Re: Trying to get use to the idea that my little angel has BPES

[Guest guest]

>

Hi, and welcome to the group. I understand perfectly how you feel. I

have been there myself. Sylvester was born with BPES last year, but I

can promise you that someday there will come a day or a moment where

you dont think about it, and the only thing you see is your beatyfull

daughter (because I know she is)

Just hang in there and enjoy your baby. because one day you have

spend to much time being sad instead of being happy.

some days are worse than others, but time will help a lot.

Love from Denmark, Sylvesters mom.

> Hello to all. I am new to this group and still trying to figure

out

> how things work around here.

>

> My daughter was diagnosed on June 5, 2007 with blepharophimosis

> syndrome. She had all four characteristics that go along with this

> syndrome. The day I delivered her I kept asking the doctors is

there

> something wrong with her eyes? They kept reassuring me that this

was

> just how she was made. Deep down I knew something was different.

> It's only been one day since she was diagnosed. I have my ups and

> downs. I realize that things could be so much worse, but it's

still

> hard for me to keep the tears in. Not b/c I think of her any

> differently, but it's something that she will have to face all her

> life. I'm trying to be strong, but right now I feel so weak and

> thought maybe it would help to talk to other parents going through

> what I am. I am going to try and post some pictures of her. Her

name

> is Macey Hamilton.

>

[Guest guest]

Hello! and welcome to the group! I can really relate to how you are feeling.Our daughter was diagnosed at approx 10mths old and is now 2. When she was born I kept asking the doctors "what is wrong with her eyes??" She saw a team of peadiatricions who still could not give us an answer. It took nearly 10mths to get a proper answer/diagnosis. We found that information was so limited and no-one seemed to know much about it. We saw a geneticist who really opened our eyes to what we were dealing with, and gave us more info than any other source. Finding this group was a god send!! When I looked through the photo albums I cried!! For we had never seen another person with BPES. It was overwhelming and I suddenly felt like we were not alone! That someone out there was going through what we were!! I feel so thankfull to have found this group, it has helped me alot. I think we often fear the things we do not understand, and as time moves on and I learn more and more I

think it makes it easier. We adore our little girl, as Im sure you do yours!, but I find it hard to think of the things she may go through both pyhsically, and emotionally as she gets older. Sometimes I wish I could protect her from this vain society we live in!!! but Im seeing a strong little personality emerging and somehow I know she'll be ok!!! Take care! and Im sure you will benefit alot from this wonderful group!! awdreyhamilton <awdreyhamilton@...> wrote: Hello to all. I am new to this

group and still trying to figure out how things work around here. My daughter was diagnosed on June 5, 2007 with blepharophimosis syndrome. She had all four characteristics that go along with this syndrome. The day I delivered her I kept asking the doctors is there something wrong with her eyes? They kept reassuring me that this was just how she was made. Deep down I knew something was different. It's only been one day since she was diagnosed. I have my ups and downs. I realize that things could be so much worse, but it's still hard for me to keep the tears in. Not b/c I think of her any differently, but it's something that she will have to face all her life. I'm trying to be strong, but right now I feel so weak and thought maybe it would help to talk to other parents going through what I am. I am going to try and post some pictures of her. Her name is Macey Hamilton.

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[Guest guest]

Hello ! The feeling was same for us when our 7 month old son was diagnosed with BPES a month ago. Being a newcomer as you are I can assure you, there is lot of support available within this group. We have to be real strong and not just pretend. Because we have to make our ward strong and positive to face the world by the time he/she is on his/her own to attend school etc. And I am told surgery at appropriate time will certainly help. So enjoy every moment now because when you make her independent and things are fine you will regret that you missed those wonderful moments unnecessarily. Cheers Jay awdreyhamilton <awdreyhamilton@...> wrote: Hello to all. I am new to this group and still trying to figure out how things work around here. My daughter was diagnosed on June 5, 2007 with blepharophimosis syndrome. She had all four characteristics that go along with this syndrome. The day I delivered her I kept asking the doctors is there something wrong with her eyes? They kept reassuring me that this was just how she was made. Deep down I knew something was different. It's only been one day since she was diagnosed. I have my ups and downs. I realize that things could be so much worse, but it's still hard for me to keep the tears in. Not b/c I think of her any differently,

but it's something that she will have to face all her life. I'm trying to be strong, but right now I feel so weak and thought maybe it would help to talk to other parents going through what I am. I am going to try and post some pictures of her. Her name is Macey Hamilton.

