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Re: Introduction (I'm new)

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Posted
Posted

--- wrote:

The thing to know is the newborn screaning tests are usually just an OAE and

sometimes depending on the type of loss even a profound loss doesn't show up on

those, it's really misleading in some cases, just because they pass doesn't

mean the child is fine.

--- end of quote ---

At least in NH, most hospitals here do a screening ABR and not an OAE so it

differs from place to place....

Barbara

*******************************

Barbara Mellert

Manager, Social Science Computing

Kiewit Computing Services

Dartmouth College

13A Silsby Hall; HB 6121

Hanover NH 03755

Telephone: 603/646-2877

URL: http://www.dartmouth.edu/~ssc

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Posted
Posted

--- wrote:

The thing to know is the newborn screaning tests are usually just an OAE and

sometimes depending on the type of loss even a profound loss doesn't show up on

those, it's really misleading in some cases, just because they pass doesn't

mean the child is fine.

--- end of quote ---

At least in NH, most hospitals here do a screening ABR and not an OAE so it

differs from place to place....

Barbara

*******************************

Barbara Mellert

Manager, Social Science Computing

Kiewit Computing Services

Dartmouth College

13A Silsby Hall; HB 6121

Hanover NH 03755

Telephone: 603/646-2877

URL: http://www.dartmouth.edu/~ssc

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Posted
Posted

--- wrote:

The thing to know is the newborn screaning tests are usually just an OAE and

sometimes depending on the type of loss even a profound loss doesn't show up on

those, it's really misleading in some cases, just because they pass doesn't

mean the child is fine.

--- end of quote ---

At least in NH, most hospitals here do a screening ABR and not an OAE so it

differs from place to place....

Barbara

*******************************

Barbara Mellert

Manager, Social Science Computing

Kiewit Computing Services

Dartmouth College

13A Silsby Hall; HB 6121

Hanover NH 03755

Telephone: 603/646-2877

URL: http://www.dartmouth.edu/~ssc

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Posted
Posted

Hi Sara and welcome to the list. You've found a wonderful spot for information

as well as just somewhere to voice your concerns. The other parents are more

knowledgeable than I am, but a site I've found helpful is

www.agbell.org<http://www.agbell.org/> . I know they have financial aid info on

there. The listen up website has a lot of great information as well. Best of

luck to you.

een

Mom to 10 (hearing) & Ian 6 LVAS, asthma and kidney problems.

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Posted
Posted

Hi Sara and welcome to the list. You've found a wonderful spot for information

as well as just somewhere to voice your concerns. The other parents are more

knowledgeable than I am, but a site I've found helpful is

www.agbell.org<http://www.agbell.org/> . I know they have financial aid info on

there. The listen up website has a lot of great information as well. Best of

luck to you.

een

Mom to 10 (hearing) & Ian 6 LVAS, asthma and kidney problems.

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Posted

Welcome Sara. Check into your states Children's Rehabilitation Services

program. Your state should have a program that will help you pay for

equipment & possibly any other services needed to get her up to speed.

Then after your child reaches school age you will probably be best

going through the public school system for services. I know here in AL

CRS is paying for my son Ian's hearing aids and molds until he reaches

21; they also are covering AV therapy. (Based on your income you may

have deductibles)

Tillery

Birmingham, AL

Ian 3.8 yrs (Moderate/Severe_Aided)

Emma 8 (Hearing)

On Wednesday, April 7, 2004, at 08:16 AM, sara christopher wrote:

>

> Date: Wed Apr 7, 2004 8:16:34 AM US/Central

> To: Listen-Up

> Subject: Introduction (I'm new)

> Reply-To: Listen-Up

>

>

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Posted
Posted

Welcome Sara. Check into your states Children's Rehabilitation Services

program. Your state should have a program that will help you pay for

equipment & possibly any other services needed to get her up to speed.

Then after your child reaches school age you will probably be best

going through the public school system for services. I know here in AL

CRS is paying for my son Ian's hearing aids and molds until he reaches

21; they also are covering AV therapy. (Based on your income you may

have deductibles)

Tillery

Birmingham, AL

Ian 3.8 yrs (Moderate/Severe_Aided)

Emma 8 (Hearing)

On Wednesday, April 7, 2004, at 08:16 AM, sara christopher wrote:

>

> Date: Wed Apr 7, 2004 8:16:34 AM US/Central

> To: Listen-Up

> Subject: Introduction (I'm new)

> Reply-To: Listen-Up

>

>

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Posted
Posted

Sara,

The thing to know is the newborn screaning tests are usually just an OAE and

sometimes depending on the type of loss even a profound loss doesn't show up on

those, it's really misleading in some cases, just because they pass doesn't mean

the child is fine.

As far as the difference between hearing impairment, and deaf, hearing

impairment is any impairment in hearing as well as clearity of sound and that

sort of thing. there are two types of deaf, there is exactly that deaf, which

means that there is a profound hearing loss and the child hears nothing to next

to nothing, Deaf with a " D " is culturally deaf, someone who uses sign (whether

they can talk also or not doesn't matter) and is involved in the Deaf community.

Someone with a mild hearing loss can be Deaf. There is another term you will

see which is Hard of Hearing or HOH. This is basically someone with a mild loss

or someone with a more severe loss who with hearing aids is able to live as a

hearing person with slight difficulty.

There are many different communication methods out there. The first thing to do

is research them. I assume the audi or ENT will want to fit her with hearing

aids and when that happens you will be able to better see how well she hears and

understands. There is one very important thing to realize and that is that even

if a person can hear a noise it doesn't mean they understood it. There is a

certain amount of distortion there. Different people do better than others with

hearing aids.

There is sign only, Total communication which is sign and speach combined, even

if you are the only one speaking (and signing) and your daughter only signs,

cued speach, auditory verbal or aural oral. When a child signs and speaks that

is considered what is called bilingual bicultural, because they speak two

different languages whether it be English sign or ASL, as well as belong to the

Deaf community, and they also speek and belong to the hearing culture.

I hope this helps a little. I'm sure you will have many questions and feel free

to ask away.

Introduction (I'm new)

Hi everyone,

My name is Sara and I'm new here. We have been in the process (seems like

it's taking forever) of finding out that our 18 month old daughter is

hearing impaired. I'm not sure what the difference is between deaf and

hearing impaired. I always thought that deaf was completely unable to hear.

IF that is the case, she is only hearing impaired.

I believe that Tessa has be hearing impaired since birth, though she passed

her newborn hearing screening. The first time she failed on one ear, but we

took her back and she passed. However, I noticed that she never startled to

loud sounds, etc. Everytime I mentioned it to the ped., they just brushed

me off as an overprotective parent.

After we moved here (about an hr. from Washington D.C.), we started

pursueing it further. Unfortunately, we were in the midst of a traumatic

time in our own lives, losing a baby to a fatal birth defect, that it was

hard to get Tessa the care she needed. She was 11 months old. Finally at

14 months, we got her an audiological hearing test. They determined that

she probably had fluid in her ears that was impeding her hearing, so we took

her to an ENT who clarified that yes she did have fluid, so she got tubes

put in her ears at the beginning of February. This helped her walking

tremendously, but she still wasn't responding to our voices or loud noises.

So, we took her back to the ENT for another audiological test. This

audiologist confirmed that she was not hearing well at all. We got one

possible response on the highest frequency at the loudest decibel

level...and it wasn't even truly a positive response. So, we were told to

schedule an ABR at Washington National Children's Hospital. It was

scheduled for April 21st, but my aunt managed to get it moved up because she

was leaving for Europe for a year. So, Tessa had her ABR last Wednesday.

Of course, they gave us no information at the time and we had to sit ansy

for info for almost a week. I had them fax over the info on Monday to the

ENT. The nurse told me Monday night that Tessa has moderately severe

hearing loss in her left ear and profound hearing loss in her right ear. We

have an appt tomorrow to discuss this with the ENT. I'm not sure what

tomorrow's appt. entails, but I'm so anxious for it. I don't know if

they'll be able to tell us what caused her hearing loss or not.

Tessa is the sweetest child. It upsets me to know that she can't hear like

I can or her daddy can, but I know she will work through it and be even

stronger for it. I just have such a hard time imagining it.

I have been researching and researching for a week or so now on all the

different methods. She will be eligible for a preschool in September, I

believe. I'm not sure what option we will take. I spoke with someone about

possible cochlear implants, and she said it sounded like Tessa could be a

candidate, but we still aren't sure about that yet. She knows a few signs,

but not many.

