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.

Tuesday, June 28, 2011

Rett Clinic

Abby just had her appointment at the UAB Rett Clinic.  The big concern from our last appointment was her weight, so we're relieved that she has gained a few pounds and her BMI looks good now.  Yay!  We talked about supplements and such, and we'll see what the endocrinologist recommends later this week.  She'll probably need some additional vitamin D or calcium. She has had a few seizures over the past few weeks, but they seem to have subsided now, so we're not changing any medicines.  We talked a little about communication devices also.  We haven't had any big issues that we needed support with in the past 6 months, so the visit was rather short.  That sounds funny because its not as if she hasn't had any issues.  There are always issues.  She has Rett Syndrome, but we're a little more confident that we can handle most some of them on our own with the help of her local doctors.  I think that's progress.  We didn't even ask him if he thought she was doing okay.  It seems like we have asked Dr. Percy that at every appointment.  I don't know what we expected him to say....something like "she is doing so well that I question whether she really has Rett Syndrome at all".  Yeah, right.

Ummm... it turns out, that is bad question.  I don't even know how to answer it when other people ask me how Abby is doing.    


  1. Yippeee, this makes me so happy!!! She does look pretty healthy in that super cute swim suit, so she must be fine. Good for you for seeing that you are making progress, that is often the hardest part.

  2. She looks GREAT! Great Post!