Re: finally got some hearing aids, useless

[Guest guest]

There is hope! I agree with Amy!

Remember... Amelie's ears are new to sound... so not only are you putting in

these foreign objects, you are giving her " newborn " ears amplification which

is also totally foreign. We ended up starting Gracie out with one aid at a

time... and left it off. Once she tolerated it a bit, we would slowly turn up

the sound. Also...we had to use toupee tape because when she was smaller, her

little ears wouldn't hold the aid. Now she uses a bone conduction aid more

because she almost always has fluid in her left ear... but that's another story!

I am sure you will get lots of suggestions and encouragement on this

subject... have faith... and patience. And remember... BABY STEPS!!!! :-)

Good luck!

Kristi

mommy to Gracie, 3

[Guest guest]

There is hope! I agree with Amy!

Remember... Amelie's ears are new to sound... so not only are you putting in

these foreign objects, you are giving her " newborn " ears amplification which

is also totally foreign. We ended up starting Gracie out with one aid at a

time... and left it off. Once she tolerated it a bit, we would slowly turn up

the sound. Also...we had to use toupee tape because when she was smaller, her

little ears wouldn't hold the aid. Now she uses a bone conduction aid more

because she almost always has fluid in her left ear... but that's another story!

I am sure you will get lots of suggestions and encouragement on this

subject... have faith... and patience. And remember... BABY STEPS!!!! :-)

Good luck!

Kristi

mommy to Gracie, 3

[Guest guest]

There is hope! I agree with Amy!

Remember... Amelie's ears are new to sound... so not only are you putting in

these foreign objects, you are giving her " newborn " ears amplification which

is also totally foreign. We ended up starting Gracie out with one aid at a

time... and left it off. Once she tolerated it a bit, we would slowly turn up

the sound. Also...we had to use toupee tape because when she was smaller, her

little ears wouldn't hold the aid. Now she uses a bone conduction aid more

because she almost always has fluid in her left ear... but that's another story!

I am sure you will get lots of suggestions and encouragement on this

subject... have faith... and patience. And remember... BABY STEPS!!!! :-)

Good luck!

Kristi

mommy to Gracie, 3

[Guest guest]

There is hope, I promise! Max did the same thing at first, but now he never

pulls the aide. But trust me in the beginning, I felt the same way...but I

tried for short amounts of time and kept him busy with playing with me...now I

can leave the room and he won't even take them out. THERE IS HOPE, I PROMISE!

What is her hearing loss? Max has severe in the one ear (abnormally shaped so

we are having a very difficult time keeping one in without too much feedback, so

he rarely wears that one) and moderate in the other. In the moderate, we are

noticing progress since he has been wearing it and that makes up for all the

headache.

Take it slow...and be patient. You'll get there!

lesley chan wrote:

Amelie finally got a pair that fit!! BUT she wont keep them in, i have

tried huggies bands, hair bands and tape, this cheeky chanette has

decided shes not wearing them end of!!, I am fed up of trying and its

only been three days, what do you suggest?

I think if they had managed it much earlier she would have been used

to them, but shes getting a little minx of a personality, and no way

is she having this one!!

all my worrying about getting some sound in may be useless without her

tolerating them!

love Les and chanettes x 4 (one cheeky monkey)

CHARGE SYNDROME LISTSERV PHOTO PAGE:

http://www.imagestation.com/album/?id=2117043995

Membership of this email support group does not constitute membership in the

CHARGE Syndrome Foundation; for information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter),

please contact marion@... or visit

the web site at http://www.chargesyndrome.org

8th International

CHARGE Syndrome Conference, July, 2007. Information will be available at

www.chargesyndrome.org or by calling 1-.

[Guest guest]

There is hope, I promise! Max did the same thing at first, but now he never

pulls the aide. But trust me in the beginning, I felt the same way...but I

tried for short amounts of time and kept him busy with playing with me...now I

can leave the room and he won't even take them out. THERE IS HOPE, I PROMISE!

What is her hearing loss? Max has severe in the one ear (abnormally shaped so

we are having a very difficult time keeping one in without too much feedback, so

he rarely wears that one) and moderate in the other. In the moderate, we are

noticing progress since he has been wearing it and that makes up for all the

headache.

Take it slow...and be patient. You'll get there!

lesley chan wrote:

Amelie finally got a pair that fit!! BUT she wont keep them in, i have

tried huggies bands, hair bands and tape, this cheeky chanette has

decided shes not wearing them end of!!, I am fed up of trying and its

only been three days, what do you suggest?

I think if they had managed it much earlier she would have been used

to them, but shes getting a little minx of a personality, and no way

is she having this one!!

all my worrying about getting some sound in may be useless without her

tolerating them!

love Les and chanettes x 4 (one cheeky monkey)

CHARGE SYNDROME LISTSERV PHOTO PAGE:

http://www.imagestation.com/album/?id=2117043995

Membership of this email support group does not constitute membership in the

CHARGE Syndrome Foundation; for information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter),

please contact marion@... or visit

the web site at http://www.chargesyndrome.org

8th International

CHARGE Syndrome Conference, July, 2007. Information will be available at

www.chargesyndrome.org or by calling 1-.

[Guest guest]

Lesley, my daughter pulls hers out still after 7 months. So, my Deaf and

Blind School therapist gave me these little hats. They look like aviator

caps (but very thin t-shirt cotton material), or like a swimming cap. We

call them " aviator caps " . They have flaps that go over her ears, and the hat

ties under her chin. The hat doesn't bother her at all. She STILL tries to

take the aides out, but she can't get to them They are actually quite cute!

