Saturday, May 16, 2009

What happened last week?

That's a good question. It's hard to believe it is already Saturday. The week started off relatively normal: work on house, gymnastics, and I've still been advocating for Marie regarding positioning equipment. Then Wednesday saw the great drywall debacle. Namely, our drywall guy we had lined up wasn't going to be able to do the job so I began the process of finding another. Luckily I have a friend who knows people. I've got my fingers crossed that the drywall will get done and we'll be painting soon.

Thursday Marie had her neurologist appointment. She hadn't been to see Dr M in 6 months, and our only thing we really wanted to talk to him about was the muscle spasm she has in her right cheek. It started within the last month and doesn't seem to bug her, it's just new. He informed us that it is in fact a myoclonus jerk. In Marie's case its caused by the lesions in her brain stem (Leigh's Disease causes lesions (dead or dying tissue) in the basal ganglia and brain stem). It sucks, but really, if our only complaint in six months is that her face has a twitch we don't have a lot to complain about. Dr M smiled nearly the whole appointment and simply stated her "progression is not what would be expected". That, in layman's terms means that Marie is doing fantastic, this disease which they tell us will kill her is not progressing much at all (though at one time is was frighteningly fast). She's stable, thriving and a God given miracle. Marie has Leigh's Disease but it does not define her, she has certain obstacles to overcome but they do not control who she is. At first she seems distant and unaware but any time spent with her shows everyone she is a regular kid full of joy, naughty, deep in her own version of the terrible twos, and an immense blessing. Furthermore, she is fully with it.
Dr M noted her eyes are tracking better than they were before, and her muscle tone has increased (this may be progress, or it may be the transition from hypotonia to hypertonia). Only time will tell. For us at the moment it means she's better able to hold her head at mid-line than she was before, and she's started rolling over to her side again.
It was a good appointment, lots learned, and because of some new information I gained I may be going back to school in June to become a Certified Nurse's Assistant (CNA). Respit care has been a huge struggle for us, we just can't find anything that works. We are just to rural for most services that are offered. But, there is a program in which the state will reimburse a primary care giver for care provided, if they become a CNA. If I were to do this it would open up some new windows for us, we could pay our babysitters what they're worth (they are special girls to take on Marie and their pay needs to reflect that), and since working outside the home is not an option for me it would give us that opportunity of a second income of sorts. We'll see, nothings decided, and I don't even know if my info is 100% accurate but it may be an option and something we'll be looking into.

Last night was also a really big deal for us, Miss Josie graduated from Preschool. They had a program they put together (she was Minni Mouse) and a little graduation ceremony. Completely adorable. I have lots of photos to share. I cannot believe we're old enough to have a kid going into kindergarten.
So, that was the last week in a nutshell. Busy! Hopefully next week is a little slower but I don't count on it. Between houses, farming, kiddo's, etc this is a crazy time of year! Today should see us done spraying no till for weeds and then it's on to the next thing. Baby number 3 is doing well, wiggling all about and busy as can be itself. After Thursday's appointment and Friday's celebration Luke and I are feeling pretty blessed:)

1 comment:

The VW's said...

Sounds like you do have lots going on! I'm so happy to hear that Marie is doing so well! What a blessing! I will pray for continued health for her! She is adorable!