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.


Tuesday, March 30, 2010

March 30 7:00 pm

Claire started some antibiotics today and hopefully that will do the trick for her infected catheter. We'll see after 7 days how it looks. She feels fine (other than that cough that just won't go away) and hasn't had any fever to indicate the infection has gotten into her blood stream. Hopefully it stays that way.

Benson had what he called a garage sell today with cups of water. First it was hot water he had warmed up in the microwave but for round 2 I convinced him to use cold water. He set up 8 cups of water on the stool and wrote a sign that said garage sell. He sat at his step stool and gave Jared and I just as many cups of water as we could stand to drink! I say gave but he did make us pay for them. Why else do a garage sell if you're not going to get some $$ out of it?! But he was also generous enough to let us use his coin purse full of change to buy them from him! Loved it.

4 comments:

Ryan & Keri said...

Okay, this makes me laugh so hard! What a funny boy! And we hope Claire's infection gets better soon.

Samina said...

Hope Claire gets better.

Nikki said...

I can't eait until Ella is old enought o start doing these things!

Nikki

Momma bear said...

YOUR KIDS HAVE PH1???? So do two of mine the rest of us carry the gene for this horriable deiase!!!