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.


Sunday, January 3, 2010

Jan 3 8:00 pm

Claire was so disappointed that she couldn't come to church with the rest of us today. She kept saying, "I wanna come Church." We're planning on keeping her home and away from large groups for a while, but she'll get to go again soon enough. Her and Jared had some good bonding time while we were gone.

A great Sunday for everyone! Benson moved up to a new class in Church. He's now a CTR (Choose the Right) 4 because he's 4 years old this year! He was excited to see his age number as part of the class name! A very quiet, nice day for all. And an early night sleep in store for me!

Claire will have labs in the morning and then apts with transplant nurses/doctors in the afternoon. Benson's back to preschool tomorrow and Jared's back to work. I can't even believe how perfect the timing was for Claire's transplant. Jared had two weeks off for Christmas break anyway so he didn't have to take off very much time from work at all. And I think it was good for Benson to not have preschool while everything happened too....helped keep things a little more stable and flexible for him. Perfect timing for all...including Claire. Let the new week, new hospital fun begin!

3 comments:

John & Shauna said...

I am so happy you all are able to be home together. What a nice way to start out 2010.

Amanda said...

I am so so happy for your family. Someone in my ward forwarded me your blog information and I have been following it closely. I have a dear friend with the same condition and was with her when she had her transplant. It has brought back a lot of memories reading about sweet Claire. Congratulations on this new phase in your life!

eclaires said...

I have been following your blog for a little over a month now. You have a special little girl in Claire. And you, your husband, and Benson... special people. I truly believe that God does not give us challenges that we cannot overcome. We have to reach within ourselves to find our strength and call upon Him to magnify and multiply our efforts. You truly exemplify so many admirable qualities and clearly have a wonderful attitude about life. I think that's one reason Claire is so great and so strong. The way that you and your husband lead your family is truly exemplary. You are examples to all of us.

I love reading about Claire and all of what you're going through and the nitty gritty medical stuff is fascinating to me as well. Thank you for sharing and for your honesty.

Give Claire a big hug and a kiss from a friend in Salt Lake City.

I'm so happy you're all home together. You're right, all of this seemed to happen with "perfect" timing.

Happy 2010!