Re: Naomi C.

[Guest guest]

Hi and Ern,

Welcome to the group. I just looked at Naomi's pictures and she is

such a happy little girl! The tapes...what a great idea!

Yes, I agree with you in using the tapes. I honestly have never

heard of using the tapes and my daughter's doctors never mentioned

tapes! I think the reason behind early surgery is for preventive

measure...to ensure that vision is not hindered by the droopy lids.

But if tapes serve the same purpose...to make the opening bigger,

why not use them? I will definitely ask the doctors about it at

the next appt.

My daughter will be 9 months soon and I am like you...waiting until

she is mature enough (3-4yrs) to have the surgery for hopefully, a

permanent solution. I and my father and 2 sistes have BPES. My

sisters did not pass it onto their kids; unfortunately, my daugther

is the only " victim " that received my genes!

May I ask what nationality you are ? My daughter is half Korean and

Chinese.

Thanks,

Min

>

> Hi everyone,

>

> I'm , Naomi's mom. Ern and I only chanced upon this group

> sometime in November this year. Up till then, we, like many of

you,

> felt like 'orphans'. I was so happy to know that there are people

> out there who share my feelings. On the other hand, I was also sad

> that there are babies out there having what Naomi has. Thank you

for

> sharing your beautiful families with us. All of our children are

> very special.

>

> As for the recent postings about mean and rude comments, I'm

> convinced that every where in this world, there will be people

like

> that. I've had my fair share of rude and ludicrous comments. I

> suppose that saying " sticks and stones will break my bones, but

> words will never hurt me " kinda have to hold true for our family

> right now. Thanks for sharing about how to deal. It's good advice

> about being open and I hope to help Naomi feel right about

herself.

> As for myself, I find that having a sense of humour towards those

> silly comments helps a lot.

>

> Ern shared about using tapes for Naomi's eyelids and yes, it is so

> rudimentary, but may be something worth considering especially for

> those of you with really young babies. Takes a bit of practise and

> knowing your baby, esp nap times! But, on the whole I'm very happy

> we took this route. Tapes or no tapes, she's going to get stares,

so

> we decided no need for surgery till later. Ern's posting the

photos

> at the moment so you can have a look at how tapes work for Naomi.

Do

> take care everyone and have a great new year. For those who

> celebrate Christmas, have a merry christmas too!

>

>

[Guest guest]

Hello you have a beautiful family and your little Naomi is

an absolute doll. Naomi's doctor did not recommend using the tapes

or maybe I read your post wrong? This seems like something my

daughter Hannah Rae could benefit from. She has an appointment on

the 11th of January so I will ask the doc what he thinks.

Is Naomi the first in your family to have BPES? At what age did her

doctor say surgery was an option? Sorry I have so many questions.

I am a new mom and what to obtain as much info as possible. THANKS

for sharing your photos and your tape method!

Happy New Year and Happy Winter!

Angie

>

> Hi everyone,

>

> I'm , Naomi's mom. Ern and I only chanced upon this group

> sometime in November this year. Up till then, we, like many of

you,

> felt like 'orphans'. I was so happy to know that there are people

> out there who share my feelings. On the other hand, I was also sad

> that there are babies out there having what Naomi has. Thank you

for

> sharing your beautiful families with us. All of our children are

> very special.

>

> As for the recent postings about mean and rude comments, I'm

> convinced that every where in this world, there will be people

like

> that. I've had my fair share of rude and ludicrous comments. I

> suppose that saying " sticks and stones will break my bones, but

> words will never hurt me " kinda have to hold true for our family

> right now. Thanks for sharing about how to deal. It's good advice

> about being open and I hope to help Naomi feel right about

herself.

> As for myself, I find that having a sense of humour towards those

> silly comments helps a lot.