Ask any of your therapists if they can get these for you. I have pale yellow

and mint green...I hear they come in an array of colors!

, mommy to Meagan (CHaRgE) and 18 months, and big brother

3 3/4 years, married to the best daddy in the world for 9 years

-- Re: finally got some hearing aids, useless

There is hope, I promise! Max did the same thing at first, but now he never

pulls the aide. But trust me in the beginning, I felt the same way...but I

tried for short amounts of time and kept him busy with playing with me...now

I can leave the room and he won't even take them out. THERE IS HOPE, I

PROMISE!

What is her hearing loss? Max has severe in the one ear (abnormally shaped

so we are having a very difficult time keeping one in without too much

feedback, so he rarely wears that one) and moderate in the other. In the

moderate, we are noticing progress since he has been wearing it and that

makes up for all the headache.

Take it slow...and be patient. You'll get there!

lesley chan wrote:

Amelie finally got a pair that fit!! BUT she wont keep them in, i have

tried huggies bands, hair bands and tape, this cheeky chanette has

decided shes not wearing them end of!!, I am fed up of trying and its

only been three days, what do you suggest?

I think if they had managed it much earlier she would have been used

to them, but shes getting a little minx of a personality, and no way

is she having this one!!

all my worrying about getting some sound in may be useless without her

tolerating them!

love Les and chanettes x 4 (one cheeky monkey)

CHARGE SYNDROME LISTSERV PHOTO PAGE:

http://www.imagestation.com/album/?id=2117043995

Membership of this email support group does not constitute membership in the

CHARGE Syndrome Foundation; for information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter),

please contact marion@... or visit

the web site at http://www.chargesyndrome.org

8th International

CHARGE Syndrome Conference, July, 2007. Information will be available at www

chargesyndrome.org or by calling 1-.

[Guest guest]

Lesley, my daughter pulls hers out still after 7 months. So, my Deaf and

Blind School therapist gave me these little hats. They look like aviator

caps (but very thin t-shirt cotton material), or like a swimming cap. We

call them " aviator caps " . They have flaps that go over her ears, and the hat

ties under her chin. The hat doesn't bother her at all. She STILL tries to

take the aides out, but she can't get to them They are actually quite cute!

Ask any of your therapists if they can get these for you. I have pale yellow

and mint green...I hear they come in an array of colors!

, mommy to Meagan (CHaRgE) and 18 months, and big brother

3 3/4 years, married to the best daddy in the world for 9 years

-- Re: finally got some hearing aids, useless

There is hope, I promise! Max did the same thing at first, but now he never

pulls the aide. But trust me in the beginning, I felt the same way...but I

tried for short amounts of time and kept him busy with playing with me...now

I can leave the room and he won't even take them out. THERE IS HOPE, I

PROMISE!

What is her hearing loss? Max has severe in the one ear (abnormally shaped

so we are having a very difficult time keeping one in without too much

feedback, so he rarely wears that one) and moderate in the other. In the

moderate, we are noticing progress since he has been wearing it and that

makes up for all the headache.

Take it slow...and be patient. You'll get there!

lesley chan wrote:

Amelie finally got a pair that fit!! BUT she wont keep them in, i have

tried huggies bands, hair bands and tape, this cheeky chanette has

decided shes not wearing them end of!!, I am fed up of trying and its

only been three days, what do you suggest?

I think if they had managed it much earlier she would have been used

to them, but shes getting a little minx of a personality, and no way

is she having this one!!

all my worrying about getting some sound in may be useless without her

tolerating them!

love Les and chanettes x 4 (one cheeky monkey)

CHARGE SYNDROME LISTSERV PHOTO PAGE:

http://www.imagestation.com/album/?id=2117043995

Membership of this email support group does not constitute membership in the

CHARGE Syndrome Foundation; for information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter),

please contact marion@... or visit

the web site at http://www.chargesyndrome.org

8th International

CHARGE Syndrome Conference, July, 2007. Information will be available at www

chargesyndrome.org or by calling 1-.

[Guest guest]

Lesley, my daughter pulls hers out still after 7 months. So, my Deaf and

Blind School therapist gave me these little hats. They look like aviator

caps (but very thin t-shirt cotton material), or like a swimming cap. We

call them " aviator caps " . They have flaps that go over her ears, and the hat

ties under her chin. The hat doesn't bother her at all. She STILL tries to

take the aides out, but she can't get to them They are actually quite cute!

Ask any of your therapists if they can get these for you. I have pale yellow

and mint green...I hear they come in an array of colors!

, mommy to Meagan (CHaRgE) and 18 months, and big brother

3 3/4 years, married to the best daddy in the world for 9 years

-- Re: finally got some hearing aids, useless

There is hope, I promise! Max did the same thing at first, but now he never

pulls the aide. But trust me in the beginning, I felt the same way...but I

tried for short amounts of time and kept him busy with playing with me...now

I can leave the room and he won't even take them out. THERE IS HOPE, I

PROMISE!

What is her hearing loss? Max has severe in the one ear (abnormally shaped

so we are having a very difficult time keeping one in without too much

feedback, so he rarely wears that one) and moderate in the other. In the

moderate, we are noticing progress since he has been wearing it and that

makes up for all the headache.

Take it slow...and be patient. You'll get there!

lesley chan wrote:

Amelie finally got a pair that fit!! BUT she wont keep them in, i have

tried huggies bands, hair bands and tape, this cheeky chanette has

decided shes not wearing them end of!!, I am fed up of trying and its

only been three days, what do you suggest?

