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, May 17, 2011

Is that quiet I hear??

It's 7:23 pm. The kids are ALL in bed. Dinner is cleaned up. Jared is at scouts. This house is silent. This is a momentous, rare, never-before seen occasion. I suppose I'll start here with a little Skinner family update. (i know, it's been a while).

Claire is doing great. She had two weeks off from any sort of medical attention...and I think that may just be a life-time record for her. Sad, but probably true! And her labs today were great! Liver numbers have improved, although some still not within the normal range...but trending down is good. Kidney function is great as well. Two more weeks!

But just because we don't have days at the hospital doesn't mean they don't still have hospital fun! That's just the way things roll around here.

Benson is officially training-wheels-free on his bike and loves it! He is super good balancing and hardly ever falls. Here he is with one of his best buddies in their matching Mario shirts. A shirt I think we're going to be seeing a lot of this summer.

Benson also got to go with Jared to see a Monster Truck show. Need I say more?! They had a great time, even in the rain and mud...or should I say, especially in the rain and mud!



Mabel celebrated her half-birthday! What?! She's already been out of my tummy for 6 whole months!! Crazy!!! She LOVES to eat, laugh at jumping siblings, sleep, walk in her walker, chew on anything placed even remotely near her mouth, and is on the verge of sitting up alone and rolling over (back to front). She couldn't be cuter, sweeter, happier or more pleasant. She is truly a gift.

I always tell the kids they can't over Mabel's face up when they're playing with her....and this is what they usually come up with.

Life is good.

I'm off....time is of the essence here!!

2 comments:

Grandpa Terry and Diana said...

Loved seeing the pictures and hearing the good things about the family.

Keep up the good work. And Benson and Claire you have a few more years before you can practice real medicine. Till then keep practicing on Mabel.

~adelle said...

Looks like things are going well out there for everyone. Love to hear that! Hope you got to enjoy that quiet time. Those are treasured moments to be sure!!