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.

Wednesday, February 1, 2012

today

We're home! Things went fairly well today. No unexpected bumps. Other than Benson having a fever this morning. He stayed home with Jared and feels better after some medicine. Hopefully it's nothing more.

Clarie's doctor said the bile duct had pretty much contracted back to be about the size of the tube again. bummer. BUT he did get it stretched bigger than before AND he replaced the tube with a bigger one...so over the next month it will be forced to be bigger. We'll have to see what the liver doctors think before a for sure plan will be made. She also got some pictures taken of her eyes while she was asleep. She has oxalate crystals in the backs of her eyes....so they wanted to see if there have been any changes to those deposits over the past year. I haven't heard how the eyes look in comparison.

We'll be taking it easy here for the rest of the day. Claire is still pretty woozy from the anesthesia. Benson's enjoying some lounging time on the love sac and Mabel is supposed to be taking advantage of the healing power of a good nap but is singing in her crib instead of napping. She's learned a song or two from her sister...which I suppose isn't a bad thing.


Zoned out on the tv waiting for her turn.
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1 comment:

Grandpa Terry and Diana said...

Hopefully the doctors will get that bile duct to expand. Claine is a trooper.

February 1, 2012 at 4:36 PM

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