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, June 3, 2010

the beauty of a box

I love cardboard boxes. Especially when an extra large one (filled with a comparatively small 5 inch cube of medicine) makes it's way to our door on a morning when I could really use some time to pack! Thanks for providing at least an hours worth of self-entertained children this morning, cardboard box! Tomorrow will mark the first vacation we've been on since Claire was 6 months old! Dialysis and vacation simply don't go together. Thanks to how well Claire is doing, the rest of the stuff we still have to do for her (medicine, shots, tube and pump feedings, etc) is fortunately portable. So off we go on a road trip headed west. I think I have just about everyone packed except for me!

4 comments:

Stephanie said...

Have fun you guys!!

Tasha said...

Wow, I didn't realize that you were leaving. Have fun!! I love the Memorial Day pictures!

Beth said...

I'm so excited for you to be in Utah I can hardly wait. Don't shut the lid on the box and expect them to entertain themselves on the trip - don't think that will work; but I'm sure glad it gave you an hour of relief to help your day along. Have a fun and SAFE trip! See You Soon!!
Love, Grandma

Unknown said...

Natalie! You have to save an hour or two for us to come see you if it's possible! I know your time will probably be squabbled over already, but let me know if we can get together, even just for a minute! :)