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, October 25, 2009

Oct 25

We can usually rest assured that Sunday will be a good day. Pancake and egg breakfast. Church. Afternoon nap (kind of). Family play-time. No transplant call. Good day!

Pushing her IV pole around the house. Kind of like a stroller...with no baby.
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2 comments:

J & M Shumate Family said...

Just got caught up on your blog. Glad to hear Claire is doing better and better. I feel bad she is going to have Lovenox shots for so long. Poor little one! We still miss you all. Sis Amason misses Benson SOOO much. We are all praying for you!!! HUGS!!

October 25, 2009 at 10:10 PM
Anonymous said...

Hello! I stumbled upon your blog and just wanted to let you know that my thoughts are with you and your darling family. I am a pediatric dialysis nurse in UT and couldn't help, but be touched by your story. I hope it is not weird to leave a message, but I hold a special place for dialysis kids in my heart. Although I do not know what your family is going through at this time, I have a small glimpse of what dialysis every week, for hours, is like. I hope the very best for your family. I will be praying for your children, along with my dialysis kids, to hopefully receive a transplant soon!

October 26, 2009 at 1:56 PM

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