Nystagmus/Strabismus Re: A Parent's Tale

[Guest guest]

So life after the operation will be beter?

I cant help but often think the opposite... not really but a little.

The reason is that now my daughters eye's are so small you can

hardly see the nystagmus or strabismus (wobbly eyes and slight

crosseyed sight she has) The wobbly eyes are there to stay. Is there

anyone out there that has both or one of these eyedisorders? Would

love to talk to someone. Thanks. Bernice

PS We saw the opht. this month. Nina has to patch up 4 hours a day

so her smaller left eye will function better. And the effect is

unbelievable!! We now even have pictures of Nina on which both

eyeopenings look the same instead of one smaller!

>

> > Hi Rob....Always love to read your thoughts, ...You put such a

positive

> > spin on the whole thing, and reassure that its so insignificant

compared to

> > those who have such extreme differences...It makes bleph seem

like nothing

> > at all,

>

> I really hope I haven't sounded like I'm trivialising BPEI.

Although

> BPEI is not as bad as many other things, it's still no walk in the

park

> and is serious enough for young kids and their parents. It's just

that

> being somewhat correctable, it later gets better (after being

corrected)

> and the painful memories fade with time.

>

> > but people remind us when they have to stare like they have

> > something wrong, I'm so used to Ethan that I actually think to

myself *why

> > are you steering at my baby!...does he really look so different!

* but to

> > others who don't know I guess *yes* he probably does, but oh

well, it

> > definately makes him even more unique:)...

>

> This (and the surgery) is the worst part of BPEI: Looking so

obviously

> " different " . It's frustrating that we can't do much about it, and

> painful to see peoples' reactions. I wish my mum could post here

and

> help with that aspect (but she's too tied up elsewhere).

>

> > I know I have asked you before

> > about photos, If I remember rightly you don't have a

scanner?...When you can

> > post pix of yourself and your children, we'll be very happy to

see them:)..

>

> Be afraid... be very afraid...

>

> > Where are are you from again?...U.S right,

>

> Aaargh! Heaven Forbid! I'm from the Big West Island of your

country. (I

> dare not call it " The Mainland " , right? ;-) )

>

> > it's 12.45am here, so off to bed.

> > ..going away camping for 3 nights with the family for new-years!

>

> I can't think of anywhere better to go camping than NZ. If only I

could

> stand camping... Have fun.

>

> Rob