I'm New!

[Guest guest]

In a message dated 9/10/2006 4:24:19 P.M. Eastern Standard Time,

lmatt514@... writes:

And theres nothin we can do to fix it.. no implants or hearing

aid can help... if anyone on this sight is in " my shoes " with similar

problem with their child please email me.

,

First, welcome to the list. And second, your daughter is going to be just

fine because you're already doing good things for her. And as far as I'm

concerned, joining a list like this means you want to do more, as much as you

can.

And because you're aware and involved, Keele is going to be great!

I'm Jill, mom to a D/HOH son, Ian, who is going to be 16 soon, and who is

eyeing my car keys with a devilish grin. Ian has a degenerative loss which is

currently in the moderate range. He wear bright blues aids in both ears, and

his molds are swirls of red-white-blue. His approach is that he needs aids, so

why hide them? His friends could care less and he's never been teased about

his aids. (He was teased about other things, like being short, or a girl

having a crush on him)

Ian is fully mainstreamed, that means he attends our local high school. He

has some supports in place that make it possible for him to do quite well. He

loves school, has a nice circle of friends, he's a boy scout, loves

photography, kayaking, hiking and bowling on Saturdays with his friends (when

they

have time). In short, he's a regular kid who happens to be losing his hearing.

I know so well what you mean when you mention being scared about what the

future will hold. When we first found out about Ian's hearing loss, I use to

stand in the doorway of his room, watching him sleep and cry. My husband didn't

know what to say and I'm sure there were times he thought I was losing my

mind. I didn't know how we were going to help this kid, and it scared the

daylights out of me. But with the help of some absolutely wonderful total

strangers, we figured it all out. And Ian is doing great.

This is a wonderful list with parents who empathize as well as knowing so

much! The collective knowledge here is amazing.

I have a question, how do they know that aids won't help Keele's " bad " ear?

(Ian use to have a good and bad ear, now they are about even) I'm curious,

not meaning to insult your doctors or their diagnosis. It's just that I've

heard several parents here talk about being told not to bother aiding the deaf

ear, only to find out that the child benefited from having that ear aided.

There is a 30-trail period for aids before you have to purchase them. Have

you tried an aid? Just curious.

Again, welcome!

Jill

[Guest guest]

In a message dated 9/10/2006 5:49:13 P.M. Eastern Standard Time,

JillcWood@... writes:

There is a 30-trail period for aids

OOPS that's 30-day-free-trial. Sorry!

[Guest guest]

My daughter Keele is 20 mo and was born with 80% hearing loss to the

® ear. The left ear is doing good but we go to the audiologist every

6 mo to monitor it. Ive been a nurse for 5 yrs.. work with disabled

children. I've always been the one for support for the parent and

listen to them grieve.. and now its me. Its hard when it happens to ure

child! And theres nothin we can do to fix it.. no implants or hearing

aid can help... if anyone on this sight is in " my shoes " with similar

problem with their child please email me. She has compensated so well.

She knows 25-30 words. Im just so scared of what the future bring adn

so forth.

[Guest guest]

Just adding in a bit of background here. Our Ian's loss began as a

unilateral loss, with his left ear being only a very mild loss (10-15 dbs) and

his

" bad " right ear being a 35 db loss. Our audiologist immediately recommended

aiding the right ear, which we did. Granted that's only a mild/moderate loss,

but

it was definitely causing him difficulties.

I'm curious as to their reasons for not even trying an aid, since it is

exactly the opposite of the advice we've been given.

Best -- Jill

[Guest guest]

- I welcomed you earlier - I'm so glad you're here!

I'm curious about not being able to help the bad ear also. I've heard

of other parents on this list who said the same, then received a second

opinion from another audiologist that ended up working for them. Like

Jill said, I'm not insulting your doctors/their diagnosis but our number

one concern is our kids. It might be helpful to seek a second opinion.

I know that we moved from a general audiologist in the beginning to a

pediatric audiologist and it made a huge difference. When my boys were

diagnosed (more than 10 years ago) I didn't realize there was such a thing.

Take care!

Barbara

JillcWood@... wrote:

>

> In a message dated 9/10/2006 4:24:19 P.M. Eastern Standard Time,

> lmatt514@... writes:

>

> And theres nothin we can do to fix it.. no implants or hearing

> aid can help... if anyone on this sight is in " my shoes " with similar

> problem with their child please email me.