I think if they had managed it much earlier she would have been used

to them, but shes getting a little minx of a personality, and no way

is she having this one!!

all my worrying about getting some sound in may be useless without her

tolerating them!

love Les and chanettes x 4 (one cheeky monkey)

CHARGE SYNDROME LISTSERV PHOTO PAGE:

http://www.imagestation.com/album/?id=2117043995

Membership of this email support group does not constitute membership in the

CHARGE Syndrome Foundation; for information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter),

please contact marion@... or visit

the web site at http://www.chargesyndrome.org

8th International

CHARGE Syndrome Conference, July, 2007. Information will be available at www

chargesyndrome.org or by calling 1-.

[Guest guest]

Les,

Eva was the same way and all you can do it keep at it til she is use

to it. Try distracting her as much as possible, I know its hard but

its the only way unless you superglue it to her...LOL! Which I dont

think the doctor like...LOL!

Good Luck!

Crystal and Eva (1 year old CHARGEr)

>

> Amelie finally got a pair that fit!! BUT she wont keep them in, i

have

> tried huggies bands, hair bands and tape, this cheeky chanette has

> decided shes not wearing them end of!!, I am fed up of trying and

its

> only been three days, what do you suggest?

>

> I think if they had managed it much earlier she would have been

used

> to them, but shes getting a little minx of a personality, and no

way

> is she having this one!!

>

> all my worrying about getting some sound in may be useless without

her

> tolerating them!

>

> love Les and chanettes x 4 (one cheeky monkey)

>

[Guest guest]

Les,

Eva was the same way and all you can do it keep at it til she is use

to it. Try distracting her as much as possible, I know its hard but

its the only way unless you superglue it to her...LOL! Which I dont

think the doctor like...LOL!

Good Luck!

Crystal and Eva (1 year old CHARGEr)

>

> Amelie finally got a pair that fit!! BUT she wont keep them in, i

have

> tried huggies bands, hair bands and tape, this cheeky chanette has

> decided shes not wearing them end of!!, I am fed up of trying and

its

> only been three days, what do you suggest?

>

> I think if they had managed it much earlier she would have been

used

> to them, but shes getting a little minx of a personality, and no

way

> is she having this one!!

>

> all my worrying about getting some sound in may be useless without

her

> tolerating them!

>

> love Les and chanettes x 4 (one cheeky monkey)

>

[Guest guest]

thanks folks

Amelie is 95 DB deaf in bothway back age 6 months old, but this has

not been repeated since the gromits ,(well one gromit) the other is

missing in action somewhere in the middle ear area.

The funny right ear with no lobe, is the worst and the CT scan

revealed badly fused bones, bones missing and no semicircular canals,

the ENT guy said the right ear is a mess internally, also the aid

doesnt stay in very well because the entrance seems very thin and

narrow, as opposed to the other,

I will keep trying now i know this is the norm

Also her secretions are really heavy when i put it in, and so this

distresses her and has a knock on with us, so we feel cruel making her

have it in!!

cheers from chanettes UK having a great week, no real dilemmas even

the dysons working!!

> Les,

> Eva was the same way and all you can do it keep at it til she is use

> to it. Try distracting her as much as possible, I know its hard but

> its the only way unless you superglue it to her...LOL! Which I dont

> think the doctor like...LOL!

> Good Luck!

>

> Crystal and Eva (1 year old CHARGEr)

>

> >

> > Amelie finally got a pair that fit!! BUT she wont keep them in, i

> have

> > tried huggies bands, hair bands and tape, this cheeky chanette has

> > decided shes not wearing them end of!!, I am fed up of trying and

> its

> > only been three days, what do you suggest?

> >

> > I think if they had managed it much earlier she would have been

> used

> > to them, but shes getting a little minx of a personality, and no

> way

> > is she having this one!!

> >

> > all my worrying about getting some sound in may be useless without

> her

> > tolerating them!

> >

> > love Les and chanettes x 4 (one cheeky monkey)

> >

>

>

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support group does not constitute membership in the

> CHARGE Syndrome Foundation; for information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

thanks folks

Amelie is 95 DB deaf in bothway back age 6 months old, but this has

not been repeated since the gromits ,(well one gromit) the other is

missing in action somewhere in the middle ear area.

The funny right ear with no lobe, is the worst and the CT scan

revealed badly fused bones, bones missing and no semicircular canals,

the ENT guy said the right ear is a mess internally, also the aid

doesnt stay in very well because the entrance seems very thin and

narrow, as opposed to the other,

I will keep trying now i know this is the norm

Also her secretions are really heavy when i put it in, and so this

distresses her and has a knock on with us, so we feel cruel making her

have it in!!

cheers from chanettes UK having a great week, no real dilemmas even

the dysons working!!

> Les,

> Eva was the same way and all you can do it keep at it til she is use

> to it. Try distracting her as much as possible, I know its hard but

> its the only way unless you superglue it to her...LOL! Which I dont

> think the doctor like...LOL!

> Good Luck!

>

> Crystal and Eva (1 year old CHARGEr)

>

> >

> > Amelie finally got a pair that fit!! BUT she wont keep them in, i

> have

> > tried huggies bands, hair bands and tape, this cheeky chanette has

> > decided shes not wearing them end of!!, I am fed up of trying and

> its

> > only been three days, what do you suggest?

> >

> > I think if they had managed it much earlier she would have been

> used

> > to them, but shes getting a little minx of a personality, and no

> way

> > is she having this one!!

> >

> > all my worrying about getting some sound in may be useless without

> her

> > tolerating them!