Anyone know how to deal with insurance? I have been calling the insurance

and asking them various questions. They never know anything, except that

they won't pay for hearing aids, even for a child who was born with hearing

loss. I don't understand it and it infuriates me. They told me that had it

been the result of an accident, they would pay for them, but they won't

because she was born this way. So, I think we need some information about

possible programs that could help us pay for her hearing aids. I know we

certiainly don't have the money right now. Also, no one at the insurance

could tell me whether they would pay for cochlear implants. They said we

have to go through the preauthorization before they could tell us. So, we

have to go through all this work for them to possibly say no. I gave them

the name of a dr. who does cochlear implants in our area, but they don't

cover her, so I asked if they could give me a dr who they do cover, but they

couldn't. They asked the specialty. I said Audiology so they offered to

give the names of audiologists. Hello, not all of them do it!! I'm so

frustrated with them. Anyways, anyone got any tips for working with

insurance? They are really difficult!!!

Well, thanks for reading my ranting and raving and my story about our

precious daughter. She is so beautiful and love her so incredibly much. I

want the best life that she can have and we're still trying to decide what

the best way to do that is.

Thanks,

Sara

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Posted
Posted

Sara,

The thing to know is the newborn screaning tests are usually just an OAE and

sometimes depending on the type of loss even a profound loss doesn't show up on

those, it's really misleading in some cases, just because they pass doesn't mean

the child is fine.

As far as the difference between hearing impairment, and deaf, hearing

impairment is any impairment in hearing as well as clearity of sound and that

sort of thing. there are two types of deaf, there is exactly that deaf, which

means that there is a profound hearing loss and the child hears nothing to next

to nothing, Deaf with a " D " is culturally deaf, someone who uses sign (whether

they can talk also or not doesn't matter) and is involved in the Deaf community.

Someone with a mild hearing loss can be Deaf. There is another term you will

see which is Hard of Hearing or HOH. This is basically someone with a mild loss

or someone with a more severe loss who with hearing aids is able to live as a

hearing person with slight difficulty.

There are many different communication methods out there. The first thing to do

is research them. I assume the audi or ENT will want to fit her with hearing

aids and when that happens you will be able to better see how well she hears and

understands. There is one very important thing to realize and that is that even

if a person can hear a noise it doesn't mean they understood it. There is a

certain amount of distortion there. Different people do better than others with

hearing aids.

There is sign only, Total communication which is sign and speach combined, even

if you are the only one speaking (and signing) and your daughter only signs,

cued speach, auditory verbal or aural oral. When a child signs and speaks that

is considered what is called bilingual bicultural, because they speak two

different languages whether it be English sign or ASL, as well as belong to the

Deaf community, and they also speek and belong to the hearing culture.

I hope this helps a little. I'm sure you will have many questions and feel free

to ask away.

Introduction (I'm new)

Hi everyone,

My name is Sara and I'm new here. We have been in the process (seems like

it's taking forever) of finding out that our 18 month old daughter is

hearing impaired. I'm not sure what the difference is between deaf and

hearing impaired. I always thought that deaf was completely unable to hear.

IF that is the case, she is only hearing impaired.

I believe that Tessa has be hearing impaired since birth, though she passed

her newborn hearing screening. The first time she failed on one ear, but we

took her back and she passed. However, I noticed that she never startled to

loud sounds, etc. Everytime I mentioned it to the ped., they just brushed

me off as an overprotective parent.

After we moved here (about an hr. from Washington D.C.), we started

pursueing it further. Unfortunately, we were in the midst of a traumatic

time in our own lives, losing a baby to a fatal birth defect, that it was

hard to get Tessa the care she needed. She was 11 months old. Finally at

14 months, we got her an audiological hearing test. They determined that

she probably had fluid in her ears that was impeding her hearing, so we took

her to an ENT who clarified that yes she did have fluid, so she got tubes

put in her ears at the beginning of February. This helped her walking

tremendously, but she still wasn't responding to our voices or loud noises.

So, we took her back to the ENT for another audiological test. This

audiologist confirmed that she was not hearing well at all. We got one

possible response on the highest frequency at the loudest decibel

level...and it wasn't even truly a positive response. So, we were told to

schedule an ABR at Washington National Children's Hospital. It was

scheduled for April 21st, but my aunt managed to get it moved up because she

was leaving for Europe for a year. So, Tessa had her ABR last Wednesday.

Of course, they gave us no information at the time and we had to sit ansy

for info for almost a week. I had them fax over the info on Monday to the

ENT. The nurse told me Monday night that Tessa has moderately severe

hearing loss in her left ear and profound hearing loss in her right ear. We

have an appt tomorrow to discuss this with the ENT. I'm not sure what

tomorrow's appt. entails, but I'm so anxious for it. I don't know if

they'll be able to tell us what caused her hearing loss or not.

Tessa is the sweetest child. It upsets me to know that she can't hear like

I can or her daddy can, but I know she will work through it and be even

stronger for it. I just have such a hard time imagining it.

I have been researching and researching for a week or so now on all the

different methods. She will be eligible for a preschool in September, I

believe. I'm not sure what option we will take. I spoke with someone about

possible cochlear implants, and she said it sounded like Tessa could be a

candidate, but we still aren't sure about that yet. She knows a few signs,

but not many.

Anyone know how to deal with insurance? I have been calling the insurance

and asking them various questions. They never know anything, except that

they won't pay for hearing aids, even for a child who was born with hearing

loss. I don't understand it and it infuriates me. They told me that had it

been the result of an accident, they would pay for them, but they won't

because she was born this way. So, I think we need some information about

possible programs that could help us pay for her hearing aids. I know we

certiainly don't have the money right now. Also, no one at the insurance

could tell me whether they would pay for cochlear implants. They said we

have to go through the preauthorization before they could tell us. So, we

have to go through all this work for them to possibly say no. I gave them

the name of a dr. who does cochlear implants in our area, but they don't

cover her, so I asked if they could give me a dr who they do cover, but they

couldn't. They asked the specialty. I said Audiology so they offered to

give the names of audiologists. Hello, not all of them do it!! I'm so

frustrated with them. Anyways, anyone got any tips for working with

insurance? They are really difficult!!!

Well, thanks for reading my ranting and raving and my story about our

precious daughter. She is so beautiful and love her so incredibly much. I

want the best life that she can have and we're still trying to decide what

the best way to do that is.

Thanks,

Sara

_________________________________________________________________

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Posted
Posted

Sara,

The thing to know is the newborn screaning tests are usually just an OAE and

sometimes depending on the type of loss even a profound loss doesn't show up on

those, it's really misleading in some cases, just because they pass doesn't mean

the child is fine.

As far as the difference between hearing impairment, and deaf, hearing

impairment is any impairment in hearing as well as clearity of sound and that

sort of thing. there are two types of deaf, there is exactly that deaf, which

means that there is a profound hearing loss and the child hears nothing to next

to nothing, Deaf with a " D " is culturally deaf, someone who uses sign (whether

they can talk also or not doesn't matter) and is involved in the Deaf community.

Someone with a mild hearing loss can be Deaf. There is another term you will

see which is Hard of Hearing or HOH. This is basically someone with a mild loss

or someone with a more severe loss who with hearing aids is able to live as a

hearing person with slight difficulty.

There are many different communication methods out there. The first thing to do

is research them. I assume the audi or ENT will want to fit her with hearing

aids and when that happens you will be able to better see how well she hears and

understands. There is one very important thing to realize and that is that even

if a person can hear a noise it doesn't mean they understood it. There is a

certain amount of distortion there. Different people do better than others with

hearing aids.

There is sign only, Total communication which is sign and speach combined, even

if you are the only one speaking (and signing) and your daughter only signs,

cued speach, auditory verbal or aural oral. When a child signs and speaks that

is considered what is called bilingual bicultural, because they speak two

different languages whether it be English sign or ASL, as well as belong to the

Deaf community, and they also speek and belong to the hearing culture.

I hope this helps a little. I'm sure you will have many questions and feel free

to ask away.

Introduction (I'm new)

Hi everyone,

My name is Sara and I'm new here. We have been in the process (seems like

it's taking forever) of finding out that our 18 month old daughter is

hearing impaired. I'm not sure what the difference is between deaf and

hearing impaired. I always thought that deaf was completely unable to hear.

IF that is the case, she is only hearing impaired.

I believe that Tessa has be hearing impaired since birth, though she passed

her newborn hearing screening. The first time she failed on one ear, but we

took her back and she passed. However, I noticed that she never startled to

loud sounds, etc. Everytime I mentioned it to the ped., they just brushed

me off as an overprotective parent.

After we moved here (about an hr. from Washington D.C.), we started

pursueing it further. Unfortunately, we were in the midst of a traumatic

time in our own lives, losing a baby to a fatal birth defect, that it was

hard to get Tessa the care she needed. She was 11 months old. Finally at

14 months, we got her an audiological hearing test. They determined that

she probably had fluid in her ears that was impeding her hearing, so we took

her to an ENT who clarified that yes she did have fluid, so she got tubes

put in her ears at the beginning of February. This helped her walking

tremendously, but she still wasn't responding to our voices or loud noises.