Ready for the edge of your seat? Check out tonight's top picks on TV.

[Guest guest]

Hi and welcome.

I remember all too well the rollercoaster of emotions you are

feeling right now. My son was diagnosed about three months ago and

I spent the next couple of weeks doing nothing but crying.

Everytime I thought about how much this would affect his whole life,

I was so overwhelmed. As weeks passed, and I focused on the

immediate, it became easier to accept. It is absolutely true that

there are worse things, but it is very natural for a mother to feel

torn apart by imagining any pain to their child. And that never goes

away. We are preparing for my son Donovan's surgery on Monday, so of

course all the fear and sadness is coming back for us. During a

tearful conversation with my mother last night she said " How you are

feeling right now about Donovan is how I'm feeling about you. I wish

I could just hug you and take it all away "

Finding this group was very helpful to me. It is the most useful

advice by people who really do know how you feel, and what you are

going through.

How old is Macey? Can't wait to see pics! Where do you guys live?

Best Wishes

>

> Hello to all. I am new to this group and still trying to figure

out

> how things work around here.

>

> My daughter was diagnosed on June 5, 2007 with blepharophimosis

> syndrome. She had all four characteristics that go along with

this

> syndrome. The day I delivered her I kept asking the doctors is

there

> something wrong with her eyes? They kept reassuring me that this

was

> just how she was made. Deep down I knew something was different.

> It's only been one day since she was diagnosed. I have my ups and

> downs. I realize that things could be so much worse, but it's

still

> hard for me to keep the tears in. Not b/c I think of her any

> differently, but it's something that she will have to face all her

> life. I'm trying to be strong, but right now I feel so weak and

> thought maybe it would help to talk to other parents going through

> what I am. I am going to try and post some pictures of her. Her

name

> is Macey Hamilton.

>

[Guest guest]

Hi Awdrey My name is Lucy and I have a two year old little girl with BPES. She is the first in the family and like you was walking around the maternity unit saying 'she won't open her eyes' 'whats wrong'. Again like you, my GP said nothing wrong, just the way she is and I like you wasn't convinced. After a second opinion it was then taken to local hospital where they diagnosed BPES from a book!! We are now looked after at Moorfields Eye Hosp in London and she had her first operation last Sept. There are photos under Holly Ellen but I need to add recent ones after her op, it has made such a difference. I felt very upset and found it hard to come to terms with, especially with people staring and commenting on Holly 'being asleep' or 'whats wrong with her eyes'. BUT it does and will get a lot easier for you. As they grow older and their little personalities take

over. After her op things got even better with only 3 people saying comments since Sept which is amazing! Where do you live? We live in Hampshire, UK. If you ever need a chat let me know and I can give you a call. I can also send recent photos to show you. Take care and chin up, it will get better for you Love Lucy xxxawdreyhamilton <awdreyhamilton@...> wrote: Hello to all. I am new to this group and still trying to figure out how things work around here. My daughter was diagnosed on June 5, 2007 with blepharophimosis syndrome. She had all four characteristics that go along with this syndrome. The day I delivered her I kept asking the doctors is there something wrong with her eyes? They kept reassuring me that this was just how she was made. Deep down I knew something was different. It's only been one day since she was diagnosed. I have my ups and downs. I realize that things could be so much worse, but it's still hard for me to keep the tears in. Not b/c I think of her any differently, but it's something that she will have to face all her life. I'm trying to be strong, but right now I feel so weak and thought maybe it would help to talk to other parents going through what I am. I am going to try and post some pictures of her. Her name is Macey Hamilton.

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[Guest guest]

Hi Awdrey,

Welcome to the group. I hope you will find, as I have, that it really is the

best place for encouragement and answers.

