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.

Thursday, March 4, 2010

I rescheduled our consultation with Susan Norwell for March 30-31 today.  I am so excited!  She works specifically with kiddos just like Abby, and has many clients with Rett Syndrome.  We had the appt. scheduled for last month, but due to the seizure craziness, we were not able to make it.  The consultation will give us some direction with Abby's speech/communication therapy.  I especially want to talk to her about a communication device that could be suitable for Abby.  I imagine it will use a form of eye gaze technology, so I'm interested to have her give me some things to work on at home and at school to get her ready for such a device.  I think it's important to find someone who understands that Abby has the desire and the ability to communicate.  We just need to find a means for her to do so.  I think Susan gets it and I can't wait to hear what she has to say.   

I have also been making arrangements for our trip to Colorado Springs in May to attend the IRSF Family Conference. It will be our first conference.  I am so ready to get some fresh ideas.  We seem to be in a rut lately, probably because Abby and I are both pretty bored with what we have been doing lately.  Abby hasn't had much therapy lately either, partly because of the hectic last few months, and partly because our insurance has changed, and we are having to switch providers.  She starts receiving PT and Speech again at the end of the month at the same center where she is currently getting OT.  When Abby was in First Steps, she had the best team.  They collaborated constantly, which was awesome. Hopefully, since Abby will now be getting all her services at the same center, there will be collaboration among her therapists again.       

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