SV: Lise & Soren (Sylvester)

[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-blepharophimosis

><blepharophimosis >

>Subject: 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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