>

>

>

> ,

>

>

> I have a question, how do they know that aids won't help Keele's " bad " ear?

> (Ian use to have a good and bad ear, now they are about even) I'm curious,

> not meaning to insult your doctors or their diagnosis. It's just that I've

> heard several parents here talk about being told not to bother aiding the

deaf

> ear, only to find out that the child benefited from having that ear aided.

> There is a 30-trail period for aids before you have to purchase them. Have

> you tried an aid? Just curious.

>

> Again, welcome!

> Jill

>

>

>

[Guest guest]

- I welcomed you earlier - I'm so glad you're here!

I'm curious about not being able to help the bad ear also. I've heard

of other parents on this list who said the same, then received a second

opinion from another audiologist that ended up working for them. Like

Jill said, I'm not insulting your doctors/their diagnosis but our number

one concern is our kids. It might be helpful to seek a second opinion.

I know that we moved from a general audiologist in the beginning to a

pediatric audiologist and it made a huge difference. When my boys were

diagnosed (more than 10 years ago) I didn't realize there was such a thing.

Take care!

Barbara

JillcWood@... wrote:

>

> In a message dated 9/10/2006 4:24:19 P.M. Eastern Standard Time,

> lmatt514@... writes:

>

> And theres nothin we can do to fix it.. no implants or hearing

> aid can help... if anyone on this sight is in " my shoes " with similar

> problem with their child please email me.

>

>

>

> ,

>

>

> I have a question, how do they know that aids won't help Keele's " bad " ear?

> (Ian use to have a good and bad ear, now they are about even) I'm curious,

> not meaning to insult your doctors or their diagnosis. It's just that I've

> heard several parents here talk about being told not to bother aiding the

deaf

> ear, only to find out that the child benefited from having that ear aided.

> There is a 30-trail period for aids before you have to purchase them. Have

> you tried an aid? Just curious.

>

> Again, welcome!

> Jill

>

>

>

[Guest guest]

Hi, welcome to the list. My daughter Clara is almost 4 now, and has a

severe/profound loss in her left ear. Her right ear is nearly normal.

I have the same loss myself. I'm glad you are getting her tested

every 6 months to monitor her good ear. It sounds like she is doing

great and is learning language. Kids with a unilateral loss usually

learn to speak with no problems. Clara was a late talker, but we

think that was due to fluid blocking her only good ear. She speaks

very well now.

I don't know if your daughter would be a candidate, but there is a new

device called a TransEar, which is made specifically for people with a

unilateral loss. I am hoping to get one for Clara, but she has tubes

in her ears now, and the left one has to come out before she gets the

transEar. Here is the link for the Transear website. Maybe you can

ask her audiologist about it. http://www.transear.com/ I had to talk

to 3 audiologists before I found one who knew anything about it. It's

pretty new.

The main difficulty is hearing in noisy situations, and the inability

to locate sounds. Her teachers at preschool know that they can't talk

to her from across the room and expect her to hear and understand. I

am considering an FM system as a possibility. I have heard very good

things about them, but more at the Kindergarten/grade-school level. I

don't know how common it is in pre-schools, and it would help her hear

the teacher, but not the other kids.

I am mainly concerned with social issues. My daughter is the

unassertive type and really has to be coaxed to participate in social

situations. It's harder for any hearing impaired child to learn

social skills because there are so many things that kids pick up just

by overhearing, rather than a parent or teacher's direct teaching. I

am concerned about my daughter's future, but I know from having the

same loss myself that it is possible to succeed and have a good life.

It's not always easy, but life never is.

I hope this helps. Take care,

Cheryl

>

> My daughter Keele is 20 mo and was born with 80% hearing loss to the

> ® ear. The left ear is doing good but we go to the audiologist every

> 6 mo to monitor it. Ive been a nurse for 5 yrs.. work with disabled

> children. I've always been the one for support for the parent and

> listen to them grieve.. and now its me. Its hard when it happens to ure

> child! And theres nothin we can do to fix it.. no implants or hearing

> aid can help... if anyone on this sight is in " my shoes " with similar

> problem with their child please email me. She has compensated so well.

