When people hear that Abby "flaps", "head rolls" and "tics" they probably don't have an accurate idea of what that means. It varies throughout the day but I took a minute to take some video of her watching TV before bed. You can see a lot of the spastic movements she has. Oddly enough, she doesn't seem to mind it one bit.
Hi Kristen, I am so happy you put together this blog. My daughter also has Rhombencephalosynapsis. I cried when I watched Abby's videos, she is just like my daughter.
ReplyDeleteLook forward to talking to you.
Carolyn
cwelance@gmail.com