> >

> > love Les and chanettes x 4 (one cheeky monkey)

> >

>

>

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support group does not constitute membership in the

> CHARGE Syndrome Foundation; for information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

thanks folks

Amelie is 95 DB deaf in bothway back age 6 months old, but this has

not been repeated since the gromits ,(well one gromit) the other is

missing in action somewhere in the middle ear area.

The funny right ear with no lobe, is the worst and the CT scan

revealed badly fused bones, bones missing and no semicircular canals,

the ENT guy said the right ear is a mess internally, also the aid

doesnt stay in very well because the entrance seems very thin and

narrow, as opposed to the other,

I will keep trying now i know this is the norm

Also her secretions are really heavy when i put it in, and so this

distresses her and has a knock on with us, so we feel cruel making her

have it in!!

cheers from chanettes UK having a great week, no real dilemmas even

the dysons working!!

> Les,

> Eva was the same way and all you can do it keep at it til she is use

> to it. Try distracting her as much as possible, I know its hard but

> its the only way unless you superglue it to her...LOL! Which I dont

> think the doctor like...LOL!

> Good Luck!

>

> Crystal and Eva (1 year old CHARGEr)

>

> >

> > Amelie finally got a pair that fit!! BUT she wont keep them in, i

> have

> > tried huggies bands, hair bands and tape, this cheeky chanette has

> > decided shes not wearing them end of!!, I am fed up of trying and

> its

> > only been three days, what do you suggest?

> >

> > I think if they had managed it much earlier she would have been

> used

> > to them, but shes getting a little minx of a personality, and no

> way

> > is she having this one!!

> >

> > all my worrying about getting some sound in may be useless without

> her

> > tolerating them!

> >

> > love Les and chanettes x 4 (one cheeky monkey)

> >

>

>

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support group does not constitute membership in the

> CHARGE Syndrome Foundation; for information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

Stick with it stick with it stick with it...don't give up! Kennedy got hers

first at 9months...we started with a goal of 15 minutes, playing with her

hands, new little games/toys to occupy her, then built on from there. It is

HARD at first but don't give up - she will realize soon that they DO help

and will want them on. We had a special bag of little toys we used for

'Hearing Aid time " ; she only could see/play with them during that time so

they were new and interesting. Once she made the connection that they

helped, she LOVED them. It was really hard at first....perservere!!!!

Good luck, you'll get there...

>

> Amelie finally got a pair that fit!! BUT she wont keep them in, i have

> tried huggies bands, hair bands and tape, this cheeky chanette has

> decided shes not wearing them end of!!, I am fed up of trying and its

> only been three days, what do you suggest?

>

> I think if they had managed it much earlier she would have been used

> to them, but shes getting a little minx of a personality, and no way

> is she having this one!!

>

> all my worrying about getting some sound in may be useless without her

> tolerating them!

>

> love Les and chanettes x 4 (one cheeky monkey)

>

>

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support group does not constitute membership in

> the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

Lesley,

OK, so what in the world is a gromit?

Also, what's a Dyson. Or should I say who?

Bonnie

[Guest guest]

Lesley,

OK, so what in the world is a gromit?

Also, what's a Dyson. Or should I say who?

Bonnie

[Guest guest]

Lesley,

OK, so what in the world is a gromit?

Also, what's a Dyson. Or should I say who?

Bonnie

[Guest guest]

Hi guys

I know your all right, and its probably more about me giving up

because she is giving me bad vibes, and I keep thinking shes going to

associate pain and not liking them to me, and with so much of that in

her life, I only like dong the nice things with her.

So tomorrow i will start like advised by my experts on here, to do 15

mins here and there to ween her , and i like the idea of trying one at

a time, rather than shoving both in, I dont think she is ever going to

like the funny shaped ear one, she gets too upset.

so moral of todays dilemma ........lesley stop whinging and get on

with job in hand!

love to you all Les and the Chanettes x

> Stick with it stick with it stick with it...don't give up! Kennedy got hers

> first at 9months...we started with a goal of 15 minutes, playing with her

> hands, new little games/toys to occupy her, then built on from there. It is

> HARD at first but don't give up - she will realize soon that they DO help

> and will want them on. We had a special bag of little toys we used for

> 'Hearing Aid time " ; she only could see/play with them during that time so

> they were new and interesting. Once she made the connection that they

> helped, she LOVED them. It was really hard at first....perservere!!!!

> Good luck, you'll get there...

>

>

>

>

> >

> > Amelie finally got a pair that fit!! BUT she wont keep them in, i have

> > tried huggies bands, hair bands and tape, this cheeky chanette has

> > decided shes not wearing them end of!!, I am fed up of trying and its

> > only been three days, what do you suggest?

> >

> > I think if they had managed it much earlier she would have been used

> > to them, but shes getting a little minx of a personality, and no way

> > is she having this one!!

> >

> > all my worrying about getting some sound in may be useless without her

> > tolerating them!

> >

> > love Les and chanettes x 4 (one cheeky monkey)

> >

> >

> >

> >

> >

> >

> >

> > CHARGE SYNDROME LISTSERV PHOTO PAGE:

> > http://www.imagestation.com/album/?id=2117043995

> >

> > Membership of this email support group does not constitute membership in

> > the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome

> > Foundation or to become a member (and get the newsletter),

> > please contact marion@... or visit

> > the web site at http://www.chargesyndrome.org

> >

> > 8th International

> > CHARGE Syndrome Conference, July, 2007. Information will be available at

> > www.chargesyndrome.org or by calling 1-.

> >

[Guest guest]

Hi guys

I know your all right, and its probably more about me giving up

because she is giving me bad vibes, and I keep thinking shes going to

associate pain and not liking them to me, and with so much of that in

her life, I only like dong the nice things with her.

