Re:Help Needed PLEASE

[Guest guest]

Hi All.....

Most of you know me already so I wont go thru the wole story.. (10 weeks) goes every 10 days to the eye dr .....Now she is not following objects with her eyes at all...nor is she looking and me most of the time ..she turns to one direction to her right ....that we are dealing with .....

Problem: We don't think she is hearing most of the time. If you talk to her she doesn't turn her head, she doesn't react to loud noise etc. I have been to her pedrition and she said to go see a specialist ...So far we have an appointment for next Wed although i am working on getting something sooner......she passed the newborn screaning but i assume that isnt an accurate test either

MY QUESTION: ..........WHAT OTHER PROBLEMS ARE RELATED TO THIS CONDITION....CAN HER HEALING LOSS BE RELATED ??? THANKS EVERYONE ..FALLING APART RIGHT NOW ...crying all day.

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[Guest guest]

Sharon

I am praying for you and . I don't think that newborns pay

that much attention to sounds. A hearing test will tell you for

certain.

You are a great mom, and she is an adorable baby.

Beth

>

> Hi All.....

>

> Most of you know me already so I wont go thru the wole

story.. (10 weeks) goes every 10 days to the eye dr .....Now

she is not following objects with her eyes at all...nor is she

looking and me most of the time ..she turns to one direction to her

right ....that we are dealing with .....

>

> Problem: We don't think she is hearing most of the time. If you

talk to her she doesn't turn her head, she doesn't react to loud

noise etc. I have been to her pedrition and she said to go see a

specialist ...So far we have an appointment for next Wed although i

am working on getting something sooner......she passed the newborn

screaning but i assume that isnt an accurate test either

>

> MY QUESTION: ..........WHAT OTHER PROBLEMS ARE RELATED TO THIS

CONDITION....CAN HER HEALING LOSS BE RELATED ??? THANKS

EVERYONE ..FALLING APART RIGHT NOW ...crying all day.

>

>

>

>

> <a href= " http://www.TickerFactory.com/ " >

> <img border= " 0 "

src= " http://www.TickerFactory.com/ezt/d/1;14;11/st/20050609/k/3901/pr

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> __________________________________________________

>

[Guest guest]

Please keep us posted on your wee one, and will be thinking of you:)

Leanne

-- blepharophimosis Re:Help Needed PLEASE

Hi All.....

Most of you know me already so I wont go thru the wole story.. (10 weeks) goes every 10 days to the eye dr .....Now she is not following objects with her eyes at all...nor is she looking and me most of the time ..she turns to one direction to her right ....that we are dealing with .....

Problem: We don't think she is hearing most of the time. If you talk to her she doesn't turn her head, she doesn't react to loud noise etc. I have been to her pedrition and she said to go see a specialist ...So far we have an appointment for next Wed although i am working on getting something sooner......she passed the newborn screaning but i assume that isnt an accurate test either

MY QUESTION: ..........WHAT OTHER PROBLEMS ARE RELATED TO THIS CONDITION....CAN HER HEALING LOSS BE RELATED ??? THANKS EVERYONE ..FALLING APART RIGHT NOW ...crying all day.

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[Guest guest]

Thanks for everyone who is praying for her ...We have an audiologist appointment for wed ...just an audio test ...we will see how she does. Then Sept 7th we have a 2 hr test...i have to keep her up the entire night before ....please someone explain to me how in the world do you keep a 2-3 month old up that long ! But i will some how ...they are going to test her brain waves in responce to sound and she needs to sleep thru the entire test .......her christening is sunday so i am trying to keep my mind on that and not freak out too much ..very hard! thanks all....hugs to everyone ....Sharon april Eisele <aprileisele@...> wrote:

Praying for ! Please let us know what you findout from the audiologist.Hugs,April Eisele--- Sharon A <besilly12000@...> wrote:> > Hi All.....> > Most of you know me already so I wont go thru the> wole story.. (10 weeks) goes every 10 days to> the eye dr .....Now she is not following objects> with her eyes at all...nor is she looking and me> most of the time ..she turns to one direction to her> right ....that we are dealing with .....> > Problem: We don't think she is hearing most of the> time. If you talk to her she doesn't turn her head,> she doesn't react to loud noise etc. I have been to> her pedrition and she said to go see a specialist> ...So far we have an appointment for next Wed> although i am working on

getting something> sooner......she passed the newborn screaning but i> assume that isnt an accurate test either > > MY QUESTION: ..........WHAT OTHER PROBLEMS ARE> RELATED TO THIS CONDITION....CAN HER HEALING LOSS BE> RELATED ??? THANKS EVERYONE ..FALLING APART RIGHT> NOW ...crying all day. > > > > > <a href="http://www.TickerFactory.com/">> <img border="0">src="http://www.TickerFactory.com/ezt/d/1;14;11/st/20050609/k/3901/preg.png"></a>> __________________________________________________>

[Guest guest]

Hi Sharon

Just wanted to let you know that you and your baby are in my thoughts and prays. Take Care and I hope everything goes well for you.

