Saturday, December 18, 2010

It's been a long December



Wow what a month!
So much has happened...financially,emotionally,psychologically. My head has been spinning.
No, we didn't come into money...don't we wish. But we did have some awesome things happen this month that helped us out tremendously.
We had a friend arrange for us to be able to go to the Premier Rett Syndrome Clinic in the country.
We had a Doctor donate her time and services to Abby. Not only did we receive awesome medical care for her we made a friend. A friend who cares and who just happens to be a Rett Syndrome Neurologist! How cool is that?
We have finally started Abby on the Anti Anxiety meds she needs. We are praying that they help her. She is still in the adjustment phase so please keep her in your prayers!
We had a Rett family open their home to strangers so they could receive the best care possible. Again I have made friends. Just 2 short days and I'm pretty sure this lady was somehow separated from me at birth...12 years later. What did she call it?..A brother from another mother. I love you Louise!
We found out that our Abby is in there! Of course I knew but after stomping my feet and stepping on toes for so long even I was beginning to think that it was just me..me being her Mom. Seeing things others never would as I had been told.
Having a child that was once mobile and normal and perfect..who could talk, play, play pretend, eat, feed herself....then have that all stolen in the night.. It is indescribable. Having sat in that office and having her prove that that brain of hers works just fine, that she can, she CAN talk with her eyes. One day we will get her brain to talk to her body again! Hopefully before this Rett Monster takes her from us. Like it has so many poor little Angels this year.
We discovered that we are making a difference. There are people all over the world that read my words,take my advice,use us for examples and watch and learn from Abby's videos. I had no idea and I'm thrilled that I can help from my little desk in the corner of my kitchen.
We had a couple from South Africa donate most of the funds needed to get Abby her iPad. We hope to purchase it soon after Christmas with gift cards she will receive from family. Thank you Cathy and family!
We had people step forward and provide Christmas for us without being asked and out of love. For this I am eternally grateful. Christmas is always such a high stress time of year and knowing that these people helped us because they care and they love us is amazing. I am not one to ever ask. I do not stand in line for vouchers or handouts and I never will. I somehow would have found a way...but it never even became an issue because of these folks. We love you too!!
This week we found out that a My Tobii rep will be flying in to try Abby on the device to get the ball rolling so she can communicate. These devices are beyond expensive and a huge battle with the schools and the insurance. We are ready. I can't imagine what it took to get someone to come here because there is no rep in the area. Someone pulled some major strings I'm sure. Thank you!
We are hoping to get the North Kansas City School District on board with this. They do admit that eye gaze technology is new to them. I'm hoping we can open doors for all children trapped in their bodies!
All our love
Terri and Abby

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