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, December 17, 2009

12:15 am

12:15 a.m. They took her from my arms and we watched them walk into the operating room. Tears. Prayers. Peace.

Claire was literally running around in the PICU up until just after 11:00. We can't believe she is walking/running so well after just getting her cast off today. Like I've said before, NOTING is going to stop this girl from living the life she wants to live!! She sensed something was different today. We talked with her all about what was going to happen and she kept saying, "new kidney, new liver, no dialysis." She's one smart cookie and doesn't miss a beat. With no nap and being up way past her bedtime, she was amazingly happy, content, joyful, and peaceful. So are we. She finally fell asleep watching Dora just after 11. We're going to try to get some sleep now too. Try being the key word. Peace has filled our hearts. Prayer works.

6 comments:

Unknown said...

Hi Nat,

It is my first time leaving comment on your blog. I have been reading your blog after I knew it from my ex-co-worker's wife's blog. I'm very happy for your family. Claire is a very tough and cute girl. You guys will always be in my prayer.

Love,
Yuki

JoAnna said...

Thank you thank you for the updates!!! Cannot stop thinking of you!

Unknown said...

so far so good. now it just needs to stay tht way!

Anonymous said...

May God Bless you and your family. Claire is such a sweet little girl!! Prayers going out for the doctors and nurses this morning.

Auntie Em said...

Prayers for Claire, for you and your family, and for all the doctors and staff who are taking good care of her. She's a wonder!

Schroeder's in a NUT SHELL! said...

Claire and your family are in our Prayers.....what a Christmas Miracle! I'm Staci's mom and have been following your blog closely...what a beautiful little family you have...such strength for all of us to follow....