So tomorrow i will start like advised by my experts on here, to do 15

mins here and there to ween her , and i like the idea of trying one at

a time, rather than shoving both in, I dont think she is ever going to

like the funny shaped ear one, she gets too upset.

so moral of todays dilemma ........lesley stop whinging and get on

with job in hand!

love to you all Les and the Chanettes x

> Stick with it stick with it stick with it...don't give up! Kennedy got hers

> first at 9months...we started with a goal of 15 minutes, playing with her

> hands, new little games/toys to occupy her, then built on from there. It is

> HARD at first but don't give up - she will realize soon that they DO help

> and will want them on. We had a special bag of little toys we used for

> 'Hearing Aid time " ; she only could see/play with them during that time so

> they were new and interesting. Once she made the connection that they

> helped, she LOVED them. It was really hard at first....perservere!!!!

> Good luck, you'll get there...

>

>

>

>

> >

> > Amelie finally got a pair that fit!! BUT she wont keep them in, i have

> > tried huggies bands, hair bands and tape, this cheeky chanette has

> > decided shes not wearing them end of!!, I am fed up of trying and its

> > only been three days, what do you suggest?

> >

> > I think if they had managed it much earlier she would have been used

> > to them, but shes getting a little minx of a personality, and no way

> > is she having this one!!

> >

> > all my worrying about getting some sound in may be useless without her

> > tolerating them!

> >

> > love Les and chanettes x 4 (one cheeky monkey)

> >

> >

> >

> >

> >

> >

> >

> > CHARGE SYNDROME LISTSERV PHOTO PAGE:

> > http://www.imagestation.com/album/?id=2117043995

> >

> > Membership of this email support group does not constitute membership in

> > the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome

> > Foundation or to become a member (and get the newsletter),

> > please contact marion@... or visit

> > the web site at http://www.chargesyndrome.org

> >

> > 8th International

> > CHARGE Syndrome Conference, July, 2007. Information will be available at

> > www.chargesyndrome.org or by calling 1-.

> >

[Guest guest]

Hi guys

I know your all right, and its probably more about me giving up

because she is giving me bad vibes, and I keep thinking shes going to

associate pain and not liking them to me, and with so much of that in

her life, I only like dong the nice things with her.

So tomorrow i will start like advised by my experts on here, to do 15

mins here and there to ween her , and i like the idea of trying one at

a time, rather than shoving both in, I dont think she is ever going to

like the funny shaped ear one, she gets too upset.

so moral of todays dilemma ........lesley stop whinging and get on

with job in hand!

love to you all Les and the Chanettes x

> Stick with it stick with it stick with it...don't give up! Kennedy got hers

> first at 9months...we started with a goal of 15 minutes, playing with her

> hands, new little games/toys to occupy her, then built on from there. It is

> HARD at first but don't give up - she will realize soon that they DO help

> and will want them on. We had a special bag of little toys we used for

> 'Hearing Aid time " ; she only could see/play with them during that time so

> they were new and interesting. Once she made the connection that they

> helped, she LOVED them. It was really hard at first....perservere!!!!

> Good luck, you'll get there...

>

>

>

>

> >

> > Amelie finally got a pair that fit!! BUT she wont keep them in, i have

> > tried huggies bands, hair bands and tape, this cheeky chanette has

> > decided shes not wearing them end of!!, I am fed up of trying and its

> > only been three days, what do you suggest?

> >

> > I think if they had managed it much earlier she would have been used

> > to them, but shes getting a little minx of a personality, and no way

> > is she having this one!!

> >

> > all my worrying about getting some sound in may be useless without her

> > tolerating them!

> >

> > love Les and chanettes x 4 (one cheeky monkey)

> >

> >

> >

> >

> >

> >

> >

> > CHARGE SYNDROME LISTSERV PHOTO PAGE:

> > http://www.imagestation.com/album/?id=2117043995

> >

> > Membership of this email support group does not constitute membership in

> > the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome

> > Foundation or to become a member (and get the newsletter),

> > please contact marion@... or visit

> > the web site at http://www.chargesyndrome.org

> >

> > 8th International

> > CHARGE Syndrome Conference, July, 2007. Information will be available at

> > www.chargesyndrome.org or by calling 1-.

> >

[Guest guest]

Ah, Lesley, but the girl has spirit. That is worth all the grief. As the

saying goes, be careful what you wish for as you may just get it. She is

turning into . Now do you still want her to be just like the little

girl on the tricycle in Manchester?

As everyone else has said, persevere. It will probably drive you nuts but

she most likely will accept them in the end. Funnily enough, was

really passive about them at first, but then she was only 6 months old and I

think the 7 hour open heart surgery had probably knocked the stuffing out of

her. But hell, as she was approaching two, it became a battle to keep them

on. I lost count of the numerous times we had to put them back over and

over and over each day......... Then suddenly at some point, she just

decided that they were hers and she would cry if anyone took them out. I

don't think this was because they gave her much benefit. It's just that

they were hers! How possessive can a girl get? Long story short, she then

just accepted them, even after her hearing had deteriorated to the point

where the aids were of no benefit and she used them right up to the point of

implant.

Then it all started again two weeks ago. After all the angst about to

implant or not to implant, when she was switched on, she yanked the implant

off and totally refused to wear it again. We eventually managed to bribe

her into wearing it swithced off ( " if you don't wear the implant you are

not coming shopping with me, you can stay here and be bored with daddy " ).

