Re: Hannah Rae

November 1, 2004

hello

Hannah Rae, what a beautiful name. congratulations! My name is

, my son Aedan is 2 and has Blepharophimosis. He had severe ptosis when

he

was born and had surgery at 10 weeks to make sure he had a chance to develop

sight. His eyesight seems great 20/30 at a 2 year old eye exam, which our Dr

said is the best one can get from a 2 year old. We also try patching in order

to even out strong eye weak eye stuff. If you haven't already take Hannah to

a pediatric opthalmologist to help you with her sight development along the

way. Congratulations again,

November 1, 2004

hi angie and Hannah Rae

your daughter sure is a beautiful little girl, her pictures remind me of my son as a new born in eye development. I know it may have been a bit of a shock knowing that your daughter may have BPES... the good thing is you were kind of prepared for your daughter having BPES due to your husband having it, at least you have seen it before. I hope all goes well with the doctors and I am sure they will do the right thing, there is also nothing wrong with second opinions if you are really worried. my son Lynden had his 1st surgery at 6 weeks of age but his eyes were really obstructed by his lids and that is why he had surgery so early in age. so I guess that is one of the things the doctor can look for ( how much of her eyeball (pupil,cornea) does her eyelid cover.) I am sure as people reply to your message you will get a lot of wonderful advice. GOOD LUCK TO YOU!!!!

Tonikka

-----Original Message-----From: angie_huffman [mailto:angie_huffman@...]Sent: November 1, 2004 7:40 AMblepharophimosis Subject: blepharophimosis Hannah RaeHello GroupI first posted a message back in December 2003. I just had found out I was pregnant and my husband has BPES. Jon (my husband) was unfamiliar with BPES and I wanted to know more about the disorder. I joined the group and asked around and got some feedback regarding the chances of our child having BPES. The chances were 50/50. During my pregnancy I put it towards the back of my mind, because I knew no matter what I would love our child to no end! Hannah Rae was born August 3rd. She does have BPES and she is the most precious girl in the whole wide world. She went to the eye doctor when she was 6 weeks old, and goes back on the 18th of Nov. The doctor said there is not much we can do at this point. I am worried about her eye development? If anyone can give me advice about what I should have the doctor look for please help! She loves the light and absolutely loves the ceiling fan! I have submitted photos under the folder Hannah Rae. I am so thankful this message board exists! Thanks to all who have suggestions!

November 1, 2004

Hi

My daughter Lily was born July 30, so they are the same age!

Congratulations on a beautiful little girl. I looked at her photos

and she is a beautiful baby.

I have BPES, and so does Lily. Lily could not open her eyes at all,

her ptosis was so severe. So she has had two surgeries, she still

cannot open the right eye enough. Soon she will have the right eye

done over again by another surgeon we feel more confident about. It

has been a difficult time. The worry is if she will develop a lazy

eye, my left eye has always turned and that has been the worst part

for me. I hope hers will not.

If she can open her eyes, and she can clear the pupil in both eyes,

her vision should develop normally. You are lucky that she seems to

be able to do that (from the photos). That's what everyone has told

us and it seems to make sense. That's why our doctors agreed Lily

needed to have slings put in at 6 weeks old.

Since we have found a new surgeon, and since she is smiling,

laughing, looking at things, we are so relieved. It was very hard

when she couldn't open her eyes at all, she was trying so hard to

see, moving all the muscles in her face,and even pulling her little

cheeks down.

I am excited for you, having a baby girl,it is so wonderful.

Beth

>

> Hello Group

> I first posted a message back in December 2003. I just had found

> out I was pregnant and my husband has BPES. Jon (my husband) was

> unfamiliar with BPES and I wanted to know more about the

disorder.

> I joined the group and asked around and got some feedback

regarding

> the chances of our child having BPES. The chances were 50/50.

> During my pregnancy I put it towards the back of my mind, because

I

> knew no matter what I would love our child to no end! Hannah Rae

> was born August 3rd. She does have BPES and she is the most

> precious girl in the whole wide world. She went to the eye doctor

> when she was 6 weeks old, and goes back on the 18th of Nov. The

> doctor said there is not much we can do at this point. I am

worried

> about her eye development?

