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.


Wednesday, December 9, 2009

Day 86

We braved the elements today and with over a foot of snow throughout the night, made it to dialysis only 10 minutes late! But I don't take any credit myself. Jared made it all happen. He cleared the driveway and vehicles early this morning and even dropped us off / picked us up from the hospital in the truck! He's such a good dad and husband. Benson's preschool was canceled so we had another fun-packed hospital day today! The snow is beautiful. Especially since I didn't have to drive in it.


The snow princess

Funny story. The hospital was pretty empty today, but there was one old man sitting in a chair by the elevator as we headed out. As we walked by he said, "oh what a cute little kid," pointing to Claire. "Is it a little boy or girl?" I'm going to give him the benefit of the doubt and assume that he's probably color blind or just doesn't quite remember the gender difference between pink and blue. Made me smile!

The BLOOM online auction starts tomorrow! And it is only going to be three days, December 10-12. Be sure to check it out!

4 comments:

The Vintage Vignette said...

Hello Spencer Family!

My name is Cindy Shea and I am a mixed media artist and blogger and I am so excited to be participating in the silent auction for Benson and Claire tommorow!

I came across your story quite by accident but it has forever changed my resolve to do more. You see, my father is also awaiting a kidney transplant and has been on the list for close to 6 years now. He too must perform dialyses daily to remain healthy. He dialyzes at home through the peritoneal cavity every three hours of the day and gets to rest at night before beginning all over again in the morning.

He has maintained this routine for several years very sucessfully. I have always been there to help him by staying with him for hospitalizations and other treatments but reading about your awesome kids and you as parents has encouraged me to step up my game a bit! There are so many family's like mine and yours who need the help of others to spread the word about the needs of those awaiting any kind of transplantation and I am certainly going to learn about how I can do more for other families now!

I am so very excited to particiapate in the auction tommorow and I have donated one of my very best glass jewelry designs in hopes that it helps out. If you get a chance, please visit my blog at www.thevintagevignette.blogspot.com to get a sneak peak!

I have also posted your family's story and blog banner as well as information about the auction. Thanks for inspiring me and so many others.

Cindy Shea :)

~adelle said...

Nat, you guys are getting to be famous! :) I love it. I also love that Claire COULDN'T be MORE GIRL in that outfit. People are hilarious. Glad you didn't have to drive in the snow. You got a ton! That is awesome for the Christmas spirit, but not so awesome for driving.

The Vintage Vignette said...

I just realized I referred to you all as the "Spencer" family...So sorry I meant SKINNER family :o) I was up very late last night when I left my comment for you all...lol :)

Randi said...

Claire looks so cute all bundled up! We are thinking about you guys and miss you! Hang in there.
Love,
The Welchs