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, April 14, 2010

Home again home again

We're home and all is well! Claire is still a bit sore and bruised from the surgery but overall acts pretty much like herself! She will go in tomorrow for blood work.

One is focusing hard on the tv ~ the other focusing possibly harder on eating that Cheerio. Claire actually ate and swallowed 2 cheerios!! And tonight at dinner, she ate (chewed and swallowed--not just put in the mouth and spit out), two macaroni noodles!! That is amazing for this amazing little one! Definite progress.

Claire was the keeper of her door. She would stand there and wave at people, go out and help the nurses when they had a job for her to do, or push her baby around in the stroller. She didn't stay on "bed rest" for long at all.

Look at that HAIR!! It gets really curly when it's wet...in this case with sweat from laying in her bed.

And here's the site. It will look much better in a week or so when things heal up a bit. In this picture the port is still accessed with the needle in it for her antibiotics to go through. The needle and tube will come out and leave nothing hanging at all when she's de-accessed.

2 comments:

~adelle said...

You are all so brave. I would be a wreck if I had to deal with everything you have been through. A serious wreck. Icky business. I am glad things went well. Benson will probably grow up to be a doctor someday!

Give kisses to both kiddos for me. I send my love!!

Rebecca said...

I'm so happy things went well! Where did she get that curly hair? Is it from you? She's such a doll! Miss you guys.