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, August 19, 2010

A little bit of everything..

Last weekend I spend a few days in Las Vegas with 9 amazing moms of girls with Rett.  It was so nice to relax with other moms who are dealing with so many of the same issues as we are with Abby.  Rett is such a unique disability.  It's nice to know we're not the only ones going through this craziness.  While I hate Rett Syndrome,  I love that it has brought such wonderful and supportive people into my life.  Thanks ladies for a great weekend!

Abby has 2 more weeks before school starts.  She's all smiles when I talk about it, so I think she is excited.  I am glad she has the same teacher and aids.  She loves them so much, and will be so happy to see them.  I'm so ready to get into the school routine.  It will give me some time for Logan, and it will give Abby some interaction with people other than myself.  Her classroom will have some new touchscreen computers and communication devices that I'm anxious to see.      

Abby is sleeping tonight in foot orthotics.  I'm not sure how well she will sleep, as I can hear her wiggling around upstairs while I write this post, but we'll see.    She didn't get upset when I put them on, I just got the "what are you doing now" look.  She will let me try just about anything.  Her heel cords are tight, so this orthotic will stretch them slightly while she sleeps.  The hope is that this will correct the heel cords, and nothing else will need to be done.  Having tight heel cords can impede her ability to walk.  I don't think it is the culprit in the "melting spell" issue, but maybe.  We see Dr. Percy tomorrow as a part of the Rett Syndrome Study, so we will get some information about it then.    

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