Hello. My name is Abby. I'm eight years old and I was diagnosed with Rett Syndrome when I turned two. My parents work hard to help me make sense of the world around me and this blog is meant to help others understand my world and my journey with Rett Syndrome.

Friday, November 5, 2010

In the next few weeks, Abby will have a lot of new things to start working on.  She is set to restart hippotherapy (horse therapy) soon.  She did very well with hippotherapy in the past, but they stopped taking our insurance. Now that she is on the waiver, she can restart.  With all the trouble she has been having with her unsteadiness, hippotherapy is a great thing!  

Also, her PT is ordering her a gait trainer and a Convaid Stroller/wheelchair, or something similar.  Now that she's too big for a child stroller, it is necessary to have something comfortable for her to sit in for those times when she isn't able to walk the distance.  Since she is unable to step up on the bus, she will use the wheelchair to get on and off the bus.  I have put off getting one long enough.  Her little feet are hitting the wheels in her stroller, so I guess it's time.

Even when she is anxious and unsteady, she will be able to walk in the gait trainer, as it will prevent her from falling.  I am hoping that it will give her more confidence, making her less anxious about falling.  I should point out that the goal is still to keep her walking independently.  Today she did great, and was able to walk around for quite a while without help at all.  At other times, though, she just needs assistance to keep her safe.  I am thinking of it as a temporary fix to her unsteadiness.  I am confident that she will be able to walk independently again soon.  That's not entirely true, but trying to remain confident that she will.

The thing that I am most excited about is Abby starting private speech therapy again.  Our insurance has denied her speech, so she has only had it at school since January.  Now that she is on the waiver, she will get it on a weekly basis.  This means we can start the process of getting her a communication device.  I can't wait!!!  I read about them all the time.  I know Abby will thrive when she is able to have a voice.  As soon as we start speech, I want to start the process of getting a trial of at least these two devices to see which would be a better fit:
Tobii  Ceye
I can't wait!! Though she isn't in speech yet, I have been in touch with a therapist who knows Abby, and we are completely on the same page.  I know it's a long painstaking process to get funded, but I can't wait!!

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