>

> If anyone can give me advice about what I should have the doctor

> look for please help! She loves the light and absolutely loves

the

> ceiling fan! I have submitted photos under the folder Hannah

Rae.

> I am so thankful this message board exists! Thanks to all who

have

> suggestions!

November 1, 2004

Hello Angie,

Your little Hannah Rae is a cutie! I love those cheeks! I'm Ginny,

mom to , who is 5 yrs. now. We were completely surprised when

she was born with BPES because is doesn't " run " in our family, we had

never even heard of the disorder, and she wasn't diagnosed until she

was 5 months old. None of the doctors I had taken her to knew what

it was... Long story short...she didn't have her first surgery until

she was 3 1/2 and then her second surgery was done this past May -

right before her 5th birthday. For some children with BPES the

surgeons opt to doing surgery earlier and for some they want to wait

a bit longer. I think it depends on the patient and the doctor. I

agree with one the other posts in in that it never hurts to get a

second (or third) opinion. Also, quiz your doctor a bit and find out

just how familiar he/she is with BPES. How many patients do they see

with the disorder? Will the doctor show you and you husband some

photos of his/her patients before and after their surgeries? I know

there are a lot of questions...at times when was an infant my

husband and I were so overwhelmed... One day at a time. God bless

you and your family.

Ginny Harper <><

-- In blepharophimosis , " angie_huffman "

<angie_huffman@y...> wrote:

>

> Hello Group

> I first posted a message back in December 2003. I just had found

> out I was pregnant and my husband has BPES. Jon (my husband) was

> unfamiliar with BPES and I wanted to know more about the disorder.

> I joined the group and asked around and got some feedback regarding

> the chances of our child having BPES. The chances were 50/50.

> During my pregnancy I put it towards the back of my mind, because I

> knew no matter what I would love our child to no end! Hannah Rae

> was born August 3rd. She does have BPES and she is the most

> precious girl in the whole wide world. She went to the eye doctor

> when she was 6 weeks old, and goes back on the 18th of Nov. The

> doctor said there is not much we can do at this point. I am

worried

> about her eye development?

>

> If anyone can give me advice about what I should have the doctor

> look for please help! She loves the light and absolutely loves the

> ceiling fan! I have submitted photos under the folder Hannah Rae.

> I am so thankful this message board exists! Thanks to all who have

> suggestions!

November 2, 2004

:

Aedan, I love that name in fact when my husband and I have a boy we

are going to name him Aidan.

Thanks for your post! Hannah's opthalmologist Dr.

Louisville, KY said that her eye sight is fine. You can see her

pupils and the white's of her eyes sometimes. She does favor her

righ eye. Now that she has starting developing eye lashes her eyes

get crusty. Does Aedan's eye water, or get crusty? What did do you

when he was an infant to help with the fluid? I massage her tear

ducts and that helps for a while. She also has saline drops that I

put in her eyes twice a day.

I really appreciate you taking the time to answer my post. It

really means a lot to me!

Thank you and Have a Blessed Day!

Angie

> hello

> Hannah Rae, what a beautiful name. congratulations! My

name is

> , my son Aedan is 2 and has Blepharophimosis. He had

severe ptosis when he

> was born and had surgery at 10 weeks to make sure he had a chance

to develop

> sight. His eyesight seems great 20/30 at a 2 year old eye exam,

which our Dr

> said is the best one can get from a 2 year old. We also try

patching in order

> to even out strong eye weak eye stuff. If you haven't already

take Hannah to

> a pediatric opthalmologist to help you with her sight development

along the

> way. Congratulations again,

November 2, 2004

Beth:

Thanks for your post! It is wonderful being a mom and especially

being Hannah's mommy! I looked at Lily's album and you are truly

blessed to have such a sweet little girl! I am glad to have found

someone who has a daughter the around the same age as Hannah and be

able to share stories.

The opthalmologist Dr. Louisiville, KY told us that Hannah's

eye sight was fine. She can open her eyes enough. But what is

enough? As you stated " if she can open her eyes, and she can clear

the pupil in both eyes her vision should develop normally. " I am

hoping this is ture. Although I do find that she favors her right

eye. It seems to be a lot more crusty. When I say crusty I mean

where her eyes water, it tends to stick in the eye lashes and crust

up. This is extreamly bad in the mornings when she wakes up. Does

Lily have the same happen to her? Now that she is proably holding

her head up, do you find that she tilts her neck bacl to see?

