Any one in Florida area/Are we doing the right thing?

[Guest guest]

Our son Darryl has bpes, he is the only one with it in our family and

we have so many questions. He had his first surgery done when he was

5 weeks old cause he couldn't open up his eyelids at all. He looked

like he was sleeping all the time and cried alot. Since the surgery

he is doing much better and is now 8 months old and needs to go in

and get an adjustment done cause his lids look low again. I was just

wandering if anyone from Florida is in this group? I'm also just

wondering if my husband and I are doing the correct thing for our

child, I just feel like were kinda in the dark and just going by what

our doctor tells us. We have a really wonderful surgeron and in his

20 years or so of practice he has seen a few children with bpes but

Darryl is his youngest patient to date. I have read some of the

group talking about genetic testing. If we go see a genetic

counselor how can they help us?

Any information anyone feels like sending our way would be very much

appreciated.

I think this is a wonderful group with lots of great information and

look forward to being a part of it.

When we get time we will be posting pictures of our Darryl and his

other sister and brother as well.

Take care everyone.

Cheryl, , , Hollie & Darryl