Fragile X: Diagnosis & Treatment

Fragile X: Diagnosis & Treatment:

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Home - National Fragile X Foundation

Home - National Fragile X Foundation:

'via Blog this'

Testing 1-2-3

When I think about the first year of Cody's life, I realize he wasn't the only one taking baby steps.  Not that he was walking by himself yet, but he was trying.  Myself, I was doing everything possible to avoid the inevitable, but secretly  I was building strength to except that maybe my precious baby was not going to grow up normal.  There are so many aspects with fragile X that completely blow chunks.  The first thing is how completely normal a Fragile X baby looks and acts.  It's as though God plays a mean trick on us parents.  Well that's how I saw it then.  Now it's the least of my concerns, after all many babies are born freaky and turn out just fine.  I remember a relative who had a baby that I could hardly look at for fear I'd turn to stone, and she eventually grew out of it.

I decided to start with Cody's eyes.  His eyes were crossed mostly or just a blank stare.  What was he thinking, why wouldn't he look directly at me?  I made an appointment with a child optometrist that was highly recommended and saw her the following week.  Three things Fragile X babies hate right off the bat.  Their eyes bothered with, teeth or mouth area touched, and SHOTS.  There is another, but will explain later.
Shit there are a list of things, but these are the first of many others.   (to be continued)...

13th International Fragile X Conference in Miami

 The 13^th International Fragile X Conference in Miami, Florida July 25– 29, 2012

For Information and Updates click here!