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  • Written Jul 19, 2009 3:52pm

    Its been a long time again.  I logged on today to ask that everyone who is interested in following Marie's story to continue doing so at www.josieandme.blogspot.com.

    I am just no good at keeping up two sites.  I hope you'll join us there!  We would hate to loose any of you!  That said, my blog is more fun, it's easier to do pictures and there's more freedom in formatting. 

    Hope to see you there!
  • Written May 16, 2009 3:55pm

    Long time, not updates!  I didn't really have any news but I do now. 
    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.
  • Written Apr 9, 2009 6:08pm

    Good news, last night went better!  For full story read here: http://josieandme.blogspot.com/

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