RE: Lise & Soren (Sylvester) evergreen lee (keaton)

[Guest guest]

hi there evergreen lee, don't be afraid to post what so ever, that is what

this group is here for, some people post only to specific people and some

people post in general, whether its about BPES or not.

anyway My name is Tonikka and i too have an 8 year old with BPES, we too

live in canada, actually we live in edmonton alberta, i am originally from

toronto and we were planning on taking the kids to canadas wonderland this

august but... im having a baby within the next 3 days, so we may have to

postpone till january... last year a few of us with children with BPES, got

together. it was great seeing and hearing other stories. my child was the

oldest of the group. what doctors have you saw? the group of us that got

together only 2 of us were from edmonton,. the rest varied from flin flon

manitoba, calgary, i have met a couple from red deer, and NWT. we all share

the same doctor who works here in edmonton and is deemed an expert in BPES

and its surgeries. i too would love more get togethers.

if you need any info i would be greatful to give his information.

oh by the way my sons name is Lynden and you can view his photos under

lyndens photos, do you have any posted of keaton yet? you seem to have your

head wrapped around BPES which is good, so obviously you have gotten some

useful info, has keaton had any surgery?, lynden has had 4 surgeries, the

first one being at 5 weeks of age..............sigh i know it was early but

it was neccessary for him to be able to see at all as his BPES was severe.

the funny thing was about this is the first question they asked us was " do

you have ANY asian decent whatsoever " nope we do not, but i think they did

a good job with his surgery and really he only needs more surgery if

something malfunctions or if he thinks he wants more for cosmetic reasons.

what month is your son born in? just wondering who is older, lynden is a

november baby and is going into grade 4

anyway feel free to email me directly lyndenhunter@... or on the

group. don't be sorry that you posted whatsoever its always amazing to meet

and hear others stories especially when they are from canada...

looking forward to hearing from you soon

Tonikka and Chris

blepharophimosis VS: Confused?!

>Date: Tue, 11 Jul 2006 22:06:57 +0200

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>-----Oprindelig meddelelse-----

>Fra: notify [mailto:notify ] På vegne af

>sylvester2603

>Sendt: 9. juli 2006 00:03

>Til: sbjoglise.jensen@...

>Emne: Confused?!

>

>I have now been reading all your answers and I`m a little confused.

>some of you write that your kids have surgery before they are 1 year

>old and some when they are about 3 or even older. how do we know

>when the right moment has accured? I know he can see, but has to

>tilt his head a lot. And he sleeps a lot, I think it is because he

>cant se very well. we go to check-ups often, but I dont think we get

>much information. they have taken some blod-test, but it takes

>forever to get the results, because they have to send them abroad.

>It`s like there is no history for them to look back on. they ask us

>a lot of questions, but I dont have the answers. and i can not find

>any one in Denmark with this same condition. we really feel alone

>with this, so I`m glad that I havd found you all. now I know that we

>are not alone. thanks. I still think that my baby-boy is georgeus,

>but I miss that eye-contact. he has an older brother and sister,

>they dont have BPES. Could it be, that we (the mothers) are old when

>we give birth? I would love to know why this happens right out of

>the blue?

>thanks again.

>

>Lise.

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