Thank you all so very much!

[Guest guest]

I just knew I had found a place that was full of wonderful, caring

and most of all, understanding people!

Thank you all so much for taking the time to respond to my post and

to welcome me. You'll never know how much it means.

Lynette ~ First of all, congratulations on your baby boy! You must be

so excited and thrilled. I am sorry that your BPES caused infertility

but I bet as you hold that little bundle in your arms, you realize

that it doesn't matter how he entered your life - just that he did!

~ Your words were so kind. It helps so much to know this is

not something I will have to deal with alone. You mentioned that

Aedon has BPES..do you? Or is this the first in your family?

~ AHHHHHH a fellow Canadian!!! YAY! Then you will perhaps

understand where I am located and how impossible it is to find

doctors who are specialized in ANYTHING let alone something like

this. Even the geneticist from Halifax admitted it was the first case

she had ever seen!! And let me tell you...that's not reassuring! I'd

rather be able to talk to someone who can answer my questions and not

have to flip through a book to find the answers! So if you know of

any doctors who specialize in this in Canada, I'd love to know! I

just have sooo many questions!

Beth ~ I was so relieved to read what you wrote about doctors. It

truly makes all the difference in the world, doesn't it?? We had seen

a plastic surgeon before finding out about the BPES - just a

consultation of sorts. Anyway I was not at all reassurred or

impressed by him. He, too, had not ever seen a case of BPES and was

not even sure what could or should be done. NOT someone I want

operating on my daughter! When is the surgery usually done?? You're

right about the small town thing. The geneticist said its definately

the only case in this province and possibly in the entire east

coast...great....more reason for people to stare!

Ami ~ I just want to say that I'm glad your EX is an EX! He sounds

like someone who didn't deserve someone like you! I'm glad you have

found happiness. I hate that people can be so cruel and unkind.

That's what makes it so hard for me right now to 'expose' my baby to

the rest of the world - I want to shelter her and keep her from those

kinds of people. I know I can't do that forever and I hate the

thoughts of what lies ahead. I also want to say I'm so sorry you are

not able to have children. I have been blessed with 3 but after 3

miscarriages know the pain of wanting a baby so bad and having your

dreams crushed. Have you considered adoption?

Well...time to come clean....I TEND TO TYPE LONG POSTS!!! SURPRISE!!

Seriously, though, I can see you guys will become my life line! I

have so many questions, so if you'll bare with me, I may start

posting some of them over the next little while...??

Hugs to all of you and thanks for taking the time to post to me!

Donna

P.S. I tried to post a couple of pics of Halle but either it takes

FOREVER or my computer froze up....does it usually take a REALLY long

time? I'll try again...

[Guest guest]

--- just responding again to your answering anna from ontario, the

eye specialist that we and at least 4 other canadian BPES families

use is here in edmonton one of the families comes from manitoba, red

deer and another comes from north west territories and the other 2

of us are here in edmonton,he has more but i have not met or got

info on any of them. his name is DR ROYCE JOHNSON, his phone number

is 1 780 425 4521. he specializes in rare disorders and has done

numerous BPES patients, he is a surgeon. i know that a few of us

also saw the same genetisist who has seen BPES in many many places,

his name is Dr Ian Mc i know we are far away from you but i

hope this helps, even if you just call him and talk to him it may

help to be able to talk to a doctor that is very very familiar with

BPES

>

> I just knew I had found a place that was full of wonderful, caring

> and most of all, understanding people!

>

> Thank you all so much for taking the time to respond to my post

and

> to welcome me. You'll never know how much it means.

>

> Lynette ~ First of all, congratulations on your baby boy! You must

be

> so excited and thrilled. I am sorry that your BPES caused

infertility

> but I bet as you hold that little bundle in your arms, you realize

> that it doesn't matter how he entered your life - just that he did!

>

> ~ Your words were so kind. It helps so much to know this

is

> not something I will have to deal with alone. You mentioned that

> Aedon has BPES..do you? Or is this the first in your family?

>

> ~ AHHHHHH a fellow Canadian!!! YAY! Then you will perhaps

> understand where I am located and how impossible it is to find

> doctors who are specialized in ANYTHING let alone something like

> this. Even the geneticist from Halifax admitted it was the first

case

> she had ever seen!! And let me tell you...that's not reassuring!

I'd

> rather be able to talk to someone who can answer my questions and

not

> have to flip through a book to find the answers! So if you know of

> any doctors who specialize in this in Canada, I'd love to know! I

> just have sooo many questions!

