RE: Surgery scheduled

[Guest guest]

Hello ! We are with you in wishing and praying for the best for Donovan. We can understand how you are feeling. Well we would be going through the same when our son is ready for surgery. At what age is Donovan undergoing surgery? Jay Hello everyone! I have joined this forum recently. Well let me introduce myself and my family. We are four in the family hailing from Mumbai but presently located in Bahrain. Myself, Jayateerth Adur. My wife, Jyoti Adur. My, elder son Akshay by gods grace is perfectly normal. My younger son Akash is afflicted with BPES. He was diagnosed with BPES in his 7 month. He has been given follow-up appointment in his 13 th month for further course of treatment. I came to

know about this syndrome and details through this group. Although doctor had mentioned Akash is suffering from BPES we didnt know what it is. This is an excellent group. The founders have done and are doing commendable job. Keep up the good work. Probably my mother-in-laws family from her maternal side is afflicted with this syndrome. However we always thought small eyes were family features. And never paid much attention to it. And best part is all of them are leading absolutely normal life. May I know any one from India specifically Mumbai in this group. Any information which eye clinic/doctor in Mumbai or India would they recommend for surgery/treatment. And what are their experience? With Best Regards Jayateerth sarah_skehan <sarah_skehan@...> wrote: Hi EveryoneDonovan is scheduled for surgery June 11th. We are excited and nervous of course. Does anyone have advice for what to expect right after? This may sound silly, but will he be able to blink easily?Also wondering how to respond to all the people that want to look at your baby, and then say "oh, he's sleepy" We have stopped responding, just smile. But it's very tiring!Wish I could be with you all tomorrow. Have fun for me.

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[Guest guest]

Dear sarah i know how you feel regarding well meaning people thinking that donovan is sleepy I have been through all of that when my son scott was little he is now 38 and he had the operation at Moorfields by Mr Collin and it has made great improvement. He is on the Web site and he is happy to answer any questions you may have as am I. He has 4 children 3 with BPES and 1 without Amber Jade was only born ten days ago one of identical twins sadly one died,we really dont know the severity of the condition in Amber Jade I hope all goes well for donovan and that you will be pleased with the outcome. Best Wishes Margaret Filbey (Cornwall)sarah_skehan <sarah_skehan@...> wrote: Hi EveryoneDonovan is scheduled for surgery June 11th. We are excited and nervous of course. Does anyone have advice for what to expect right after? This may sound silly, but will he be able to blink easily?Also wondering how to respond to all the people that want to look at your baby, and then say "oh, he's sleepy" We have stopped responding, just smile. But it's very tiring!Wish I could be with you all tomorrow. Have fun for me.

[Guest guest]

I can't be any help with surgery - Todd hasn't had any - but I know

what you mean about just smiling when people say he looks sleepy.

Since Todd has had his glasses we do get less comments and as he is

no longer in a pushchair I suppose a walking talking 4 year old can't

be sleepy can he???

Caroline

Kent, UK

>

> Hi Everyone

>

> Donovan is scheduled for surgery June 11th. We are excited and

nervous

> of course. Does anyone have advice for what to expect right after?

> This may sound silly, but will he be able to blink easily?

>

> Also wondering how to respond to all the people that want to look

at

> your baby, and then say " oh, he's sleepy " We have stopped

responding,

> just smile. But it's very tiring!

>

> Wish I could be with you all tomorrow. Have fun for me.

>

>

[Guest guest]

I also get the "your daughter looks so sleepy" comment. I usually respond by saying, "she's not sleepy, she just looks that way." The person who made the comment always looks confused and it makes me laugh.

(Charlotte, NC)

blepharophimosis Re: Surgery scheduled

I can't be any help with surgery - Todd hasn't had any - but I know what you mean about just smiling when people say he looks sleepy. Since Todd has had his glasses we do get less comments and as he is no longer in a pushchair I suppose a walking talking 4 year old can't be sleepy can he???CarolineKent, UK>> Hi Everyone> > Donovan is scheduled for surgery June 11th. We are excited and nervous > of course. Does anyone have advice for what to expect right after? > This may sound silly, but will he be able to blink easily?> > Also wondering how to respond to all the people that want to look at > your baby, and then say "oh, he's sleepy" We have stopped responding, > just smile. But

it's very tiring!> > Wish I could be with you all tomorrow. Have fun for me.> >

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[Guest guest]

