Thanks Lee.

[Guest guest]

Hi everybody, hi

Lee,

Thanks a lot for

your respond. It really means a lot to me. Tomorrow we have an appointment with

the doctor (eye-doctor, I don’t know the right word in English). And I

will again suggest earlier surgery. Or get a second opinion, because I fell

that he can not see all that he is supposed to see, if you know what I mean. Does

everybody with BPES see less? How many different surgeries do you think he

need? How many did your boy have and are he finish? I can't wait to see some

pictures. When I look in the photo-album, I get happy and sad at the same time.

Some surgeries have given the children an almost perfect look, but not them all.

I'm concerned for is future, how will other children react and what will they

say. Children are not always nice to each other. I guess I have to teach him,

to be strong and don’t listen to them. Give him a lot of love and many

kisses and hugs. I´m doing that already. Does your child have problems with

other children?

It is ok to write correspond

trough the group, others may benefit form our letters. I'm really glad you

wrote to me, thanks again. Even though you and all others in the group are so

far away I don't feel so alone anymore. Thanks again. Now I will go and kiss my

baby-love.

Lise.

 

-----Oprindelig

meddelelse-----

Fra:

blepharophimosis [mailto:blepharophimosis ]

På vegne af E. Lee

Sendt: 12. juli 2006 06:05

Til:

blepharophimosis

Emne: blepharophimosis

Lise & Soren (Sylvester)

Hello everyone,

I'm a new member from Canada

and have been devouring all of the information and hadn't had a chance to get

to all of the photos.

First of all, I

have to send an email to Lise and Soren to tell you that you have a beautiful

little boy and I can understand your confusion regarding when to get an

operation and the lack of information.

When my own son,

Keaton, was born almost 8 years ago there was NO information at all on

Blepharphimosis so I was shocked when I happened to google the word just a few

weeks ago and found the network and the group.

Keaton's eye

openings were as small as Sylvester's eyes and he had surgery at 8 weeks old to

open them.  The only reason why the

opthamologist waited that long was because we are of Korean and Chinese

background so our eye openings were small to begin with.  Once it was

determined that Keaton couldn't open his eyes any more than the 1-2mm the

doctor decided it was imperative Keaton had surgery and was scheduled within 2

days at Sick Kids Hospital in Toronto.

It was interesting though

how the opthamologists at Sick Kids who saw Keaton at 7 days old had no familiarity

with blepharophimosis and it was only when we saw another doctor with

experience with BPES did the discussions of surgery begin.

I don't want to alarm you

but I would suggest you find a pediatric opthamologist who is familiar with

blepharphimosis as Sylvester's eye openings are similar to Keaton's in size. 

You may even want to talk to an opthamologist plastic surgeon, ideally one who

specializes in pediatrics, as they have more experience with the ptossis repair

as this is a common adult surgery if there isn't anyone else to talk to.

I'm not sure about the

healthcare system in Denmark but I'm sure every parent will tell you that we

have to be strong advocates in our children's medical situation.  I've learned

not to take the wait and see attitude if my instinct is telling me to push on

an issue.  I also have a very strong eye prescription so optometrist

appointments, working with eye tests, etc have been common place for me since I

was 11 years old.  (My husband has 20/20 vision so he doesn't have the same

understanding of eye doctor visits).

Anyway, I felt I had to

write this email after seeing Sylvester's picture. 

I'm sorry if I've broken any

protocol as I've also never been part of a group before.  I thought I would

send this first email to the group but if Lise, Soren and I should take our

email correspondence 'off line' please let me know.

My son is thrilled to hear

there are other kids out there.  I am very interested in a Canadian get

together and will even travel to the North Eastern part of the U.S. for any get

togethers there.

I will get some photos up

this weekend.

Regards,

el.

They eyes are interesting in

that they need to learn to see - otherwise their development may be permanently

affected.

Evergreen Lee

397 Freeman Crescent,

Oakville, ON  L6H 4R4

Phone: 905 338-8762

Fax:   905 338-1157

Cell:  416 526-7581

>From: Lise & Søren

<sbjoglise.jensen@...>

>Reply-To:

blepharophimosis

>To:

<blepharophimosis >

>Subject:

blepharophimosis VS: Confused?!

>Date: Tue, 11 Jul 2006

22:06:57 +0200

>

>

>

>-----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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