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, October 19, 2009

Oct 19

With a little disappointment, they told me they were not going to do the ultrasound of her leg today. Tomorrow Claire and I will see one of the doctors who has been following the blood clot in the hematology dept. He will then decide where to go from there. I'm kind of surprised they aren't doing the ultrasound before we see the doctor, so they have a current base line to go from...but what do I know! We'll see what he tells us tomorrow and go from there.

11:00 appointment means 7:00 dialysis so I'm shooting for a 10:00 bed time!!

Hand-fulls of fun today!


The latest scar to her abdomen.

6 comments:

John & Shauna said...

I was looking forward to hearing how the appointment went. I guess I will have to wait until tomorrow. It's so good to see a happy Claire again. She is adorable.

Anonymous said...

This is my first time visiting your website. God bless your family. I am praying for Claire and Benson.

What a trooper Claire is. She is precious.

Anonymous said...

xoxo.
Our prayers are with you.

Crystal Taylor said...

Natalie,
Wow! I found your blog and info on Natalie Fredrick's blog. I want to help. I'll be emailing you. Your kids are so darn cute. We'll keep you in our prayers.

Sheri said...

such a sweet smile - looking forward to hearing the results of the ultrasound.

Adrianne said...

Hello Skinner family,

I'm a friend of Dave and Jo Morris and found your blog through theirs. I just wanted to let you know you've got my prayers as well. That little Claire is just a doll. I'm glad she's been smiling more lately. Benson seems like such a sweet big brother. They are little blessings for you both.