Rett Syndrome Clinic.

As my father mentioned, this weekend we went to New Jersey to participate in a Rett Clinic, which means that we are part of a 3-year study on Rett Syndrome. We see the doctors twice a year and this is the 2nd time we went. There are 2 appointments, one is a measurement appointment where Edda’s height and weight are measured as well as her various bone lengths and also they do a skin fold test. Then we meet with doctors, (ours is Dr. Skinner) and we get to answer questions on Edda’s health and we get to ask any questions we had. Actually, Edda’s remarkably healthy, our only question was this weird swallowing she does sometimes right before she goes to bed and if it had anything to do with reflux.

They were apologetic for the long wait times, but I actually enjoy being in the waiting room because we get to chat with old friends and also we get to make new ones. It’s nice that even though we don’t know each other that well and we are far apart, that we are not alone (that goes to all my internet families as well!).

Here we are in the waiting room.


The next morning, we ate at my parent’s favorite diner.


2 thoughts on “Rett Syndrome Clinic.”

  1. Sounds like fun! I had to laugh at the picture at the diner. That is how it looks when we go out too. There is a complete clearing around Caitlyn so that she doesn’t get anything. Of course sometimes we are talking when the food comes and her plate is put right in front of her…Oh well..I guess that is what the extra tip pays for.

  2. I am glad that your trip went well, we are going to Chicago in April for our next clinic appointment. I am really looking forward to meeting some other girls.
    I think Ingrid mentioned you were having a team Edda for Girl Power 2Cure! We are having a team Brooklyn too – should be fun!!!

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