I think all the mom's here can feel your pain. My son Hayden who is now 23

months old has BPES. When he was born, my husband and I noticed right away

that his eyes did not look 'right' and were certainly not like our daughters

big eyes when she was born. I asked the doctor at our 6 week check-up and he

mentioned that it might be some type of syndrome and he would make some

appointments for us.

We had months of waiting to see the Genetisist and Opthamologist and of

course by then comments started coming from friends, family and total

strangers. Things like, " He doesn't open his eyes much! He doesn't look like

any of you. Are you sure you took the right one home from the hospital? "

Then there were gasps of horror, " What is wrong with his eyes? You know you

should have surgery to correct that! " etc, . . . All the while, I had no

answers and my worry increased with each insensitive comment. " I would smile

politely and say, " Yes, he does have little eyes doesn't he? " but then I'd

head home and have a meltdown!

The word syndrome just sounded so daunting that when we finally got the BPES

diagnosis I was relieved. Except for his eyes, Hayden's development was

expected to be normal! This meant so much to me.

So far it has been harder for me than for Hayden. He is totally oblivious to

his differences at this point and so is my daughter, who is now four. I've

explained it to her but she simply can't tell that there's anything wrong

and just said, " Hayden is still a cutey mom! " She's right and I hope she

remains the best big sister in the world forever! My husband is the voice of

reason everytime I breakdown and he's been great. So surround yourself with

loved ones - you'll need them.

Anyway, I don't know how old your daughter is, but I found that once Hayden

started to have a little personality everyone learned to love and accept

him. He is incredibly funny and sweet and gives the very best hugs! As much

as I worry about him, I also know that I will be given strength to make it

through each obsticle. Love does incredible things! You are doing the best

for your daughter by coming here to find support and answers so you'll know

how to help her.

God bless, and remember, you are not alone!

Sheryl Kampen

Burlington, ON

Canada

..om: " awdreyhamilton " <awdreyhamilton@...>

>Reply-blepharophimosis

>blepharophimosis

>Subject: blepharophimosis Trying to get use to the idea that my little

>angel has BPES

>Date: Thu, 07 Jun 2007 05:11:15 -0000

>

>Hello to all. I am new to this group and still trying to figure out

>how things work around here.

>

>My daughter was diagnosed on June 5, 2007 with blepharophimosis

>syndrome. She had all four characteristics that go along with this

>syndrome. The day I delivered her I kept asking the doctors is there

>something wrong with her eyes? They kept reassuring me that this was

>just how she was made. Deep down I knew something was different.

>It's only been one day since she was diagnosed. I have my ups and

>downs. I realize that things could be so much worse, but it's still

>hard for me to keep the tears in. Not b/c I think of her any

>differently, but it's something that she will have to face all her

>life. I'm trying to be strong, but right now I feel so weak and

>thought maybe it would help to talk to other parents going through

>what I am. I am going to try and post some pictures of her. Her name

>is Macey Hamilton.

>

_________________________________________________________________

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[Guest guest]

I hope this is the way to reply to multiple people. I am writing to

all of you who replied to my first message. I wanted to say thank

you for all your kind words they really lifted me up. I had a rough

time last night, but doing better tonight. I forgot to mention that

Macey just turned 3 months old on June 6th. She was diagnosed on

June 5th from an eye specialist. We have an appt. to see the

geneticist on July 17th. I'm not sure what else he will be able to

tell us, but am anxiously awaiting to see him. Before we had a name

for her syndrome I tried and tried to research it on the web but

couldn't come up with anything. After I knew what to type in I

found this group and was amazed at all the little children with the

same eyes as Macey. It has helped just knowing that I'm not alone.

Again I would like to say thank you for all of the replies to my

post.

Awdrey from Alabama-USA

is there anyone from the States?

>

> Hello to all. I am new to this group and still trying to figure

out

> how things work around here.

>

> My daughter was diagnosed on June 5, 2007 with blepharophimosis

> syndrome. She had all four characteristics that go along with

this

> syndrome. The day I delivered her I kept asking the doctors is

there

> something wrong with her eyes? They kept reassuring me that this

was

> just how she was made. Deep down I knew something was different.

