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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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