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Sunday, June 19, 2011

Happy Father's Day!

I just wanted to take a minute to recognize Steven. I spend so much time talking about Bailey that I don't always give him the full recognition that he deserves. He is my rock, he holds me together when I feel as if the whole world is crashing down around me. Even when he is feeling lost, hopeless and scared too he manages to hold it together for me! He knows just what to say to make it all okay. Bailey loves her Daddy so very much! She looks out the window waiting for him to come home from work everyday and anticipates their time together. She truly is Daddy's little girl!

Thank you for putting us first in your life and for always taking care of us.

Happy Father's Day!

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...

Tuesday, June 14, 2011

Waiting on a miracle

Sometimes it seems like you are the only one in the world who's struggling, who's frustrated, unsatisfied, barely getting by. But that feeling's a lie. And if you just hold on, just find the courage to face it all for another day, someone or something will find you and make it all okay. Because we all need a little help sometimes-someone to helps us hear the music in their world, to remind us that it won't always be this way. That someone is out there. And that someone will find you.

Thursday, June 2, 2011

Everything is changing

People have been wondering what my emotional Facebook statuses have been about lately so I figured I would explain. I am having a hard time pulling myself together since Bailey's MDA appointment last month.

In just 2 weeks since my last blog post things have changed even more so with her. Along with her increased fatigue, falling often, and pushing off her leg for support she has shown some other changes. These changes have not only been visible to me but to her whole Infants and Toddlers team as well. She is most definitely having a decline. Whether it be short term or long term who's to know? Bailey's speech has become harder and harder to understand. Not every sentence is hard to understand but enough of them to frustrate her because we constantly are asking her to repeat herself several times in hopes to understand what she's saying. It's upsetting. She's been stuttering somewhat but that I can't tell if it's related or simply her processing what she's going to say. She's back to holding her mouth open the majority of the time, something we had worked so very hard to get under control so she could eat and drink safely.

Bailey just underwent several testing to get her ready to transition to pre-school in September and based on one of the tests Bailey is now showing a 25% Cognitive delay where as in September 2010 and every time she had been tested before that there was NO Cognitive delay present. I know 25% is not huge but going from no delay to a 25% delay is kind of a big deal considering all of the other changes going on. Her Neurologist is very concerned.

So we are on the more urgent list for an appointment at NIH, hopefully it will be sometime in July. In the mean time they want Bailey's MRI & EEG repeated and they want her to meet with a Cardiologist to rule out any heart defects that may be causing major fatigue etc.

I am... overwhelmed to say the least.

In better news Bailey's Eligibility meeting was Wednesday and of course she was eligible and will be starting pre-school September 1st. Her IEP meeting is June 15th! We also had an equipment evaluation today and Bailey will be getting a snazzy new adaptive stroller since she is outgrowing her umbrella stroller and desperately needs one now for even shorter distances. This stroller is pretty cool and she can be transported in it when she goes to school if I choose for them to do that which I think is awesome! They were limited on helping me with lifting assistance since Bailey is still so little but if things continue down the path they are going or when she gets older other adaptive equipment will be available to us at that time!

Thank you to everyone's unconditional love and support during this rough time for us! It is really very much appreciated and I will update when I have some more answers.

"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."