Hi I can understand completely where you are coming from...my trip round a food store each week used to mean at least 3 or 4 comments from people about how Holly looked. 'Is she blind', 'whats wrong with her eyes', 'is she asleep' or even people staring which was sometimes worse! I must admit after Hollys surgery last September (her first eye lift) it made such a difference. Since then I have only had three comments, two from children, and I think people just think she has small eyes now. Her personality definitely shines through, a very bubbly and gorgeous two year old!! If you have any more questions please feel free to ask Lucy (Hampshire, UK)sarah_skehan <sarah_skehan@...> wrote: Hi EveryoneDonovan is scheduled for surgery June 11th. We are excited and nervous of course. Does anyone have advice for what to expect right after? This may sound silly, but will he be able to blink easily?Also wondering how to respond to all the people that want to look at your baby, and then say "oh, he's sleepy" We have stopped responding, just smile. But it's very tiring!Wish I could be with you all tomorrow. Have fun for me.

Answers - Got a question? Someone out there knows the answer. Try

it now.

[Guest guest]

we will be thinking of Donovan and your family

on June 11th. What type of surgery is Donovan

having? We are still learning all of the terminology

but is this a sling type surgery? How old is Donovan?

We also get the comment...he looks like he is trying

to wake up....I haven't come up with a good response

yet..... is 15 weeks and we are meeting

with some more specialists in the next two weeks.

(Childrens Hospital, Chicago, IL, USA) May 22nd we

meet with a new pediatric opthamologist and May 29th

we meet with a genetics specialist. Have any of you

ever met with a pediatric neurologist? A family

friend who is a neurologist recommended that we at

least seek a consultation but we have not scheduled

one yet as it is fairly difficult to get in.

We are definitely realizing Christoher will need

surgery soon...when we lift his eyelids for him when

he is laying down he gets a huge smile. Thank you so

much to everyone for their contributions to this

group...it reminds me that although this condition is

rare, is not alone and as his parents we

can seek advice. Take care.

Anne and Rob Weber

Chicago, IL

--- Harvey <happyappykd@...> wrote:

> I also get the " your daughter looks so sleepy "

> comment. I usually respond by saying, " she's not

> sleepy, she just looks that way. " The person who

> made the comment always looks confused and it makes

> me laugh.

>

>

> (Charlotte, NC)

>

>

> blepharophimosis Re: Surgery scheduled

>

> I can't be any help with surgery - Todd hasn't had

> any - but I know

> what you mean about just smiling when people say he

> looks sleepy.

> Since Todd has had his glasses we do get less

> comments and as he is

> no longer in a pushchair I suppose a walking talking

> 4 year old can't

> be sleepy can he???

>

> Caroline

> Kent, UK

>

>

> >

> > Hi Everyone

> >

> > Donovan is scheduled for surgery June 11th. We are

> excited and

> nervous

> > of course. Does anyone have advice for what to

> expect right after?

> > This may sound silly, but will he be able to blink

> easily?

> >

> > Also wondering how to respond to all the people

> that want to look

> at

> > your baby, and then say " oh, he's sleepy " We have

> stopped

> responding,

> > just smile. But it's very tiring!

> >

> > Wish I could be with you all tomorrow. Have fun

> for me.

> >

> >

>

>

>

>

>

>

>

________________________________________________________________________________\

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> a better Heartthrob. Get better relationship answers

> from someone who knows. Answers - Check it

> out.

>

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[Guest guest]

My son aedan is almost 5. He couldnt open his eyes when he was born. The sling surgery, at 10 weeks was a huge success and still holding. See what's free at AOL.com.

[Guest guest]

Hello Jay

Welcome to the group. I was recently in touch with Deepak and

Lata, and they have told you about their lovely little daughter Anushka. I had the

pleasure of meeting them when they came to London a couple of years ago to see

Mr Collin.

I hope that they are able to help you with the specific

questions that you raised.

I am 46 years old, my father is from Iran, and my mother from

England. I was born in Iran, in the south part. Surprisingly enough very soon

after I was born they were able to diagnose my condition and I was lucky to

have the benefit of an excellent surgeon at a very young age. Each of us is a different

person Jay. In my circumstances it was important to have surgery early as I was

tipping my head back to far to see. So I had my first operation at 2.5 years of

age. However, these days techniques have advanced so much that the very first

op is takes just a couple of hours or less, and the children are often sent

home at the end of the day. So – there isn’t too much point in me letting you

have any details about my treatment as it is not relevant. The point I would

really like to emphasise is that there is no substitute for professional advice,

and that each of us is a different person, with their own set of

circumstances. Some babies are have surgery at a very young age. For others,

where vision is not impaired, treatment takes place when they are older. But

these are things that your doctor will tell you.

