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, March 9, 2011

picts and update

Claire had a rough night and morning, but was feeling much better by the afternoon. She was tired and ornery....I think "sick" of people bugging her, if you can imagine that. But surprisingly didn't sleep this afternoon. She was much too busy watching Dora. Although I did get her to switch things up a bit with an episode or two of Barney. Even better, right?!

They determined which bacteria it was that is causing all the problems and are still trying to figure out the best way to treat it. She will need an IV antibiotic for 10-14 days to treat the infection, they just need to figure out how to do that on an out patient basis. They also haven't determined yet for sure HOW she got this infection.

She'll stay the night again with Jared. There hasn't been any talk yet about having her go home tomorrow, but I'm hoping for it. I think it's more likely she'll go home Friday. We'll see.


Mabel...learning from the pro.

The three musketeers

I'm the star patient's (sister)

Sleeping on the job...holding syringes

Lego time with brother

1 comment:

Grandpa Terry and Diana said...

The kids look at home at there home away from home.

It is good that they can support and love each other regardless where there are.

We do the same we love you regaardless where you are.