KarolinSharon A <besilly12000@...> wrote:

Thanks for everyone who is praying for her ...We have an audiologist appointment for wed ...just an audio test ...we will see how she does. Then Sept 7th we have a 2 hr test...i have to keep her up the entire night before ....please someone explain to me how in the world do you keep a 2-3 month old up that long ! But i will some how ...they are going to test her brain waves in responce to sound and she needs to sleep thru the entire test .......her christening is sunday so i am trying to keep my mind on that and not freak out too much ..very hard! thanks all....hugs to everyone ....Sharon april Eisele <aprileisele@...> wrote: Praying for ! Please let us know what you findout from the audiologist.Hugs,April Eisele--- Sharon A <besilly12000@...> wrote:> > Hi All.....> > Most of you know me already so I wont go thru the> wole story.. (10 weeks) goes every 10 days to> the eye dr .....Now she is not following objects> with her eyes at all...nor is she looking and me> most of the time ..she turns to one direction to her> right ....that we are dealing with .....> > Problem: We don't think she is hearing most of the> time. If you talk to her she doesn't turn her head,> she doesn't react to loud noise etc. I have been to> her pedrition and she said to go see a specialist> ...So far we have an appointment for next Wed> although i am working on

getting something> sooner......she passed the newborn screaning but i> assume that isnt an accurate test either > > MY QUESTION: ..........WHAT OTHER PROBLEMS ARE> RELATED TO THIS CONDITION....CAN HER HEALING LOSS BE> RELATED ??? THANKS EVERYONE ..FALLING APART RIGHT> NOW ...crying all day. > > > > > <a href="http://www.TickerFactory.com/">> <img border="0">src="http://www.TickerFactory.com/ezt/d/1;14;11/st/20050609/k/3901/preg.png"></a>> __________________________________________________>

[Guest guest]

Dear Sharon,

Oh how I feel for you! Many days of crying for me. All behind me for the time being thankfully. My son at first kept his head turned only to the right. We now know it was because this was the only eye he could open even a bit for any length of time. Don't fret to much until you see your specialist. (I know easier said than done) I know nothing about relationship between hearing and Bleph. Good luck and you and your baby are in my prayers as of now.

Beth

Ps What is OhDo?? Does it come with Bleph or does Bleph come with it?

Sharon A <besilly12000@...> wrote:

I never heard of that is that part of Bleph Syndrome also...Thanks so much ..Hope you little guy is doing well....Hugs SHaron kim mcnatt <kim_mcnatt@...> wrote:

Hi Sharon,

I feel for you and . My son Brock was just diagnosed at 5 years old with Oh Do Syndrome, which has the bleph with it. I know there are hearing difficulties sometimes associated with OhDo, as well as some other issues. My son does not have hearing difficulties at this point, but they said he should be tested yearly for this. I will keep you and in my prayers. Sincerely, Kim Sharon A <besilly12000@...> wrote:

Hi All.....

Most of you know me already so I wont go thru the wole story.. (10 weeks) goes every 10 days to the eye dr .....Now she is not following objects with her eyes at all...nor is she looking and me most of the time ..she turns to one direction to her right ....that we are dealing with .....

Problem: We don't think she is hearing most of the time. If you talk to her she doesn't turn her head, she doesn't react to loud noise etc. I have been to her pedrition and she said to go see a specialist ...So far we have an appointment for next Wed although i am working on getting something sooner......she passed the newborn screaning but i assume that isnt an accurate test either

MY QUESTION: ..........WHAT OTHER PROBLEMS ARE RELATED TO THIS CONDITION....CAN HER HEALING LOSS BE RELATED ??? THANKS EVERYONE ..FALLING APART RIGHT NOW ...crying all day.

<a href="http://www.TickerFactory.com/"><img border="0" src="http://www.TickerFactory.com/ezt/d/1;14;11/st/20050609/k/3901/preg.png"></a> __________________________________________________

[Guest guest]

Beth, My daughter only turns to the left ! but she has both eyes open...we go today at 4 15 to the eye dr will keep everyone posted...love you guys ! Beth Mullane <srmrmm@...> wrote:

Dear Sharon,

Oh how I feel for you! Many days of crying for me. All behind me for the time being thankfully. My son at first kept his head turned only to the right. We now know it was because this was the only eye he could open even a bit for any length of time. Don't fret to much until you see your specialist. (I know easier said than done) I know nothing about relationship between hearing and Bleph. Good luck and you and your baby are in my prayers as of now.

Beth

Ps What is OhDo?? Does it come with Bleph or does Bleph come with it?

