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.


Friday, October 16, 2009

Oct 16

It's been exactly 2 weeks since Claire went for an in-and-out-surgery to replace her hemo dialysis catheter. One slip of the hand and it all went wrong. Open heart surgery, "asleep" for 6 days as they tried to literally save her life each day, and 4 days at home recovering.....AND HERE WE ARE! Crazy to think of where we've been these past two week and how much that has altered our future.

Things are looking up today! Claire had such a good day. We got to take the last medicine patch off her shoulder this morning and within an hour I could already tell a difference. She said more words today then I've heard since she's been 'awake.' She was playing, interacting, and enjoying just about anything we put in front of her. It was like it was all brand new...but yet so familiar. She had such a good time on dialysis too. Benson came (which I'm sure helped her mood) and they had a tea party, read books, and watched Chicken Little. They were both chuckling at the movie and at each other! So cute. Benson really does love to be there with Claire and especially loves laying next to her in the crib. It makes all 3 of us happy!

The other big news of the day is that Claire walked on her own! Before the surgery she was walking, running, and even jumping all over the place. Today is the first day since then that she has walked on her own! She wasn't completely stable because she still really favors her non-clotted leg; but pushing her stroller around really helped her balance and gave her something to take some of the weight off her leg. It was so fun to see her pushing her baby dolls again! Happy faces all around!

5 comments:

Sheri said...

Such happy news to hear of Claire's improvements! Hurray for doll strollers!

JoAnna said...

Hooray! Hooray! Hooray!! This makes my heart happy!
It is crazy to think of two weeks ago today, I'm sure.

Unknown said...

Ahh.. I am so happy for you guys. Good news! I'm guessing that means her clot is getting a lot better because she is walking. Yeah!

Ami said...

It's great to hear how much she has improved! I love reading about how much Benson and Claire love to be together. What a blessing!

~adelle said...

I am so glad she is continuing to improve! :) YEAH!