> It's only been one day since she was diagnosed. I have my ups and

> downs. I realize that things could be so much worse, but it's

still

> hard for me to keep the tears in. Not b/c I think of her any

> differently, but it's something that she will have to face all her

> life. I'm trying to be strong, but right now I feel so weak and

> thought maybe it would help to talk to other parents going through

> what I am. I am going to try and post some pictures of her. Her

name

> is Macey Hamilton.

>

[Guest guest]

For some reason the first time I uploaded Macey's pics they didn't

take, but I fixed it now I think and just thought I would let you

know. Macey Hamilton is her name.

>

> Hello to all. I am new to this group and still trying to figure

out

> how things work around here.

>

> My daughter was diagnosed on June 5, 2007 with blepharophimosis

> syndrome. She had all four characteristics that go along with

this

> syndrome. The day I delivered her I kept asking the doctors is

there

> something wrong with her eyes? They kept reassuring me that this

was

> just how she was made. Deep down I knew something was different.

> It's only been one day since she was diagnosed. I have my ups and

> downs. I realize that things could be so much worse, but it's

still

> hard for me to keep the tears in. Not b/c I think of her any

> differently, but it's something that she will have to face all her

> life. I'm trying to be strong, but right now I feel so weak and

> thought maybe it would help to talk to other parents going through

> what I am. I am going to try and post some pictures of her. Her

name

> is Macey Hamilton.

>

[Guest guest]

For some reason the first time I uploaded Macey's pics they didn't

take, but I fixed it now I think and just thought I would let you

know. Macey Hamilton is her name.

>

> Hello to all. I am new to this group and still trying to figure

out

> how things work around here.

>

> My daughter was diagnosed on June 5, 2007 with blepharophimosis

> syndrome. She had all four characteristics that go along with

this

> syndrome. The day I delivered her I kept asking the doctors is

there

> something wrong with her eyes? They kept reassuring me that this

was

> just how she was made. Deep down I knew something was different.

> It's only been one day since she was diagnosed. I have my ups and

> downs. I realize that things could be so much worse, but it's

still

> hard for me to keep the tears in. Not b/c I think of her any

> differently, but it's something that she will have to face all her

> life. I'm trying to be strong, but right now I feel so weak and

> thought maybe it would help to talk to other parents going through

> what I am. I am going to try and post some pictures of her. Her

name

> is Macey Hamilton.

>

[Guest guest]

Awdrey:

Our son is 4 months old and was diagnosed with BPES at

4 weeks old. I totally understand what you are going

through and although it is all new territory right

now, soon you will learn all of the language that is

associated with the syndrome. We too have met with a

geneticist, two pediatric opthamologists and an

oculoplastic surgeon. We have also corresponded via

e-mail with two other oculoplastic surgeons. All I

can tell you for sure is that there are varying

opnions on when to do surgery and what type of surgery

to do. We have found that the medical professionals

working in pediatric hospitals are wanting to do

frontal slings prior to walking. The

oculoplastic professionals and a pediatric

opthamologist not affillitated with a children's

hospital prefer that we wait until 's leg

muscle can be used for the surgery (requiring him to

be 38 inches long).

I would be happy to chat more with you. I will try to

upload some photos of (right now his photo

is on the careplace group).

Hang in there --

Anne Weber ('s mom)

Glen Ellyn, IL

USA

--- awdreyhamilton <awdreyhamilton@...> wrote:

> I hope this is the way to reply to multiple people.

> I am writing to

> all of you who replied to my first message. I

> wanted to say thank

> you for all your kind words they really lifted me

> up. I had a rough

> time last night, but doing better tonight. I forgot

> to mention that

> Macey just turned 3 months old on June 6th. She was

> diagnosed on

> June 5th from an eye specialist. We have an appt.

> to see the

> geneticist on July 17th. I'm not sure what else he

> will be able to

> tell us, but am anxiously awaiting to see him.

> Before we had a name

> for her syndrome I tried and tried to research it on

> the web but

> couldn't come up with anything. After I knew what

> to type in I

> found this group and was amazed at all the little

> children with the

> same eyes as Macey. It has helped just knowing that

> I'm not alone.

> Again I would like to say thank you for all of the

> replies to my

> post.

