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, March 22, 2012

Packin' up

This picture is sooooooo Claire! She loves bags, babies, strollers and shopping carts. She loves having her hands full. She loves filling up bags, boxes, and containers with....whatever! For example, we just bought some new large muffin tin liners and today I saw the container for those liners inside her Mayo clinic bag with a bottle sitting inside. She had neatly emptied all the muffin liners and stole the container for her own!! When I got home from the dentist on Tuesday, I had a small bag full of "dental" goodies ie: toothbrush, floss, mouthwash, and coupons. She kept asking all afternoon if she could unpack my dentist bag for me. I thought she was just begin nice, offering to help me out....but her real motive was to GET THAT BAG!!! She is hilarious. She loves packin' it up and headin' out...down (stairs) or around (the house). Don't know how that green Easter basket lucked out to be empty!

We got Claire's lab results back yesterday and the liver numbers aren't worse, but they're not significantly better by any means either. Darn. The doctor wants to do blood work again tomorrow and then biopsy the liver again on Tuesday. If there are still signs of rejection based on the biopsy, they will come up with an alternative way to treat the rejection. I guess the prednisolone doesn't seem to be "enough" this time...but it sure is doing it's job increasing her appetite. It is absolutely amazing how much this girl is eating! She told me the other day, "Mom, just so you know, I only need a snack every couple of minutes. That's all that will make my tummy happy." Favorite foods this week: bananas, cheesy toast, Nilla wafers, grapes, green veggies, cheerios, and just about anything else you put on her plate!

1 comment:

Grandpa Terry and Diana said...

That Claire is one to keep you on your toes. You just never know what she is going to come up with next.

We wouldn't want her to be any other way.

Love her just the way she is.