Pictures of Alice and a qusetion to Leelee and others with small children

[Guest guest]

Hi Leelee,

I know that I'm very lucky to have my daughter, she is the best that ever happend to me! Before I got pregnant with Alice I had a missed abortion when I was 10 weeks pregnant. It was the sadest thing that has ever happend to me. So when Alice came, safe and sound, I was the happiest mummy there ever was!

I have many lovely pictures of Alice but I don't know how to find them on the computer. I will ask my husband to help me when he comes home.

I have all ready seen the pictures of Ethan. He is just so gorgeous! A wonderful little boy and it is wonderful to hear that he is so happy!

Alice really doesn't smile so often... I'm a little worried about it but I hope that she will start smile and laugh more often eventually.

A question for you, when Ethan was a baby did he like to be put on his tummy to play or whatch what was going on in the room?

Alice hates to be put on her tummy and she doesn't really make any efforts to lift her head. I was thinking that it might have to do with her dropping lids, it might be difficult for her to see, being on the floor like that. Did you experience this with Ethan at all?

Sometimes I worry so much for Alice but I find comfort in knowing that my own life and my brother and sister (they have bleph as well) have turned out just fine. I had a hard time in school before the surgery but it made me stronger as a person. I hope to give Alice enought love and suffort for her to cope if people are being nasty to her. I want her to feel that she is wonderful just the way she is!

I hope to hear from you again.

Greetings from Stina and Aliceleelee <tltne@...> wrote:

Do u have any pix of your daughter and yourself...and your other family members? Our son has blephs, the ONLY one in the whole family to have it? So don't know where it came from genetically, but our Dr says...*It has to start somewhere*

Our wee guy is 21 months old:) The happiest wee man too:) full of smiles and laughter...his smile lights up the room, there are pix of him at the site...under ethan, the younger ethan (as there are two ethans) he is wearing the pumpkin costume.

You are very lucky to have a baby! We have read about the 2 types of bleph, and one type cannot have babies, thats very sad.

If you have pix, please post them, always nice to see a new face:)

-- RE: blepharophimosis Re: News from Caroline and Scandinavia

Hi Ami!

I'm also new to this group. I'm 27 years old. My name is Stina and I live in Sweden and I'm married and have a little girl of 3 months, Alice.

I was born with blepharophimosis. My father has it as well as my brother and sister. And, I'm sorry to say, my little girl has it too...

I have taken her to see a doctor and she will probably have some surgery when she is arond 3 years old. I had surgery when I was 6 and again when I was 17.

I would love to have contact with you, if you want to!

If you are interested you can send me a mail at stina_ls@...

Best wishes StinaAndy Bowles & Shireen Mohandes <andy.bowles@...> wrote:

Hi Ami

Welcome to the group.

Here are some good sources of information:

http://freespace.virgin.net/andy.bowles/page6.html

You should definitely take a look at the first one, as it is pretty comprehensive.

I recommend that you ask your doctor to refer you to a geneticist so that they can answer any questions you may have.

Take care, Shireen

London

England

-----Original Message-----From: PB2X_Banshee [mailto:pb2x_banshee@...]Sent: 19 October 2004 13:33blepharophimosis Subject: blepharophimosis Re: News from Caroline and ScandinaviaHi I found your post on the group. I was born with blepharophimosis and now i am married and live in southern sweden. would like to chat with people about it. i cant seem to find enough info about the disorder. two years ago i was told that i had premature ovarian failure that is realated to the syndrom. I do hope to hear from you soonAmi