Introduction and questions

[Guest guest]

Hi - I want to start out by saying thank you for all the information

shared by this group. I've been a lurker for a couple months now and

it has really helped. My daughter has blepharophimosis and ptosis.

She didn't open her eyes at birth and then at a month it was

minimal. Initially they thought it was due to swelling at birth,

then blocked tear ducts. At two months she was seen by a plastic

surgeon who thought she had BPES. He scheduled sling surgery two

weeks later but we cancelled because we felt she was too tiny and we

didn't feel like we knew enough. He did mention the need for genetic

testing because of premature ovarian failure. Well at four months we

got the results back and she has a chromosome deletion disorder

(Deletion 3P) which has blepharophimosis and ptosis as

characteristics. We got a second opinion from both an opthmalogist

and plastic surgeon who thought it would be okay to hold off on

surgery a couple months. We saw a specialist too at Childrens

Hospital of Philadelphia - Dr. Katowitz - that was wonderful. He

suggested surgery between 4 - 6 months. We now have scheduled

surgery for Jan. 4th when she will be about 7 1/2 months (a little

later than hoped due to issues in scheduling). I'm looking forward

to it because I hope it will " open the world " a bit for her and help

in her development.

However, as the surgery approaches I'm getting a little nervous.

I know many here have gone through the same surgery with silastic

slings - (sorry not sure of spelling). I am wondering what questions

I should be asking the doctor or any issues of follow up care that

would be helpful to know.

Thanks again for all that people have shared - I'll be sure to

post pictures after her surgery.

Michigan, USA