Re: Hello new member here!

[Guest guest]

Hi Nikki, My name is . I live in San Diego, CA., and my nephew () is 22 months old. He was just diagnosed with BPES. If you want to see his pic, look in PHOTOS . He is so cute. From what I can tell , he doesnt have as severe eye drooping as some of the kids. His Dr. hasn't mentioned anything yet about surgery. But, DOES have to wear glasses. He just started wearing them a week ago. That's been quite an experience for his MOTHER! I think he's starting to get used to them, hopefully! I hope you will write back. It's nice to have someone that has a child the same age as my nephew! Welcome to the group! ---Nikki Janman <nikkijanman@...> wrote: Hi EveryoneMy name's Nikki and I have a son who is 20 months old and has congenital ptosis of the right eye. We live in Hounslow, Middlesex.We are under the care of Great Ormond Street and go for regular check ups every 3-6 months to see how his eyesight is doing. At our latest appointment we were told that he will need glasses when he is 2 as he is short sighted (in the good eye too). The lid covers half the pupil so we have been told that he will have the eye lift operation when he is 4 yrs old.I found out about this group as Shireen joined the support group that i have set up for parents of children with congenital ptosis, UKPtosis Kids. We don't have very many members yet so please do join up if you would like to!:

UKPtosisKids-subscribe I had never heard of congenital ptosis before I gave birth to my son and had not heard of blepharophimosis before either! But it is funny how quickly you learn and become and expert about these things once your lives are affected by them!Anyway I look forward to chatting to you all!Take careNikki

Stay in the know. Pulse on the new .com. Check it out.

[Guest guest]

Hi

Nice to hear from you. I had a look at your nephews pic, he looks

very cute!

Yes i am not looking forward to Luke having to wear glasses when he

is 2 (in 4 mths). He refused to wear a hat all summer and pulled it

off every time i put it on him! So I can't imagine how i am going to

keep glasses on him!

I wear glasses and contact lenses myself so since i found out Luke

might need glasses, I let him try my glasses on every so often and

he asks to try them on. I also let him look at himself in the mirror

when he's wearing them so he gets used to the whole idea of glasses

and sees them as something fun.

How is your sister/in law getting on with keeping the glasses on

? Has she got any tips for keeping them on?!

Anyway thank you for the warm welcome

Take care

Nikki

>

> Hi Nikki,

> My name is . I live in San Diego, CA., and my nephew

() is 22 months old. He was just diagnosed with BPES. If you

want to see his pic, look in PHOTOS . He is so cute. From what I can

tell , he doesnt have as severe eye drooping as some of the kids.

His Dr. hasn't mentioned anything yet about surgery. But, DOES

have to wear glasses. He just started wearing them a week ago.

That's been quite an experience for his MOTHER! I think he's

starting to get used to them, hopefully! I hope you will write back.

It's nice to have someone that has a child the same age as my

nephew! Welcome to the group! ---

>

[Guest guest]

>Hi ,

My daughter had to start wearing glasses at 3. She hated them when she first

had them and would only wear them for a few hours a day. The doctor told me not

to worry because eventually she would realize she could see alot better with

them. She is now 12 and wears them full time and doesn't seem to mind. Her

glasses help cover her scars from her surgeries.

From: Rippee <rrippee77@...>

>Date: 2006/09/14 Thu PM 09:43:11 CDT

>blepharophimosis

>Subject: Re: blepharophimosis Hello new member here!

>

>Hi Nikki, My name is . I live in San Diego, CA., and my nephew () is

22 months old. He was just diagnosed with BPES. If you want to see his pic, look

in PHOTOS . He is so cute. From what I can tell , he doesnt have as severe eye

drooping as some of the kids. His Dr. hasn't mentioned anything yet about

surgery. But, DOES have to wear glasses. He just started wearing them a

week ago. That's been quite an experience for his MOTHER! I think he's starting

to get used to them, hopefully! I hope you will write back. It's nice to have

someone that has a child the same age as my nephew! Welcome to the group! 

---

>

>Nikki Janman <nikkijanman@...> wrote: Hi Everyone

>My name's Nikki and I have a son who is 20 months old and has

>congenital ptosis of the right eye. We live in Hounslow, Middlesex.

>We are under the care of Great Ormond Street and go for regular

>check ups every 3-6 months to see how his eyesight is doing. At our

>latest appointment we were told that he will need glasses when he is

>2 as he is short sighted (in the good eye too). The lid covers half

>the pupil so we have been told that he will have the eye lift

>operation when he is 4 yrs old.

>

>I found out about this group as Shireen joined the support

>group that i have set up for parents of children with congenital

>ptosis, UKPtosis Kids. We don't have very many members yet so please

>do join up if you would like to!: UKPtosisKids-

>subscribe

>

>I had never heard of congenital ptosis before I gave birth to my son

>and had not heard of blepharophimosis before either! But it is funny

>how quickly you learn and become and expert about these things once

>your lives are affected by them!

>

>Anyway I look forward to chatting to you all!

>

>Take care

>Nikki

>

>

>

> Stay in the know. Pulse on the new .com. Check it out.

[Guest guest]

Hi Nikki, is wearing his glasses more and more every day. I think when he sees me wearing my glasses, he is more willing to wear them also. The Dr. also said what helps is to praise him, and tell him how good he looks with them on,etc. It seems to be working for . Good luck with your baby! -- in San Diego,CA.Nikki Janman <nikkijanman@...> wrote: Hi Nice to hear from you. I had a look at your nephews pic, he looks very cute!Yes i am not looking forward to Luke having to

wear glasses when he is 2 (in 4 mths). He refused to wear a hat all summer and pulled it off every time i put it on him! So I can't imagine how i am going to keep glasses on him!I wear glasses and contact lenses myself so since i found out Luke might need glasses, I let him try my glasses on every so often and he asks to try them on. I also let him look at himself in the mirror when he's wearing them so he gets used to the whole idea of glasses and sees them as something fun.How is your sister/in law getting on with keeping the glasses on ? Has she got any tips for keeping them on?!Anyway thank you for the warm welcomeTake care Nikki>> Hi Nikki,> My name is . I live in San Diego, CA., and my nephew () is 22 months old.

He was just diagnosed with BPES. If you want to see his pic, look in PHOTOS . He is so cute. From what I can tell , he doesnt have as severe eye drooping as some of the kids. His Dr. hasn't mentioned anything yet about surgery. But, DOES have to wear glasses. He just started wearing them a week ago. That's been quite an experience for his MOTHER! I think he's starting to get used to them, hopefully! I hope you will write back. It's nice to have someone that has a child the same age as my nephew! Welcome to the group! --->

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