So, we took her back to the ENT for another audiological test. This

audiologist confirmed that she was not hearing well at all. We got one

possible response on the highest frequency at the loudest decibel

level...and it wasn't even truly a positive response. So, we were told to

schedule an ABR at Washington National Children's Hospital. It was

scheduled for April 21st, but my aunt managed to get it moved up because she

was leaving for Europe for a year. So, Tessa had her ABR last Wednesday.

Of course, they gave us no information at the time and we had to sit ansy

for info for almost a week. I had them fax over the info on Monday to the

ENT. The nurse told me Monday night that Tessa has moderately severe

hearing loss in her left ear and profound hearing loss in her right ear. We

have an appt tomorrow to discuss this with the ENT. I'm not sure what

tomorrow's appt. entails, but I'm so anxious for it. I don't know if

they'll be able to tell us what caused her hearing loss or not.

Tessa is the sweetest child. It upsets me to know that she can't hear like

I can or her daddy can, but I know she will work through it and be even

stronger for it. I just have such a hard time imagining it.

I have been researching and researching for a week or so now on all the

different methods. She will be eligible for a preschool in September, I

believe. I'm not sure what option we will take. I spoke with someone about

possible cochlear implants, and she said it sounded like Tessa could be a

candidate, but we still aren't sure about that yet. She knows a few signs,

but not many.

Anyone know how to deal with insurance? I have been calling the insurance

and asking them various questions. They never know anything, except that

they won't pay for hearing aids, even for a child who was born with hearing

loss. I don't understand it and it infuriates me. They told me that had it

been the result of an accident, they would pay for them, but they won't

because she was born this way. So, I think we need some information about

possible programs that could help us pay for her hearing aids. I know we

certiainly don't have the money right now. Also, no one at the insurance

could tell me whether they would pay for cochlear implants. They said we

have to go through the preauthorization before they could tell us. So, we

have to go through all this work for them to possibly say no. I gave them

the name of a dr. who does cochlear implants in our area, but they don't

cover her, so I asked if they could give me a dr who they do cover, but they

couldn't. They asked the specialty. I said Audiology so they offered to

give the names of audiologists. Hello, not all of them do it!! I'm so

frustrated with them. Anyways, anyone got any tips for working with

insurance? They are really difficult!!!

Well, thanks for reading my ranting and raving and my story about our

precious daughter. She is so beautiful and love her so incredibly much. I

want the best life that she can have and we're still trying to decide what

the best way to do that is.

Thanks,

Sara

_________________________________________________________________

Free up your inbox with MSN Hotmail Extra Storage! Multiple plans available.

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Posted

Hi Barb - I couldn't agree with you more. My older son would be described as

hard of hearing - he has a a sloping severe loss. He has moderate hearing in

the lower ranges but slopes down to profound in higher frequencies. Like your

daughter, he gets nothing without his hearing aids, has a hard time with the

telephone (even with his telecoils), and we caption the television because the

TV is hard for him to understand, even with hearing aids. His hearing loss

absolutely affects him and while he does live more or less as a hearing person,

it's because of tons of work, good amplication and excellent people working

with him.

I think we need to be very careful making blanket statements such as the first

quoted sentence below - particularly to a new person - without knowing all the

facts.

Barbara

--- You wrote:

> wrote first - This is basically someone with a mild loss or someone

with a more severe loss who with hearing aids is able to live as a hearing

person with slight difficulty.

Then Barb wrote -- My daughter is hard of hearing, and that is not how I would

describe it. She has more than " slight " difficulty with many things that are

no big deal at all to a hearing person.

She has a moderate-severe cookie bite loss. Without her aids she doesn't hear

a whole lot. She can't hear the phone ring unless she's right next to it, and

she can't really understand speech at all unless it's loud and something she's

used to hearing. Actually, she can understand " I love you, " even in a very

quiet voice, because she hears enough of the vowel sounds to recognize it.

She has a hard time using the telephone. Even with the t-coil, she doesn't

understand women well on the phone. She'll talk to her dad, and one grandma

(with a fairly deep voice), but not the other grandma. She'll rarely speak to

me on the phone, and she can't really understand her friends at all. We're in

the process of getting her an amplified phone from the state.

She can't understand the tv unless the volume is up quite loud, so the captions

are always on and she reads the tv.

One of the biggest challenges she faces, every day, is the perception that she

is a hearing person with just a slight difficulty. Because she speaks well,

and can hear well up close, most people forget that she is going to have

trouble if there's lots of background noise, or if there's much distance

between her and the person speaking, that many sounds aren't clear to her no

matter how loud they are, and that even with the hearing aids, she still

doesn't hear like a hearing person.

Barbara Handley

http://www.deafhomeschool.com

--- end of quote ---

*******************************

Barbara Mellert

Manager, Social Science Computing

Kiewit Computing Services

Dartmouth College

13A Silsby Hall; HB 6121

Hanover NH 03755

Telephone: 603/646-2877

URL: http://www.dartmouth.edu/~ssc

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Posted

Hi Barb - I couldn't agree with you more. My older son would be described as

hard of hearing - he has a a sloping severe loss. He has moderate hearing in

the lower ranges but slopes down to profound in higher frequencies. Like your

daughter, he gets nothing without his hearing aids, has a hard time with the

telephone (even with his telecoils), and we caption the television because the

TV is hard for him to understand, even with hearing aids. His hearing loss

absolutely affects him and while he does live more or less as a hearing person,

it's because of tons of work, good amplication and excellent people working

with him.

I think we need to be very careful making blanket statements such as the first

quoted sentence below - particularly to a new person - without knowing all the

facts.

Barbara

--- You wrote:

> wrote first - This is basically someone with a mild loss or someone

with a more severe loss who with hearing aids is able to live as a hearing

person with slight difficulty.

Then Barb wrote -- My daughter is hard of hearing, and that is not how I would

describe it. She has more than " slight " difficulty with many things that are

no big deal at all to a hearing person.

She has a moderate-severe cookie bite loss. Without her aids she doesn't hear

a whole lot. She can't hear the phone ring unless she's right next to it, and

she can't really understand speech at all unless it's loud and something she's

used to hearing. Actually, she can understand " I love you, " even in a very

quiet voice, because she hears enough of the vowel sounds to recognize it.

She has a hard time using the telephone. Even with the t-coil, she doesn't

understand women well on the phone. She'll talk to her dad, and one grandma

(with a fairly deep voice), but not the other grandma. She'll rarely speak to

me on the phone, and she can't really understand her friends at all. We're in

the process of getting her an amplified phone from the state.

She can't understand the tv unless the volume is up quite loud, so the captions

are always on and she reads the tv.

One of the biggest challenges she faces, every day, is the perception that she

is a hearing person with just a slight difficulty. Because she speaks well,

and can hear well up close, most people forget that she is going to have

trouble if there's lots of background noise, or if there's much distance

between her and the person speaking, that many sounds aren't clear to her no

matter how loud they are, and that even with the hearing aids, she still

doesn't hear like a hearing person.

Barbara Handley

http://www.deafhomeschool.com

--- end of quote ---

*******************************

Barbara Mellert

Manager, Social Science Computing

Kiewit Computing Services

Dartmouth College

13A Silsby Hall; HB 6121

Hanover NH 03755

Telephone: 603/646-2877

URL: http://www.dartmouth.edu/~ssc

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Posted
Posted

Hi Barb - I couldn't agree with you more. My older son would be described as

hard of hearing - he has a a sloping severe loss. He has moderate hearing in

the lower ranges but slopes down to profound in higher frequencies. Like your

daughter, he gets nothing without his hearing aids, has a hard time with the

telephone (even with his telecoils), and we caption the television because the

TV is hard for him to understand, even with hearing aids. His hearing loss

absolutely affects him and while he does live more or less as a hearing person,

it's because of tons of work, good amplication and excellent people working

with him.

I think we need to be very careful making blanket statements such as the first

quoted sentence below - particularly to a new person - without knowing all the

facts.

Barbara

--- You wrote:

> wrote first - This is basically someone with a mild loss or someone

with a more severe loss who with hearing aids is able to live as a hearing

person with slight difficulty.

Then Barb wrote -- My daughter is hard of hearing, and that is not how I would

describe it. She has more than " slight " difficulty with many things that are

no big deal at all to a hearing person.

She has a moderate-severe cookie bite loss. Without her aids she doesn't hear

a whole lot. She can't hear the phone ring unless she's right next to it, and

she can't really understand speech at all unless it's loud and something she's

used to hearing. Actually, she can understand " I love you, " even in a very

quiet voice, because she hears enough of the vowel sounds to recognize it.

