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.


Monday, September 28, 2009

Day 14

Yeah, we had a great Monday! We barley escaped an extra hour and a half at dialysis because Claire's red port on her catheter wasn't working so well, again. BUT it ended up working good enough to get the job done. We put medicine (TPA) in it again after dialysis so it should work well tomorrow. I've just been smiling at Claire all day today. She is such a character and her little personality is just starting to BURST through! She sings funny songs all the time like using the words of 'row row row your boat' to the tune of 'twinkle twinkle little star!' Now that takes talent! She loves to just randomly break out with "Eeee I Eeeee I Oooooo!" at the top of her lungs! She makes funniest faces and had Benson and I cracking up numerous times today!

Here she is walking around the house with her vacuum, using a magnet as a phone, saying "hello, ya ya ya, okay, bye bye"

3 comments:

Melissa said...

So cute! Don't you just love it when they sing?

** Adrian ** said...

That photo is SOOO darling!!! I love it when they use ANYTHING for their "phone" & it's so cute hearing them have their little conversations!!! TOOO CUTE!!!

How fun that she makes up her own little songs?!?! Marcie was ALWAYS singing her own songs when she was little. I loved it!!! Claire is growing up so fast!

Mary said...

She is so cute! Glad that she had a good day at dialysis! We miss you guys, just today Ella told me that she loves Benson! Awesome job on all of the fund raising...hooray!!!