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, November 17, 2011

a day like today

Today was a super busy day!

We made it back home to MN last night about 8:00. The kids were so excited to see each other, mom and dad, and their "surprises" from each other that bed time didn't come till quarter to ten. Too bad it was such a late night followed by an early wake-up call! I headed out the door just after 6:30 a.m. with all three kids in the van and dropped Mabel off at a friends. Thank goodness she didn't have to come with us. She would have been miserable, tired, and tough to handle throughout all our apts. Instead she enjoyed a nice breakfast of oatmeal and a two hour nap! Thanks Catherine!

Benson, Claire and I then went to 6 different apts. from 7:00 till 10:45. I was surprised at how well they did....I guess dreams really do come true! For having such little sleep....and coming off a fun vacation/time with dad....to going to the hospital for 4 hours.....I was preparing for a disaster. But they were troopers and did their blood work, urine collections, doctors' visits, and ultrasound like the pros they are! Benson's apts were for his bi-annual check-up but we won't be meeting with the doctor for results till the second of Dec. We'll see what's up then, but I don't expect any thing new for him.

Claire's apt. were with her liver doctor. Things are pretty much the same. We were supposed to meet with her transplant surgeon later this afternoon, but she ended up having to perform an unexpected surgery and wasn't able to meet with us. After talking with the surgeon on Monday, we will hopefully get a plan together for Claire and her drain tube.

Claire and Mabel both had their apts. at 1:00 today....Claire's for her IV antibiotic and Mabel's for a final check up on her hand. Her hand looks great (I'll take a pict. tomorrow) and she doesn't think there will be any evidence this ever happened in a years time. We don't have to wrap it anymore and she is using it almost just as equally as her other hand. Kids are so resilient.

Claire only has one more day for her 14-day antibiotic treatment. Yeah!

I supposed a day like today is ONE way to say "welcome back!"

I preferred the bouquet of flowers on the table.

Good thing tomorrow's schedule is completely opposite from today's!
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