>

> Awdrey from Alabama-USA

> is there anyone from the States?

>

>

>

> >

> > Hello to all. I am new to this group and still

> trying to figure

> out

> > how things work around here.

> >

> > My daughter was diagnosed on June 5, 2007 with

> blepharophimosis

> > syndrome. She had all four characteristics that

> go along with

> this

> > syndrome. The day I delivered her I kept asking

> the doctors is

> there

> > something wrong with her eyes? They kept

> reassuring me that this

> was

> > just how she was made. Deep down I knew something

> was different.

> > It's only been one day since she was diagnosed. I

> have my ups and

> > downs. I realize that things could be so much

> worse, but it's

> still

> > hard for me to keep the tears in. Not b/c I think

> of her any

> > differently, but it's something that she will have

> to face all her

> > life. I'm trying to be strong, but right now I

> feel so weak and

> > thought maybe it would help to talk to other

> parents going through

> > what I am. I am going to try and post some

> pictures of her. Her

> name

> > is Macey Hamilton.

> >

>

>

>

________________________________________________________________________________\

____

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[Guest guest]

My daughter Avery is 11months. She had sling surgery at 3months.

Everyone in my family and even strangers say she looks a bit Chinese

but then they say how beautiful she is and that my husband will have

a hard time. I think her little difference makes her even more

beautiful and exotic! I pray that she is not treat badly by other

children but on the other hand what if the boys flock to her????

What is worse?

Enjoying my special little girl,

Nicki Venable

> >

> > Hello to all. I am new to this group and still trying to figure

> out

> > how things work around here.

> >

> > My daughter was diagnosed on June 5, 2007 with blepharophimosis

> > syndrome. She had all four characteristics that go along with

> this

> > syndrome. The day I delivered her I kept asking the doctors is

> there

> > something wrong with her eyes? They kept reassuring me that this

> was

> > just how she was made. Deep down I knew something was

different.

> > It's only been one day since she was diagnosed. I have my ups

and

> > downs. I realize that things could be so much worse, but it's

> still

> > hard for me to keep the tears in. Not b/c I think of her any

> > differently, but it's something that she will have to face all

her

> > life. I'm trying to be strong, but right now I feel so weak and

> > thought maybe it would help to talk to other parents going

through

> > what I am. I am going to try and post some pictures of her. Her

> name

> > is Macey Hamilton.

> >

>

[Guest guest]

Hello again. I am having a rough day again. Nothing has been

normal even with my pregnancy. I was sick all the time and only

gained 5 lbs (she weighed 5 lbs 12 oz) Not only does she have BPES

she has acid reflux, spits up all the time and seems to have a more

than normal appetite. I feel so lost and before she was born I

thought this was going to be the easiest yet, seeing how this is my

fourth child. Boy was I wrong. I was sitting there holder her

while I had a break down and wanted to call one of my friends for

some encouragement and then realized how could any of them possibly

understand what I am going through. I'm not trying to sound petty I

think I just had to get it out of my system so that's why I am

writing it down here. Well I don't know what good it will really do

me to write down my frustration here, but for some reason it makes

me feel a little better. Thanks for listening to me.

Awdrey

>

> Hello to all. I am new to this group and still trying to figure

out

> how things work around here.

>

> My daughter was diagnosed on June 5, 2007 with blepharophimosis

> syndrome. She had all four characteristics that go along with

this

> syndrome. The day I delivered her I kept asking the doctors is

there

> something wrong with her eyes? They kept reassuring me that this

was

> just how she was made. Deep down I knew something was different.

> It's only been one day since she was diagnosed. I have my ups and

> downs. I realize that things could be so much worse, but it's

still

> hard for me to keep the tears in. Not b/c I think of her any

> differently, but it's something that she will have to face all her

> life. I'm trying to be strong, but right now I feel so weak and

> thought maybe it would help to talk to other parents going through

> what I am. I am going to try and post some pictures of her. Her

name

> is Macey Hamilton.

