Mothers Intuition

Have you ever had an instinct? An instinct that begins as a gnawing...Then grows into a raging burn; a burning instinct that something is wrong...

Your baby continues to get sick from the very foods he is supposed to thrive on. I did. I am a mom of a little boy just diagnosed with FPIES.

And that burning feeling now? Extinguished. My instincts? Stronger than ever. Guiding me, with my faith, as we navigate through the murky waters of our new world created by something called FPIES.

"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."

Saturday, May 5, 2012

Speech Therapy Evaluation

I have expressed my concerns for his speech for many months- recognizing that he wasn't at where my other boys were for his age and stages; but since he has always fallen "in the window", this has never been something that has been recommended as a further evaluation.   He processes concepts well and follows directions, he can say words- he just doesn't put everything into sentences like he should be doing by now, and he can't articulate what he wants to say, also some sounds are mixed up.   

Well, that is pretty much what the evaluation told us as well.   He actually sits right on the line- not necessarily needing speech therapy from a medical standpoint because he can repeat the words (some with mixed up sounds), he can process, and follow directions as well.   He just has lacked the practice in the everyday speech- with so many hospitalizations and illnesses, he is just understandably behind the curve.    She did recommend that we seek private speech therapy and get an evaluation through the school system as well because he would benefit from being followed closely since clearly his illness has put a kink in his learning and practice of his vocabulary.    

It was a good appointment- it was good to see him "tested" on what he can do, and what he can do when prompted/taught. There were some areas that covered concepts (understanding pieces of a story) and he was able to complete those, she commented that those were at the 4yr.old level.  I can see area's that we could work with him more on, practicing sounds and repeating words, and I see areas that we will clearly need help helping him.  So, we will definitely check into the private speech therapy and the school system evaluations and see what help we can get.  

My goal is to get help so we can help him optimize his potential and lessen the gaps that the chronic components of his FPIES has created. 

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