Sunday, July 8, 2012

Rett syndrome PT Kneel to Stand

This video was taken during the same session as the last one. I will say this was her last exercise so she was really worn out.

We have been trying this move with her because she is constantly maneuvering her way off the couch and ending up in this position and then has nowhere to go.

As you can see we have to bribe her and give her some motivation before she decides to help us.
Leg and core strength are essential for these girls and it is something you constantly have to work on.

Friday, July 6, 2012

Physical Therapy in Rett Syndrome-Stairs

I knew when I was taking this video that I wanted to share it with you. For some I want to show you how far she has come. For others I want to show you how she is doing. And for what has become my mission. I want to show people what Rett Syndrome is.

We keep Abby in therapy because we have a use it or lose it philosophy with Rett Syndrome. It is very easy, when you have a child that is incredibly physically disabled to just let them pretty and happy. To not want to force them or make them work. I get that. Having experience with many many children with Rett Syndrome I have found that the ones who have parents that keep them in their therapies are the ones that are happier and more cognitively responsive.

You have to consider that our children don't get to go outside and run and play for hours. They don't get to go to dance class or cheer leading. They can't play softball.There is no running down a soccer field. Keeping them active and keeping them moving is a must in my opinion. I've seen it myself with Abby. The child you see in this video used to be able to walk unassisted. She walked and walked and danced all day. Then after a long hard period of recovery from surgery and she lost almost all of her physical strength and we have never been able to get back that strong little RettGirl we once had. But we are on our way.

The video below should be a simple video of a girl climbing up and down a small set of stairs. More often than not you do not get that with Rett Syndrome. You will see Apraxia and Ataxia with her climb up. You will see Apraxia, Ataxia and Equilibrium issues as she tries to come down. I once had a Rett expert tell me that things like down or stairs look like drops or voids to our kids. She said a 6-8 inch stair will look like a 3 foot drop to her. Expect her to be fearful of stairs.

I am not an expert. I am not a doctor or a therapist. I am just the mother of a girl living with Rett Syndrome, so anything you learn here is my observance and my opinion and not any medical expertise.