Re: Neal's hook-up/make me feel better...please!

[Guest guest]

In a message dated 6/11/2002 8:50:33 PM Eastern Standard Time,

momnaudrey@... writes:

> I need some encouragement. Neal had his initial stimulation today. I know

> I

> wasn't suppose to expect much, but I guess I did anyway and it was

> disappointing. I'm really unsure if he ever had a reaction, although

> everyone else who was there thinks he did.

Dear Rhonda,

My son is scheduled for his implant surgery in two weeks. I can identify

with a lot of the concerns and questions you've had and I hope you will

continue sharing your experiences as Neal progresses.

As far as the initial stimulation, I can't offer first hand advice. I was

talking with a ENT resident last week who has two young children with

implants. His son was implanted at age 3. He did receive some benefit from

his aids previously so he was used to some auditory stimulation, however the

ENT was saying that after the initial stimulation they couldn't tell if their

son was hearing anything. They said he didn't seem to respond to anything

for a month. I think like everything else, kids react differently. It's

hard not knowing the outcome.

Kearns

's mom, 19 months, profound

[Guest guest]

In a message dated 6/11/2002 8:50:33 PM Eastern Standard Time,

momnaudrey@... writes:

> I need some encouragement. Neal had his initial stimulation today. I know

> I

> wasn't suppose to expect much, but I guess I did anyway and it was

> disappointing. I'm really unsure if he ever had a reaction, although

> everyone else who was there thinks he did.

Dear Rhonda,

My son is scheduled for his implant surgery in two weeks. I can identify

with a lot of the concerns and questions you've had and I hope you will

continue sharing your experiences as Neal progresses.

As far as the initial stimulation, I can't offer first hand advice. I was

talking with a ENT resident last week who has two young children with

implants. His son was implanted at age 3. He did receive some benefit from

his aids previously so he was used to some auditory stimulation, however the

ENT was saying that after the initial stimulation they couldn't tell if their

son was hearing anything. They said he didn't seem to respond to anything

for a month. I think like everything else, kids react differently. It's

hard not knowing the outcome.

Kearns

's mom, 19 months, profound

[Guest guest]

In a message dated 6/11/2002 8:50:33 PM Eastern Standard Time,

momnaudrey@... writes:

> I need some encouragement. Neal had his initial stimulation today. I know

> I

> wasn't suppose to expect much, but I guess I did anyway and it was

> disappointing. I'm really unsure if he ever had a reaction, although

> everyone else who was there thinks he did.

Dear Rhonda,

My son is scheduled for his implant surgery in two weeks. I can identify

with a lot of the concerns and questions you've had and I hope you will

continue sharing your experiences as Neal progresses.

As far as the initial stimulation, I can't offer first hand advice. I was

talking with a ENT resident last week who has two young children with

implants. His son was implanted at age 3. He did receive some benefit from

his aids previously so he was used to some auditory stimulation, however the

ENT was saying that after the initial stimulation they couldn't tell if their

son was hearing anything. They said he didn't seem to respond to anything

for a month. I think like everything else, kids react differently. It's

hard not knowing the outcome.

Kearns

's mom, 19 months, profound

[Guest guest]

Rhonda,

a's initial mapping was totally unceremonious. Keep in mind that your

child's back is to you and they can see his facial reactions. I didn't see

a react with any fanfare until the third map. However, her initial

mapping was scheduled for Sept. 11th and needless to say it had to be

postponed. So we had to cram three mapping appointments into one day or else

wait 8 weeks for another appointment. So I do not know if it was just me not

really being into cuz of the tragedies the few days prior or if she in fact

was just not as reactive as I had hoped.

Look on the bright side - He didn't scream or cry. And the device apparently

is working and you are not among the few who have a dud device. How is he

wearing it now?

Cathleen

Re: Neal's hook-up/make me feel better...please!