>

> Ern shared about using tapes for Naomi's eyelids and yes, it is so

> rudimentary, but may be something worth considering especially for

> those of you with really young babies. Takes a bit of practise and

> knowing your baby, esp nap times! But, on the whole I'm very happy

> we took this route. Tapes or no tapes, she's going to get stares,

so

> we decided no need for surgery till later. Ern's posting the

photos

> at the moment so you can have a look at how tapes work for Naomi.

Do

> take care everyone and have a great new year. For those who

> celebrate Christmas, have a merry christmas too!

>

>

[Guest guest]

Hi Angie:

Managed to beat to posting something this time so I'll

respond to part of your message.

Naomi's doctors (she's been seen by two eye surgeons - a paediatric

ophthalmologist and an oculoplastic ophthalmologist - and a

paediatric craniofacial surgeon) have all recommended taping as an

interim measure as they've all felt that she's been too young and

small for surgery. She's being followed up 3 to 6 monthly by the

oculoplastic surgeon who assesses her vision - so far so good.

As far as we understand, taping is an accepted alternative to early

brow lift surgery. None of the three surgeons that we've seen have

advocated early surgery. All agree that surgery would be done the

moment Naomi's vision shows signs of deterioration or when she turns

3-4 years old (when she's old enough to co-operate with a detailed

eye exam and when she's big enough to make surgery technically

easier), whichever comes first.

By all means, discuss in detail with Hannah Rae's doctors on the lid-

taping option. If they think it's a good idea, ask them where best

to place the tapes - we had to learn by trial and error (best to

learn by watching!). We'll be happy to give you more tips too.

Naomi is the only child in both our extended families diagnosed with

BPES as far as we know. We've looked at all our relatives and no one

has the same appearance.

Had a quick peek at your family's photos too. Hannah Rae is a lovely

child! Reminds me so much of Naomi at that age. I'm really glad to

see that Hannah Rae's lids seem to lift higher than Naomi's, and her

horizontal eye opening seems wider too.

Anyways, Happy New Year to you too! We'll be celebrating Christmas

later this week with Naomi's grandparents who have flown in from

Malaysia to visit us here in Singapore (no chance of a white

Christmas down here next to the Equator unfortunately).

Ern C.

>

> Hello you have a beautiful family and your little Naomi

is

> an absolute doll. Naomi's doctor did not recommend using the tapes

> or maybe I read your post wrong? This seems like something my

> daughter Hannah Rae could benefit from. She has an appointment on

> the 11th of January so I will ask the doc what he thinks.

>

> Is Naomi the first in your family to have BPES? At what age did

her

> doctor say surgery was an option? Sorry I have so many

questions.

> I am a new mom and what to obtain as much info as possible.

THANKS

> for sharing your photos and your tape method!

>

> Happy New Year and Happy Winter!

> Angie

[Guest guest]

Hi Ern,

Welcome to the group:) you have a beautiful wee girl, so happy, just like our wee guy:) We have a 23 month old, the big 2 January 24th. His name is Ethan, there are pictures of him with candice and maree, plus in his own folder, dressed in the pumpkin outfit, there are 2 ethans, the other ethan is 5 and also from NZ which is where we are from. Ethan is the first in our family to have bleph, so he was a big surprise! A good one though:)

I just had a question on taping the eyes, as I have not heard of this procedure before either. How does Naomi blink with having the tape there? does she get dry eyes from wearing the tape? How old is she? We have been told that surgery would be done when Ethan is around 4, before he starts school, but at his last appt at 18 mths, the opthalmologist said he may do a temporary ptosis lift as his top eyelid is quite tight and does not have much movement? His eyesight is great though, no problems there, nor with anything else, he runs around like our 1st son did, you wouldn't know he had bleph, besides looking at him of course:) he tends to run into things, but what toddler doesn't:) It makes the decision to have surgery at 2 a bit confusing, as he seems great the way he is! and operating on that flawless, untouched face seems so sad for us to even think about, but it is whats best for his eyesight in the end.

