Hi Tonikka, finally got a chance to see pics.

[Guest guest]

Lynden is so cute, I loved seeing all the pics you have posted of

him. I'm gonna post some pictures of Darryl but I need my husbands

help showing me how to do this. I love your son's smile and it

reminds me of my Darryl. Everyone tells me what a happy baby he is,

even though it didn't start out that way. When we first brought him

home he cried all the time cause he couldn't see anything and looked

like he was sleeping all the time. He couldn't lift his lids at all.

We were so lucky to have a Dr. in our area that could help us and did

the surgery for him so early. He needs to go in for some tighten

though he just went through a big growth spurt and his lids are lower

again. Most people now just think he just woke up from a nap. I

just tell them he has little eyes, just seems easier to explain it

that way. Well I'll go for now, don't mean to ramble on.

Take care and thanks for the info.

> hi , , holly and Darryl

> our son Lynden had surgery at an early age too......... 6 weeks

old, if you

> go into the pictures and look my son LYNDEN you can see by his 1st

picture

> that we had big time problems with his looking like he

is " sleeping " as

> people called it, having the surgery so young helped my son with

his vision

> tremendously.

> Tonikka

> blepharophimosis Any one in Florida area/Are we doing

the right

> thing?

>

>

> 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

>

>

>

>