She has a hard time using the telephone. Even with the t-coil, she doesn't

understand women well on the phone. She'll talk to her dad, and one grandma

(with a fairly deep voice), but not the other grandma. She'll rarely speak to

me on the phone, and she can't really understand her friends at all. We're in

the process of getting her an amplified phone from the state.

She can't understand the tv unless the volume is up quite loud, so the captions

are always on and she reads the tv.

One of the biggest challenges she faces, every day, is the perception that she

is a hearing person with just a slight difficulty. Because she speaks well,

and can hear well up close, most people forget that she is going to have

trouble if there's lots of background noise, or if there's much distance

between her and the person speaking, that many sounds aren't clear to her no

matter how loud they are, and that even with the hearing aids, she still

doesn't hear like a hearing person.

Barbara Handley

http://www.deafhomeschool.com

--- end of quote ---

*******************************

Barbara Mellert

Manager, Social Science Computing

Kiewit Computing Services

Dartmouth College

13A Silsby Hall; HB 6121

Hanover NH 03755

Telephone: 603/646-2877

URL: http://www.dartmouth.edu/~ssc

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Posted
Posted

Sara, welcome, you are just at the worst time of all of this, and sounds

like you've had a really rough 18 months. I'm so glad you found this list;

it's a very welcoming place with lots of people who have lots of experience

and info. And a great place to rant, too!

The good news is, ultimately your child will be able to communicate with

you, whether through sign or voice, and she will be a wonderful little

person no matter what. I remember the first two years of my son's life, not

knowing what would happen, and just being so anxious to know how it would

all turn out. Today he's 5 and couldn't be more delightful or wonderful, and

it's a huge relief to me. I call my son hard-of-hearing because he CAN hear

sounds (more so with hearing aids, since his loss is severe in both ears),

but have found that most people unfamiliar with deafness understand

" hearing-impaired " a bit better.

As for hearing aids, I too continue to be appalled that they are not covered

by insurance. If my son was born without an arm, they'd pay for a prosthetic

one -- why not prosthetic ears?? What I HAVE found through friends is that

most insurance will cover cochlear implant surgery, and that a good

children's hospital will help you fight for it. As for paying for aids, I

would check the Listen-Up site, but I think the Lion's Club might be a good

resource, among others.

You are doing a great thing, gathering all the information you can. The

Listen-Up site is an amazing resource; you can also go to

johntracyclinic.org and sign up for their free correspondence course for

parents of deaf babies (if you are looking for her to use her hearing and

speak). They have great material for all kinds of ways to play with your

daughter.

And as you gather info, this is a great place to ask questions, because

people here have LOTS of experience, and are hugely helpful.

Good luck, and keep in touch!

Stefanie

mom to Ben, 5, severe-to-profound HOH, Widex Senso P38s, and Isabella, 8,

mild loss, unaided

on 4/7/04 9:16 AM, sara christopher at snobordnwifey@... wrote:

> Hi everyone,

> My name is Sara and I'm new here. We have been in the process (seems like

> it's taking forever) of finding out that our 18 month old daughter is

> hearing impaired. I'm not sure what the difference is between deaf and

> hearing impaired. I always thought that deaf was completely unable to hear.

> IF that is the case, she is only hearing impaired.

>

> I believe that Tessa has be hearing impaired since birth, though she passed

> her newborn hearing screening. The first time she failed on one ear, but we

> took her back and she passed. However, I noticed that she never startled to

> loud sounds, etc. Everytime I mentioned it to the ped., they just brushed

> me off as an overprotective parent.

>

> After we moved here (about an hr. from Washington D.C.), we started

> pursueing it further. Unfortunately, we were in the midst of a traumatic

> time in our own lives, losing a baby to a fatal birth defect, that it was

> hard to get Tessa the care she needed. She was 11 months old. Finally at

> 14 months, we got her an audiological hearing test. They determined that

> she probably had fluid in her ears that was impeding her hearing, so we took

> her to an ENT who clarified that yes she did have fluid, so she got tubes

> put in her ears at the beginning of February. This helped her walking

> tremendously, but she still wasn't responding to our voices or loud noises.

> So, we took her back to the ENT for another audiological test. This

> audiologist confirmed that she was not hearing well at all. We got one

> possible response on the highest frequency at the loudest decibel

> level...and it wasn't even truly a positive response. So, we were told to

> schedule an ABR at Washington National Children's Hospital. It was

> scheduled for April 21st, but my aunt managed to get it moved up because she

> was leaving for Europe for a year. So, Tessa had her ABR last Wednesday.

> Of course, they gave us no information at the time and we had to sit ansy

> for info for almost a week. I had them fax over the info on Monday to the

> ENT. The nurse told me Monday night that Tessa has moderately severe

> hearing loss in her left ear and profound hearing loss in her right ear. We

> have an appt tomorrow to discuss this with the ENT. I'm not sure what

> tomorrow's appt. entails, but I'm so anxious for it. I don't know if

> they'll be able to tell us what caused her hearing loss or not.

>

> Tessa is the sweetest child. It upsets me to know that she can't hear like

> I can or her daddy can, but I know she will work through it and be even

> stronger for it. I just have such a hard time imagining it.

>

> I have been researching and researching for a week or so now on all the

> different methods. She will be eligible for a preschool in September, I

> believe. I'm not sure what option we will take. I spoke with someone about

> possible cochlear implants, and she said it sounded like Tessa could be a

> candidate, but we still aren't sure about that yet. She knows a few signs,

> but not many.

>

> Anyone know how to deal with insurance? I have been calling the insurance

> and asking them various questions. They never know anything, except that

> they won't pay for hearing aids, even for a child who was born with hearing

> loss. I don't understand it and it infuriates me. They told me that had it

> been the result of an accident, they would pay for them, but they won't

> because she was born this way. So, I think we need some information about

> possible programs that could help us pay for her hearing aids. I know we

> certiainly don't have the money right now. Also, no one at the insurance

> could tell me whether they would pay for cochlear implants. They said we

> have to go through the preauthorization before they could tell us. So, we

> have to go through all this work for them to possibly say no. I gave them

> the name of a dr. who does cochlear implants in our area, but they don't

> cover her, so I asked if they could give me a dr who they do cover, but they

> couldn't. They asked the specialty. I said Audiology so they offered to

> give the names of audiologists. Hello, not all of them do it!! I'm so

> frustrated with them. Anyways, anyone got any tips for working with

> insurance? They are really difficult!!!

>

> Well, thanks for reading my ranting and raving and my story about our

> precious daughter. She is so beautiful and love her so incredibly much. I

> want the best life that she can have and we're still trying to decide what

> the best way to do that is.

>

> Thanks,

> Sara

>

> _________________________________________________________________

> Free up your inbox with MSN Hotmail Extra Storage! Multiple plans available.

> http://join.msn.com/?pgmarket=en-us & page=hotmail/es2 & ST=1/go/onm00200362ave/di

> rect/01/

>

>

>

>

> All messages posted to this list are private and confidential. Each post is

> the intellectual property of the author and therefore subject to copyright

> restrictions.

>

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Posted
Posted

Sara, welcome, you are just at the worst time of all of this, and sounds

like you've had a really rough 18 months. I'm so glad you found this list;

it's a very welcoming place with lots of people who have lots of experience

and info. And a great place to rant, too!

The good news is, ultimately your child will be able to communicate with

you, whether through sign or voice, and she will be a wonderful little

person no matter what. I remember the first two years of my son's life, not

knowing what would happen, and just being so anxious to know how it would

all turn out. Today he's 5 and couldn't be more delightful or wonderful, and

it's a huge relief to me. I call my son hard-of-hearing because he CAN hear

sounds (more so with hearing aids, since his loss is severe in both ears),

but have found that most people unfamiliar with deafness understand

" hearing-impaired " a bit better.

As for hearing aids, I too continue to be appalled that they are not covered

by insurance. If my son was born without an arm, they'd pay for a prosthetic

one -- why not prosthetic ears?? What I HAVE found through friends is that

most insurance will cover cochlear implant surgery, and that a good

children's hospital will help you fight for it. As for paying for aids, I

would check the Listen-Up site, but I think the Lion's Club might be a good

resource, among others.

You are doing a great thing, gathering all the information you can. The

Listen-Up site is an amazing resource; you can also go to

johntracyclinic.org and sign up for their free correspondence course for

parents of deaf babies (if you are looking for her to use her hearing and

speak). They have great material for all kinds of ways to play with your

daughter.

And as you gather info, this is a great place to ask questions, because

people here have LOTS of experience, and are hugely helpful.

Good luck, and keep in touch!

