meeting with other BPES families

[Guest guest]

hey all in case you are curious,in March when our families met up here

in edmonton canada to meet each others BPES child we took a few

pictures, they are under Lyndens photos if you are curious, the

children are Lynden (Edmonton, Alberta), ( Flin Flon, Manitoba) ,

Caylie(Edmonton, Alberta) and Ethan (Calgary, Alberta), they all had a

great time together making their funny faces and stuff.

ENJOY..............

Tonikka

[Guest guest]

just to let you know that i will not keep them in my photos for long,

............i don't want to take up space from anyone else, so when

everyone has had a chance to look at them i will delete them to free

up some more photo space..............

tonikka

In blepharophimosis , " Tonikka " <lyndenhunter@t...> wrote:

>

> hey all in case you are curious,in March when our families met up here

> in edmonton canada to meet each others BPES child we took a few

> pictures, they are under Lyndens photos if you are curious, the

> children are Lynden (Edmonton, Alberta), ( Flin Flon, Manitoba) ,

> Caylie(Edmonton, Alberta) and Ethan (Calgary, Alberta), they all had a

> great time together making their funny faces and stuff.

> ENJOY..............

>

> Tonikka

[Guest guest]

Hi tonikka,

Thanks for sharing your pix, the kiddies would've loved it! Who is the wee Ethan? he isn't in the group is he? Our son Ethan (pumpkin pic) and the other Ethan (5yr old) we are both from NZ, but have not seen the Ethan in your pix? How old is he? and has he had any surgeries? You are so lucky to have all gotten together, we were lucky to have met Maree and , a mother and daughter here in NZ with bleph, that was so great, can't wait to meet others, especially some littlies:) Anyways, thanks again for the pix:)

Leanne NZ

-- blepharophimosis meeting with other BPES families

hey all in case you are curious,in March when our families met up here

in edmonton canada to meet each others BPES child we took a few

pictures, they are under Lyndens photos if you are curious, the

children are Lynden (Edmonton, Alberta), ( Flin Flon, Manitoba) ,

Caylie(Edmonton, Alberta) and Ethan (Calgary, Alberta), they all had a

great time together making their funny faces and stuff.

ENJOY..............

Tonikka

[Guest guest]

Hi there Leanne... yes little Ethan in the pictures is part of the group he is 2 years old and one of the cutest boys I have ever seen........ his parents contacted a few of us individually because they are really unsure of what routes to go with for surgery. since we all live near each other and we all share the same doctors it worked out that we all met, I think that his parents just prefer to read and listen to what the group has to say,

thank you for the compliments too..............

Tonikka and Chris

blepharophimosis meeting with other BPES families

hey all in case you are curious,in March when our families met up here

in edmonton canada to meet each others BPES child we took a few

pictures, they are under Lyndens photos if you are curious, the

children are Lynden (Edmonton, Alberta), ( Flin Flon, Manitoba) ,

Caylie(Edmonton, Alberta) and Ethan (Calgary, Alberta), they all had a

great time together making their funny faces and stuff.

ENJOY..............

Tonikka

[Guest guest]

Hi Again,

Our little Ethan is also 2 years old:) (Jan 24th), he has had no surgery either, and at his 2 year old appt with the opthalmologist, he said no surgery until he is about 4 years old, his eyes are not affected at all, and has not ever adopted the head up posture to see, just runs around looking straight ahead!, so thats all good....I know, it is very frustrating to know what route to go with surgery, as on this site, everyones Dr has there own opinion on when and what procedure needs to be done, and at what age. There is soooo much information within the group, it is very incouraging and yet so confusing and scarey:) anyways, talks soon.

Leanne and family:)

-- blepharophimosis meeting with other BPES families

hey all in case you are curious,in March when our families met up here

in edmonton canada to meet each others BPES child we took a few

pictures, they are under Lyndens photos if you are curious, the

children are Lynden (Edmonton, Alberta), ( Flin Flon, Manitoba) ,

Caylie(Edmonton, Alberta) and Ethan (Calgary, Alberta), they all had a

great time together making their funny faces and stuff.

ENJOY..............

Tonikka

[Guest guest]

> Hi Again, I would love to meet other people with this condtions my

son has it like I do

>

> Our little Ethan is also 2 years old:) (Jan 24th), he has had no

surgery

> either, and at his 2 year old appt with the opthalmologist, he said

no

> surgery until he is about 4 years old, his eyes are not affected at

all, and

> has not ever adopted the head up posture to see, just runs around

looking

> straight ahead!, so thats all good....I know, it is very

frustrating to know

> what route to go with surgery, as on this site, everyones Dr has

there own

> opinion on when and what procedure needs to be done, and at what

age. There

> is soooo much information within the group, it is very incouraging

and yet

> so confusing and scarey:) anyways, talks soon.

>

> Leanne and family:)

>

> -- blepharophimosis meeting with other BPES families

>

>

> hey all in case you are curious,in March when our families met up

here

> in edmonton canada to meet each others BPES child we took a few

> pictures, they are under Lyndens photos if you are curious, the

> children are Lynden (Edmonton, Alberta), ( Flin Flon,

Manitoba) ,

> Caylie(Edmonton, Alberta) and Ethan (Calgary, Alberta), they all

had a

> great time together making their funny faces and stuff.

> ENJOY..............

>

> Tonikka

>

>

>

>

>

>