Blogger Layouts

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."