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Wednesday, January 19, 2011

2011 so far

I realized today that I hadn't written since before Christmas. I'm such a bad "blogger"! A few things have happened since my last post, those of you who follow me on Facebook probably already know what's going on in Bailey's life but for those of you who don't or simply missed out on what was said I'm going to back track from my last post to today!

Christmas came and went faster than the anticipation seemed to last. Bailey made out like a bandit and fully embraced Christmas this year. It was so much fun watching her open her presents and the expressions on her face were images I will never forget!

Bailey got her Mic-Key button on Dec. 20Th and we absolutely love it! It is so much easier than the G-Tube! They decided to hold off on lowering her feed anymore until April because she had lost 1/2 a pound since the decrease and didn't feel comfortable going down in such a short amount of time. Bailey was eating really well for a few weeks and now she is back to hardly eating and throwing huge "fits" when it's time to sit at the table. I'm not really sure what it's all about but hopefully it will resolve it's self and she doesn't lose any weight in the process.

We met with the Developmental Pediatrician on December 22nd and he came to the conclusion that all of Bailey's behavior issues points to Sensory Integrated Dysfunction (SI). I of course had never heard of this before but with the help of some of our AMC Mom's and the internet I have a small idea of what is going on. I'm still researching and reading up on the issue so don't ask me for the low-down on it just yet. We were told to get Bailey's OT involved and to try and find a Psychiatrist. I'm up in the air about seeing a Psychiatrist because I do not want Bailey to simply be medicated to eliminate the "fits". I want help on working through them. Bailey's OT was very hesitant on the subject at first but she did bring up Bailey at their weekly meeting and they decided that Bailey having a Routine Based Interview(RBI) would be a good start to trying to figure out the problem. An RBI goes through a whole day of Bailey's life, detail for detail, how we all react and handle her "fits" etc etc. Should be interesting to see what comes of the interview. This is all a work in progress and so very new to us so we are still trying to figure it all out and make the right decisions for Bailey.

Took Bailey to the eye doctor on the 3rd because I kept seeing her cross her eye's, they are still saying it's the shape of her eye's. There is a name for it but I can not remember it right this moment. It is nothing to be concerned about and she doesn't need to go back unless it doesn't gradually clear up as she gets older.

The same day as her appointment she had her normal Monday afternoon Speech therapy session BUT this one was much different than all the rest. Dr. Stuart informed us that Bailey no longer needs speech therapy!! Her speech is right at age level if not a little advanced and she is doing wonderful! She did suggest her be re-evaluated on an as needed basis and told me of some things to watch out for and that if they don't clear up on her own in the next few years she will need speech therapy again! I was so ecstatic, it's nice to see hard work pay off especially when it comes to your child!

Bailey doesn't have too much coming up as far as appointments goes just lot's of preparation for transitioning to an IEP, getting her SI issues under control, and normal therapy that has decreased some what. I will be in touch after the RBI to update on how that went!

Sorry for the lengthy post!

"I am a parent of a child with special needs. When times get tough I remember that I have enough love and hope to get us through anything that was or ever will be."

"Fall into me, my arms are open wide and you don't have to say a word cause I already see that it's hard and you're scared and you're tired and it hurts and I wanna be the one you reach for first."