Emilys Dance, our babys life with San Filippo Syndrome Posts - TopicsExpress

Cards are still coming in and why not?? We keep them hanging well
Cards are still coming in and why not?? We keep them hanging well into the New Year!! Em LOVES touching them, looking at them, and ripping them down :...

Tomorrow I will be taking Emily to her very first ophthalmology
Tomorrow I will be taking Emily to her very first ophthalmology appointment. I am about as nervous as I could possibly be. I am pretty certain she has...

Beanie (my oldest) and I went shopping today for some school
Beanie (my oldest) and I went shopping today for some school clothes for her and we had Emily along for the fun. She was so excited looking at herself...

Just thought Id write today about stairs. It is getting harder for
Just thought Id write today about stairs. It is getting harder for our sweet girl to get on and off of the bus. Its been a while now that weve had to ...

I know there are a handful of you following Em with the PBA and
I know there are a handful of you following Em with the PBA and the use of Nuedexta. We had been having great success. She ran out on Saturday so she ...