>

[Guest guest]

Hi Awdrey, My name is April. I am 24 and I have BPES. I have a 5 month old daughter and she has BPES also. MY mom does not have it but, my dad did. Mama said when I was born she was very upset I had my dad's eyes. She said she assumed she had big eyes and he had small eyes, she thought mine would be medium sized. Keep in mind this was before any of us knew what BPES was. She said she was so upset until she met her cousin's little boy who was born mentally retarded he couldn't walk, talk or even eat he had to be fed through a tube. She said this was when she realized how blessed she was to have a healthy child with different, but beautiful eyes. Different doesn't always mean ugly. I will admit growing up wasn't always easy, but I do believe it made me a stronger person. Not for once did I not think about not having a child to tell you the truth that was all I wanted and I was a little disappointed when Abigail was born

with my eyes, but only because I knew life would be easier for her if she had "normal" eyes. But, she's happy healthy and beautiful and I thank God every day for her. I did have surgery when I was 4 and it made some difference, but I have not decided yet if Abigail will have surgery. I hope this helps you some. Let me know if you have any questions or just want to talk. April awdreyhamilton <awdreyhamilton@...> wrote: Hello again. I am having a rough day again.

Nothing has been normal even with my pregnancy. I was sick all the time and only gained 5 lbs (she weighed 5 lbs 12 oz) Not only does she have BPES she has acid reflux, spits up all the time and seems to have a more than normal appetite. I feel so lost and before she was born I thought this was going to be the easiest yet, seeing how this is my fourth child. Boy was I wrong. I was sitting there holder her while I had a break down and wanted to call one of my friends for some encouragement and then realized how could any of them possibly understand what I am going through. I'm not trying to sound petty I think I just had to get it out of my system so that's why I am writing it down here. Well I don't know what good it will really do me to write down my frustration here, but for some reason it makes me feel a little better. Thanks for listening to me.Awdrey>> Hello to all. I am new to this group and still trying to figure out > how things work around here. > > My daughter was diagnosed on June 5, 2007 with blepharophimosis > syndrome. She had all four characteristics that go along with this > syndrome. The day I delivered her I kept asking the doctors is there > something wrong with her eyes? They kept reassuring me that this was > just how she was made. Deep down I knew something was different. > It's only been one day since she was diagnosed. I have my ups and > downs. I realize that things could be so much worse, but it's still > hard for me to keep the tears in. Not b/c I think of her any > differently, but it's something that she will have to face all her

> life. I'm trying to be strong, but right now I feel so weak and > thought maybe it would help to talk to other parents going through > what I am. I am going to try and post some pictures of her. Her name > is Macey Hamilton.>

oneSearch: Finally, mobile search that gives answers, not web links.

[Guest guest]

Awdrey:

It sounds like you need a break sister! Can you get

some time away from the kiddos (even an hour) while

your husband keeps the kids?

Our 4 1/2 month old has been such a blessing and

although the BPES is overwhelming at first, we are

learning the lingo and trying to make the best

decisions for him as we learn more about different

surgery options and most importantly, monitoring his

vision.

Hang in there....I can't even imagine the reflux,

spit-up stuff but I am sure it is adding stress to

your life right now...there is nothing you can do

today about BPES and soon you will learn from your

pediatric opthamologist what works for your daughter.

If you are nursing and she is eating all the time

don't forget to feed yourself! If you only gained 5

lbs you don't have a lot of reserves to go off of:)

I hope tomorrow is a better day...--Anne--

--- awdreyhamilton <awdreyhamilton@...> wrote:

> Hello again. I am having a rough day again.

> Nothing has been

> normal even with my pregnancy. I was sick all the

> time and only

> gained 5 lbs (she weighed 5 lbs 12 oz) Not only

> does she have BPES

> she has acid reflux, spits up all the time and seems

> to have a more

> than normal appetite. I feel so lost and before she

> was born I

> thought this was going to be the easiest yet, seeing

> how this is my

> fourth child. Boy was I wrong. I was sitting there

> holder her

> while I had a break down and wanted to call one of

> my friends for

> some encouragement and then realized how could any

> of them possibly

> understand what I am going through. I'm not trying

> to sound petty I

> think I just had to get it out of my system so

> that's why I am

> writing it down here. Well I don't know what good

> it will really do

> me to write down my frustration here, but for some

> reason it makes

> me feel a little better. Thanks for listening to

> me.