Hannah does this on occasion.It seems like I have so many

questions.

Thank you for your reply to my post! It has given me a whole new

outlook on BPES and Hannah living with it!

Thanks! Hope you have a blessed day!

Angie

> >

> > Hello Group

> > I first posted a message back in December 2003. I just had

found

> > out I was pregnant and my husband has BPES. Jon (my husband) was

> > unfamiliar with BPES and I wanted to know more about the

> disorder.

> > I joined the group and asked around and got some feedback

> regarding

> > the chances of our child having BPES. The chances were 50/50.

> > During my pregnancy I put it towards the back of my mind,

because

> I

> > knew no matter what I would love our child to no end! Hannah

Rae

> > was born August 3rd. She does have BPES and she is the most

> > precious girl in the whole wide world. She went to the eye

doctor

> > when she was 6 weeks old, and goes back on the 18th of Nov. The

> > doctor said there is not much we can do at this point. I am

> worried

> > about her eye development?

> >

> > If anyone can give me advice about what I should have the doctor

> > look for please help! She loves the light and absolutely loves

> the

> > ceiling fan! I have submitted photos under the folder Hannah

> Rae.

> > I am so thankful this message board exists! Thanks to all who

> have

> > suggestions!

November 2, 2004

Hello Tonikka

Lynden's picture at 6 weeks old looks just like a Hannah picture I

have! It is amazing the resemblance. I am so thankful for this

message board! I have so many questions... I am going to post again

and look forward to sharing more stories with you.

Thanks again for your reply to my post and have a blessed day!

Angie

> hi angie and Hannah Rae

>

> your daughter sure is a beautiful little girl, her pictures remind

me of my

> son as a new born in eye development. I know it may have been a

bit of a

> shock knowing that your daughter may have BPES... the good thing

is you were

> kind of prepared for your daughter having BPES due to your husband

having

> it, at least you have seen it before. I hope all goes well with

the doctors

> and I am sure they will do the right thing, there is also nothing

wrong with

> second opinions if you are really worried. my son Lynden had his

1st surgery

> at 6 weeks of age but his eyes were really obstructed by his lids

and that

> is why he had surgery so early in age. so I guess that is one of

the things

> the doctor can look for ( how much of her eyeball (pupil,cornea)

does her

> eyelid cover.) I am sure as people reply to your message you will

get a lot

> of wonderful advice. GOOD LUCK TO YOU!!!!

>

> Tonikka

> blepharophimosis Hannah Rae

>

> Hello Group

> I first posted a message back in December 2003. I just had found

> out I was pregnant and my husband has BPES. Jon (my husband) was

> unfamiliar with BPES and I wanted to know more about the

disorder.

> I joined the group and asked around and got some feedback

regarding

> the chances of our child having BPES. The chances were 50/50.

> During my pregnancy I put it towards the back of my mind,

because I

> knew no matter what I would love our child to no end! Hannah Rae

> was born August 3rd. She does have BPES and she is the most

> precious girl in the whole wide world. She went to the eye

doctor

> when she was 6 weeks old, and goes back on the 18th of Nov. The

> doctor said there is not much we can do at this point. I am

worried

> about her eye development?

>

> If anyone can give me advice about what I should have the doctor

> look for please help! She loves the light and absolutely loves

the

> ceiling fan! I have submitted photos under the folder Hannah

Rae.

> I am so thankful this message board exists! Thanks to all who

have

> suggestions!

>

November 3, 2004

Congratulations on having your baby. Hannah is beautiful. What a

fantastic smile.--I love the relaxed arm behind the head look. It

gives such character.

I have 2 sons. Cameron is 5 and Sam is 10 months. Sam has bleph so

do I. For the first few months his eyes were a little gooey

constantly. I just used to wipe them with cooled boiled water. AS

he is getting older, they are a lot better.

Hopefully you will see an opthalmologist and they will check Hannahs

eyes. Sam goes every 3months so, he has been twice so far. Its

amazing that they can tell how well they can see at such a young age.

Sam has an astigmatism and is long sighted. All babies are

apparently long sighted when they are born. I didnt know this.

Take care

- In blepharophimosis , " angie_huffman "