Stefanie

mom to Ben, 5, severe-to-profound HOH, Widex Senso P38s, and Isabella, 8,

mild loss, unaided

on 4/7/04 9:16 AM, sara christopher at snobordnwifey@... wrote:

> Hi everyone,

> My name is Sara and I'm new here. We have been in the process (seems like

> it's taking forever) of finding out that our 18 month old daughter is

> hearing impaired. I'm not sure what the difference is between deaf and

> hearing impaired. I always thought that deaf was completely unable to hear.

> IF that is the case, she is only hearing impaired.

>

> I believe that Tessa has be hearing impaired since birth, though she passed

> her newborn hearing screening. The first time she failed on one ear, but we

> took her back and she passed. However, I noticed that she never startled to

> loud sounds, etc. Everytime I mentioned it to the ped., they just brushed

> me off as an overprotective parent.

>

> After we moved here (about an hr. from Washington D.C.), we started

> pursueing it further. Unfortunately, we were in the midst of a traumatic

> time in our own lives, losing a baby to a fatal birth defect, that it was

> hard to get Tessa the care she needed. She was 11 months old. Finally at

> 14 months, we got her an audiological hearing test. They determined that

> she probably had fluid in her ears that was impeding her hearing, so we took

> her to an ENT who clarified that yes she did have fluid, so she got tubes

> put in her ears at the beginning of February. This helped her walking

> tremendously, but she still wasn't responding to our voices or loud noises.

> So, we took her back to the ENT for another audiological test. This

> audiologist confirmed that she was not hearing well at all. We got one

> possible response on the highest frequency at the loudest decibel

> level...and it wasn't even truly a positive response. So, we were told to

> schedule an ABR at Washington National Children's Hospital. It was

> scheduled for April 21st, but my aunt managed to get it moved up because she

> was leaving for Europe for a year. So, Tessa had her ABR last Wednesday.

> Of course, they gave us no information at the time and we had to sit ansy

> for info for almost a week. I had them fax over the info on Monday to the

> ENT. The nurse told me Monday night that Tessa has moderately severe

> hearing loss in her left ear and profound hearing loss in her right ear. We

> have an appt tomorrow to discuss this with the ENT. I'm not sure what

> tomorrow's appt. entails, but I'm so anxious for it. I don't know if

> they'll be able to tell us what caused her hearing loss or not.

>

> Tessa is the sweetest child. It upsets me to know that she can't hear like

> I can or her daddy can, but I know she will work through it and be even

> stronger for it. I just have such a hard time imagining it.

>

> I have been researching and researching for a week or so now on all the

> different methods. She will be eligible for a preschool in September, I

> believe. I'm not sure what option we will take. I spoke with someone about

> possible cochlear implants, and she said it sounded like Tessa could be a

> candidate, but we still aren't sure about that yet. She knows a few signs,

> but not many.

>

> Anyone know how to deal with insurance? I have been calling the insurance

> and asking them various questions. They never know anything, except that

> they won't pay for hearing aids, even for a child who was born with hearing

> loss. I don't understand it and it infuriates me. They told me that had it

> been the result of an accident, they would pay for them, but they won't

> because she was born this way. So, I think we need some information about

> possible programs that could help us pay for her hearing aids. I know we

> certiainly don't have the money right now. Also, no one at the insurance

> could tell me whether they would pay for cochlear implants. They said we

> have to go through the preauthorization before they could tell us. So, we

> have to go through all this work for them to possibly say no. I gave them

> the name of a dr. who does cochlear implants in our area, but they don't

> cover her, so I asked if they could give me a dr who they do cover, but they

> couldn't. They asked the specialty. I said Audiology so they offered to

> give the names of audiologists. Hello, not all of them do it!! I'm so

> frustrated with them. Anyways, anyone got any tips for working with

> insurance? They are really difficult!!!

>

> Well, thanks for reading my ranting and raving and my story about our

> precious daughter. She is so beautiful and love her so incredibly much. I

> want the best life that she can have and we're still trying to decide what

> the best way to do that is.

>

> Thanks,

> Sara

>

> _________________________________________________________________

> Free up your inbox with MSN Hotmail Extra Storage! Multiple plans available.

> http://join.msn.com/?pgmarket=en-us & page=hotmail/es2 & ST=1/go/onm00200362ave/di

> rect/01/

>

>

>

>

> All messages posted to this list are private and confidential. Each post is

> the intellectual property of the author and therefore subject to copyright

> restrictions.

>

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Guest guest

Posted
Posted

Sara, welcome, you are just at the worst time of all of this, and sounds

like you've had a really rough 18 months. I'm so glad you found this list;

it's a very welcoming place with lots of people who have lots of experience

and info. And a great place to rant, too!

The good news is, ultimately your child will be able to communicate with

you, whether through sign or voice, and she will be a wonderful little

person no matter what. I remember the first two years of my son's life, not

knowing what would happen, and just being so anxious to know how it would

all turn out. Today he's 5 and couldn't be more delightful or wonderful, and

it's a huge relief to me. I call my son hard-of-hearing because he CAN hear

sounds (more so with hearing aids, since his loss is severe in both ears),

but have found that most people unfamiliar with deafness understand

" hearing-impaired " a bit better.

As for hearing aids, I too continue to be appalled that they are not covered

by insurance. If my son was born without an arm, they'd pay for a prosthetic

one -- why not prosthetic ears?? What I HAVE found through friends is that

most insurance will cover cochlear implant surgery, and that a good

children's hospital will help you fight for it. As for paying for aids, I

would check the Listen-Up site, but I think the Lion's Club might be a good

resource, among others.

You are doing a great thing, gathering all the information you can. The

Listen-Up site is an amazing resource; you can also go to

johntracyclinic.org and sign up for their free correspondence course for

parents of deaf babies (if you are looking for her to use her hearing and

speak). They have great material for all kinds of ways to play with your

daughter.

And as you gather info, this is a great place to ask questions, because

people here have LOTS of experience, and are hugely helpful.

Good luck, and keep in touch!

Stefanie

mom to Ben, 5, severe-to-profound HOH, Widex Senso P38s, and Isabella, 8,

mild loss, unaided

on 4/7/04 9:16 AM, sara christopher at snobordnwifey@... wrote:

> Hi everyone,

> My name is Sara and I'm new here. We have been in the process (seems like

> it's taking forever) of finding out that our 18 month old daughter is

> hearing impaired. I'm not sure what the difference is between deaf and

> hearing impaired. I always thought that deaf was completely unable to hear.

> IF that is the case, she is only hearing impaired.

>

> I believe that Tessa has be hearing impaired since birth, though she passed

> her newborn hearing screening. The first time she failed on one ear, but we

> took her back and she passed. However, I noticed that she never startled to

> loud sounds, etc. Everytime I mentioned it to the ped., they just brushed

> me off as an overprotective parent.

>

> After we moved here (about an hr. from Washington D.C.), we started

> pursueing it further. Unfortunately, we were in the midst of a traumatic

> time in our own lives, losing a baby to a fatal birth defect, that it was

> hard to get Tessa the care she needed. She was 11 months old. Finally at

> 14 months, we got her an audiological hearing test. They determined that

> she probably had fluid in her ears that was impeding her hearing, so we took

> her to an ENT who clarified that yes she did have fluid, so she got tubes

> put in her ears at the beginning of February. This helped her walking

> tremendously, but she still wasn't responding to our voices or loud noises.

> So, we took her back to the ENT for another audiological test. This

> audiologist confirmed that she was not hearing well at all. We got one

> possible response on the highest frequency at the loudest decibel

> level...and it wasn't even truly a positive response. So, we were told to

> schedule an ABR at Washington National Children's Hospital. It was

> scheduled for April 21st, but my aunt managed to get it moved up because she

> was leaving for Europe for a year. So, Tessa had her ABR last Wednesday.

> Of course, they gave us no information at the time and we had to sit ansy

> for info for almost a week. I had them fax over the info on Monday to the

> ENT. The nurse told me Monday night that Tessa has moderately severe

> hearing loss in her left ear and profound hearing loss in her right ear. We

> have an appt tomorrow to discuss this with the ENT. I'm not sure what

> tomorrow's appt. entails, but I'm so anxious for it. I don't know if

> they'll be able to tell us what caused her hearing loss or not.

>

> Tessa is the sweetest child. It upsets me to know that she can't hear like

> I can or her daddy can, but I know she will work through it and be even

> stronger for it. I just have such a hard time imagining it.

>

> I have been researching and researching for a week or so now on all the

> different methods. She will be eligible for a preschool in September, I

> believe. I'm not sure what option we will take. I spoke with someone about

> possible cochlear implants, and she said it sounded like Tessa could be a

> candidate, but we still aren't sure about that yet. She knows a few signs,

> but not many.