> She knows 25-30 words. Im just so scared of what the future bring adn

> so forth.

>

[Guest guest]

I have always been told my loss is unaidable, the same for Clara.

Hearing aids can amplify sound loud enough to be picked up by whatever

hearing I have in my left ear, but the resulting sound would be so

distorted, it would not be useful. Keele has an 80% loss. I'm not

sure what that is, Clara's or my own hearing loss has never been

described to me that way.

>

> Just adding in a bit of background here. Our Ian's loss began as a

> unilateral loss, with his left ear being only a very mild loss

(10-15 dbs) and his

> " bad " right ear being a 35 db loss. Our audiologist immediately

recommended

> aiding the right ear, which we did. Granted that's only a

mild/moderate loss, but

> it was definitely causing him difficulties.

>

> I'm curious as to their reasons for not even trying an aid, since it

is

> exactly the opposite of the advice we've been given.

>

> Best -- Jill

>

>

>

>

>

[Guest guest]

wrote:

My daughter Keele is 20 mo and was born with 80% hearing loss to the

® ear. The left ear is doing good but we go to the audiologist every

6 mo to monitor it. Ive been a nurse for 5 yrs.. work with disabled

children. I've always been the one for support for the parent and

listen to them grieve.. and now its me. Its hard when it happens to ure

child! And theres nothin we can do to fix it.. no implants or hearing

aid can help... if anyone on this sight is in " my shoes " with similar

problem with their child please email me. She has compensated so well.

She knows 25-30 words. Im just so scared of what the future bring adn

so forth.

**

Hello, !

Welcome to the group! My name is Kris, and I have two boys - , who is

8 and has a Profound/Complete Sensoneural Loss in his Left Ear, and Ethan,

who is 7 and has no hearing issues.

I understand how you're feeling. Having a doctor tell you that a) there's

something " wrong " with your child and that there's nothing you can really

do to fix it, is beyond frustrating. As a parent, your first instinct is to

address whatever is wrong and make it all better - and sometimes it's hard

to realize that it's just not that easy.

As Cheryl said earlier, we found that the TransEar is a wonderful (and new -

only available since 2005) option for unilateral loss. is currently

the youngest person in the USA to wear one, and it's really made a

difference for him in the 30 days that he's had it. He also has used a

wireless FM system in school (we're working to see if he can use the FM and

his TransEar at the same time without overloading his " good " ear), and the

kids never teased him. If anything, one thought was getting away with

wearing an iPod, and a bunch of others thought it was really cool that

could hear things that the teacher was saying from across the room without

anyone else hearing it (she'll turn the mike on to give him redirection and

turn it off again without the other kids knowing that she's done it).

Hang in there - you've found a great group of people to learn from (and vent

to!).

Hugs to you,

Kris

Mom to (8, Profound/Complete SNL, Left Ear) and Ethan (7, hearing)

[Guest guest]

A BAHA is another option. At 20 months she won't be able to have it

surgically implanted, but she could wear it on a headband until she is 5.

www.entific.com

I think both the Trans Ear and the BAHA work by rerouting sound from the HI

to the functioning cochlear nerve, there is little if any amplification

involved so you don't get a ton of blowout or feedback from putting so much

gain through such a small device.

Sheri

[Guest guest]

Sheri wrote:

A BAHA is another option. At 20 months she won't be able to have it

surgically implanted, but she could wear it on a headband until she is 5.

www.entific.com

I think both the Trans Ear and the BAHA work by rerouting sound from the HI

to the functioning cochlear nerve, there is little if any amplification

involved so you don't get a ton of blowout or feedback from putting so much

gain through such a small device.

**

Sheri is right - the TransEar and BAHA use the same methodology to get sound

from point A (the bad ear) to point B (the good ear). They both receive the

sound waves from the bad side and then use different methods of oscillation

to carry the sound waves to the skull bones to be " carried " to the good ear.

If anything, it's like pure sound being carried into the ear. When I hold

's TransEar in my hand to test it for battery strength, I feel the ear

mold vibrate in my hand as the BTE unit picks up the ambient sound. If I

hold it up next to my ear, I don't hear anything - but if I get the mold to

touch my bony structure behind my ear, I can actually get some idea of what

it's like for to use it.

