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, March 2, 2011

life this week

Claire had labs on Monday. One of the liver levels went higher than last week and one of the levels was lower. So mixed results. I'm not surprised because she still is hanging on to a cough and runny nose. I'm pretty sure she's had the same one for 2 or 3 months now...it just won't go away! But it doesn't slow her down. Just makes the rest of us crazy because her liver numbers won't go down! I really think they're elevated because of her cold. We'll check again next week to see how things look.

Mabel is growing up way too fast! She's already almost doubled her birth weight! She is so fun right now, though. She loves to smile at just about anyone who will talk to her, and shyly turns her head away when she gets some attention. Benson keeps says...."She's so cute, I just don't even know what to do about it!" He can hardly contain how much he loves her! "You're the best baby in the whole wide world. I'll never get mad or be mean to you!!" (If only that could stay true!)

One of Claire's favorite foods lately is chips and salsa...but mostly the salsa part! She eats it up and asks for more every time. Such a random food for someone who hasn't had much flavor in her mouth to love! We have switched her to a different formula and it allows us to not have to feed her as often. She she is getting much more hungry and eats an mini-sized breakfast and lunch now. Awesome improvements!

3 comments:

Ria said...

I hate to mention it since you are working so hard to get Claire to eat at all but is it possible that the cough and runny nose are from a food intolerance instead of a cold? As an adult I kept going to the doctor who kept telling me I had a cold. I knew it wasn't a cold but didn't know what was wrong. Took a long time but finally figured out it was an intolerance to all dairy products. Since Claire's symptoms have lasted so long, I think it is possible that it is something more than a cold. Just a thought...

Terry and Diana said...

Glad to hear that Claire likes chips and salsa. So do I.

It will be interesting to see what she developes a taste for next. It has been an up and down rollercoaster in watching her grow into eating foods.

But it is good to see her eating and enjoying it.

Benson just has too much love to give in that big heart of his.

Unknown said...

Happy to see things going well! Love to you ALL!!