Friday, February 10, 2017

7 years.

 Yesterday we went to see Abby's long time PT with Children's Mercy Hospital. She has been in the PT program since before we had a diagnosis. All in an attempt to keep her as strong as possible as she is so low tone. For the last seven years she has had the same PT. Her name is Wynde.

Abby has almost always given Wynde a very hard time. Years of dirty looks and huffing and puffing if not pretending to fall asleep all together so she didn't have to work. Wynde never gave up on her. Our goal with Wynde was always Abby's back. She worked to keep her flexible and as strong as possible and to hold off the inevitable....Scoliosis surgery. We went yesterday as a final exam and assessment to see where she is before the surgery as we will more than likely still receive most of Abby's therapies through Children's Mercy in some way or another. I tried to keep it together as best as possible because I know that Abby will not return to Wynde...at least not for a very long time.

I warned Wynde when we got there that Abby had worsened a great deal since we had not not been in to see her on a regular basis. I think it was as hard for Wynde to see as it was for me.

The standard I am not going to cooperate look.

Wynde asked her where she hurt and her hand immediately went to her hip.

Wynde keeping her as straight as possible but you can still see the crookedness of her spine.

We used to be able to stretch her best in this way. She was not having it and attempting to stay off her left side. The alternative was to be on her right..where her hip is out of place.

This is where I think we realized therapy was not going to happen.


We took a break at this point and talked about the surgery and her future and what to start in the way of therapy once she has recovered enough. We decided on swim or hydra therapy. It is standard with post op Scoliosis surgery to start with pool therapy.

As I write this we are 12 days out from surgery. 10 days until until we drive to St Louis. We are trying our best to come to terms with it. As always I am not nearly as strong as she is. She continues to amaze me every moment of every day. I bitch and moan and whine over my back, my neck, my lack of sleep. I don't think even if Abby could complain that she would. She is the strongest, happiest little girl in the world. I know the Rett Syndrome gives her an incredibly high pain tolerance. I just hope it doesn't keep her from being able to express how much pain she is truly in.

I  have been attempting to explain what is happening to her. Every time she just smiles and kisses me. I tell her that we are going to be going to the hospital that is far away soon. I tell her that the doctors are going to help her so her back and legs don't hurt all the time. I tell her that at first it is going to hurt very very bad but Mommy will be there and I will help her all the time. This is when  I always get a smile and a kiss.

She is a very tiny Superwoman. I am in complete awe of her. Every moment. Every day.

Thank you all so much for all of your support, prayers and well wishes. They are appreciated more than I can express.

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