Re: Just diagnosed - allison

[Guest guest]

;

You just described my feelings! The 'so tired' comment has been a

common remark here as well. I am happy to hear that Aedan is doing

well after his operation - what was addressed - the lid muscle?? When

reading the postings in this group, I can see that many operations

are necessary, I am curious as to what is addressed when, so if you

have more information, I am happy to hear about it.

Does this 'bleph'-syndrome run in your family? Reading about it, it

seems to be inherited, however, we have noone in our family before

Caroline - what about you?

How badly is Aedan affected? Was he able to see before the operation?

Let me know how he is doing - I am curious to hear about your next

visit to the opthamologist.

Best wishes,

nne

> Dear nne,

> Hello I'm the mother of a 31/2 month old boy who had the first

operation

> 3 weeks ago. He is doing great and thankfully can see. His eye

muscle

> control has improved extensively in just 3 weeks. He is

thankfully, a happy

> and content baby and is curious about his new ability to see past

his eye-

> lids. The diagnosis was made when he was only ten days old, the

following

> two months was torture for me, dealing with the reality,

researching an

> uncommon syndrome, RESEARCHING SURGONS, making the decision to

operate now,

> and finally the operation and after effects. Weeks later I am not

so worried

> and can enjoy Aedan fully. I dont see any signs of developmental

delays and

> I think his vision will be ok too. Still an ongoing challange is

in dealing

> with others comments. Hearing " He looks so tired. " over and over

really is

> getting to me. We live in NYC and everybody has a comment, kind or

not so

> kind. Moving from my gripes I am glad that we make the decision to

do the

> first operation early. Our surgeon is Dr. Maher at ny

eye and ear

> Hospital. She did a fine job, Aedan looks better that I had

hoped. We are

> going back to the opthamologist in two weeks.

>

> warm thoughts are with you.