Annual Rett Syndrome Conference

 This was our first year to attend the Annual Rett Syndrome Conference.  We had been looking forward to this for months. We couldn't wait to meet new families, new girls and become more educated on the ways we can help Henslee progress.  We went and sat down in a large conference room surrounded by beautiful Rett Syndrome families. We found our great friends that we met last year when we were just starting down the Rett Syndrome path.  Read about that meeting here..http://misshenslee.blogspot.com/2012/08/our-new-friends.html
It was nice to have a familiar face to sit next to.  As the conference started I looked around the room to see this new family that we were a part of.  Its weird we had been so excited to come to the conference but as I sat there looking around the room I felt this instant sadness.  My heart ached.  Its as if reality came and smacked me in the face saying this is your new life.   Its easy to go through my day with Henslee and not think "oh Henslee has Rett Syndrome".  But when you are in a room surrounded by girls and families that are dealing with Rett Syndrome reality just hits you,  Henslee does have Rett Syndrome.

Throughout the day we were able to meet many new families.  Families going through the same thing we are, dealing with the same issues we deal with, feeling the same emotions we feel.  The feeling of sadness quickly left and I was engulfed in the feeling of Gratitude.  Gratitude for the beautiful people I meet because of Henslee.  Gratitude for  truly having a beautiful Rett Syndrome Family.  Mothers that are their for me to contact anytime I have concerns or questions.  Someone to hold my hand as we go through the challenges we face with Rett Syndrome.   I am truly grateful for these amazing people I get to go through this journey with.  And mostly grateful for my little Miss that I am lucky enough to be her momma!

Picture ExchangeCommunication System

We started with the first stages of the PECS ( Picture Exchange Communication System) with Henslee. SHE HAS DONE AMAZING!!! I love to see her choices. First Choice of movie was TOY STORY,. First Choice of  snack NUTRI GRAIN Bar :) I made 1000 of the small pictures that you see in the top right picture. Well those didn't work out so well so I have just taken my own pictures, printed and laminated as we go. She does well with about a 3x3 card. They are easier for her to see and grab. The other ones were way to small. Maybe as she becomes better we can start incorporating the small cards. IT IS SO MUCH FUN TO SEE HENSLEE HAVE A VOICE!!