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So glad to hear from you, thank you for sharing!

love

Beth and Lily

> is doing awesome ...swollen and a lot of gook in her eyes

today

> but she is back to being her old self. Surgery took about 1 1/2

> hrs...she came out hysterical but recovered in a bout an hr...She

was

> sleepy and cranky all day...but at 4am decided she was over it and

> played til 8 30 am ! so mom didn;t sleep much. I have pics if anyone

> would like to see send me and email and i will send from my aol

> account...sancilleri@a... thanks for the prayers. Sharon

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Hi Sharon

I am glad is doing great,its amazing how they bounce back so quick.Did she just have slings or have they done the ethicantus as well? Have you been recommended to put ointment in her eyes to stop them drying out?.Would love to see pics.

Take care and chin up.

besilly12000 <besilly12000@...> wrote:

is doing awesome ...swollen and a lot of gook in her eyes today but she is back to being her old self. Surgery took about 1 1/2 hrs...she came out hysterical but recovered in a bout an hr...She was sleepy and cranky all day...but at 4am decided she was over it and played til 8 30 am ! so mom didn;t sleep much. I have pics if anyone would like to see send me and email and i will send from my aol account...sancilleri@... thanks for the prayers. Sharon

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Sharon,

I'm so glad she is doing well today. She really does

look GREAT! And such a happy little doll! Praying

healing goes quickly and smoothly. Keep us updated on

how she is doing.

Hugs,

April

--- besilly12000 <besilly12000@...> wrote:

> is doing awesome ...swollen and a lot of

> gook in her eyes today

> but she is back to being her old self. Surgery took

> about 1 1/2

> hrs...she came out hysterical but recovered in a

> bout an hr...She was

> sleepy and cranky all day...but at 4am decided she

> was over it and

> played til 8 30 am ! so mom didn;t sleep much. I

> have pics if anyone

> would like to see send me and email and i will send

> from my aol

> account...sancilleri@... thanks for the prayers.

> Sharon

>

>

>

__________________________________________________

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-Hi Tawnya, My name is Jill and my daughter is Ruth. She is 2 now but

had her sling surgery at 8 months old at the Boston Childrens

Hospital here in Mass. Her Doctor is great. The doctor is Dr.

Dagi. -- In blepharophimosis , " mtcarvsophia "

<mtcarv@...> wrote:

>

> Good luck on your March 7 surgery, you will be in our thoughts and

> prayers!

>

> We have an 8 month old girl who just saw her pediatric

opthamologist

> and has astigmatism in both eyes. The opthamologist want the

surgeon

> to do the sling surgery, but the surgeon isn't sure this is

> necessary. We would like to get a second opinion and was wondering

if

> anyone had any suggestions in CO, CA or MA.

>

> We will be in CA in June and have heard good things about the Jules

> Stein Eye Institute at UCLA. We have also thought about

Massachusetts

> Eye and Ear. Does anyone have any experiences with these

institutions

> or any suggestions??

>

> Thanks for your help,

> Tawnya

>

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Hi Jill,

Thanks for the information. I will have my husband give him a call, he's an Internist, seems that docs like docs. Anyways, we are also going to try the Jules Stein Institute at UCLA, have you heard anything about them?? Do you think that it is worth flying out to Boston for this surgeon? I wish there was more banter on the site from people in the USA. Thanks for information, I appreciate it.

Thanks again,

Tawnya

-------------- Original message -------------- From: "jricard5" <jricard5@...> -Hi Tawnya, My name is Jill and my daughter is Ruth. She is 2 now but had her sling surgery at 8 months old at the Boston Childrens Hospital here in Mass. Her Doctor is great. The doctor is Dr. Dagi. -- In blepharophimosis , "mtcarvsophia" <mtcarv@...> wrote:>> Good luck on your March 7 surgery, you will be in our thoughts and > prayers! > > We have an 8 month old girl who just saw her pediatric opthamologist > and has astigmatism in both eyes. The opthamologist want the surgeon > to do the sling surgery, but the surgeon isn't sure this is > necessary. We would like to get a second opinion and was wondering if > anyone had any suggestions in CO, CA or MA. > > We will be in CA in June and have heard good things about the Jules > Stein Eye Institute at UCLA. We have also thought about Massachusetts > Eye and Ear. Does anyone have any experiences with these institutions > or any suggestions??> > Thanks for your help,> Tawnya>

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Tawnya,

Hi there, sorry for this rather late response, haven't been on line much. I hope I'm not to late. We have a great Dr. here in San Diego. He's with the Shiley eye center. He is an Oculoplastic Surgeon. Our optho told us to go see Dr. Kikkawa, Our Dr put it this way, " I know my strengths and i know my weaknesses, when my child needed a more extensive surgery, I sent him to Dr. Kikkawa."

