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, February 22, 2010

Feb 22 8:30 pm

This picture says a lot: Claire is feeling, acting, looking, and playing A LOT better!! She had a great day today and seems to be back on the right track. Her labs look good for the most part; a few minor medication changes and additions, but overall, she's great! We've almost got her back up to the volume of food she needs to be getting and she's tolerating it fine. I think last week was just all around a crazy week with random things that occurred with no explanation. Hopefully whatever it was has come and gone and won't be back soon!

More labs and doctor visits on Wednesday and Friday this week.

Claire loves to take my blood pressure while we wait for the doctor to come in. It's pay-back time for me as she says over and over to me, "Just one more time, mommy. One more time!" She loves to write down the numbers in her record book. Nursing school has come a bit early for this little one. She's going to have it all figured out before long!

3 comments:

** Adrian ** said...

That is so stinkin' cute! Claire would make a FANTASTIC nurse!! My very favorite nurse during my stay at the hospital on bed rest was a nurse that had recovered from cancer. She knew what it felt like to be a patient -- & she treated her patients very well because of that!! Claire would definitely be able to relate to people like my nurse did. I guess she has a few more years before she'll be choosing a career!! ;) I'm so glad to hear she is doing better! I hope her Dr. visits & labs go well on Wednesday & Friday. Give Benson & Claire a big hug & kiss from us!! Love you guys!!

Lauren said...

I bet she will be an amazing nurse someday if she chooses that path. What a fantastic picture.

~adelle said...

She can come take care of me. I think that would be awesome. :) What a cutie pie. Glad she is feeling better. Weird stuff. Enjoy your week.