>

> Anyone know how to deal with insurance? I have been calling the insurance

> and asking them various questions. They never know anything, except that

> they won't pay for hearing aids, even for a child who was born with hearing

> loss. I don't understand it and it infuriates me. They told me that had it

> been the result of an accident, they would pay for them, but they won't

> because she was born this way. So, I think we need some information about

> possible programs that could help us pay for her hearing aids. I know we

> certiainly don't have the money right now. Also, no one at the insurance

> could tell me whether they would pay for cochlear implants. They said we

> have to go through the preauthorization before they could tell us. So, we

> have to go through all this work for them to possibly say no. I gave them

> the name of a dr. who does cochlear implants in our area, but they don't

> cover her, so I asked if they could give me a dr who they do cover, but they

> couldn't. They asked the specialty. I said Audiology so they offered to

> give the names of audiologists. Hello, not all of them do it!! I'm so

> frustrated with them. Anyways, anyone got any tips for working with

> insurance? They are really difficult!!!

>

> Well, thanks for reading my ranting and raving and my story about our

> precious daughter. She is so beautiful and love her so incredibly much. I

> want the best life that she can have and we're still trying to decide what

> the best way to do that is.

>

> Thanks,

> Sara

>

> _________________________________________________________________

> Free up your inbox with MSN Hotmail Extra Storage! Multiple plans available.

> http://join.msn.com/?pgmarket=en-us & page=hotmail/es2 & ST=1/go/onm00200362ave/di

> rect/01/

>

>

>

>

> All messages posted to this list are private and confidential. Each post is

> the intellectual property of the author and therefore subject to copyright

> restrictions.

>

Link to comment
Share on other sites
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Guest guest

Posted
Posted

> This is basically someone with a mild loss or someone with a more severe loss

who with hearing aids is able to live as a hearing person with slight

difficulty.

My daughter is hard of hearing, and that is not how I would describe it. She

has more than " slight " difficulty with many things that are no big deal at all

to a hearing person.

She has a moderate-severe cookie bite loss. Without her aids she doesn't hear a

whole lot. She can't hear the phone ring unless she's right next to it, and she

can't really understand speech at all unless it's loud and something she's used

to hearing. Actually, she can understand " I love you, " even in a very quiet

voice, because she hears enough of the vowel sounds to recognize it.

She has a hard time using the telephone. Even with the t-coil, she doesn't

understand women well on the phone. She'll talk to her dad, and one grandma

(with a fairly deep voice), but not the other grandma. She'll rarely speak to

me on the phone, and she can't really understand her friends at all. We're in

the process of getting her an amplified phone from the state.

She can't understand the tv unless the volume is up quite loud, so the captions

are always on and she reads the tv.

One of the biggest challenges she faces, every day, is the perception that she

is a hearing person with just a slight difficulty. Because she speaks well, and

can hear well up close, most people forget that she is going to have trouble if

there's lots of background noise, or if there's much distance between her and

the person speaking, that many sounds aren't clear to her no matter how loud

they are, and that even with the hearing aids, she still doesn't hear like a

hearing person.

Barbara Handley

http://www.deafhomeschool.com

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Posted
Posted

Dear Sara,

Welcome to the group. My daughter Sierra (age 3) has profound hearing loss in

both ears and we are looking into getting a cochlear implant for her. We are

meeting with the cochlear implant team this month for all the evaluations. It

will be August before she can have the implant though (she had a tumor in her

right ear and we have to make sure it doesn't come back before she can be

implanted). Our insurance also doesn't cover hearing aids but they will cover

her surgery for the cochlear implant. Sierra does wear hearing aids now, but

they don't help enough.

I hope you will get a lot of answers tomorrow from the ENT. The ENT is the one

who would do the cochlear implant, not the audiologist. We are going to take

Sierra to Dr. Choo at Cincinnati Children's Hospital. If there is anything else

I can do to help just ask. Take care and God Bless.

Natasha~Mommy to~

(8/25/97) & *Sierra (11/28/00)

*Multiple Craniosynostosis, Crouzon's Syndrome,

Asthma, Trach, Tracheamalacia, Subglottic Stenosis,

Chonal Stenosis, FTT, GERD, G-tube & Nissan,

Profound hearing loss. Sierra's story:

www.cappskids.org/CAPPSCranioKidSierra.htm

Introduction (I'm new)

Hi everyone,

My name is Sara and I'm new here. We have been in the process (seems like

it's taking forever) of finding out that our 18 month old daughter is

hearing impaired. I'm not sure what the difference is between deaf and

hearing impaired. I always thought that deaf was completely unable to hear.

IF that is the case, she is only hearing impaired.

I believe that Tessa has be hearing impaired since birth, though she passed

her newborn hearing screening. The first time she failed on one ear, but we

took her back and she passed. However, I noticed that she never startled to

loud sounds, etc. Everytime I mentioned it to the ped., they just brushed

me off as an overprotective parent.

After we moved here (about an hr. from Washington D.C.), we started

pursueing it further. Unfortunately, we were in the midst of a traumatic

time in our own lives, losing a baby to a fatal birth defect, that it was

hard to get Tessa the care she needed. She was 11 months old. Finally at

14 months, we got her an audiological hearing test. They determined that

she probably had fluid in her ears that was impeding her hearing, so we took

her to an ENT who clarified that yes she did have fluid, so she got tubes

put in her ears at the beginning of February. This helped her walking

tremendously, but she still wasn't responding to our voices or loud noises.

So, we took her back to the ENT for another audiological test. This

audiologist confirmed that she was not hearing well at all. We got one

possible response on the highest frequency at the loudest decibel

level...and it wasn't even truly a positive response. So, we were told to

schedule an ABR at Washington National Children's Hospital. It was

scheduled for April 21st, but my aunt managed to get it moved up because she

was leaving for Europe for a year. So, Tessa had her ABR last Wednesday.

Of course, they gave us no information at the time and we had to sit ansy

for info for almost a week. I had them fax over the info on Monday to the

ENT. The nurse told me Monday night that Tessa has moderately severe

hearing loss in her left ear and profound hearing loss in her right ear. We

have an appt tomorrow to discuss this with the ENT. I'm not sure what

tomorrow's appt. entails, but I'm so anxious for it. I don't know if

they'll be able to tell us what caused her hearing loss or not.

Tessa is the sweetest child. It upsets me to know that she can't hear like

I can or her daddy can, but I know she will work through it and be even

stronger for it. I just have such a hard time imagining it.

I have been researching and researching for a week or so now on all the

different methods. She will be eligible for a preschool in September, I

believe. I'm not sure what option we will take. I spoke with someone about

possible cochlear implants, and she said it sounded like Tessa could be a

candidate, but we still aren't sure about that yet. She knows a few signs,

but not many.

Anyone know how to deal with insurance? I have been calling the insurance

and asking them various questions. They never know anything, except that

they won't pay for hearing aids, even for a child who was born with hearing

loss. I don't understand it and it infuriates me. They told me that had it

been the result of an accident, they would pay for them, but they won't

because she was born this way. So, I think we need some information about

possible programs that could help us pay for her hearing aids. I know we

certiainly don't have the money right now. Also, no one at the insurance

could tell me whether they would pay for cochlear implants. They said we

have to go through the preauthorization before they could tell us. So, we

have to go through all this work for them to possibly say no. I gave them

the name of a dr. who does cochlear implants in our area, but they don't

cover her, so I asked if they could give me a dr who they do cover, but they

couldn't. They asked the specialty. I said Audiology so they offered to

give the names of audiologists. Hello, not all of them do it!! I'm so

frustrated with them. Anyways, anyone got any tips for working with

insurance? They are really difficult!!!

Well, thanks for reading my ranting and raving and my story about our

precious daughter. She is so beautiful and love her so incredibly much. I

want the best life that she can have and we're still trying to decide what

the best way to do that is.

Thanks,

Sara

_________________________________________________________________

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Posted
Posted

Dear Sara,

Welcome to the group. My daughter Sierra (age 3) has profound hearing loss in

both ears and we are looking into getting a cochlear implant for her. We are

meeting with the cochlear implant team this month for all the evaluations. It

will be August before she can have the implant though (she had a tumor in her

right ear and we have to make sure it doesn't come back before she can be

implanted). Our insurance also doesn't cover hearing aids but they will cover

her surgery for the cochlear implant. Sierra does wear hearing aids now, but

they don't help enough.

I hope you will get a lot of answers tomorrow from the ENT. The ENT is the one

who would do the cochlear implant, not the audiologist. We are going to take

Sierra to Dr. Choo at Cincinnati Children's Hospital. If there is anything else

I can do to help just ask. Take care and God Bless.