>

>

>

> << Re: headpiece, what device does Neal have? Em wears the Nucleus Esprit

22,

> and the transmitter coil has a screw-in magnet in the center. We can

twist

> the magnet in or out of the coil to adjust the fit. It almost never comes

> off by itself, and we do nothing special to keep it there. >>

>

> We have the Clarion. Too bad in this case I guess. LOL. Thanks for the

> responses though. They are helping :-) Is there anyone with the Clarion

who

> can tell me how much it should be coming off and how many magnets you use?

> They started Neal with two.

> ~Rhonda

>

>

> 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.

>

>

[Guest guest]

Rhonda,

a's initial mapping was totally unceremonious. Keep in mind that your

child's back is to you and they can see his facial reactions. I didn't see

a react with any fanfare until the third map. However, her initial

mapping was scheduled for Sept. 11th and needless to say it had to be

postponed. So we had to cram three mapping appointments into one day or else

wait 8 weeks for another appointment. So I do not know if it was just me not

really being into cuz of the tragedies the few days prior or if she in fact

was just not as reactive as I had hoped.

Look on the bright side - He didn't scream or cry. And the device apparently

is working and you are not among the few who have a dud device. How is he

wearing it now?

Cathleen

Re: Neal's hook-up/make me feel better...please!

>

>

>

> << Re: headpiece, what device does Neal have? Em wears the Nucleus Esprit

22,

> and the transmitter coil has a screw-in magnet in the center. We can

twist

> the magnet in or out of the coil to adjust the fit. It almost never comes

> off by itself, and we do nothing special to keep it there. >>

>

> We have the Clarion. Too bad in this case I guess. LOL. Thanks for the

> responses though. They are helping :-) Is there anyone with the Clarion

who

> can tell me how much it should be coming off and how many magnets you use?

> They started Neal with two.

> ~Rhonda

>

>

> 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.

>

>

[Guest guest]

Rhonda,

a's initial mapping was totally unceremonious. Keep in mind that your

child's back is to you and they can see his facial reactions. I didn't see

a react with any fanfare until the third map. However, her initial

mapping was scheduled for Sept. 11th and needless to say it had to be

postponed. So we had to cram three mapping appointments into one day or else

wait 8 weeks for another appointment. So I do not know if it was just me not

really being into cuz of the tragedies the few days prior or if she in fact

was just not as reactive as I had hoped.

Look on the bright side - He didn't scream or cry. And the device apparently

is working and you are not among the few who have a dud device. How is he

wearing it now?

Cathleen

Re: Neal's hook-up/make me feel better...please!

>

>

>

> << Re: headpiece, what device does Neal have? Em wears the Nucleus Esprit

22,

> and the transmitter coil has a screw-in magnet in the center. We can

twist

> the magnet in or out of the coil to adjust the fit. It almost never comes

> off by itself, and we do nothing special to keep it there. >>

>

> We have the Clarion. Too bad in this case I guess. LOL. Thanks for the

> responses though. They are helping :-) Is there anyone with the Clarion

who

> can tell me how much it should be coming off and how many magnets you use?

> They started Neal with two.

> ~Rhonda

>

>

> 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.

>

>

[Guest guest]

<< Keep in mind that your

child's back is to you and they can see his facial reactions. I didn't see

a react with any fanfare until the third map. >>

Neal's back wasn't to me. I was on the other side of the table from him, so

I can't use that to feel better :-(

<<Look on the bright side - He didn't scream or cry. And the device apparently

is working and you are not among the few who have a dud device. How is he

wearing it now?>>

I guess the device is working. Their computer checks didn't say anything was

wrong, but I don't know if that checked the internal device. He's wearing it

really well though. Much better than he ever wore his hearing aids actually.

We had another mapping appointment today, but still nothing, except a few

possible responses in the sound booth (he loves that monkey to light up).

He wasn't very cooperative. He's just so darn tired after that long drive!