Sharon A <besilly12000@...> wrote:

I never heard of that is that part of Bleph Syndrome also...Thanks so much ..Hope you little guy is doing well....Hugs SHaron kim mcnatt <kim_mcnatt@...> wrote:

Hi Sharon,

I feel for you and . My son Brock was just diagnosed at 5 years old with Oh Do Syndrome, which has the bleph with it. I know there are hearing difficulties sometimes associated with OhDo, as well as some other issues. My son does not have hearing difficulties at this point, but they said he should be tested yearly for this. I will keep you and in my prayers. Sincerely, Kim Sharon A <besilly12000@...> wrote:

Hi All.....

Most of you know me already so I wont go thru the wole story.. (10 weeks) goes every 10 days to the eye dr .....Now she is not following objects with her eyes at all...nor is she looking and me most of the time ..she turns to one direction to her right ....that we are dealing with .....

Problem: We don't think she is hearing most of the time. If you talk to her she doesn't turn her head, she doesn't react to loud noise etc. I have been to her pedrition and she said to go see a specialist ...So far we have an appointment for next Wed although i am working on getting something sooner......she passed the newborn screaning but i assume that isnt an accurate test either

MY QUESTION: ..........WHAT OTHER PROBLEMS ARE RELATED TO THIS CONDITION....CAN HER HEALING LOSS BE RELATED ??? THANKS EVERYONE ..FALLING APART RIGHT NOW ...crying all day.

<a href="http://www.TickerFactory.com/"><img border="0" src="http://www.TickerFactory.com/ezt/d/1;14;11/st/20050609/k/3901/preg.png"></a> __________________________________________________

[Guest guest]

Hi Sharon,

I just wanted to say that I know you are absolutely scared to pieces

right now. I hope and pray that it turns out to be nothing...I know

that doesn't help they worrying right now...but know that you are in

many people's thoughts and prayers. I, too and awaiting test

results to see if my daughter has Cystic Fibrosis due to her small

size. I hope it turns out to be nothing more than just her being

tiny. We'll get through this. Hugs to you both!

Luv Donna

>

> Hi All.....

>

> Most of you know me already so I wont go thru the wole

story.. (10 weeks) goes every 10 days to the eye dr .....Now

she is not following objects with her eyes at all...nor is she

looking and me most of the time ..she turns to one direction to her

right ....that we are dealing with .....

>

> Problem: We don't think she is hearing most of the time. If you

talk to her she doesn't turn her head, she doesn't react to loud

noise etc. I have been to her pedrition and she said to go see a

specialist ...So far we have an appointment for next Wed although i

am working on getting something sooner......she passed the newborn

screaning but i assume that isnt an accurate test either

>

> MY QUESTION: ..........WHAT OTHER PROBLEMS ARE RELATED TO THIS

CONDITION....CAN HER HEALING LOSS BE RELATED ??? THANKS

EVERYONE ..FALLING APART RIGHT NOW ...crying all day.

>

>

>

>

> <a href= " http://www.TickerFactory.com/ " >

> <img border= " 0 "

src= " http://www.TickerFactory.com/ezt/d/1;14;11/st/20050609/k/3901/pr

eg.png " ></a>

> __________________________________________________

>

[Guest guest]

Hi

My son, now 10 months old was born with Bleph. He didnt open his eyes at all for the first 10 days and no-one at the hospital had a clue why, I had to explain to them what I thought was wrong with him and they kept telling me they have never heard of this condition. I was scared out of my wits. My daughter now 5,was also born with Bleph but she opened her eyes straight away, not much but still they were open. I didnt know when he was awake or sleeping. I told them all I wanted to go home because they just didnt have a clue and were just draining me emotionally. He since then is being seen by a surgeon who knows all about it, which is a relief. He will need surgeory soon but we are trying to hold off for as long as we can. Once he opened his eyes which was only very little, he insisted to look only to his right, which worried us once again. Now at 10 months he is crawling, faster than a speeding bullet, only days away from walking and his smile just lights up a room instantly. All

those days of fear filled with tears seem like a lifetime ago.

I wish you all the best and you are both in my prayers. Good luck on Sunday. Take Care

Karolin

Sharon A <besilly12000@...> wrote:

She has her appointmen next wed .....thanks so much for keeping her in your prayers...on another note...she had an eye dr app. yesterday and he isnt worring yet about her not following abjects...he wants her to see the surgeon and get another opinion. He still isn't sure if she is getting enough light into her left cornea. We have the surgeons app this comming tue....does it ever end ?

on a happier note her Christening is Sunday and I am focusing on that :-) HUgs to all. funk_michelle <change@...> wrote:

Hi Sharon,It's Thursday here so I assume it'll be wednesday for you? Here'swishing you and all the best for your appointment today . is only 10 weeks soshe may not have the ability to localise sound yet or even turn her head as neck controlhas not fully developed. Also, I remembered both my kids when they were 's age wouldsleep through anything even loud club music! (don't ask... ha!ha!) Do let us know how you and are after your appointment. In themeantime, I'll pray for you. I'll ask Chloe and Naomi to pray for : )Take care Sharon.> > Hi All.....> > Most of you know me already so I wont go thru the wolestory.. (10 weeks) goes every 10 days to the eye dr .....Now she is not following objectswith her eyes at all...nor is she looking and me most of the time ..she turns to one direction toher right ....that we are dealing with .....> > Problem: We don't think she is hearing most of the time.