Natasha~Mommy to~

(8/25/97) & *Sierra (11/28/00)

*Multiple Craniosynostosis, Crouzon's Syndrome,

Asthma, Trach, Tracheamalacia, Subglottic Stenosis,

Chonal Stenosis, FTT, GERD, G-tube & Nissan,

Profound hearing loss. Sierra's story:

www.cappskids.org/CAPPSCranioKidSierra.htm

Introduction (I'm new)

Hi everyone,

My name is Sara and I'm new here. We have been in the process (seems like

it's taking forever) of finding out that our 18 month old daughter is

hearing impaired. I'm not sure what the difference is between deaf and

hearing impaired. I always thought that deaf was completely unable to hear.

IF that is the case, she is only hearing impaired.

I believe that Tessa has be hearing impaired since birth, though she passed

her newborn hearing screening. The first time she failed on one ear, but we

took her back and she passed. However, I noticed that she never startled to

loud sounds, etc. Everytime I mentioned it to the ped., they just brushed

me off as an overprotective parent.

After we moved here (about an hr. from Washington D.C.), we started

pursueing it further. Unfortunately, we were in the midst of a traumatic

time in our own lives, losing a baby to a fatal birth defect, that it was

hard to get Tessa the care she needed. She was 11 months old. Finally at

14 months, we got her an audiological hearing test. They determined that

she probably had fluid in her ears that was impeding her hearing, so we took

her to an ENT who clarified that yes she did have fluid, so she got tubes

put in her ears at the beginning of February. This helped her walking

tremendously, but she still wasn't responding to our voices or loud noises.

So, we took her back to the ENT for another audiological test. This

audiologist confirmed that she was not hearing well at all. We got one

possible response on the highest frequency at the loudest decibel

level...and it wasn't even truly a positive response. So, we were told to

schedule an ABR at Washington National Children's Hospital. It was

scheduled for April 21st, but my aunt managed to get it moved up because she

was leaving for Europe for a year. So, Tessa had her ABR last Wednesday.

Of course, they gave us no information at the time and we had to sit ansy

for info for almost a week. I had them fax over the info on Monday to the

ENT. The nurse told me Monday night that Tessa has moderately severe

hearing loss in her left ear and profound hearing loss in her right ear. We

have an appt tomorrow to discuss this with the ENT. I'm not sure what

tomorrow's appt. entails, but I'm so anxious for it. I don't know if

they'll be able to tell us what caused her hearing loss or not.

Tessa is the sweetest child. It upsets me to know that she can't hear like

I can or her daddy can, but I know she will work through it and be even

stronger for it. I just have such a hard time imagining it.

I have been researching and researching for a week or so now on all the

different methods. She will be eligible for a preschool in September, I

believe. I'm not sure what option we will take. I spoke with someone about

possible cochlear implants, and she said it sounded like Tessa could be a

candidate, but we still aren't sure about that yet. She knows a few signs,

but not many.

Anyone know how to deal with insurance? I have been calling the insurance

and asking them various questions. They never know anything, except that

they won't pay for hearing aids, even for a child who was born with hearing

loss. I don't understand it and it infuriates me. They told me that had it

been the result of an accident, they would pay for them, but they won't

because she was born this way. So, I think we need some information about

possible programs that could help us pay for her hearing aids. I know we

certiainly don't have the money right now. Also, no one at the insurance

could tell me whether they would pay for cochlear implants. They said we

have to go through the preauthorization before they could tell us. So, we

have to go through all this work for them to possibly say no. I gave them

the name of a dr. who does cochlear implants in our area, but they don't

cover her, so I asked if they could give me a dr who they do cover, but they

couldn't. They asked the specialty. I said Audiology so they offered to

give the names of audiologists. Hello, not all of them do it!! I'm so

frustrated with them. Anyways, anyone got any tips for working with

insurance? They are really difficult!!!

Well, thanks for reading my ranting and raving and my story about our

precious daughter. She is so beautiful and love her so incredibly much. I

want the best life that she can have and we're still trying to decide what

the best way to do that is.

Thanks,

Sara

_________________________________________________________________

Free up your inbox with MSN Hotmail Extra Storage! Multiple plans available.

http://join.msn.com/?pgmarket=en-us & page=hotmail/es2 & ST=1/go/onm00200362ave/dire\

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the intellectual property of the author and therefore subject to copyright

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Posted
Posted

Dear Sara,

Welcome to the group. My daughter Sierra (age 3) has profound hearing loss in

both ears and we are looking into getting a cochlear implant for her. We are

meeting with the cochlear implant team this month for all the evaluations. It

will be August before she can have the implant though (she had a tumor in her

right ear and we have to make sure it doesn't come back before she can be

implanted). Our insurance also doesn't cover hearing aids but they will cover

her surgery for the cochlear implant. Sierra does wear hearing aids now, but

they don't help enough.

I hope you will get a lot of answers tomorrow from the ENT. The ENT is the one

who would do the cochlear implant, not the audiologist. We are going to take

Sierra to Dr. Choo at Cincinnati Children's Hospital. If there is anything else

I can do to help just ask. Take care and God Bless.

Natasha~Mommy to~

(8/25/97) & *Sierra (11/28/00)

*Multiple Craniosynostosis, Crouzon's Syndrome,

Asthma, Trach, Tracheamalacia, Subglottic Stenosis,

Chonal Stenosis, FTT, GERD, G-tube & Nissan,

Profound hearing loss. Sierra's story:

www.cappskids.org/CAPPSCranioKidSierra.htm

Introduction (I'm new)

Hi everyone,

My name is Sara and I'm new here. We have been in the process (seems like

it's taking forever) of finding out that our 18 month old daughter is

hearing impaired. I'm not sure what the difference is between deaf and

hearing impaired. I always thought that deaf was completely unable to hear.

IF that is the case, she is only hearing impaired.

I believe that Tessa has be hearing impaired since birth, though she passed

her newborn hearing screening. The first time she failed on one ear, but we

took her back and she passed. However, I noticed that she never startled to

loud sounds, etc. Everytime I mentioned it to the ped., they just brushed

me off as an overprotective parent.

After we moved here (about an hr. from Washington D.C.), we started

pursueing it further. Unfortunately, we were in the midst of a traumatic

time in our own lives, losing a baby to a fatal birth defect, that it was

hard to get Tessa the care she needed. She was 11 months old. Finally at

14 months, we got her an audiological hearing test. They determined that

she probably had fluid in her ears that was impeding her hearing, so we took

her to an ENT who clarified that yes she did have fluid, so she got tubes

put in her ears at the beginning of February. This helped her walking

tremendously, but she still wasn't responding to our voices or loud noises.

So, we took her back to the ENT for another audiological test. This

audiologist confirmed that she was not hearing well at all. We got one

possible response on the highest frequency at the loudest decibel

level...and it wasn't even truly a positive response. So, we were told to

schedule an ABR at Washington National Children's Hospital. It was

scheduled for April 21st, but my aunt managed to get it moved up because she

was leaving for Europe for a year. So, Tessa had her ABR last Wednesday.

Of course, they gave us no information at the time and we had to sit ansy

for info for almost a week. I had them fax over the info on Monday to the

ENT. The nurse told me Monday night that Tessa has moderately severe

hearing loss in her left ear and profound hearing loss in her right ear. We

have an appt tomorrow to discuss this with the ENT. I'm not sure what

tomorrow's appt. entails, but I'm so anxious for it. I don't know if

they'll be able to tell us what caused her hearing loss or not.

Tessa is the sweetest child. It upsets me to know that she can't hear like

I can or her daddy can, but I know she will work through it and be even

stronger for it. I just have such a hard time imagining it.

I have been researching and researching for a week or so now on all the

different methods. She will be eligible for a preschool in September, I

believe. I'm not sure what option we will take. I spoke with someone about

possible cochlear implants, and she said it sounded like Tessa could be a

candidate, but we still aren't sure about that yet. She knows a few signs,

but not many.

Anyone know how to deal with insurance? I have been calling the insurance

and asking them various questions. They never know anything, except that

they won't pay for hearing aids, even for a child who was born with hearing

loss. I don't understand it and it infuriates me. They told me that had it

been the result of an accident, they would pay for them, but they won't

because she was born this way. So, I think we need some information about

possible programs that could help us pay for her hearing aids. I know we

certiainly don't have the money right now. Also, no one at the insurance

could tell me whether they would pay for cochlear implants. They said we

have to go through the preauthorization before they could tell us. So, we

have to go through all this work for them to possibly say no. I gave them

the name of a dr. who does cochlear implants in our area, but they don't

cover her, so I asked if they could give me a dr who they do cover, but they

couldn't. They asked the specialty. I said Audiology so they offered to

give the names of audiologists. Hello, not all of them do it!! I'm so

frustrated with them. Anyways, anyone got any tips for working with

insurance? They are really difficult!!!

