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.


Saturday, June 30, 2012

are we there yet...

The tubs are packed with books and car games. The snack box is filled with goodies. The car is (already) filled with crumbs. The portable DVD players are charged. WE are officially on a road trip. 14 hours down. Many more to go.

We visited The Children's hospital in Denver, CO today. How fun was that?! Loved it. Benson says he remembered being there (2-3 yrs old), watching movies, and playing with the other patients. Claire also says she remembers it (2 months-23 months)...which is quite possible...but she probably mostly remembers it because of seeing pictures. It is such a great place with fabulous people. Right behind us is where Claire did dialysis 6 days a week. Memories. Good memories.


We went by our old home and caught up with some neighbors. Dinner and games just can't be beat with old friends. We love the beautiful mountains of Colorado.

The kids are traveling like champs. Exciting times to come with extended families....as long as everyone stays healthy. So far so good. Claire is thankfully back to her good ol' self. Praying it stays that way for the duration.

1 comment:

~adelle said...

ENJOY!!! I can't wait for my part of your trip. :)