Meagan's implant was turned on today...

[Guest guest]

Hi everyone, just a quick update on Meagan's " turn on " day. We met with her

ENT who did the surgery, and he checked her incision and ears. She is

battling an ear infection at this time, but it seems to already be on it's

way out. Her incision looks great he says. After the quick check up, we

drove to PCH for the turn on. We were warned that if there was going to be a

day that she wouldn't respond, it would be today. When they turn her on,

they do it at a very low decibel, then work their way up (as to not

traumatize her with too much sound to start with). She did not respond today

to any sound that was generated at the volumes they had her set at. She was

sent home with her external pieces and four programs. After each day or so,

if she still is not responding, we will try the next program. Each program

is louder and louder. If we reach the fourth program, and she still doesn't

respond, next week they will send us home with new programs to try. I'm

sorry if this sounds confusing, but we are learning as we go as well.

Basically, she is not responding to any sound with her implant on. But, in

her defense, she has never heard a thing in her life. It is normal for a

child like Meagan to have to learn to respond to sound. Some kids will

respond immediately, and others will show responses days later. She did not

respond today; we hope she will respond later this week. If she doesn't,

there is still room for adjustment with her programs. Meagan will not hear

speech with her implant (according to medicine), but we are hoping to

benefit her with any kind of sound, even the slightest. If it is God's will,

speech will be heard. You can't stop hoping for that! We'll keep you updated

, mommy to Meagan (CHaRgE) and 2 year old twins, and big brother

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

[Guest guest]

Wishing you all the best with the CI - hopefully the next few programs will

yield some desirable results.

Hugs to you all,

www.chargesyndrome.info

>

> Hi everyone, just a quick update on Meagan's " turn on " day. We met with

> her

> ENT who did the surgery, and he checked her incision and ears. She is

> battling an ear infection at this time, but it seems to already be on it's

> way out. Her incision looks great he says. After the quick check up, we

> drove to PCH for the turn on. We were warned that if there was going to be

> a

> day that she wouldn't respond, it would be today. When they turn her on,

> they do it at a very low decibel, then work their way up (as to not

> traumatize her with too much sound to start with). She did not respond

> today

> to any sound that was generated at the volumes they had her set at. She

> was

> sent home with her external pieces and four programs. After each day or

> so,

> if she still is not responding, we will try the next program. Each program

> is louder and louder. If we reach the fourth program, and she still

> doesn't

> respond, next week they will send us home with new programs to try. I'm

> sorry if this sounds confusing, but we are learning as we go as well.

> Basically, she is not responding to any sound with her implant on. But, in

> her defense, she has never heard a thing in her life. It is normal for a

> child like Meagan to have to learn to respond to sound. Some kids will

> respond immediately, and others will show responses days later. She did

> not

> respond today; we hope she will respond later this week. If she doesn't,

> there is still room for adjustment with her programs. Meagan will not hear

> speech with her implant (according to medicine), but we are hoping to

> benefit her with any kind of sound, even the slightest. If it is God's

> will,

> speech will be heard. You can't stop hoping for that! We'll keep you

> updated

>

>

> , mommy to Meagan (CHaRgE) and 2 year old twins, and big

> brother 4 years, married to the best daddy in the world for 9 years!

>

>

[Guest guest]

Best of luck with the other programs, ! I hope that things go beautifully

as you proceed through the process. Your attitude and hopes and dreams are

coming through loud and clear. :-) We are hoping and praying with you.

and Kendra

Meagan's implant was turned on today...

Hi everyone, just a quick update on Meagan's " turn on " day. We met with her

ENT who did the surgery, and he checked her incision and ears. She is

battling an ear infection at this time, but it seems to already be on it's

way out. Her incision looks great he says. After the quick check up, we

drove to PCH for the turn on. We were warned that if there was going to be a

day that she wouldn't respond, it would be today. When they turn her on,

they do it at a very low decibel, then work their way up (as to not

traumatize her with too much sound to start with). She did not respond today

to any sound that was generated at the volumes they had her set at. She was

sent home with her external pieces and four programs. After each day or so,

if she still is not responding, we will try the next program. Each program

is louder and louder. If we reach the fourth program, and she still doesn't

respond, next week they will send us home with new programs to try. I'm

sorry if this sounds confusing, but we are learning as we go as well.

Basically, she is not responding to any sound with her implant on. But, in

her defense, she has never heard a thing in her life. It is normal for a

child like Meagan to have to learn to respond to sound. Some kids will

respond immediately, and others will show responses days later. She did not

respond today; we hope she will respond later this week. If she doesn't,

there is still room for adjustment with her programs. Meagan will not hear

speech with her implant (according to medicine), but we are hoping to

benefit her with any kind of sound, even the slightest. If it is God's will,

speech will be heard. You can't stop hoping for that! We'll keep you updated

, mommy to Meagan (CHaRgE) and 2 year old twins, and big brother

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

[Guest guest]

good luck

>

> Best of luck with the other programs, ! I hope that things go

> beautifully as you proceed through the process. Your attitude and hopes and

> dreams are coming through loud and clear. :-) We are hoping and praying with

> you.