> Awdrey

>

>

>

>

> >

> > Hello to all. I am new to this group and still

> trying to figure

> out

> > how things work around here.

> >

> > My daughter was diagnosed on June 5, 2007 with

> blepharophimosis

> > syndrome. She had all four characteristics that

> go along with

> this

> > syndrome. The day I delivered her I kept asking

> the doctors is

> there

> > something wrong with her eyes? They kept

> reassuring me that this

> was

> > just how she was made. Deep down I knew something

> was different.

> > It's only been one day since she was diagnosed. I

> have my ups and

> > downs. I realize that things could be so much

> worse, but it's

> still

> > hard for me to keep the tears in. Not b/c I think

> of her any

> > differently, but it's something that she will have

> to face all her

> > life. I'm trying to be strong, but right now I

> feel so weak and

> > thought maybe it would help to talk to other

> parents going through

> > what I am. I am going to try and post some

> pictures of her. Her

> name

> > is Macey Hamilton.

> >

>

>

>

________________________________________________________________________________\

____

Sick sense of humor? Visit TV's

Comedy with an Edge to see what's on, when.

http://tv./collections/222

[Guest guest]

You're not alone.

Our son also had very severe gastric reflux, leading to oesophageal

ulcers. None of the medical folks would believe us, claiming it was all

caused by parental stress. Eventually we got them to take it seriously

and they found he had a sliding hiatus hernia, requiring major

(fundoplication) surgery to correct. Not that that's likely in your

case, but it very difficult to have a child that screams with pain

constantly, and to be told " it's your fault " . It's a very isolating

disorder at the best of times.

Hang in there. We found a gastric reflux support group, who were just

wonderful. Maybe there's one in your area?

Rob W

awdreyhamilton wrote:

> Hello again. I am having a rough day again. Nothing has been

> normal even with my pregnancy. I was sick all the time and only

> gained 5 lbs (she weighed 5 lbs 12 oz) Not only does she have BPES

> she has acid reflux, spits up all the time and seems to have a more

> than normal appetite. I feel so lost and before she was born I

> thought this was going to be the easiest yet, seeing how this is my

> fourth child. Boy was I wrong. I was sitting there holder her

> while I had a break down and wanted to call one of my friends for

> some encouragement and then realized how could any of them possibly

> understand what I am going through. I'm not trying to sound petty I

> think I just had to get it out of my system so that's why I am

> writing it down here. Well I don't know what good it will really do

> me to write down my frustration here, but for some reason it makes

> me feel a little better. Thanks for listening to me.

> Awdrey

[Guest guest]

> >

> > Hello to all. I am new to this group and still trying to figure

> out

> > how things work around here.

> >

> > My daughter was diagnosed on June 5, 2007 with blepharophimosis

> > syndrome. She had all four characteristics that go along with

> this

> > syndrome. The day I delivered her I kept asking the doctors is

> there

> > something wrong with her eyes? They kept reassuring me that this

> was

> > just how she was made. Deep down I knew something was different.

> > It's only been one day since she was diagnosed. I have my ups and

> > downs. I realize that things could be so much worse, but it's

> still

> > hard for me to keep the tears in. Not b/c I think of her any

> > differently, but it's something that she will have to face all her

> > life. I'm trying to be strong, but right now I feel so weak and

> > thought maybe it would help to talk to other parents going through

> > what I am. I am going to try and post some pictures of her. Her

> name

> > is Macey Hamilton.