May I recommend that you make yourself a nice cup of tea and then

try to work your way through the first two links on this site?

http://freespace.virgin.net/andy.bowles/index_Page338.htm

A warning – you may need to look up some of the words in the

internet, and skip some of the very detailed parts on genetics, as they are of

little meaning to the lay person.

Take care

Shireen Mohandes

London, England

From: blepharophimosis

[mailto:blepharophimosis ] On Behalf Of Jayateerth Adur

Sent: 13 May 2007 07:31

blepharophimosis

Subject: Re: blepharophimosis Surgery scheduled

Hello !

We are with you in wishing and praying for the best for

Donovan.

We can understand how you are feeling. Well we would be

going through the same when our son is ready for surgery. At what age is

Donovan undergoing surgery?

Jay

Hello everyone!

I have joined this forum recently. Well let me introduce

myself and my family.

We are four in the family hailing from Mumbai but presently

located in Bahrain. Myself, Jayateerth Adur. My wife, Jyoti Adur. My, elder son

Akshay by gods grace is perfectly normal. My younger son Akash is

afflicted with BPES. He was diagnosed with BPES in his 7 month. He has

been given follow-up appointment in his 13 th month for further course of

treatment.

I came to know about this syndrome and details through

this group. Although doctor had mentioned Akash is suffering from BPES we didnt

know what it is. This is an excellent group. The founders have done and are

doing commendable job. Keep up the good work.

Probably my mother-in-laws family from her maternal

side is afflicted with this syndrome. However we always thought small eyes

were family features. And never paid much attention to it. And best

part is all of them are leading absolutely normal life.

May I know any one from India specifically

Mumbai in this group. Any information which eye clinic/doctor in Mumbai or

India would they recommend for surgery/treatment. And what are their

experience?

With Best Regards

Jayateerth

sarah_skehan <sarah_skehan@...> wrote:

Hi Everyone

Donovan is scheduled for surgery June 11th. We are excited and nervous

of course. Does anyone have advice for what to expect right after?

This may sound silly, but will he be able to blink easily?

Also wondering how to respond to all the people that want to look at

your baby, and then say " oh, he's sleepy " We have stopped responding,

just smile. But it's very tiring!

Wish I could be with you all tomorrow. Have fun for me.

Looking for a deal? Find

great prices on flights and hotels with FareChase.

[Guest guest]

Hi Cherie,

Congratulations. Yes, En Bloc does. You'll be in great hands with Dr. Huang and you are right, the cost is well worth having it done correctly the first time.

Hugs, Lynn

Surgery scheduled

Hi ladies,I just back back from vacation and was able to schedule my surgery with Dr. Huang today. It's scheduled for November 13. It's costing ALOT, but I know it will be worth it in the end. I do have a question for you all, she is doing the En Bloc, does this include the removal of the capsules?Thanks!Cherie

[Guest guest]

Cherie, Dr. Huang is very reasonable, compared to some docs! . . . Mine was $12,000 in 1994. Rogene

[Guest guest]

> > Hi ladies,

> >

> > I just back back from vacation and was able to schedule my

surgery

> with

> > Dr. Huang today. It's scheduled for November 13. It's costing

ALOT,

> > but I know it will be worth it in the end. I do have a question

for

> you

> > all, she is doing the En Bloc, does this include the removal of

the

> > capsules?

> >

> > Thanks!

> > Cherie

> >

> >

> >

> >

[Guest guest]

Hi

The fat transfer is due to needing the lift and I will need some

fluff. I will be flat and saggy if I just have the removal.

Cherie

> > > >Hi Cherie,

> > > Im glad to hear that you have everything scheduled and are on

> your

> > > way to healing . Did the doc say what it was so expensive? I

> was

> > > just curious? Are you just having en bloc or are there other

> issues

> > > as well?

> > >

> > >

> > > >

> > >

> > >

> > >

> > >

> > > Rogene,

> > > >

> > > > Wow, sorry to hear you paid that in 1994, thats what I am

> being

> > > charged

> > > > now.

> > > >

> > > > Cherie

> > > >

> > > > --- In , Rogene <saxony01@>

wrote:

> > > > >

> > > > > Cherie,

> > > > >

> > > > > Dr. Huang is very reasonable, compared to some

docs! . . .

> > > > >

> > > > > Mine was $12,000 in 1994.

> > > > >

> > > > > Rogene

> > > > >

> > > >

> > >

> >

>

[Guest guest]

ok, i got ya. Thats really cool that they can do that.

> > > > > >

> > > > > > Cherie,

> > > > > >

> > > > > > Dr. Huang is very reasonable, compared to some

> docs! . . .

> > > > > >

> > > > > > Mine was $12,000 in 1994.

