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, November 2, 2011

ups and downs (again)


Claire's apt. went well this morning. It was early, she was tired (after an uncomfortable night's rest), and I was wondering if she'd cooperate for the "pictures" that she needed to hold still for. The anesthesiologist was standing by ready, waiting, and expecting to have to put her to sleep. BUT thankfully with a few songs, some sweet talkin' and a little of mommy's magic.....SHE DID IT! Phew. One more anesthesia avoided. And the "pictures" looked great. The drain was exactly where they wanted it to be and draining perfectly into the bowel. So the doc took off the bag and caped off the drain.

Her liver doctor called and wants to see her tomorrow, after doing blood work. Hopefully we'll have a little more of a clue of what the future will hold after meeting with him tomorrow. Claire is feeling a bit better this evening. She sat up, stood up, and walked for the first time since Sunday night--making progress. I don't know how many times she watched Barney today. But on days like this, WHATEVER makes her happy and comfortable is what ya go with!



Claire had an UP hill day.

Mabel on the other hand.

Didn't.

and speaking of hands....she burnt hers.

Jared turned on the toaster oven to warm up some left-overs for lunch. The oven was nice and HOT by the time this curious little one crawled on over and pulled herself up to see what was going on. She put her left hand on the outer door of the oven and screamed. BUT didn't know to take her hand off!! Jared quickly pulled her away and looked and the burnt hand....white....and soon to be blistering.

It was bad. Really bad. We ran it under cold water for 10 minutes or so. After seeing the blisters coming on knew we needed to take her in. I took her to the Emergency Dept and she pretty much screamed for 2 hours straight. It was awful.

IB Profane helped. A tub of cold water to play in helped. Getting it bandaged up with some ointment/antibiotic creme helped. And then she zonked out while we waited for our ride home from the hospital. At least she was comfortable enough to sleep, right. It was a rough afternoon. We are all sick to our stomachs for our sweet little Mabel.

Follow-up apt. tomorrow for Mabel. It will be a busy hospital day for both princesses.

Can't say it's been the best week ever. (but hasn't been the worst either, right?)

Today's one of those days you just get through.




The dreaded toaster oven.

Thank goodness for a happy, non-injured/sick BROTHER to make both his sisters smile tonight!

2 comments:

Grandpa Terry and Diana said...

Looks like quite a day. There must be reasons for all of this to happen. Not sure what it is. But hopefully things will settle down. But all of this activity is part of our lives. Some how or another we do get through it and we grow and we have different challengs and opportunities in our lives to come.

Love you all. You are doing a great job in keeping it all together.

Love ya all.

Kayleen said...

Oh, my goodness. Your poor little angels. I can only imagine how that makes your heart ache. I'll keep your family in my prayers. You're so amazing to always keep your head up.