Thursday, December 13, 2012
Update from the last month..
So our household is still adjusting to the news of the PTEN mutation. We are still awaiting Sam's tests results. So we are still in limbo of how to feel completely. We are starting our evaluation for the school district to see if we can get therapies or get admitted into their early childhood preschool. It is very overwhelming. We have to have many evaluations. Yesterday started our evaluations - we had the cognitive, autism therapist, and speech who observed her. The questions they asked were overwhelming. They saw Brooklynn in her full force - they were able to witness her inability to transition, her complete and utter focus on what she wants and inability to move on if she doesn't want to, her repetitive behavior and speech, and her sometimes "aggressive behavior" of hitting and throwing some silent fits. It was hard to see it. It was hard to hear the autism therapist ask if had ever heard the term autism with her (she was researching what her syndrome was - saw autism is 25% occurence, and even stated she saw behaviors that could possibly be concerning). It was disheartening, it was nerve racking. And next week, we go to the speech therapist, occupational therapist, and physical therapist (possibly). I also have to speak with the school psychologist to see about her social/adaptive behaviors. I won't get the official results until January 23rd. I am used to waiting, but I am so tired of waiting! I know that she needs therapies. It is just scary that I might encounter something I don't want to or that i haven't heard before with her.
I asked her teacher to fill out a questionaire, and it was eye opening to really see how little she is interacting with her peers. It makes me a nervous wreck. I see her so fun loving and excited and play well with her family. But I know she has problems interacting with those her age. I just hope we can get information that helps us to improve all she needs improved, and foster her development as best we can. I am just struggling with being okay with all this. I am struggling with staying strong. I struggle with not letting it eat away at me day to day. I think time is making things better, but it is always on my mind. I am letting it consume me and I know I should not do that. Maybe after we get all these evaluations out of the way, and we no longer have to wait for things, I will finally be able to move on. But we still have so much up in the air. It sucks.
Izzy had a cardiology appointment today since her PCP heard a murmur - she felt it was innocent but wanted to check with everything we have been through. We went and she passed with flying colors - her heart was perfectly normal! So one thing marked off my worry list.
We are getting ready fro christmas and very excited. Life is so amazing, even with everything, that I try to take all the positive and concentrate on that. I keep pushing the negative back...but sometimes it just creeps its way to the front. One day it will go away completely...I hope :).
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