> > > > > >

> > > > > > Rogene

> > > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

~

Your body has been thru a major surgery.

Actually 2 major surgerys. It is very important

to rest so you can heal well. Getting some

sunshine , and taking walks is ok, but much more

is too much. It takes awhile to heal from the

inside, so let your intuition be your guide......

Drink lots and lots of water to help filter out

all the toxins. You got lots in your anesthesia.

I have one of my anesthesia reports, and I was

amazed at all the drugs they give.

I am so glad you are doing well. Please get lots

of rest though !

Hugs N Prayers ! DedeSee what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

As my husband says... " we pay 30,000 for a new car why would we not

want the best when it comes to your body " .

Puts it into perspective....

I've gotten behind in reading posts here. I tried to do too much

today. First day home. I finally collapsed into bed about 4pm.

Every day is better. Sounds too good to be true but the rash I have

had for 4 months on my arms and chest is actually looking better.

I'm taking all kinds of supplements, eating fresh fruit smoothies.

Really trying to work on getting better.

I just need to remember that I can't be superwoman yet. I still need

to let my body rest.

> > >

> > > Cherie,

> > >

> > > Dr. Huang is very reasonable, compared to some docs! . . .

> > >

> > > Mine was $12,000 in 1994.

> > >

> > > Rogene

> > >

> >

>

[Guest guest]

Speaking of being done right...

I am very excited that the fat transfers she did to my breasts look

great. They are symetrical and look very natural. (except that they

are still black and blue and green from bruising). But I'm very

pleased with the results.

> > > >

> > > > Cherie,

> > > >

> > > > Dr. Huang is very reasonable, compared to some docs! . . .

> > > >

> > > > Mine was $12,000 in 1994.

> > > >

> > > > Rogene

> > > >

> > >

> >

>

[Guest guest]

. . . You've got the right attitude to get well! . . . I have no doubt you'll do it! It does take committment, patience and discipline! . . . You've got it! Love, Rogene

[Guest guest]

Patty ~

You know, it would be so nice just to change

the fashion back to nice small breast sizes

that exist and dont make up who you are to

yourself or to men. Big breasts seem to

make men have a malfunction in the electrical

activity of their brains and revert them back to

infancy with the desire to breast feed.....LOL

I believe changing the theme of what makes a

confident woman would be a great thing to do.

These days they teach our young girls that

confidence comes with boobs, and not self

love and brains. We need to move to change

this. Learn to be proud of the skin were in.

Hugs DedeSee what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

Patty ~

You know, everything the way it is

now, is to downdumb everyone for

income.........so we are creating a

world of humans with artificial

nutrician,body parts, and no brains.

Almost sound like Barbie and Ken ~

Love ya ~ DSee what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

Dede, I couldn't agree more. PattyDGRAHAMA@... wrote: Patty ~ You know, it would be so nice just to change the fashion back to nice small breast sizes that exist and dont make up who you are to yourself or to men. Big breasts seem

to make men have a malfunction in the electrical activity of their brains and revert them back to infancy with the desire to breast feed.....LOL I believe changing the theme of what makes a confident woman would be a great thing to do. These days they teach our young girls that confidence comes with boobs, and not self love and brains. We need to move to change this. Learn to be proud of the skin were in. Hugs Dede See what's new at AOL.com and Make AOL Your Homepage.

Be a better Globetrotter. Get better travel answers from someone who knows. Answers - Check it out.

[Guest guest]

Patty.

Thanks for this info! I make to sure that I have this right, should

I be asking Dr. Huang if she does the CAL tissue augmentation

procedure? If she does not, should I reconsider the fat transfers?

Thanks for your help!

Cherie

> > > > > >

> > > > > > Cherie,

> > > > > >

> > > > > > Dr. Huang is very reasonable, compared to some

> docs! . . .

> > > > > >

> > > > > > Mine was $12,000 in 1994.

> > > > > >

> > > > > > Rogene

> > > > > >

> > > > >

> > > >

> > >

> >

>

>

>

>

>

>

> ---------------------------------

> oneSearch: Finally, mobile search that gives answers, not

web links.