Then she decided she really didn't like sound and despite the excitement of

the CI team at first map, soon as she got home she yanked it off again and

refused it for a few days. Over the weekend, she was again bribed into

wearing it switched on (what a girl will do for a bit of nan bread!) and it

has been pretty good since. She has worn it for nearly 12 hours today

(although her deaf 1:1 aid bless her didn't realise that the flashing light

meant her coil had come off so suspect she has not had it switched on most

of the day!).

The moral of this story is, if you want Amelie to be like , she will

be just like her all the way, warts and all! Keep trying Les, it will

happen as everyone else said.

Oh and also has no semicircular canals and look at her go! The

right ear has also always been a pain to get the moulds right. The canals

are very narrow on both sides but there is just something about the shape of

the right one. We have usually asked the techs to make the stem a little

longer and this has done the trick and stopped the whistling, but we have

kept having to remind them of this.

You know that with the potential onset of our insanity due to hearing

aids and cochlear implants, you are wished much luck. I am hoping that map

2 does not scare the tyke into refusing to wear them again.

Good luck! Oh and I love that you are having a great week and no dilemmas.

It's Yuka's " perfectly ordinary day " time.

A knackered Flo (yes, girlie now has a sinus infection so still no sleep!)

>

> thanks folks

>

> Amelie is 95 DB deaf in bothway back age 6 months old, but this has

> not been repeated since the gromits ,(well one gromit) the other is

> missing in action somewhere in the middle ear area.

>

> The funny right ear with no lobe, is the worst and the CT scan

> revealed badly fused bones, bones missing and no semicircular canals,

> the ENT guy said the right ear is a mess internally, also the aid

> doesnt stay in very well because the entrance seems very thin and

> narrow, as opposed to the other,

>

> I will keep trying now i know this is the norm

>

> Also her secretions are really heavy when i put it in, and so this

> distresses her and has a knock on with us, so we feel cruel making her

> have it in!!

>

> cheers from chanettes UK having a great week, no real dilemmas even

> the dysons working!!

>

>

[Guest guest]

Ah, Lesley, but the girl has spirit. That is worth all the grief. As the

saying goes, be careful what you wish for as you may just get it. She is

turning into . Now do you still want her to be just like the little

girl on the tricycle in Manchester?

As everyone else has said, persevere. It will probably drive you nuts but

she most likely will accept them in the end. Funnily enough, was

really passive about them at first, but then she was only 6 months old and I

think the 7 hour open heart surgery had probably knocked the stuffing out of

her. But hell, as she was approaching two, it became a battle to keep them

on. I lost count of the numerous times we had to put them back over and

over and over each day......... Then suddenly at some point, she just

decided that they were hers and she would cry if anyone took them out. I

don't think this was because they gave her much benefit. It's just that

they were hers! How possessive can a girl get? Long story short, she then

just accepted them, even after her hearing had deteriorated to the point

where the aids were of no benefit and she used them right up to the point of

implant.

Then it all started again two weeks ago. After all the angst about to

implant or not to implant, when she was switched on, she yanked the implant

off and totally refused to wear it again. We eventually managed to bribe

her into wearing it swithced off ( " if you don't wear the implant you are

not coming shopping with me, you can stay here and be bored with daddy " ).

Then she decided she really didn't like sound and despite the excitement of

the CI team at first map, soon as she got home she yanked it off again and

refused it for a few days. Over the weekend, she was again bribed into

wearing it switched on (what a girl will do for a bit of nan bread!) and it

has been pretty good since. She has worn it for nearly 12 hours today

(although her deaf 1:1 aid bless her didn't realise that the flashing light

meant her coil had come off so suspect she has not had it switched on most

of the day!).

The moral of this story is, if you want Amelie to be like , she will

be just like her all the way, warts and all! Keep trying Les, it will

happen as everyone else said.

Oh and also has no semicircular canals and look at her go! The

right ear has also always been a pain to get the moulds right. The canals

are very narrow on both sides but there is just something about the shape of

the right one. We have usually asked the techs to make the stem a little

longer and this has done the trick and stopped the whistling, but we have

kept having to remind them of this.

You know that with the potential onset of our insanity due to hearing

aids and cochlear implants, you are wished much luck. I am hoping that map

2 does not scare the tyke into refusing to wear them again.

Good luck! Oh and I love that you are having a great week and no dilemmas.

It's Yuka's " perfectly ordinary day " time.

A knackered Flo (yes, girlie now has a sinus infection so still no sleep!)

>

> thanks folks

>

> Amelie is 95 DB deaf in bothway back age 6 months old, but this has

> not been repeated since the gromits ,(well one gromit) the other is

> missing in action somewhere in the middle ear area.

>

> The funny right ear with no lobe, is the worst and the CT scan

> revealed badly fused bones, bones missing and no semicircular canals,

> the ENT guy said the right ear is a mess internally, also the aid

> doesnt stay in very well because the entrance seems very thin and

> narrow, as opposed to the other,

>

> I will keep trying now i know this is the norm

>

> Also her secretions are really heavy when i put it in, and so this

> distresses her and has a knock on with us, so we feel cruel making her

> have it in!!

>

> cheers from chanettes UK having a great week, no real dilemmas even

> the dysons working!!

>

>

[Guest guest]

Hi Flo and gang

I still want her to end up like , it was the bike thing that

did it for me, she was totally buzzing and filled with such zest for

life, when we were warned early on not to expect 'too much hope'!!,

mind you maybe not the sleep issues!!!!!!!!!!! I need my beauty sleep!!!!

great news about the implants, i cant wait for these, but i think we

are a long way off.

as for the naan bread a girl after my own heart, i too do almost

anything for food!!

take care i will persevere les and chanettes x

> Ah, Lesley, but the girl has spirit. That is worth all the grief. As the

> saying goes, be careful what you wish for as you may just get it. She is

> turning into . Now do you still want her to be just like the little

> girl on the tricycle in Manchester?