>

> and Kendra

> Meagan's implant was turned on today...

>

> Hi everyone, just a quick update on Meagan's " turn on " day. We met with

> her

> ENT who did the surgery, and he checked her incision and ears. She is

> battling an ear infection at this time, but it seems to already be on it's

> way out. Her incision looks great he says. After the quick check up, we

> drove to PCH for the turn on. We were warned that if there was going to be

> a

> day that she wouldn't respond, it would be today. When they turn her on,

> they do it at a very low decibel, then work their way up (as to not

> traumatize her with too much sound to start with). She did not respond

> today

> to any sound that was generated at the volumes they had her set at. She

> was

> sent home with her external pieces and four programs. After each day or

> so,

> if she still is not responding, we will try the next program. Each program

> is louder and louder. If we reach the fourth program, and she still

> doesn't

> respond, next week they will send us home with new programs to try. I'm

> sorry if this sounds confusing, but we are learning as we go as well.

> Basically, she is not responding to any sound with her implant on. But, in

> her defense, she has never heard a thing in her life. It is normal for a

> child like Meagan to have to learn to respond to sound. Some kids will

> respond immediately, and others will show responses days later. She did

> not

> respond today; we hope she will respond later this week. If she doesn't,

> there is still room for adjustment with her programs. Meagan will not hear

> speech with her implant (according to medicine), but we are hoping to

> benefit her with any kind of sound, even the slightest. If it is God's

> will,

> speech will be heard. You can't stop hoping for that! We'll keep you

> updated

>

> , mommy to Meagan (CHaRgE) and 2 year old twins, and big

> brother 4 years, married to the best daddy in the world for 9 years!

>

>

[Guest guest]

That is great - good luck, be sure to keep us informed as how she is

responding.

I am very curious, b/c they would not implant as we were told she

would not respond to speech and we explained that any sound, environment etc

would be an asset to her development.

Cathie, mom to

[Guest guest]

Can I ask how old Meagan is?

Another reason they would not implant is they said she is to old, she

is now 11, and is probaby to late since she has never rec;d any hearing to the

brain. (we have been pursuing this for 8 years!)

Cathie, Mom to

[Guest guest]

,

Our daughter has had her CI now for 3 1/2 years. The progress with it

has been very slow, and there were times that the doctors, audiologists, and

even we wondered if she was getting any benefit from it. But she's been turning

to her name now for about a year, and recently, since she received an upgraded

processor last month, she has started noticing environmental sounds like a loud

clock ticking or the hum of fluorescent lights. It may seem like a long and

slow road, but Meagan may benefit in the long run and surprise everyone. Also,

we were told that kids typically hear environmental sounds more easily and

quickly than they do speech with a CI, but this has been just the opposite for

. She never noticed one environmental sound until she received her new

processor.

I know how disappointing it can seem when your child doesn't seem to respond,

and it's so hard to be patient, especially when you may be talking in terms of

months or even years. But don't give up hope, and don't let the doctors talk

you out of that hope, either.

Keep us posted on Meagan's results.

, mom to (4)

http://kauffmanlak.blogspot.com/

__________________________________________________

[Guest guest]

, this is so reassuring. Thanks. When they initially tested s' CI

during surgery, did they get a brain response? In Meagan's case they did not

That is why they say she will not hear speech. They are quick to say she

still may have some hearing, but most likely not speech. I just don't know

enough about the CI to understand this. I have also heard that once sound is

being heard by the child, the ability to hear that sound increases more and

more. Is this true? These are questions I need to ask my audiologist next

week apparently. But, sometimes personal stories answer these types of

questions much better. Thanks to everyone for your thoughts and prayers and

bits of info you've passed along!

, mommy to Meagan (CHaRgE) and 2 year old twins, and big brother

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

-- Re: Meagan's implant was turned on today...

,

Our daughter has had her CI now for 3 1/2 years. The progress with it

has been very slow, and there were times that the doctors, audiologists, and

even we wondered if she was getting any benefit from it. But she's been

turning to her name now for about a year, and recently, since she received

an upgraded processor last month, she has started noticing environmental

sounds like a loud clock ticking or the hum of fluorescent lights. It may

seem like a long and slow road, but Meagan may benefit in the long run and

surprise everyone. Also, we were told that kids typically hear environmental

sounds more easily and quickly than they do speech with a CI, but this has

been just the opposite for . She never noticed one environmental sound

until she received her new processor.

I know how disappointing it can seem when your child doesn't seem to respond

and it's so hard to be patient, especially when you may be talking in terms

of months or even years. But don't give up hope, and don't let the doctors

talk you out of that hope, either.

Keep us posted on Meagan's results.