Well, thanks for reading my ranting and raving and my story about our

precious daughter. She is so beautiful and love her so incredibly much. I

want the best life that she can have and we're still trying to decide what

the best way to do that is.

Thanks,

Sara

_________________________________________________________________

Free up your inbox with MSN Hotmail Extra Storage! Multiple plans available.

http://join.msn.com/?pgmarket=en-us & page=hotmail/es2 & ST=1/go/onm00200362ave/dire\

ct/01/

All messages posted to this list are private and confidential. Each post is

the intellectual property of the author and therefore subject to copyright

restrictions.

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Guest guest

Guest guest

Posted
Posted

That's true, but I think even where they do an ABR that is a recent thing within

the past few years. I do think it is great and I think all hospitals should do

an ABR instead of the typical OAE. There are a lot of kids with AN who pass the

OAE and are told their baby has normal hearing when if they did an ABR they

would know from the start that they don't.

Re: Introduction (I'm new)

--- wrote:

The thing to know is the newborn screaning tests are usually just an OAE and

sometimes depending on the type of loss even a profound loss doesn't show up

on

those, it's really misleading in some cases, just because they pass doesn't

mean the child is fine.

--- end of quote ---

At least in NH, most hospitals here do a screening ABR and not an OAE so it

differs from place to place....

Barbara

*******************************

Barbara Mellert

Manager, Social Science Computing

Kiewit Computing Services

Dartmouth College

13A Silsby Hall; HB 6121

Hanover NH 03755

Telephone: 603/646-2877

URL: http://www.dartmouth.edu/~ssc

All messages posted to this list are private and confidential. Each post is

the intellectual property of the author and therefore subject to copyright

restrictions.

------------------------------------------------------------------------------

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Guest guest

Guest guest

Posted
Posted

That's true, but I think even where they do an ABR that is a recent thing within

the past few years. I do think it is great and I think all hospitals should do

an ABR instead of the typical OAE. There are a lot of kids with AN who pass the

OAE and are told their baby has normal hearing when if they did an ABR they

would know from the start that they don't.

Re: Introduction (I'm new)

--- wrote:

The thing to know is the newborn screaning tests are usually just an OAE and

sometimes depending on the type of loss even a profound loss doesn't show up

on

those, it's really misleading in some cases, just because they pass doesn't

mean the child is fine.

--- end of quote ---

At least in NH, most hospitals here do a screening ABR and not an OAE so it

differs from place to place....

Barbara

*******************************

Barbara Mellert

Manager, Social Science Computing

Kiewit Computing Services

Dartmouth College

13A Silsby Hall; HB 6121

Hanover NH 03755

Telephone: 603/646-2877

URL: http://www.dartmouth.edu/~ssc

All messages posted to this list are private and confidential. Each post is

the intellectual property of the author and therefore subject to copyright

restrictions.

------------------------------------------------------------------------------

Link to comment
Share on other sites
Guest guest

Guest guest

Posted
Posted

That's true, but I think even where they do an ABR that is a recent thing within

the past few years. I do think it is great and I think all hospitals should do

an ABR instead of the typical OAE. There are a lot of kids with AN who pass the

OAE and are told their baby has normal hearing when if they did an ABR they

would know from the start that they don't.

Re: Introduction (I'm new)

--- wrote:

The thing to know is the newborn screaning tests are usually just an OAE and

sometimes depending on the type of loss even a profound loss doesn't show up

on

those, it's really misleading in some cases, just because they pass doesn't

mean the child is fine.

--- end of quote ---

At least in NH, most hospitals here do a screening ABR and not an OAE so it

differs from place to place....

Barbara

*******************************

Barbara Mellert

Manager, Social Science Computing

Kiewit Computing Services

Dartmouth College

13A Silsby Hall; HB 6121

Hanover NH 03755

Telephone: 603/646-2877

URL: http://www.dartmouth.edu/~ssc

All messages posted to this list are private and confidential. Each post is

the intellectual property of the author and therefore subject to copyright

restrictions.

------------------------------------------------------------------------------

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Guest guest

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Posted
Posted

Hi everyone,

> My name is Sara and I'm new here.......I spoke with someone about

> possible cochlear implants, and she said it sounded like Tessa could be a

> candidate, but we still aren't sure about that yet.

I would say that if she is profoundly deaf in the one ear she is a

candidate. Depending on the guidelines of the implant center they are

implanting kids with a 80 and above dcbl hearing loss(some don't start to

think about this until they reach the 90 dcbl loss level). My daughter is 2

and just had bilateral cochlear implants put in and had hookup on 3/25/04.

She is doing so awesome but usually you will need to give hearing aids a

trial first before they consider you for an implant.

Anyone know how to deal with insurance?...........They told me that had it

> been the result of an accident, they would pay for them, but they won't

> because she was born this way.

I find that very interesting because now in the state of MN it is just the

opposite. They now will cover the cost of hearing aids if the child has a

congenital hearing loss but if it is an acquired loss they do not cover

this. I only know this because Annika has a hearing loss because she had

bacterial meningitis when she was a baby and that is where her hearing loss

came from so we had to find other resources to get her hearing aids from. I

know that a big contributor to hearing loss is the Lions club and they have

monies or even some places have loaner hearing aids to help families be able

to afford to get their child hearing aids. We also were able to get Annika

on Medical Assistance because of her disability and so that is how we paid

for her hearing aids. I know that if you discuss this with your audiologist

or ENT they should be able to give you information on what is available in

your area for covering the hearing aids.

Insurance companies are always a very frustrating part of this journey. I

think sometimes they think that their job in our lives is to create more

obstacles and more hassles than really needed but of course that is not fair

to say. My current ENT and audiologist have been a great help to us in

working with the insurance companies(she has both the private insurance and

then the medical assistance backup) and getting approvals for things for us.

So depending on your office they can be a great help or maybe not.

I want to let you know that I am sorry that you have had to go through all

of this. Losing a child and then dealing with a hearing loss that should

have been diagnosed early. What a process you have been through. But I will

just say that I think you have come to the right place because I have gotten

lots of help through this group in my journey.

If you ever need to contact me privately please let me know. I am willing

to help in anyway possible.

Mom of 4

Marcus 13

12

Jon 10

Annika 2

Bilateral Clarion implant 3/1/04

Hookup 3/25/04

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Share on other sites
Guest guest

Guest guest

Posted
Posted

Hi everyone,

> My name is Sara and I'm new here.......I spoke with someone about

> possible cochlear implants, and she said it sounded like Tessa could be a

> candidate, but we still aren't sure about that yet.

I would say that if she is profoundly deaf in the one ear she is a

candidate. Depending on the guidelines of the implant center they are

implanting kids with a 80 and above dcbl hearing loss(some don't start to

think about this until they reach the 90 dcbl loss level). My daughter is 2

and just had bilateral cochlear implants put in and had hookup on 3/25/04.

She is doing so awesome but usually you will need to give hearing aids a

trial first before they consider you for an implant.

Anyone know how to deal with insurance?...........They told me that had it

> been the result of an accident, they would pay for them, but they won't

> because she was born this way.

I find that very interesting because now in the state of MN it is just the

opposite. They now will cover the cost of hearing aids if the child has a

congenital hearing loss but if it is an acquired loss they do not cover

this. I only know this because Annika has a hearing loss because she had

bacterial meningitis when she was a baby and that is where her hearing loss

came from so we had to find other resources to get her hearing aids from. I

know that a big contributor to hearing loss is the Lions club and they have

monies or even some places have loaner hearing aids to help families be able

to afford to get their child hearing aids. We also were able to get Annika

on Medical Assistance because of her disability and so that is how we paid

for her hearing aids. I know that if you discuss this with your audiologist

or ENT they should be able to give you information on what is available in

your area for covering the hearing aids.

Insurance companies are always a very frustrating part of this journey. I

think sometimes they think that their job in our lives is to create more

obstacles and more hassles than really needed but of course that is not fair

to say. My current ENT and audiologist have been a great help to us in

working with the insurance companies(she has both the private insurance and

then the medical assistance backup) and getting approvals for things for us.

So depending on your office they can be a great help or maybe not.

I want to let you know that I am sorry that you have had to go through all

of this. Losing a child and then dealing with a hearing loss that should

have been diagnosed early. What a process you have been through. But I will

just say that I think you have come to the right place because I have gotten

lots of help through this group in my journey.

If you ever need to contact me privately please let me know. I am willing

to help in anyway possible.

Mom of 4

Marcus 13

12

Jon 10

Annika 2

Bilateral Clarion implant 3/1/04

Hookup 3/25/04

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