Kelly in NF Walker

Great Appointments

Hi everyone!

I am really behind in the bloggin thing. I want to catch everyone up and I promise to try and do it this weekend. Just a quick note about medical updates…

Kelly and I had a big two days here with two very big appointments.

First we had our EEG because Kelly has West Syndrome (Infantile Spasms) and spoke to the doctors in a meeting afterwards. Good news!! We had our second normal EEG. We are excited. We will stay on the medication (which for us has been okay with the side effects anyway, nothing too serious) and have another EEG in 6 months. The Neurologist said that Kellys head measurement is normal and her weight and size are normal. Funny though that she is so much skinnier than her twin. Does that make Sabrina a chubby giant?

Then we had the appointment with the folks that coordinate all the handicapped services. Their professionals came in and evaluated Kelly and said that she is doing super. Her arms are much stiffer than her legs but she is not stiff all of the time and when she relaxes she does super things with her hands. They feel like we can work with this and that she can learn to overcome it. She turned for the doctor from her back almost all the way to her tummy (he had some neat toys). He was very impressed by her speaking and she really showed off for him and used a couple words I had not heard her say before. Of course these are in a very soft voice due to the low tone trunk but we are excited anyway. We are now scheduled to see the Speech Therapists.

I will get more specific in a later post but to keep it short…We will go back and test drive the equipment I want. They agreed with me that the equipment I want is a good choice. Thank you to all the CP Moms for discussing your equipment with me. I did my research from that and went in with a darn powerpoint presentation!!!

Again, I will discuss our equipment and therapy ideas tomorrow or this weekend. I am off to bed.

God bless,

Janette

Mom to Kelly and the other fabulous 4.