Coming home from vacation is hard work!! But I think we're finally getting back into our groove now a bit more. Claire had blood work last Thursday and today as well. Her liver numbers were up a little on Thursday but have since come down as of today's blood work...so we're grateful for that. Other than that, she looks and feels fabulous! Still has a little runny nose she's trying to get over, but that hasn't slowed her down one bit. We're going to meet with another occupational therapist tomorrow and see if we can start making any more progress on her eating abilities. Not much progress has been made with the therapy she's currently getting through the school district, so I figured the more help the better in this case. I'd love to see her make some significant progress in the eating dept!!
Benson started swimming lessons today and loved it. He gets to do it every day for the next two weeks! It's nice to have some kind of summer activity to keep him busy and it's good for all of us to get out and have something to look forward to.
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.
Monday, June 28, 2010
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If you guys move back to Colorado, there is one of the foremost feeding specialists in the country here. We took Julianna to her. I'm sure she could really help Claire.
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