitted to the hospital last night because of a high fever and elevated liver numbers. Lots of unanswered questions from her end as well. ((Gifty is the little girl, just a few months older than Claire, who received the other half of the liver that Claire has.))

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