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.


Thursday, October 22, 2009

Oct 22


We have got the oldest, wisest, largest, fullest tree sitting in our front yard! It rained yesterday, blowing many of the leaves (finally) to the ground! Jared and the kids had a lot of work to do this afternoon. Too bad there wasn't another rake or broom for me to use. Oh well. Guess I'll just take the pictures and go back inside!

We got a new batch of shots today. Unfortunately, they diluted the concentration of the medicine and we now have to inject 10 times more than the previous batch. Most likely, it's going to hurt her worse now that we have to inject so much more fluid. We'll use these up and then talk to the pharmacist about going back down to the smaller concentration. Poor princess.

4 comments:

Wendy Beebe said...

How DARLING! Glad you could enjoy a fall day raking leaves as a family. Someone had to capture the pictures!!!

~adelle said...

loving the leaves...

enjoy that fall weather. poor little princess. my mom is taking care of our grandma now and has to give her shots. i watched this morning and totally had to look away! shots are not fun! they should make it as easy as possible for Claire for sure!

JoAnna said...

Poor Poor Claire!!
I love seeing the progress on the donor button to the side!! It is so exciting to see it growing!

Unknown said...

So inspiring to see her up and about. Did they accidentally dilute the concentration for her shots? How did that happen? If it was an accident, they should have to re-do it. No one wants that many shots! Ugh.