Here's the number to the patient care coordinator : 858-822-5972

Here's his big "impressive" title

Division of Oculofacial Plastic and Reconstructive Surgery

Chief, Don O. Kikkawa,MD

We are set for Malenah's first surgery April 12. Dr. Kikkawa has a great demeanor, he's very knowledgeable, just a great guy!

Good luck to you,

and Malenah

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Hi, my name is angela. I'm having my gall bladder out on mon the 11th.

I'm really nervous and worried, can anyone relate to how i feel? It

seems like I can't make peace with myself and come to terms with what

feels like a dark cloud hanging over my head.

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Maybe you are being internally or divinely guided to hold onto the little puppy

awhile longer and pursue some other options. -Dave

----- Original Message -----

From: angela<mailto:sexycibby35@...>

gallstones <mailto:gallstones >

Sent: Friday, December 08, 2006 11:26 AM

Subject: Surgery

Hi, my name is angela. I'm having my gall bladder out on mon the 11th.

I'm really nervous and worried, can anyone relate to how i feel? It

seems like I can't make peace with myself and come to terms with what

feels like a dark cloud hanging over my head.

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Hi Emalee, My name is Machaela. Just wondering if you could share a little bit of info on the new technique with "eye widening" that you read about? My daughter is having this surgery on April 8th and I am really interested in what you have read about. Thankyou! - Machaela in Australia (hmmm that ryhmes)emalee <emaleebarrow@...> wrote: Hi , Thank you for the information. It does seem to be on a case per case basis. What will be involved in your daughters eye

widening operation? I had read about a new technique done in Europe posted by the EPOS. I have to say I'm terribly jealous of your location... I've always wanted to travel to Ireland. Thanks, Emaleecretemum <cretemum (DOT) co.uk> wrote: >> Hi Emalee,> > My daughter, aged 21 months has BPES and had sling surgery on both eyes at 6mths, Jan -07. We were advised by our surgeon here in Ireland, that they would not replace the silicone either with fascia from the leg. But 's silicone sucture on one eye has not healed properly, and on a follow up visit with the specialist in the UK, that surgeon said

that he would replace the silicone with fascia from her leg at 4yrs old, after he has done the eye widening operation (which is not available in Ireland unfortunately!)> So in my very humble opinion, I think, based on what I have been told, and from reading the many posts on this website - it really is on a case by case basis. Some surgeons have different preferences or thoughts on what is best, and I suppose that's fair enough, that you have to do what is specifically right for the person that is having the surgery. But I am sure you will get lots of info, advice and details from the wonderful members of this site, who have way more experience than I have ;0)> > Welcome to the group!> > > Kildare, Ireland> > > blepharophimosis Surgery> > HI! I'm new to the group. We have 3 children, only one with Bleph.> We also don't have any other family members with this. Ethan had his > first surgery at 6months(a sling). He is well adjusted and has 20/20 > vision. I was wondering if any of you had opinions on additional > surgeries. I noticed in some of the photos some of the young children > seem to have 3 incisions versus the one than had in the brow. Given > that techniques continue to change rapidly with this issue I would like > to know what the latest opinions are. We were advised at a check-up > that they no longer replace the silicon sling with thigh fascia, were > that was the norm the previous year. Ethan is now 12 yrs.