We've taken to explaining it as " two cans and a string " . The TransEar is

the first can, his skull bones are the string, and his good ear is the

second can!

Kris

Mom to (8, Profound/Complete SNL, Left Ear) and Ethan (7, hearing)

[Guest guest]

>

>

> In a message dated 9/10/2006 4:24:19 P.M. Eastern Standard Time,

> lmatt514@... writes:

>

> And theres nothin we can do to fix it.. no implants or hearing

> aid can help... if anyone on this sight is in " my shoes " with

similar

> problem with their child please email me.

>

>

>

> ,

>

> First, welcome to the list. And second, your daughter is going to

be just

> fine because you're already doing good things for her. And as far

as I'm

> concerned, joining a list like this means you want to do more, as

much as you can.

> And because you're aware and involved, Keele is going to be great!

>

> I'm Jill, mom to a D/HOH son, Ian, who is going to be 16 soon, and

who is

> eyeing my car keys with a devilish grin. Ian has a degenerative

loss which is

> currently in the moderate range. He wear bright blues aids in both

ears, and

> his molds are swirls of red-white-blue. His approach is that he

needs aids, so

> why hide them? His friends could care less and he's never been

teased about

> his aids. (He was teased about other things, like being short, or

a girl

> having a crush on him)

>

> Ian is fully mainstreamed, that means he attends our local high

school. He

> has some supports in place that make it possible for him to do

quite well. He

> loves school, has a nice circle of friends, he's a boy scout,

loves

> photography, kayaking, hiking and bowling on Saturdays with his

friends (when they

> have time). In short, he's a regular kid who happens to be losing

his hearing.

>

> I know so well what you mean when you mention being scared about

what the

> future will hold. When we first found out about Ian's hearing loss,

I use to

> stand in the doorway of his room, watching him sleep and cry. My

husband didn't

> know what to say and I'm sure there were times he thought I was

losing my

> mind. I didn't know how we were going to help this kid, and it

scared the

> daylights out of me. But with the help of some absolutely

wonderful total

> strangers, we figured it all out. And Ian is doing great.

>

> This is a wonderful list with parents who empathize as well as

knowing so

> much! The collective knowledge here is amazing.

>

> I have a question, how do they know that aids won't help

Keele's " bad " ear?

> (Ian use to have a good and bad ear, now they are about even) I'm

curious,

> not meaning to insult your doctors or their diagnosis. It's just

that I've

> heard several parents here talk about being told not to bother

aiding the deaf

> ear, only to find out that the child benefited from having that

ear aided.

> There is a 30-trail period for aids before you have to purchase

them. Have

> you tried an aid? Just curious.

>

> Again, welcome!

> Jill

>

>

>

[Guest guest]

> >

> > In a message dated 9/10/2006 4:24:19 P.M. Eastern Standard Time,

> > lmatt514@... writes:

> >

> > And theres nothin we can do to fix it.. no implants or hearing

> > aid can help... if anyone on this sight is in " my shoes " with

similar

> > problem with their child please email me.

> >

> >

> >

> > ,

> >

> >

> > I have a question, how do they know that aids won't help

Keele's " bad " ear?

> > (Ian use to have a good and bad ear, now they are about even)

I'm curious,

> > not meaning to insult your doctors or their diagnosis. It's just

that I've

> > heard several parents here talk about being told not to bother

aiding the deaf

> > ear, only to find out that the child benefited from having that

ear aided.

> > There is a 30-trail period for aids before you have to purchase

them. Have

> > you tried an aid? Just curious.

> >

> > Again, welcome!

> > Jill

> >

> >

> >

>

Yes~ i sounded just like you 2! LOL.. I was like " Well I dont

understand! Theres nothin to help her???!!?! " But after many appt and

research! i found out that there's nothin there to magnify and it

would just throw the good ear off! So really so far so good. She has

compensated so well. Walked at 10mon. and at 20 mo is saying 25-30

word vocabulary. And she mimics all of us around her and TV shows.

Just yesterday she did the cutest thing. I was in my room and she was

in the compter room with my sister and she was feeding the cats all

on her own! She moved the bowl to the cat who was under the coffee

table.. LOL.. So I yelled for her fromm my room " Keele! " and she

said " Coming! " I hought I was gonna cry! But theres times where I

know she cant hear me and Im saying her name louder and louder! those

times are hard! Thankx again!