Talk soon.....leanne and family (NZ)

-- blepharophimosis Re: Naomi C.

Hi Angie:

Managed to beat to posting something this time so I'll

respond to part of your message.

Naomi's doctors (she's been seen by two eye surgeons - a paediatric

ophthalmologist and an oculoplastic ophthalmologist - and a

paediatric craniofacial surgeon) have all recommended taping as an

interim measure as they've all felt that she's been too young and

small for surgery. She's being followed up 3 to 6 monthly by the

oculoplastic surgeon who assesses her vision - so far so good.

As far as we understand, taping is an accepted alternative to early

brow lift surgery. None of the three surgeons that we've seen have

advocated early surgery. All agree that surgery would be done the

moment Naomi's vision shows signs of deterioration or when she turns

3-4 years old (when she's old enough to co-operate with a detailed

eye exam and when she's big enough to make surgery technically

easier), whichever comes first.

By all means, discuss in detail with Hannah Rae's doctors on the lid-

taping option. If they think it's a good idea, ask them where best

to place the tapes - we had to learn by trial and error (best to

learn by watching!). We'll be happy to give you more tips too.

Naomi is the only child in both our extended families diagnosed with

BPES as far as we know. We've looked at all our relatives and no one

has the same appearance.

Had a quick peek at your family's photos too. Hannah Rae is a lovely

child! Reminds me so much of Naomi at that age. I'm really glad to

see that Hannah Rae's lids seem to lift higher than Naomi's, and her

horizontal eye opening seems wider too.

Anyways, Happy New Year to you too! We'll be celebrating Christmas

later this week with Naomi's grandparents who have flown in from

Malaysia to visit us here in Singapore (no chance of a white

Christmas down here next to the Equator unfortunately).

Ern C.

>

> Hello you have a beautiful family and your little Naomi

is

> an absolute doll. Naomi's doctor did not recommend using the tapes

> or maybe I read your post wrong? This seems like something my

> daughter Hannah Rae could benefit from. She has an appointment on

> the 11th of January so I will ask the doc what he thinks.

>

> Is Naomi the first in your family to have BPES? At what age did

her

> doctor say surgery was an option? Sorry I have so many

questions.

> I am a new mom and what to obtain as much info as possible.

THANKS

> for sharing your photos and your tape method!

>

> Happy New Year and Happy Winter!

> Angie

[Guest guest]

Hi Angie, glad to hear that you think Hannah Rae may benefit from the taping. I

was so

heartbroken to read in the old postings of really young babies having to go

through

surgery and infection. So if our simple method could help other young children

as well it

would be great.

Do be prepared for lots of questions and stares though. BPES itself already

stirs up so

much curiosity especially if you live in an area where inter-racial marriages

are

uncommon. The tapes may invite more or give people an excuse to ask you. For me,

some

were sympathetic because they thought Naomi hurt herself, others just plain

silly. I had a

group of middle aged women pounced on me accusing me of not letting my baby

sleep...I

thought it was so ridiculous I laughed. Which mom doesn't want her baby to

sleep??!

If you do tape Hannah Rae'e lids, and because she's still so young, you may have

to be

vigilant about her nap schedule. Maybe it's just me, but I felt so guilty

whenever Naomi fell

asleep with her eyes still taped up! It happened usually in the car. Used to get

so stressed

up when she was in the back seat in a back facing carseat. So I would loosen her

tapes if I

suspected she could fall asleep in the car.

If it's particularly windy, I would loosen the tapes to prevent her eyes from

drying out and

dust from getting in. Even though she has tapes on her eyes, she leads an active

normal

life. She does gymnastics, she plays in the pool, she goes for kindermusik

classes and

playgroup with me. Sometimes the tapes come loose because she is all sweaty or

wet from

the pool so I always have a roll of micropore in my bag.

