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Hello,

Regarding the procedure that Carla's daughter had-my daughter also had a similar procedure when she was about 2 and 1/2 years old. The original plan was to make an incision in each upper eyelid and then use donated tendons from a cadaver to provide her with strong enough tendons to lift the upper eyelids because the doctor was not sure what he would find until he opened up the eyelids. The incisions were carefully planned so that they would help to form eyelid creases for each eye, which she did not have due to her BEPS. When they did the surgery, there was enough healthy structure inside the upper eyelid that they did not have to use the donated tendons-they stitched her existing tendons in such a way that she was able to open her eyelids and see more of the world around her. It was a day surgery procedure and she came home with about 4 small stitches in each eyelid incision. One of the

eyes needed to be "redone" using the same surgeon and the same procedure but that was due to a concern about a bit of drooping or lack of symmetry we had within the first sixth months after the initial procedure. The healing was quick and while we can still see the scars (she is very fair skinned and 19 and 1/2 at the present time) we are all still very happy and pleased with the results.

She has recently (on August 15th) had lower eyelid surgery (bilateral ectropion repair) due to both lower lids being a bit droopy which caused some problems with her eyelashes scratching the whites of her eyes and causing the eyes to be sore and dry. Both the occuplastic surgeon who did her surgery and the general practitioner she saw to get the necessary pre-operation approval were genuinely impressed with how good her upper eyelids still looked and told us that the upper eyelid surgery was some of the best they had seen.

I share this information with you only as a parent who has traveled this journey over the past several years. Advocating for our children can be difficult, challenging and in the end hopefully one of the most rewarding things we do. All the best.

> From: tailynn03 <tailynn03 (DOT) com>> Subject: blepharophimosis Re: New Post op Picture> blepharophimosis> Date: Saturday, September 6, 2008, 2:09 PM> > >> > Hi Everyone. I just posted a new picture of nna 6> weeks post op. > > Last Novenber she had her epicanthis fold done and> this

last surgery > > She had her lids lifted . He gave her a lid line so it> looks like she > > blinks. The doctor did soft tissue suturing he did not> use any > slings. > > We where please with the results. She tells me she can> see so much > > better and she says things are brighter.Bless her> little heart. > > Carla > > Watertown Ct> >> > > WOW... she looks AWESOME!!!!! !!!!11

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Thankyou so much for your responses.Our surgeon tells us he will be using tendon from the leg.Our daughter is 3yrs old.Her pics are under "jessie girl"......I am confused,as I am starting to realise that there seems to be two different ways of performing this operation...one using tendon from the leg (or donated) and the other, using what is inside the eyelid.....From what I have seen,the second option seems to have the better result and seems to be less involved,but I am wondering why our surgeon has never mentioned this to us....I will have to ask him these questions....sorry everyone I am probably thinking out loud here!! Im just wondering why he has never spoken of other methods and am interested to know his reasons for the method he does....blah blah thanks again for your responses! This group is a blessing.> From: tailynn03 <tailynn03 (DOT) com>> Subject: blepharophimosis Re: New Post op Picture> blepharophimosis> Date: Saturday, September 6, 2008, 2:09 PM> > >> > Hi Everyone. I just posted a new picture of nna 6> weeks post op. > > Last Novenber she had her epicanthis fold done

and> this

last surgery > > She had her lids lifted . He gave her a lid line so it> looks like she > > blinks. The doctor did soft tissue suturing he did not> use any > slings. > > We where please with the results. She tells me she can> see so much > > better and she says things are brighter.Bless her> little heart. > > Carla > > Watertown Ct> >> > > WOW... she looks AWESOME!!!!! !!!!11

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Hello,

I believe that each surgeon tries to make the best plan based on their educational background and training, skills, research, and what they believe to be the best for each of their patients. Perhaps your doctor believes the results will be better for her with the procedure he has planned.

My daughter's surgery took place in Houston, Texas, USA in the early 90's and only after repeated efforts by me to get an eye specialist to diagnose what was up with her lid structure-why she couldn't open her eyes very wide, why she always looked so sleepy (you know what I mean since you are living in that moment right now). I should add that my daughter is the first person in our families to have BPES, also. So we really didn't know anything about what was going on until I happened upon a younger ophthalmologist that had just seen and diagnosed another child with BPES in her practice.

I don't have any really good before or after pictures that really focus on her eye structure but if you go to Wikipedia and type in Blepharophimosis to do a search you can see a picture that looks pretty much identical to where she was back before her surgery.

Again take care and best of luck to your family and especially your beautiful daughter.

> From: tailynn03 <tailynn03 (DOT) com>> Subject: blepharophimosis Re: New Post op Picture> blepharophimosis> Date: Saturday, September 6, 2008, 2:09 PM> > >> > Hi Everyone. I just posted a new picture of nna 6> weeks post op. > > Last Novenber she had her epicanthis fold done and> this

last surgery > > She had her lids lifted . He gave her a lid line so it> looks like she > > blinks. The doctor did soft tissue suturing he did not> use any > slings. > > We where please with the results. She tells me she can> see so much > > better and she says things are brighter.Bless her> little heart. > > Carla > > Watertown Ct> >> > > WOW... she looks AWESOME!!!!! !!!!11

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I hope you get "peace" with your decision on surgery. My heart goes out to you, could there be a more tough decision than trying to do the best for ones child. She's a beautiful girl and I'm sure all will be well. Be patient and thorough.

Best wishes,

Emalee Barrow> From: tailynn03 <tailynn03 (DOT) com>> Subject: blepharophimosis Re: New Post op Picture> blepharophimosis> Date: Saturday, September 6, 2008, 2:09 PM> > >> > Hi Everyone. I just posted a new picture of nna 6> weeks post op. > > Last Novenber she had her epicanthis fold done and> this

last surgery > > She had her lids lifted . He gave her a lid line so it> looks like she > > blinks. The doctor did soft tissue suturing he did not> use any > slings. > > We where please with the results. She tells me she can> see so much > > better and she says things are brighter.Bless her> little heart. > > Carla > > Watertown Ct> >> > > WOW... she looks AWESOME!!!!! !!!!11

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