Thursday, April 19, 2012

EarlyOn - Take 2!

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I couldn't help but have flashbacks back to 2009 as I was waiting for the EarlyOn team to come and do Emmalina's initial EarlyOn evaluation and IFSP.  I tried not to think about it much, but those were some rough times for this mom.  For me, our Fragile X diagnosis came during those initial evaluations - not in the form of a southern blot test performed two years later.  The whole process of acceptance was just out of order for me I guess.  Denial certainly came first, but by the time we had contacted EarlyOn each step in the process just made it more of a reality.  I spent much of the evaluation and early treatment for Ayden grieving and feeling guilty. By the time we actually had the genetic testing done the only thing it did was confirm a diagnosis we were already certain of and give us his count and methylation status.

I guess it's no surprise I was a little anxious this time around.  I already had a diagnosis, I knew how bad these evaluations can feel.  So it was pleasantly surprising to come away feeling like we are in a good position.

Good news is this:  Emma does not qualify for EarlyOn services based on delays.  She is actually at or advanced for every single milestone "tested".  It put my mind at ease quite a bit just to see all those boxes being checked! (some well into the 4 month categories even)

I'd say now for the bad news, but it's not bad...just not good.  Maybe 'other' news is better.  We just have a couple areas to watch.

1)  Emma has high muscle tone in her legs and trunk which can be worked through fairly easily and really is not a cause for concern, at least not yet.

2)  She also has an issue where her knees don't fully unbend.  It's slight, and usually corrects itself according to the PT - just another area to watch as she grows as well as do some exercies to help out.

3)  The last thing is kind of a couple things that are mildly related.  I noticed Emma favoring turning her head to her left side a week or so ago.  When I noticed I started trying to get her to turn to the right, but she really hates it.  Ayden had the same thing, which is probably the only reason I noticed it.  We just encouraged him to use his left side and it was better in a month or so.  She also has a nice flat spot on the back of her head, which could be related to her favoring her left side but is more than likely due to her hating tummy time.  In short, we'll be working on different ways to do tummy time (with the help of the PT) that make her not scream and cry which hopefully will help correct all three of these issues.

Overall, a very promising visit despite the few areas of concern.  We start PT 1-2 times per month beginning next Thursday.


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