>

> Beth ~ I was so relieved to read what you wrote about doctors. It

> truly makes all the difference in the world, doesn't it?? We had

seen

> a plastic surgeon before finding out about the BPES - just a

> consultation of sorts. Anyway I was not at all reassurred or

> impressed by him. He, too, had not ever seen a case of BPES and

was

> not even sure what could or should be done. NOT someone I want

> operating on my daughter! When is the surgery usually done??

You're

> right about the small town thing. The geneticist said its

definately

> the only case in this province and possibly in the entire east

> coast...great....more reason for people to stare!

>

> Ami ~ I just want to say that I'm glad your EX is an EX! He sounds

> like someone who didn't deserve someone like you! I'm glad you

have

> found happiness. I hate that people can be so cruel and unkind.

> That's what makes it so hard for me right now to 'expose' my baby

to

> the rest of the world - I want to shelter her and keep her from

those

> kinds of people. I know I can't do that forever and I hate the

> thoughts of what lies ahead. I also want to say I'm so sorry you

are

> not able to have children. I have been blessed with 3 but after 3

> miscarriages know the pain of wanting a baby so bad and having

your

> dreams crushed. Have you considered adoption?

>

> Well...time to come clean....I TEND TO TYPE LONG POSTS!!!

SURPRISE!!

> Seriously, though, I can see you guys will become my life line! I

> have so many questions, so if you'll bare with me, I may start

> posting some of them over the next little while...??

>

> Hugs to all of you and thanks for taking the time to post to me!

>

> Donna

>

> P.S. I tried to post a couple of pics of Halle but either it takes

> FOREVER or my computer froze up....does it usually take a REALLY

long

> time? I'll try again...

[Guest guest]

Donna

Lily had surgery at 6 weeks to correct her ptosis because she could not open her eyes at all. She will have another surgery in January and probably again at age 2 or 3. I did not have surgery until I was 10 months old, and my ptosis was corrected by tying the muscles in my brows to "lift" the eyes, plus I had the tiny corners of my eyes cut to make the shape of my eyes more normal and even. All the doctors I have seen since say my surgery was very successful and they would not change a thing. my dad had ptosis surgery and skin grafts in the corners when he was 1. And my grandfather never had surgery, he was born in 1914 and died in 1972.

take care

Bethnewhavenmama <newhavenmama@...> wrote:

I just knew I had found a place that was full of wonderful, caring and most of all, understanding people!Thank you all so much for taking the time to respond to my post and to welcome me. You'll never know how much it means.Lynette ~ First of all, congratulations on your baby boy! You must be so excited and thrilled. I am sorry that your BPES caused infertility but I bet as you hold that little bundle in your arms, you realize that it doesn't matter how he entered your life - just that he did! ~ Your words were so kind. It helps so much to know this is not something I will have to deal with alone. You mentioned that Aedon has BPES..do you? Or is this the first in your family? ~ AHHHHHH a fellow Canadian!!! YAY! Then you will perhaps understand where I am located and how impossible it is to find

doctors who are specialized in ANYTHING let alone something like this. Even the geneticist from Halifax admitted it was the first case she had ever seen!! And let me tell you...that's not reassuring! I'd rather be able to talk to someone who can answer my questions and not have to flip through a book to find the answers! So if you know of any doctors who specialize in this in Canada, I'd love to know! I just have sooo many questions!Beth ~ I was so relieved to read what you wrote about doctors. It truly makes all the difference in the world, doesn't it?? We had seen a plastic surgeon before finding out about the BPES - just a consultation of sorts. Anyway I was not at all reassurred or impressed by him. He, too, had not ever seen a case of BPES and was not even sure what could or should be done. NOT someone I want operating on my daughter! When is the surgery usually done?? You're right about the small town thing.

The geneticist said its definately the only case in this province and possibly in the entire east coast...great....more reason for people to stare!Ami ~ I just want to say that I'm glad your EX is an EX! He sounds like someone who didn't deserve someone like you! I'm glad you have found happiness. I hate that people can be so cruel and unkind. That's what makes it so hard for me right now to 'expose' my baby to the rest of the world - I want to shelter her and keep her from those kinds of people. I know I can't do that forever and I hate the thoughts of what lies ahead. I also want to say I'm so sorry you are not able to have children. I have been blessed with 3 but after 3 miscarriages know the pain of wanting a baby so bad and having your dreams crushed. Have you considered adoption?Well...time to come clean....I TEND TO TYPE LONG POSTS!!! SURPRISE!!Seriously, though, I can see you guys will become my life line!

I have so many questions, so if you'll bare with me, I may start posting some of them over the next little while...??Hugs to all of you and thanks for taking the time to post to me!DonnaP.S. I tried to post a couple of pics of Halle but either it takes FOREVER or my computer froze up....does it usually take a REALLY long time? I'll try again...