Casie, How nice to hear from you. I live in Myrtle Beach, SC now.
I am from Newark Ohio though. We will more than likely be going back
this summer. Just really having a hard time changing to a new
Childrens Hospital, & I really haven't found a doctor I like for the
girls. I am glad to hear your soon should be getting all his tubes
out this spring. I remember those days. Paige was almost 3 when the
trach came out & 3 1/2 when the g-tube came out. Let me tell you she
eats great. She is actually the best eater out of all three of my
girls. She still hasn't outgrown the reflux. Thankfully the nissan
is still intact so she doesn't throw up her food. She also takes
Nexium for the heartburn. I to am almost legally blind. Can't see
very well at all. Luckily my girls can see much better than me.
They say my youngest daughter Ashton doesn't have it. I still want
to have her tested after doing some research on the syndrome. I
didn't present with anything at birth nor did my mom. My mom just
got tested. She has astigmatism & is very double jointed. My sister
only has scoliosis. I would love to chat sometime.

Heather mom to 2 stickler girls Kayla & Paige