Monday, May 7, 2012

And one more thing. . . . .

Rett Syndrome is really tough.  Not just for the obvious reasons, you know the seizures, watching your daughter being trapped in a body that doesn't work, not being able to talk to your daughter. All of those things make it tough for sure,  but what really makes it rotten that just when you learn to cope with things, just when you get your mind right and in a positive place, just when you think for a second "we can handle this!" Rett Syndrome kicks you in the knees and makes you cry for mercy again.  I hate it. It's like things are fine for weeks and then suddenly take a turn for the worst.   We had gotten over the scoliosis blow and things were going ok.  Uneventful.  Seizures pretty much under control, therapy in full swing and then with out any warning BAM!  In what seemed like a blink of an eye,  I look at my kid and she is nothing but bones.  The kid who had never had a problem packing on pound and likes to eat everything is suddenly struggling.  After more careful thought, yes, her appetite has decreased and it's getting harder and harder and taking longer and longer to get her to eat a full meal.  It currently takes us at least 1 hour plus to get her to eat one meal.  And for all you working parents you know that one hour is not feasible for breakfast on school morning.  This has been one of our biggest fears since many girls with Rett are tube fed.  I don't know why, this for us has been such a HUGE fear.  Like more than seizures or anything else we have had to go through.  I think because eating is one way she is "normal" or "average".  And she enjoys food.  I think it would break my heart into a million pieces if she wasn't able to enjoy birthday cake or pizza or the occasional McDonald's cheeseburger that she loves.  So we made an appointment with a nutritionist.  It's not too bad.  She is average weight for a child of her age and height, however seriously concerning that she has lost 3 lbs since February.  The problem is that chewing (like everything else for Juliana) is physically taxing on her body.  It literally wears her out.  So the plan of action - Go back to feeding therapy to help strengthen the muscles used to eat and chug down some pediasure.  If this doesn't work we may have to start pureeing her food (which would also break my heart) and then if that doesn't work, I don't want to think what comes next.  I am hopeful plan A will work and that will be the end of it.  PRAYERS PLEASE -  WE NEED A CURE!!!!

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