>

[Guest guest]

Cherie, As far as I know, the CAL is not being done in America at this time. You can ask Dr. Huang if she knows when it will be available. It's up to you if you want to reconsider the fat transfer cost at explant. If you have the extra $$ to spare, and you feel comfortable with the procedure, then you should go with what your heart desires. If you do not have the $$, and it would be a stretch financially, I wouldn't spend the money, as you have no guarantee that your body won't just absorb most of the fat down the road. It's really your choice. You just have to go into this knowing that the current fat transfer technique does not have guaranteed permanent results, and has some potential drawbacks. Pattycannst42 <cannst42@...> wrote: Patty.Thanks for this info! I make to sure that I have this right, should I be asking Dr. Huang if she does the CAL tissue augmentation procedure? If she does not, should I reconsider the fat transfers?Thanks for your help!Cherie> > > > > >> > > > > >

Cherie,> > > > > > > > > > > > Dr. Huang is very reasonable, compared to some > docs! . . . > > > > > > > > > > > > Mine was $12,000 in 1994.> > > > > > > > > > > > Rogene> > > > > >> > > > >> > > >> > >> >> > > > > > > ---------------------------------> oneSearch: Finally, mobile search that gives answers, not web links.>

Luggage? GPS? Comic books?

Check out fitting gifts for grads at Search.

[Guest guest]

I agree Dede, it will be the undoing of our society. Greed is going to widen the gap between the have's and the have not's, and foolish people are the ones who will end up being the have not's because they are enticed by every temptation out there designed to take their money from them. What's the saying? "A food and his money are easily parted"? I watch what's on television and I am appalled at the ignorance, the shallowness, the focus on temporary pleasures, the lack of intelligence displayed on most shows. I don't watch TV, but that's because I find it so incredibly dull and/or sickening. Our kids are obsessed with video games, cell phones, sex, and everything else but their studies. Their brains are being fried by cell phones, poor nutrition and poor education. I truly fear for this country! The kids we are raising now will be those in control

when we retire. Where will all the money needed to run this country come from? The greedy will find ways to hide what they take unethically...it's not a good outlook, that's for sure! Patty DGRAHAMA@... wrote: Patty ~ You know, everything the way it is now, is to downdumb everyone

for income.........so we are creating a world of humans with artificial nutrician,body parts, and no brains. Almost sound like Barbie and Ken ~ Love ya ~ D See what's new at AOL.com and Make AOL Your Homepage.

Got a little couch potato?

Check out fun summer activities for kids.

[Guest guest]

Cherie,

I would ask the doctor about the success rate for this surgery. She

would be the one who knows the procedure and the success rate the

best. Ask her about complications. Any of us are not nearly as

qualified to answer these questions as she would be. Scaring you

about your procedure is probably not a good thing for any of us to be doing.

Lynda

At 09:33 AM 9/18/2007, you wrote:

>Patty.

>

>Thanks for this info! I make to sure that I have this right, should

>I be asking Dr. Huang if she does the CAL tissue augmentation

>procedure? If she does not, should I reconsider the fat transfers?

>

>Thanks for your help!

>Cherie

>

>

> > > > > > >

> > > > > > > Cherie,

> > > > > > >

> > > > > > > Dr. Huang is very reasonable, compared to some

> > docs! . . .

> > > > > > >

> > > > > > > Mine was $12,000 in 1994.

> > > > > > >

> > > > > > > Rogene

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

> >

> >

> >

> >

> >

> > ---------------------------------

> > oneSearch: Finally, mobile search that gives answers, not

>web links.

> >

>

>

[Guest guest]

Lynda, I don't think anyone is trying to scare Cherie about her procedure at all. I just think that women should understand there are drawbacks, just as there were drawbacks that we weren't clear about with implants, and that those drawbacks need to be considered. What I don't want to have happen is to have women think that spending several thousand dollars on a fat transfer procedure is going to replace their implants, especially if this is a financial hardship. I'm all about common sense....and letting the woman decide with the help of her surgeon, given she has all of the information she needs. Patty Lynda Roth <coss@...> wrote: Cherie,I would ask the doctor about the success rate for this surgery. She would be the one who knows the procedure and the success rate the best. Ask her about complications. Any of us are not nearly as qualified to answer these questions as she would be. Scaring you about your procedure is probably not a good thing for any of us to be doing.LyndaAt 09:33 AM 9/18/2007, you wrote:>Patty.>>Thanks for this info! I make to sure that I have this right, should>I be asking Dr. Huang if she does the CAL tissue augmentation>procedure? If she does not, should I reconsider the fat transfers?>>Thanks for your help!>Cherie>>> > > > > > >> > > > > > > Cherie,> > > > > > >> > > > > > > Dr. Huang is very reasonable, compared to some> > docs! . . .> > > > > > >> > > > > > > Mine was $12,000 in 1994.> > > > > > >> > > > > > > Rogene> > > > > > >> > > > > >> > > > >> > > >> > >> >>

>> >> >> >> >> > ---------------------------------> > oneSearch: Finally, mobile search that gives answers, not>web links.> >>>

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