and his last > check up the doctors agreed any additional surgery would be up to him. > With Highschool approaching I thought it would be a good idea to have > additinal info.> Thanks, > Emalee> > > > > Send instant messages to your online friends http://uk.messenger.>Hi ,I've just read your posting with interest. My son, Dominic (see photos under Dominic) had the frontalis sling op on 30th January this year. All seemed to go well. But his right eye, like your case, never healed. 2 weeks ago it became badly infected and he was put on high dose antibiotics. The infection has gone down now but there is a visible red line between one upper and the corresponding lower incision. Our surgeon says it looks as though the Gortex material (he is too young at 18 months for the thigh muscle to be

used) has begun to 'cheesewire' through the surrounding tissue.We are due back on the 12th to see the surgeon (unless things get worse) to make the final decision, but it looks likely that his eye will need to be re-done; it has started to droop over his pupil again.So you are very right to advise that it is a 'case by case' decision; we had also hoped that this would be 'it'. Our surgeon thought that Dominic would perhaps not even need the operation redoing with fascia lata at aged approx 4. Thanks for the interesting post, and good luck to all those going through this.Best WishesLeonie & Dom Emalee Barrow Never miss a thing. Make your homepage.

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

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Hi Emalee,

Sorry for the delay in getting back to you, we were away travelling around the west of Ireland for Easter holidays! Ireland is a cool place to live, as long as you don't mind lots of rain!! ;0)

I am not 100% sure how the eye-widening will be done, Mr told us when we went last August, to bring back when she is 3yrs old, to discuss having the surgery at 3 1/2 for the widening and then permanent lift if necessary using the leg muscle at 4yrs old. He did mention, that she didn't have to have trans-nasal wiring as there is enough skin between her eyes and nose, so I think it's called a z something!! Sorry - I am sure the folks here will know what it's specifically called ;0)

The stitch above s left eye gets infected every time she has a cough or cold, I noticed, it gets like a red bump, and we don't give her antibiotics, even though we were told to do so, as the antibiotic cream heals it up, within about 2-3 days after we applied it, and so we decided to do just that.. rather than giving her oral antibiotics each time, as I'd rather save them, for when she does need them for chest infections etc.. which she is also prone to... My Mum told me it's 'Teething Bronchitus!' which we all had as babies!! So anyway, that's what we decided to do. We also get her eyes checked each 3 to 6 months by an orthoptist and her ophthamlmic surgeon to make sure her vision and openings are ok, which thankfully, they seem to be.

Sorry for the longwinded post... I am sure any questions you have on the widening procedure can be answered by someone more knowledgeable than me, as I know a few of the kids have had it already.

Hope you and all your family are keeping well... Roll on Summer Holidays!!

x

Kildare, Ireland

blepharophimosis Surgery> > HI! I'm new to the group. We have 3 children, only one with Bleph.> We

also don't have any other family members with this. Ethan had his > first surgery at 6months(a sling). He is well adjusted and has 20/20 > vision. I was wondering if any of you had opinions on additional > surgeries. I noticed in some of the photos some of the young children > seem to have 3 incisions versus the one than had in the brow. Given > that techniques continue to change rapidly with this issue I would like > to know what the latest opinions are. We were advised at a check-up > that they no longer replace the silicon sling with thigh fascia, were > that was the norm the previous year. Ethan is now 12 yrs. and his last > check up the doctors agreed any additional surgery would be up to him. > With Highschool approaching I thought it would be a good idea to have > additinal info.> Thanks, > Emalee> > >

> > Send instant messages to your online friends http://uk.messenger .>Hi ,I've just read your posting with interest. My son, Dominic (see photos under Dominic) had the frontalis sling op on 30th January this year. All seemed to go well. But his right eye, like your case, never healed. 2 weeks ago it became badly infected and he was put on high dose antibiotics. The infection has gone down now but there is a visible red line between one upper and the corresponding lower incision. Our surgeon says it looks as though the Gortex material (he is too young at 18 months for the thigh muscle to be used) has begun to 'cheesewire' through the surrounding tissue.We are due back on the 12th to see the surgeon (unless things get worse) to make the final decision, but it looks likely that his eye will need

to be re-done; it has started to droop over his pupil again.So you are very right to advise that it is a 'case by case' decision; we had also hoped that this would be 'it'. Our surgeon thought that Dominic would perhaps not even need the operation redoing with fascia lata at aged approx 4. Thanks for the interesting post, and good luck to all those going through this.Best WishesLeonie & Dom

Emalee Barrow

Never miss a thing. Make your homepage.

Send instant messages to your online friends http://uk.messenger.

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