Re: Hi Tonikka, finally got a chance to see pics.

[Guest guest]

hi there..........thanks for the compliment on my son lynden..........we just had an appointmet with our surgeon and he is going to put off surgery for at least 6 months... he decided that since my son needed glasses he would give him glasses that enhanced the size of his eyes to onlookers. this way my son does not have to endure teasing for at least a bit longer. i cannot remember has darryl just had the one surgery?? will he go for more?? let us know when you get his pictures posted ok?? i am interested in seeing him too. talk to you later.

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> > > >

[Guest guest]

Hi

I just joined this group and I want you know your son is so

beautiful.

I am the mom of a two month old daughter who has BPES, and I have

it, too. I am a little emotional right now, because dealing with her

two surgeries and the reality that she has BPES has brought back so

many memories of teasing and painful comments. I am so worried for

my little girl and for all the kids who have their feelings hurt.

She has had slings put in to open her eyes, she has not healed from

it completely yet. I don't know what other surgeries she will have

later.

Beth

> > 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

> >

> >

> >

> >

[Guest guest]

Hi Tonikka:

We did post Darryl's pictures. The first one he is nine months old

and the set of pictures he is 6 months old. Darryl has had 1

surgery, he needs to get the lids lifted agagin, the slings have

slipped a bit. We'll see the surgeon on the 18th of this month so I

hope we can get everything arranged through our insurance ok.

I also like the things you posted about what you tell your son to say

when people say things about his eyes. I know I'll have to be there

for Darryl some day, I'm enjoying his babyhood right now and

everyone just says how cute he is. Some people ask about his eyes so

I give them the story about what he has. But I do worry for Darryl

cause for him he is the only one is our family with this, so we are

going to ask our pediatrician if we can see a genetic counselor to

maybe found out why he has this or anything else we can find out for

him but maybe the best answer is he is this way because God him this

way. I feel my son is special to, a very happy baby, always smiling

so I can already tell he is a special person no matter how he looks.

Well I've blabbed enough, take care. Talk to you soon.

Cheryl

P.S. Let us know how the glasses work out for your son. I've

wondered if glasses could make the eyes look better.

> > 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

> >

> >

> >

> >