>

> As everyone else has said, persevere. It will probably drive you nuts but

> she most likely will accept them in the end. Funnily enough, was

> really passive about them at first, but then she was only 6 months old and I

> think the 7 hour open heart surgery had probably knocked the stuffing out of

> her. But hell, as she was approaching two, it became a battle to keep them

> on. I lost count of the numerous times we had to put them back over and

> over and over each day......... Then suddenly at some point, she just

> decided that they were hers and she would cry if anyone took them out. I

> don't think this was because they gave her much benefit. It's just that

> they were hers! How possessive can a girl get? Long story short, she then

> just accepted them, even after her hearing had deteriorated to the point

> where the aids were of no benefit and she used them right up to the point of

> implant.

>

> Then it all started again two weeks ago. After all the angst about to

> implant or not to implant, when she was switched on, she yanked the implant

> off and totally refused to wear it again. We eventually managed to bribe

> her into wearing it swithced off ( " if you don't wear the implant you are

> not coming shopping with me, you can stay here and be bored with daddy " ).

> Then she decided she really didn't like sound and despite the excitement of

> the CI team at first map, soon as she got home she yanked it off again and

> refused it for a few days. Over the weekend, she was again bribed into

> wearing it switched on (what a girl will do for a bit of nan bread!) and it

> has been pretty good since. She has worn it for nearly 12 hours today

> (although her deaf 1:1 aid bless her didn't realise that the flashing light

> meant her coil had come off so suspect she has not had it switched on most

> of the day!).

>

> The moral of this story is, if you want Amelie to be like , she will

> be just like her all the way, warts and all! Keep trying Les, it will

> happen as everyone else said.

>

> Oh and also has no semicircular canals and look at her go! The

> right ear has also always been a pain to get the moulds right. The canals

> are very narrow on both sides but there is just something about the shape of

> the right one. We have usually asked the techs to make the stem a little

> longer and this has done the trick and stopped the whistling, but we have

> kept having to remind them of this.

>

> You know that with the potential onset of our insanity due to hearing

> aids and cochlear implants, you are wished much luck. I am hoping that map

> 2 does not scare the tyke into refusing to wear them again.

>

> Good luck! Oh and I love that you are having a great week and no dilemmas.

> It's Yuka's " perfectly ordinary day " time.

>

> A knackered Flo (yes, girlie now has a sinus infection so still no sleep!)

>

>

>

> >

> > thanks folks

> >

> > Amelie is 95 DB deaf in bothway back age 6 months old, but this has

> > not been repeated since the gromits ,(well one gromit) the other is

> > missing in action somewhere in the middle ear area.

> >

> > The funny right ear with no lobe, is the worst and the CT scan

> > revealed badly fused bones, bones missing and no semicircular canals,

> > the ENT guy said the right ear is a mess internally, also the aid

> > doesnt stay in very well because the entrance seems very thin and

> > narrow, as opposed to the other,

> >

> > I will keep trying now i know this is the norm

> >

> > Also her secretions are really heavy when i put it in, and so this

> > distresses her and has a knock on with us, so we feel cruel making her

> > have it in!!

> >

> > cheers from chanettes UK having a great week, no real dilemmas even

> > the dysons working!!

> >

> >

>

>

>

[Guest guest]

Hi Flo and gang

I still want her to end up like , it was the bike thing that

did it for me, she was totally buzzing and filled with such zest for

life, when we were warned early on not to expect 'too much hope'!!,

mind you maybe not the sleep issues!!!!!!!!!!! I need my beauty sleep!!!!

great news about the implants, i cant wait for these, but i think we

are a long way off.

as for the naan bread a girl after my own heart, i too do almost

anything for food!!

take care i will persevere les and chanettes x

> Ah, Lesley, but the girl has spirit. That is worth all the grief. As the

> saying goes, be careful what you wish for as you may just get it. She is

> turning into . Now do you still want her to be just like the little

> girl on the tricycle in Manchester?

>

> As everyone else has said, persevere. It will probably drive you nuts but

> she most likely will accept them in the end. Funnily enough, was

> really passive about them at first, but then she was only 6 months old and I

> think the 7 hour open heart surgery had probably knocked the stuffing out of

> her. But hell, as she was approaching two, it became a battle to keep them

> on. I lost count of the numerous times we had to put them back over and

> over and over each day......... Then suddenly at some point, she just

> decided that they were hers and she would cry if anyone took them out. I

> don't think this was because they gave her much benefit. It's just that

> they were hers! How possessive can a girl get? Long story short, she then

> just accepted them, even after her hearing had deteriorated to the point

> where the aids were of no benefit and she used them right up to the point of

> implant.

>

> Then it all started again two weeks ago. After all the angst about to

> implant or not to implant, when she was switched on, she yanked the implant

> off and totally refused to wear it again. We eventually managed to bribe

> her into wearing it swithced off ( " if you don't wear the implant you are

> not coming shopping with me, you can stay here and be bored with daddy " ).

> Then she decided she really didn't like sound and despite the excitement of

> the CI team at first map, soon as she got home she yanked it off again and

> refused it for a few days. Over the weekend, she was again bribed into

> wearing it switched on (what a girl will do for a bit of nan bread!) and it

> has been pretty good since. She has worn it for nearly 12 hours today

> (although her deaf 1:1 aid bless her didn't realise that the flashing light

> meant her coil had come off so suspect she has not had it switched on most

> of the day!).