> >

>

[Guest guest]

Just in regards to low birth weight and BPES...Our son was was a healthy, large 9 lb 11 oz!!! He was a wee chubby:) Whats funny

is Ethan is now a skinny minnie but quite tall for his age:) Our first son was also a healthy birth weight, he was 9 lb 7 oz...I guess I have large babies, and I'm only small too? My family used to have me on as I am the smallest, but had the biggest babies....Ethan has never

had reflux, so I can't imagine what that's like...Both our babies were perfect in every way, they made it very easy....but not to have any more though, 2 busy boys will do for us:)

-- blepharophimosis Re: Trying to get use to the idea that my little angel has BPES

> >> > Hello to all. I am new to this group and still trying to figure > out > > how things work around here. > > > > My daughter was diagnosed on June 5, 2007 with blepharophimosis > > syndrome. She had all four characteristics that go along with > this > > syndrome. The day I delivered her I kept asking the doctors is > there > > something wrong with her eyes? They kept reassuring me that this > was > > just how she was made. Deep down I knew something was different. > > It's only been one day since she was diagnosed. I have my ups and > > downs. I realize that things could be so much worse, but it's > still > > hard for me to keep the tears in. Not b/c I think of her any > > differently, but it's something that she will have to face all her > > life. I'm trying to be strong, but right now I feel so weak and > > thought maybe it would help to talk to other parents going through > > what I am. I am going to try and post some pictures of her. Her > name > > is Macey Hamilton.> >>

[Guest guest]

Hi- My name is a from Mass. in USA. I have 5 children 2 with BPES. Youngest and oldest,

Girl and Boy. Did anyone seem to have Reflux until 1 year with the children that have BPES? Is this another part of the disorder? Both my children with BPES had very bad reflux until age 1.

--

-------------- Original message -------------- From: "awdreyhamilton" <awdreyhamilton@...>

Hello again. I am having a rough day again. Nothing has been normal even with my pregnancy. I was sick all the time and only gained 5 lbs (she weighed 5 lbs 12 oz) Not only does she have BPES she has acid reflux, spits up all the time and seems to have a more than normal appetite. I feel so lost and before she was born I thought this was going to be the easiest yet, seeing how this is my fourth child. Boy was I wrong. I was sitting there holder her while I had a break down and wanted to call one of my friends for some encouragement and then realized how could any of them possibly understand what I am going through. I'm not trying to sound petty I think I just had to get it out of my system so that's why I am writing it down here. Well I don't know what good it will really do me to write down my frustration here, but for some reason it makes me feel a little better. Thanks for listening to me.Awdrey>> Hello to all. I am new to this group and still trying to figure out > how things work around here. > > My daughter was diagnosed on June 5, 2007 with blepharophimosis > syndrome. She had all four characteristics that go along with this > syndrome. The day I delivered her I kept asking the doctors is there > something wrong with her eyes? They kept reassuring me that this was > just how she was made. Deep down I knew something was different. > It's only been one day since she was diagnosed. I have my ups and > downs. I realize that things could be so much worse, but it's still > hard for me to keep the tears in. Not b/c I think of her any > differently, but it's something that she will have to face all her > life. I'm trying to be strong, but right now I feel so weak and > thought maybe it would help to talk to other parents going through > what I am. I am going to try and post some pictures of her. Her name > is Macey Hamilton.>

[Guest guest]

my first was crying all the time we had a very hard time getting her

to eat until she was about six months she was just diagnosed as

" colic " my second one started doing the same thing crying and not

wanting to eat he was diagnosed with silent acid reflux at 2 months

old and was treated with zantac and reglan.he turned into a diffrent

baby after two weeks of treatment he is now 15 months old and off

all medicine and is doing great. I hope it will soon get better for

you !! both of them do have bpes.

nina

mother to Mallory and Malachi

from the bahamas

> >

> > Hello to all. I am new to this group and still trying to figure

> out

> > how things work around here.

> >

> > My daughter was diagnosed on June 5, 2007 with blepharophimosis

> > syndrome. She had all four characteristics that go along with

> this

> > syndrome. The day I delivered her I kept asking the doctors is

> there

> > something wrong with her eyes? They kept reassuring me that

this

> was

> > just how she was made. Deep down I knew something was

different.

> > It's only been one day since she was diagnosed. I have my ups

and

> > downs. I realize that things could be so much worse, but it's

> still

> > hard for me to keep the tears in. Not b/c I think of her any

> > differently, but it's something that she will have to face all

her

> > life. I'm trying to be strong, but right now I feel so weak and

> > thought maybe it would help to talk to other parents going

through

> > what I am. I am going to try and post some pictures of her.

Her

> name

> > is Macey Hamilton.

> >

>