If youtalk to her she doesn't turn her head, she doesn't react to loud noise etc. I have been toher pedrition and she said to go see a specialist ...So far we have an appointment for nextWed although i am working on getting something sooner......she passed the newbornscreaning but i assume that isnt an accurate test either > > MY QUESTION: ..........WHAT OTHER PROBLEMS ARE RELATED TO THISCONDITION....CAN HER HEALING LOSS BE RELATED ??? THANKS EVERYONE ..FALLING APART RIGHTNOW ...crying all day. > > > > > <a href="http://www.TickerFactory.com/">> <img border="0" src="http://www.TickerFactory.com/ezt/d/1;14;11/st/20050609/k/3901/preg.png"></a> > __________________________________________________>

[Guest guest]

Karolin,

I am crying ...your note was very moving and I know I will look back and this too will seem like it was a million years ago. I am more worried about her hearing than her eyes...i guess because i have been thru the eye thing with my boys ....will keep everyone posted...

i am dead from cleaning for the christening ...I am having 40 people for a pool party afterwards ( they are forcasting heavy showers :-( not fun) but will not ruine our day. Will let everyone know how it goes...Hugs to all Karolin Demircian <karolin_demircian@...> wrote:

Hi

My son, now 10 months old was born with Bleph. He didnt open his eyes at all for the first 10 days and no-one at the hospital had a clue why, I had to explain to them what I thought was wrong with him and they kept telling me they have never heard of this condition. I was scared out of my wits. My daughter now 5,was also born with Bleph but she opened her eyes straight away, not much but still they were open. I didnt know when he was awake or sleeping. I told them all I wanted to go home because they just didnt have a clue and were just draining me emotionally. He since then is being seen by a surgeon who knows all about it, which is a relief. He will need surgeory soon but we are trying to hold off for as long as we can. Once he opened his eyes which was only very little, he insisted to look only to his right, which worried us once again. Now at 10 months he is crawling, faster than a speeding bullet, only days away from walking and his smile just lights up a room instantly. All

those days of fear filled with tears seem like a lifetime ago.

I wish you all the best and you are both in my prayers. Good luck on Sunday. Take Care

Karolin

Sharon A <besilly12000@...> wrote:

She has her appointmen next wed .....thanks so much for keeping her in your prayers...on another note...she had an eye dr app. yesterday and he isnt worring yet about her not following abjects...he wants her to see the surgeon and get another opinion. He still isn't sure if she is getting enough light into her left cornea. We have the surgeons app this comming tue....does it ever end ?

on a happier note her Christening is Sunday and I am focusing on that :-) HUgs to all. funk_michelle <change@...> wrote:

Hi Sharon,It's Thursday here so I assume it'll be wednesday for you? Here'swishing you and all the best for your appointment today . is only 10 weeks soshe may not have the ability to localise sound yet or even turn her head as neck controlhas not fully developed. Also, I remembered both my kids when they were 's age wouldsleep through anything even loud club music! (don't ask... ha!ha!) Do let us know how you and are after your appointment. In themeantime, I'll pray for you. I'll ask Chloe and Naomi to pray for : )Take care Sharon.> > Hi All.....> > Most of you know me already so I wont go thru the wolestory.. (10 weeks) goes every 10 days to the eye dr .....Now she is not following objectswith her eyes at all...nor is she looking and me most of the time ..she turns to one direction toher right ....that we are dealing with .....> > Problem: We don't think she is hearing most of the time.

If youtalk to her she doesn't turn her head, she doesn't react to loud noise etc. I have been toher pedrition and she said to go see a specialist ...So far we have an appointment for nextWed although i am working on getting something sooner......she passed the newbornscreaning but i assume that isnt an accurate test either > > MY QUESTION: ..........WHAT OTHER PROBLEMS ARE RELATED TO THISCONDITION....CAN HER HEALING LOSS BE RELATED ??? THANKS EVERYONE ..FALLING APART RIGHTNOW ...crying all day. > > > > > <a href="http://www.TickerFactory.com/">> <img border="0" src="http://www.TickerFactory.com/ezt/d/1;14;11/st/20050609/k/3901/preg.png"></a> > __________________________________________________>