[Guest guest]

is 4 and already has his truck picked out and a savings account

that will be ready to pay for it...He wants a Ford F-350 Crew Cab with

Duallies...and a dump body so he can deliver firewood like Daddy and

I...and transport his 4 wheeler to go work at a horse farm...(he's

already been offered a job feeding a barn full of Percheron pulling

horses as soon as he's tall enough to reach their heads...maybe bnyt he

time hes 8 or 9...he's 4 and just under 4' tall...

the horses don't care that he has hearing aids...

he currently feeds calves and helps clean the milking

parlor...and helps Daddy with firewood---carrying the logs over to the

splitter and helping puch them onto the splitter...he also goes in the

fields and flips over the bales of hay so Daddy can pick them up with

the crazy truck..

I think it's great that is HOH--I think God chose him to be HOH

like his great grandfather b/c he's smart enough to handle it, we don't

let him slow him down whatsoever, he's a tough kid...and now that he

goes to the other school he has more friends...He's actually great with

autistic kids in his program and has helped a few of them overcome some

adjustments, by constantly inviting them to play and keeeping them

engaged....and he knows what he doing b/c he almost is always drawn to

pick out the most withdrawn kid. God put him in that school for a

reason...yea,he gets his speech there and basic pre-k skills...but he's

there to help them.

He loves his HAs and his FM system...and thinks its great...

last weekend at the supermarket said people are looking at me...and

I said, of course they're looking at you b/c your cute...he said no

mommy, they are looking at you because you're cute (choot)...I'm just in

the cart (cark)...so they look at me next...

________________________________

From: Listen-Up [mailto:Listen-Up ] On

Behalf Of keelesmiiheart

Sent: Wednesday, September 13, 2006 1:30 PM

To: Listen-Up

Subject: Re: I'm New!

>

>

> In a message dated 9/10/2006 4:24:19 P.M. Eastern Standard Time,

> lmatt514@... writes:

>

> And theres nothin we can do to fix it.. no implants or hearing

> aid can help... if anyone on this sight is in " my shoes " with

similar

> problem with their child please email me.

>

>

>

> ,

>

> First, welcome to the list. And second, your daughter is going to

be just

> fine because you're already doing good things for her. And as far

as I'm

> concerned, joining a list like this means you want to do more, as

much as you can.

> And because you're aware and involved, Keele is going to be great!

>

> I'm Jill, mom to a D/HOH son, Ian, who is going to be 16 soon, and

who is

> eyeing my car keys with a devilish grin. Ian has a degenerative

loss which is

> currently in the moderate range. He wear bright blues aids in both

ears, and

> his molds are swirls of red-white-blue. His approach is that he

needs aids, so

> why hide them? His friends could care less and he's never been

teased about

> his aids. (He was teased about other things, like being short, or

a girl

> having a crush on him)

>

> Ian is fully mainstreamed, that means he attends our local high

school. He

> has some supports in place that make it possible for him to do

quite well. He

> loves school, has a nice circle of friends, he's a boy scout,

loves

> photography, kayaking, hiking and bowling on Saturdays with his

friends (when they

> have time). In short, he's a regular kid who happens to be losing

his hearing.

>

> I know so well what you mean when you mention being scared about

what the

> future will hold. When we first found out about Ian's hearing loss,

I use to

> stand in the doorway of his room, watching him sleep and cry. My

husband didn't

> know what to say and I'm sure there were times he thought I was

losing my

> mind. I didn't know how we were going to help this kid, and it

scared the

> daylights out of me. But with the help of some absolutely

wonderful total

> strangers, we figured it all out. And Ian is doing great.

>

> This is a wonderful list with parents who empathize as well as

knowing so

> much! The collective knowledge here is amazing.

>

> I have a question, how do they know that aids won't help

Keele's " bad " ear?

> (Ian use to have a good and bad ear, now they are about even) I'm

curious,

> not meaning to insult your doctors or their diagnosis. It's just

that I've

> heard several parents here talk about being told not to bother

aiding the deaf

> ear, only to find out that the child benefited from having that

ear aided.

> There is a 30-trail period for aids before you have to purchase

them. Have

> you tried an aid? Just curious.

>

> Again, welcome!

> Jill

>

>

>