Now that she's at an age where she really want to exert her own independance,

she would

dictate when she wants her " eye tapes up! " or " eye tapes off! " . So nap time can

be quite

funny. She knows how to lift the tapes by herself...sigh...

Naomi loved her tapes the moment it went on. She smiled!! I think the only

people the

tapes really 'bother' are the noseys on the street. I can deal with that. I'd

rather me bear

the brunt of the stares and rude comments than her having surgery at the moment.

In fact

I'm so used to it I don't see them staring anymore.

I'm like Leanne, I can't bear to let anyone touch that perfect face. As long as

her eyesight is

not affected and she is not unhappy with the tapes we'll keep using them. I

will try my

very best to help her to be comfortable with them. Kids wear spectacles to see,

so why not

her eyetapes?

Don't worry about having to ask us questions about the tapes. We would be most

happy to

share our experience. Take care and give Hannah Rae a big kiss and hug from us.

She's

such a happy sweetie.

The doll's mom

--- In blepharophimosis , " Huffman " <angie_huffman@y...>

wrote:

>

> Hello you have a beautiful family and your little Naomi is

> an absolute doll. Naomi's doctor did not recommend using the tapes

> or maybe I read your post wrong? This seems like something my

> daughter Hannah Rae could benefit from. She has an appointment on

> the 11th of January so I will ask the doc what he thinks.

>

> Is Naomi the first in your family to have BPES? At what age did her

> doctor say surgery was an option? Sorry I have so many questions.

> I am a new mom and what to obtain as much info as possible. THANKS

> for sharing your photos and your tape method!

>

> Happy New Year and Happy Winter!

> Angie

[Guest guest]

For Naomi, Our Prayers are with you for a safe journey, a successful operation, and quick healing. Children are resilient she probably won't miss a beat! Emalee Barrow Ern Chang <ern_chang@...> wrote: We're going for surgery! Naomi is now tall enough for autogenous fasica lata graft. We're off to

Seoul in a few weeks to have her surgery done by Prof Kim Yoon-Duck, a leading oculoplastic surgeon in this part of the world. We have seen results of her work and are rather impressed. Prof Kim usually does her surgery in 2 stages several months apart - medial epicanthoplasty as a first stage, then frontalis suspension 3-6 months after. For Naomi, she will be doing both stages at one go as we're travelling specifically to see her.Please pray for a smooth and painless process for Naomi, and the best ever results we can hope for. I'll keep y'all updated with photos once everything is done.E.Emalee Barrow

[Guest guest]

Ern, Best wishes to you and your family. Look forward to hearing how you go! Take care of that gorgeous little girl. Machaela (Aus) Harvey <happyappykd@...> wrote: Best wishes to Naomi and y'all! North Carolina, USA blepharophimosis Naomi C. We're going for surgery! Naomi is now tall enough for autogenous fasica lata graft. We're off to Seoul in a few weeks to have her surgery done by Prof Kim Yoon-Duck, a leading oculoplastic surgeon in this part of the world. We have seen results of her

work and are rather impressed. Prof Kim usually does her surgery in 2 stages several months apart - medial epicanthoplasty as a first stage, then frontalis suspension 3-6 months after. For Naomi, she will be doing both stages at one go as we're travelling specifically to see her.Please pray for a smooth and painless process for Naomi, and the best ever results we can hope for. I'll keep y'all updated with photos once everything is done.E.

Get the name you always wanted with the new y7mail email address.

[Guest guest]

Hello,

Good luck for the upcoming surgery. I hope everything goes well and

wish Naomi a quick and speedy recovery.

and Imogen

[Guest guest]

Hello Tonikka, Lucy ( & Holly), Shireen, April, Joyce, Machaela, ,

(and

Imogen) and ,

Thank you so much for keeping us in your thoughts and prayers. Your messages are

so

heart warming : ) I read them to Naomi and she's smiling and smiling!

I guess no parent is immune to pre-surgery anxiety so I will admit I have some

now, haha!

