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, November 1, 2011

home again

We're home! Claire's happy to be home, but is still not quite happy. She's uncomfortable, tired from not sleeping well last night, and sore. But hopefully that will all get a little better with each passing day. She and I both got a MUCH needed nap in this afternoon so we were all a bit happier after that!

We'll be back tomorrow morning to see if they can cap off the drain tube and remove the bag portion of it. The tube would then just stick out a few inches and we wouldn't have a long drain and bag to deal with. Hopefully it's working as they want it to and that will be able to happen. They still haven't decided on what the long-term/permanent fix is going to be or when that will happen. Still keeping our fingers crossed we can head West sooner than later. Still got those suit cases packed in the van!






Mabel and Benson have been troopers this week. They've both gone to different friends houses in the wee hours of the morning and done very well. Hopefully tomorrow will be the last of the early morning drop offs for at least a little while. How grateful we are for our AMAZING Rochester friends!

1 comment:

Nikki said...

I hope Claire gets better really Really fast! So not fun!

Nikki