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.

Friday, August 3, 2012

pay off time

I think we're finally getting things back in order around here. The fridge is stocked again, the bags are unpacked, and the house is back to a disaster again by the end of each night! :) We're having a fun time watching the Olympics, staying up a little later than usual, and playing with friends again. It's good to be home!

Claire did labs again today after more than a month with no pokes! That's awesome! She did okay. Especially with the bribery of getting to watch her favorite disney show, Doc McStuffins (of course), on my phone during the blood work, IF she'd relax and be calm. It worked pretty good. Her liver labs look fabulous! I think this might be the first time for many many MANY months I can say that ALL of her liver labs are in the normal range!! HOORAY! Kidney function is also as good as ever. Her blood count was a little low, which is slightly puzzling--but I had thought she'd been looking a bit pale. Hum. Who knows. We'll see if anyone has anything to say about that. Otherwise, she looks perfect!!! So glad. What a relief. Hopefully we keep on this good trend!

Monday will be a big day for Claire. For NINE months--since OCT 2011, Claire has had a tube/stint going through the bile duct of her liver, coming out her right side. Every month she goes under general anesthesia to get the duct stretched out. She hasn't had a real bath since this all began. She hasn't been more than knee deep in a swimming pool (other than when she accidentally fell in last month! oopps...!!) BUT on Monday, the tube will be removed. Thoughts of swimming have already crossed her mind. Soaking in the tub is on her list. And a huge prayer that her bile duct will hold it's own form and perform it's proper function is in place!! I really hope it works. I really don't want her to have to go through a surgical revision or more months of 'stretching.' I feel like it should work. I feel like we've given it the best chance for success. We've done all we could do. Claire's endured patiently for nine months with a tube when she's supposed to be tubeless! Let's hope it all pays off and there's soon to be some smiling swimmers!!
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1 comment:

Grandpa Terry and Diana said...

So glad to hear about Claire's labs. It was truly a miracle this past month. And we do believe in miracles. And we pray that she will be blessed with a good working bile duct. We will pray for her and then we will pray for her again.

Glad things are getting back to normal. What ever that is.

August 4, 2012 at 9:26 PM

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