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Wednesday, June 15, 2011

Busy little bee

I don't have answers yet BUT I do have dates! :)

Cardiologist - June 27th
EEG - June 28th
MRI - July 9th
NIH - July 13th

Bailey is a busy bee on a normal basis but things are going to be back to being ridiculous all over again. I'm glad the appointments are made and they aren't far away at all!

I'm extremely glad that Bailey's MRI could be done before her NIH appointment so the results will be available and also that it's going to be on a Saturday so Steven can be there! She has to be sedated again because of her age, so hopefully there are no complications as there have been in the past.

Today was Bailey's IEP meeting! I actually made no changes (for once) to anything they put in front of me. Her goals and objectives were right on point and I feel confident in everything that was put on the IEP. We decided on how often she will receive therapy in school and what program was best for her. Everything is finished until Pre-school orientation. She will go to Gorman Crossing Elem. starting September 1st for 2 1/2 hours a day Monday, Tuesday, Thursday, Friday. She gets a nice break in the middle of the week which I think will be great for her especially considering her increased fatigue lately. She will continue to have therapy over summer until her birthday, August 21st. We are all really excited for her and I know I made the right decision in choosing to send her to school instead of keeping her home for another year!

I think I've finally gotten a grip on myself lately. I've been keeping busy and focusing on doing what needs to be done instead of over-working my brain on what could possibly be going on with my beautiful daughter. A friend of mine told me she often thinks "Things will be okay because they HAVE to be" and I couldn't agree more. Until someone tells me for sure things aren't okay I'm gonna keep myself believing everything will be just fine. I can't let this eat at me or I am no good in advocating for Bailey!

Until next time...


"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."