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.

Monday, September 27, 2010

We do not take for granted Abby's ambulation.  She walks, and that is a miracle.  For the past 6 months, however, for one reason or another, it has been difficult for her to walk unassisted.  I have tried endlessly to figure out why, but it is some sort of Rett thing.  We hope its not further regression, but rather due to anxiety.

It is important to keep her up and moving as much as possible.  I hold her hand a lot during the day, but there are times when I can't, and she ends up sitting and watching me do housework, clean, or play ball with Logan.  She looks at me like she is bored out of her mind, which makes me feel more than just a little bit guilty.  I know she would rather me walk her around the house.  Her PT and I have been trying to find a way for her to move around the house independently and safely.  One idea is to get her to walk in a gait trainer.  She hasn't been able to walk well in it yet, but it may take some time for her to get used to it.  We're borrowing a few different models to see if one will work for her.  We have cleared out a few rooms in the house, giving her some open space to test it out.  We'll see how it goes.  
This may sound crazy, but my backup plan is to let her walk around with a life jacket on.  It sounds ridiculous, so let me explain.  When Abby falls, she always fall backwards, hitting the back of her head on the ground. Ouch.  I have thought about putting a helmet on her, but it would still be a hard fall, and I think she would still get hurt.  She wore a life vest on the boat this past weekend.  It is very thick and soft. I think it would protect the back of her head, right?  This one is too small, so I'm going to order a larger size that will be more comfortable.  There is not doubt that she will give me the "what are you doing to me now" look, but it just might work.       



  1. brilliant on the life vest idea. leah falls backward and hits her head too. hope it works as you search for the real problem. i need to meet miss abby!!

  2. I hope you find some answers soon! I love looking at her sweet pictures because she is just too adorable!