Makes me wish we had a Nucleus so they could check on the NRT (Is that the

right abbreviation?). I know Clarion has similar software, why is it still

not approved?? I really though tit would be by the time I got to this

point...

~Rhonda

[Guest guest]

<< Keep in mind that your

child's back is to you and they can see his facial reactions. I didn't see

a react with any fanfare until the third map. >>

Neal's back wasn't to me. I was on the other side of the table from him, so

I can't use that to feel better :-(

<<Look on the bright side - He didn't scream or cry. And the device apparently

is working and you are not among the few who have a dud device. How is he

wearing it now?>>

I guess the device is working. Their computer checks didn't say anything was

wrong, but I don't know if that checked the internal device. He's wearing it

really well though. Much better than he ever wore his hearing aids actually.

We had another mapping appointment today, but still nothing, except a few

possible responses in the sound booth (he loves that monkey to light up).

He wasn't very cooperative. He's just so darn tired after that long drive!

Makes me wish we had a Nucleus so they could check on the NRT (Is that the

right abbreviation?). I know Clarion has similar software, why is it still

not approved?? I really though tit would be by the time I got to this

point...

~Rhonda

[Guest guest]

<< Keep in mind that your

child's back is to you and they can see his facial reactions. I didn't see

a react with any fanfare until the third map. >>

Neal's back wasn't to me. I was on the other side of the table from him, so

I can't use that to feel better :-(

<<Look on the bright side - He didn't scream or cry. And the device apparently

is working and you are not among the few who have a dud device. How is he

wearing it now?>>

I guess the device is working. Their computer checks didn't say anything was

wrong, but I don't know if that checked the internal device. He's wearing it

really well though. Much better than he ever wore his hearing aids actually.

We had another mapping appointment today, but still nothing, except a few

possible responses in the sound booth (he loves that monkey to light up).

He wasn't very cooperative. He's just so darn tired after that long drive!

Makes me wish we had a Nucleus so they could check on the NRT (Is that the

right abbreviation?). I know Clarion has similar software, why is it still

not approved?? I really though tit would be by the time I got to this

point...

~Rhonda

[Guest guest]

Hi Rhonda,

Both my boys have the CII and wore 2 magnets at first. Once the swelling

subsided completely (about 2 months after activation) we took them both down to

1 magnet! They both have very short haircuts though and are careful not to move

their hands in a way that will dislodge the headpiece (they are 5 and 8 years

old, and were implanted April 02 and May 01 respectively).

When you went to the mapping did the audi give any indication that the impedance

readings on the electrodes were OK? If so, then the implant internal device is

likely working, and the problem is the degree of the map conservativeness.

When my 5 year old was first stimulated at the end April, we had a very

challenging time. He was a really good hearing aid user and a pretty good

reporter. He expected his implant to work like his older brothers, and when

his map was not good, he was litererally not hearing anything compared to how

he heard with his hearing aids! He cried all weekend after Friday activation

for his aids back. Needless to say we were in the audi's office again the

following Mon and again the following Friday. It ended up taking us about 3-4

weeks to get a " good " map, but now he is doing great!

So, I guess after my rambling the morale of the story is to hang in there and

not give up hope! It will be OK!

Kindest regards,

Trish

Trish R. Freeman, R.Ph., Ph.D.

Vice President Professional Affairs

American Pharmacy Services Corporation

102 Enterprise Drive

fort, KY 40601

telephone:

fax:

Re: Neal's hook-up/make me feel better...please!

<< Re: headpiece, what device does Neal have? Em wears the Nucleus Esprit 22,

and the transmitter coil has a screw-in magnet in the center. We can twist

the magnet in or out of the coil to adjust the fit. It almost never comes

off by itself, and we do nothing special to keep it there. >>

We have the Clarion. Too bad in this case I guess. LOL. Thanks for the

responses though. They are helping :-) Is there anyone with the Clarion who

can tell me how much it should be coming off and how many magnets you use?

They started Neal with two.

~Rhonda

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.