Saturday, January 4, 2014

Ignorance is bliss

I watched the movie Awakenings today. I have to say, it's a whole different movie when you have a loved one affected by a neurologic disease. So tough this life we live...the life our child lives. There's no doubt we're all better people for having lived this life, but there's not a doubt in my mind, we'd do anything to go back and save our child all of this pain and suffering! We appreciate the little things more, each day, each breath...but to go back and be ignorant again...to be unaware of children dying, never able to walk or talk, experiencing significant pain on a daily basis, living in the hospital or worse, an institution! It's awful. And this movie, it just shows how these patients (our children even in this day and age) are just guinea pigs! Robert Dinero having this movement disorder where he's either frozen up stiff or unable to stop moving for a second...reminds me of what Reagan goes through. It's so hard to watch! And then the future, well that's even more scary! There's a precious little girl I've been following for a while now, Lucy (she has mitochondrial disease), whose parents have been told there's not anything more they can do. She's in the hospital, in a ton of pain, and all they can do is drug her nonstop to try to alleviate it! Ugh. It literally makes me sick to my stomach. I can't even imagine what these parents are going through...and I hope I never have to, but awful doesn't even come close to describing it. There are no words. So all we can do is hug on our girl and love on her and thank God that even though she has terrible bad days, she does still have good days. Today is a good day. Even though she's been up since 4am talking in her bed, she's super smiley and happy! She had a make up session of OT this morning and she did great for that. Still waiting on the trial of the Tobii eye gaze device. I'm guessing it's not yet available and that's why we haven't heard back from the rep! We're all pretty excited about it though. She's really been making great eye contact and looking at things lately (on good days of course), so we think she's going to do well with it! Now if we could just get some more good days! We started Lyrica last night (25mg), I haven't noticed any difference and it definitely didn't seem to make her sleepy (she still needed clonidine to fall asleep). There have been a few little quirks today...a mini meltdown when we tried to take her downstairs tonight, some temperature regulation issues, not sleeping as well as I would have liked last night...but I don't think any of those are related at all to the Lyrica. She's still congested, but no fever tonight so that's good! Please keep it in your prayers that our girl can continue on this good streak...she SO deserves a break! 

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