RE: Re: Hannah Rae

[Guest guest]

Hi Angie

I am also pleased to be in contact with someone who has a baby girl with BPES. Those pics in the album are of a different Lily, I haven't posted any of our Lily yet.

I think lots of people with ptosis favor one eye, I always have. Lily did favor her right eye, but after the surgery, she favors the left, because the right did not take to the slings as well and therefore she has to have it done over again. Before she had her surgeries, her eyes were crusty from the tear production, I think the right more than the left. They are pussy for a while after the surgery, too.

I am no expert but all of the doctors say that if she can clear the pupil he vision is developing and that makes sense. It's also good you can see the white of the eye. Lily couldnt' open her eyes at all without surgery so you guys are lucky.

take care

Bethangie_huffman <angie_huffman@...> wrote:

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!

[Guest guest]

When my daughter was a baby, her eyes used to get " crusty " . I would just

wash them off with a warm cloth. After she had her ptosis surgery it stopped....

[Guest guest]

Hi Angie,

Aedan's eyes did get crusty at times. Still do occasionally when he has

a cold, but not all the ti

[Guest guest]

Angie,

Hello again, my computer is so sensitive it sends messages before I'm

finished. Warm, wet compresses on his eyes helps with the crusties. Only after

his

operation did I use drops. He seems ok and sometimes I feel the less probing

he has the better, poor kids get poked and prodded too much , too early.

Aedan is doing great, and the comments have been at a lull lately which is a

blessing. Lot's of stares though, sometimes I glare back and other times I just

smile, with all of what is going on in our world this is really such a small

thing. My thoughts are with you.

[Guest guest]

Hey All. When I was small (and still some today) my eyes crusted quite a bit. My grandmother used to take a small dab of vasoline on my eyelids at night so it wouldnt be as hard to remove the next day with a warm wash cloth.

As far as vision is concerned...I have an astigmatism, and far sighted. After soooo many years of optomitrists telling me that my eyelids could not support contacts I said to hell with it im going to give them a try...that was 8 years ago...I wear them every day with little or no problems. I have a great deal of trouble wearing glasses due to the scars on the corners of my eyes (the rubber eye pieces rub them raw) and due to skin grafs that were taken from behind my ears become very irritated to the point of bleeding after a few hours with eye glasses on. I just couldnt take it any more and thought that I had nothing to loose by trying them....

Since my grandparents raised me I am not certian how many eye surguries I have had. I do know it was more than 10. But that was 35 years ago. I am currently looking to talk to a plastic surgeon here to see if my eyelids can be further corrected to look more like a "normal" eyelid etc. I remember when I was small after a surgury I had woke up in the middle of the night with a nightmare and ended up grabbing both my eyes and pulling the stitches out. They had sewn my eyes shut so that they could have the chance to heal after one of the sling opperations had been done. My grandparents had taken me to the local emergency room and the physician just took all the stitches out and nothing further was done (a hint from my grandmother...take both ends of a green bean can and tape them with duct tape...so that they dont cut you and use a elastic bandage to keep them in place on the elbows...little ones cant bend the elbows in the middle of the night unknowingly and pull or scratch at the insisions.... just passing along the message..seems a bit barbaric to me but hey it worked for her so many years ago.)

I am sooo very glad for those of you that are able to have children. 2 years ago it was confirmed in a very cold way after I had miscarried twins that I had POF. If I was able to have children I would not hesitate one moment of having more than one. I would have a WHOLE litter of kids if I could. We have considered adoption but it may be too costly for us. If anyone knows of grants or help that is available for adoption please let me know

Thanks

Ami & Mats Helge

From: "denisecam1" <denisecam1@...> Reply-blepharophimosis blepharophimosis Subject: blepharophimosis Re: Hannah Rae Date: Wed, 03 Nov 2004 22:35:34 -0000 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" <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!