>

> The moral of this story is, if you want Amelie to be like , she will

> be just like her all the way, warts and all! Keep trying Les, it will

> happen as everyone else said.

>

> Oh and also has no semicircular canals and look at her go! The

> right ear has also always been a pain to get the moulds right. The canals

> are very narrow on both sides but there is just something about the shape of

> the right one. We have usually asked the techs to make the stem a little

> longer and this has done the trick and stopped the whistling, but we have

> kept having to remind them of this.

>

> You know that with the potential onset of our insanity due to hearing

> aids and cochlear implants, you are wished much luck. I am hoping that map

> 2 does not scare the tyke into refusing to wear them again.

>

> Good luck! Oh and I love that you are having a great week and no dilemmas.

> It's Yuka's " perfectly ordinary day " time.

>

> A knackered Flo (yes, girlie now has a sinus infection so still no sleep!)

>

>

>

> >

> > thanks folks

> >

> > Amelie is 95 DB deaf in bothway back age 6 months old, but this has

> > not been repeated since the gromits ,(well one gromit) the other is

> > missing in action somewhere in the middle ear area.

> >

> > The funny right ear with no lobe, is the worst and the CT scan

> > revealed badly fused bones, bones missing and no semicircular canals,

> > the ENT guy said the right ear is a mess internally, also the aid

> > doesnt stay in very well because the entrance seems very thin and

> > narrow, as opposed to the other,

> >

> > I will keep trying now i know this is the norm

> >

> > Also her secretions are really heavy when i put it in, and so this

> > distresses her and has a knock on with us, so we feel cruel making her

> > have it in!!

> >

> > cheers from chanettes UK having a great week, no real dilemmas even

> > the dysons working!!

> >

> >

>

>

>

[Guest guest]

Hi Flo and gang

I still want her to end up like , it was the bike thing that

did it for me, she was totally buzzing and filled with such zest for

life, when we were warned early on not to expect 'too much hope'!!,

mind you maybe not the sleep issues!!!!!!!!!!! I need my beauty sleep!!!!

great news about the implants, i cant wait for these, but i think we

are a long way off.

as for the naan bread a girl after my own heart, i too do almost

anything for food!!

take care i will persevere les and chanettes x

> Ah, Lesley, but the girl has spirit. That is worth all the grief. As the

> saying goes, be careful what you wish for as you may just get it. She is

> turning into . Now do you still want her to be just like the little

> girl on the tricycle in Manchester?

>

> As everyone else has said, persevere. It will probably drive you nuts but

> she most likely will accept them in the end. Funnily enough, was

> really passive about them at first, but then she was only 6 months old and I

> think the 7 hour open heart surgery had probably knocked the stuffing out of

> her. But hell, as she was approaching two, it became a battle to keep them

> on. I lost count of the numerous times we had to put them back over and

> over and over each day......... Then suddenly at some point, she just

> decided that they were hers and she would cry if anyone took them out. I

> don't think this was because they gave her much benefit. It's just that

> they were hers! How possessive can a girl get? Long story short, she then

> just accepted them, even after her hearing had deteriorated to the point

> where the aids were of no benefit and she used them right up to the point of

> implant.

>

> Then it all started again two weeks ago. After all the angst about to

> implant or not to implant, when she was switched on, she yanked the implant

> off and totally refused to wear it again. We eventually managed to bribe

> her into wearing it swithced off ( " if you don't wear the implant you are

> not coming shopping with me, you can stay here and be bored with daddy " ).

> Then she decided she really didn't like sound and despite the excitement of

> the CI team at first map, soon as she got home she yanked it off again and

> refused it for a few days. Over the weekend, she was again bribed into

> wearing it switched on (what a girl will do for a bit of nan bread!) and it

> has been pretty good since. She has worn it for nearly 12 hours today

> (although her deaf 1:1 aid bless her didn't realise that the flashing light

> meant her coil had come off so suspect she has not had it switched on most

> of the day!).

>

> The moral of this story is, if you want Amelie to be like , she will

> be just like her all the way, warts and all! Keep trying Les, it will

> happen as everyone else said.

>

> Oh and also has no semicircular canals and look at her go! The

> right ear has also always been a pain to get the moulds right. The canals

> are very narrow on both sides but there is just something about the shape of

> the right one. We have usually asked the techs to make the stem a little

> longer and this has done the trick and stopped the whistling, but we have

> kept having to remind them of this.

>

> You know that with the potential onset of our insanity due to hearing

> aids and cochlear implants, you are wished much luck. I am hoping that map

> 2 does not scare the tyke into refusing to wear them again.

>

> Good luck! Oh and I love that you are having a great week and no dilemmas.

> It's Yuka's " perfectly ordinary day " time.

>

> A knackered Flo (yes, girlie now has a sinus infection so still no sleep!)

>

>

>

> >

> > thanks folks

> >

> > Amelie is 95 DB deaf in bothway back age 6 months old, but this has

> > not been repeated since the gromits ,(well one gromit) the other is

> > missing in action somewhere in the middle ear area.

> >

> > The funny right ear with no lobe, is the worst and the CT scan

> > revealed badly fused bones, bones missing and no semicircular canals,

> > the ENT guy said the right ear is a mess internally, also the aid

> > doesnt stay in very well because the entrance seems very thin and

> > narrow, as opposed to the other,

> >

> > I will keep trying now i know this is the norm

> >

> > Also her secretions are really heavy when i put it in, and so this

> > distresses her and has a knock on with us, so we feel cruel making her

> > have it in!!

> >

> > cheers from chanettes UK having a great week, no real dilemmas even

> > the dysons working!!

> >

> >

>

>

>