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.


Tuesday, December 8, 2009

Day 85

Last night we had 4 huge boxes delivered to our doorstep. Thanks to a mysterious Secret Santa, we'll have 12 days of Christmas surprises to start opening in a few more day! Jared and I put the 12 presents under the tree while the kids were sleeping and they were so thrilled when they woke up and saw all the presents! Benson thought Christmas had come early...and I guess it actually did! Thanks Secret Santa!

Today we made a hut for the kids to play in during dialysis. They LOVED it, of course, but it wasn't easy to keep a close hand on Claire, hidden in the tent. We might not be doing it ever again, but they enjoyed it while it lasted. The only way the kids were okay with us taking the tent down was by doing a puppet show and using the red mat as the stage for the puppets. Much easier to keep things under control that way!

Benson did his blood pressure almost every time Claire did her's today (every 30 minutes). He wanted me to hold his hand when he did each one, so when it came time for Claire's next blood pressure, she wanted to hold his hand!

And then came the big hugs.

3 comments:

Angela Lords said...

I truly appreciate hearing your daily posts. You are an incredible family and a real blessing to everyone. Thank you and God bless all of you!

Philip, Melissa, & Summer said...

How amazing. It is so great that you are being taken care of.

Unknown said...

Look at those hugs! (sniff) They couldn't be sweeter Nat!