This will be our first time to Korea but have been told that it's a very

organised city and

friends who have been said they had one of their best holidays there despite the

language

barrier. So I guess that reduces some of the stress : )

We'll keep everyone updated. If anyone is interested, you could email me

personally and I'll

pass you some photos of the work that Prof Kim has done on BPES children. The

results

look very similar to Micah's (April's dear little boy).

Thank you from the bottom of my heart again,

love

MIchelle

> >

> > We're going for surgery! Naomi

> > <http://health.ph./group/blepharophimosis/photos/browse/\

> > a9b2?c=> is now tall enough for autogenous fasica lata graft. We're off

> > to Seoul in a few weeks to have her surgery done by Prof Kim Yoon-Duck,

> > a leading oculoplastic surgeon in this part of the world. We have seen

> > results of her work and are rather impressed. Prof Kim usually does her

> > surgery in 2 stages several months apart - medial epicanthoplasty as a

> > first stage, then frontalis suspension 3-6 months after. For Naomi, she

> > will be doing both stages at one go as we're travelling specifically to

> > see her.

> >

> > Please pray for a smooth and painless process for Naomi, and the best

> > ever results we can hope for. I'll keep y'all updated with photos once

> > everything is done.

> >

> > E.

> >

>

[Guest guest]

Wow. Wow. Wow.I'm so overwhelmed by all your responses that I'm getting a little film over my eyes. I wonder what that is - can't possibly be a crying daddy... must be dust again... ;-)Thanks so very much for your support, everyone.You know, we get so much more support in this group compared to anywhere else. No one else except all of you truly understand what it feels to be a parent of a child with BPES. I really hope this group will still be around when Naomi is old enough to read and post on her own - then she will personally experience the support that and I get from here.We will take the friendships forged from that meeting in London back in December 2005, plus the many others from emails and posts, with us to Seoul.By sheer coincidence (or is it divine providence?), we will be in Seoul when the Asia-Pacific Society of Oculoplastic Surgeons is having a major meeting. And guess what? The first morning of the meeting is devoted to BPES! There will be presentations by doctors and researchers from India and China, and I have asked Prof Kim if I could sit in if the opportunity arises.Thanks everyone (sniff),Ern (sniff sniff)PS: When we move to Melbourne later this year, we will certainly be looking forward to meeting up with the gang Down Under (that means YOU too Rob!)

[Guest guest]

Ern and ,

I'm late seeing your post since I've been away from this board in

awhile, but I do believe that even if my prayers for Naomi are after

the fact, providence is not bound by time...praying for her and your

family.

Best,

Debbie

--- In blepharophimosis , " Ern Chang " <ern_chang@...>

wrote:

>

> Wow. Wow. Wow.

>

> I'm so overwhelmed by all your responses that I'm getting a little film

> over my eyes. I wonder what that is - can't possibly be a crying

> daddy... must be dust again... ;-)

>

> Thanks so very much for your support, everyone.

>

> You know, we get so much more support in this group compared to anywhere

> else. No one else except all of you truly understand what it feels to be

> a parent of a child with BPES. I really hope this group will still be

> around when Naomi is old enough to read and post on her own - then she

> will personally experience the support that and I get from

> here.

>

> We will take the friendships forged from that meeting in London back in

> December 2005, plus the many others from emails and posts, with us to

> Seoul.

>

> By sheer coincidence (or is it divine providence?), we will be in Seoul

> when the Asia-Pacific Society of Oculoplastic Surgeons is having a major

> meeting. And guess what? The first morning of the meeting is devoted to

> BPES! There will be presentations by doctors and researchers from India

> and China, and I have asked Prof Kim if I could sit in if the

> opportunity arises.

>

> Thanks everyone (sniff),

> Ern (sniff sniff)

>

> PS: When we move to Melbourne later this year, we will certainly be

> looking forward to meeting up with the gang Down Under (that means YOU

> too Rob!)

>