, mom to (4)

http://kauffmanlak.blogspot.com/

__________________________________________________

[Guest guest]

Two years, two months old. Talk to Simon. I think is an older

CHARGEr, and she was just implanted this past spring! Hmmm, that's

interesting what your doc said.

, mommy to Meagan (CHaRgE) and 2 year old twins, and big brother

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

[Guest guest]

-

I can only imagine your mixed emotions of excitement and reserved

expectations. You are facing a long road of uncertainty. I hope you get

enough little encouragements along the way to make the trip less stressful!

Michele W

Aubrie's mom

[Guest guest]

Does anyone know if it's possible to hook newer processors up to chochlear

implants? Maybe today's technology doesn't allow for certain sounds to be

heard, but possibly a newer processor design or type of programming would allow

for it.

(mom to Evan, 17.5 months)

and Melton wrote:

, this is so reassuring. Thanks. When they initially tested

s' CI

during surgery, did they get a brain response? In Meagan's case they did not

That is why they say she will not hear speech. They are quick to say she

still may have some hearing, but most likely not speech. I just don't know

enough about the CI to understand this. I have also heard that once sound is

being heard by the child, the ability to hear that sound increases more and

more. Is this true? These are questions I need to ask my audiologist next

week apparently. But, sometimes personal stories answer these types of

questions much better. Thanks to everyone for your thoughts and prayers and

bits of info you've passed along!

, mommy to Meagan (CHaRgE) and 2 year old twins, and big brother

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

-- Re: Meagan's implant was turned on today...

,

Our daughter has had her CI now for 3 1/2 years. The progress with it

has been very slow, and there were times that the doctors, audiologists, and

even we wondered if she was getting any benefit from it. But she's been

turning to her name now for about a year, and recently, since she received

an upgraded processor last month, she has started noticing environmental

sounds like a loud clock ticking or the hum of fluorescent lights. It may

seem like a long and slow road, but Meagan may benefit in the long run and

surprise everyone. Also, we were told that kids typically hear environmental

sounds more easily and quickly than they do speech with a CI, but this has

been just the opposite for . She never noticed one environmental sound

until she received her new processor.

I know how disappointing it can seem when your child doesn't seem to respond

and it's so hard to be patient, especially when you may be talking in terms

of months or even years. But don't give up hope, and don't let the doctors

talk you out of that hope, either.

Keep us posted on Meagan's results.

, mom to (4)

http://kauffmanlak.blogspot.com/

__________________________________________________

[Guest guest]

Thanks for the update!!! Good healing is a wonderful start!

pam

Meagan's implant was turned on today...

Hi everyone, just a quick update on Meagan's " turn on " day. We met with her

ENT who did the surgery, and he checked her incision and ears. She is

battling an ear infection at this time, but it seems to already be on it's

way out. Her incision looks great he says. After the quick check up, we

drove to PCH for the turn on. We were warned that if there was going to be a

day that she wouldn't respond, it would be today. When they turn her on,

they do it at a very low decibel, then work their way up (as to not

traumatize her with too much sound to start with). She did not respond today

to any sound that was generated at the volumes they had her set at. She was

sent home with her external pieces and four programs. After each day or so,

if she still is not responding, we will try the next program. Each program

is louder and louder. If we reach the fourth program, and she still doesn't

respond, next week they will send us home with new programs to try. I'm

sorry if this sounds confusing, but we are learning as we go as well.

Basically, she is not responding to any sound with her implant on. But, in

her defense, she has never heard a thing in her life. It is normal for a

child like Meagan to have to learn to respond to sound. Some kids will

respond immediately, and others will show responses days later. She did not

respond today; we hope she will respond later this week. If she doesn't,

there is still room for adjustment with her programs. Meagan will not hear

speech with her implant (according to medicine), but we are hoping to

benefit her with any kind of sound, even the slightest. If it is God's will,

speech will be heard. You can't stop hoping for that! We'll keep you updated

, mommy to Meagan (CHaRgE) and 2 year old twins, and big brother

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

[Guest guest]

cathie mum has a neighboug accr4os from her work who is sixty and was

implanted last year so it can b done when ur quite old so donno wat ur drs

ron bout there

>

> Thanks for the update!!! Good healing is a wonderful start!

> pam

>

> Meagan's implant was turned on today...

>

> Hi everyone, just a quick update on Meagan's " turn on " day. We met with

> her

> ENT who did the surgery, and he checked her incision and ears. She is

> battling an ear infection at this time, but it seems to already be on it's

> way out. Her incision looks great he says. After the quick check up, we

> drove to PCH for the turn on. We were warned that if there was going to be

> a

> day that she wouldn't respond, it would be today. When they turn her on,

> they do it at a very low decibel, then work their way up (as to not

> traumatize her with too much sound to start with). She did not respond

> today

> to any sound that was generated at the volumes they had her set at. She

> was

> sent home with her external pieces and four programs. After each day or

> so,

> if she still is not responding, we will try the next program. Each program

> is louder and louder. If we reach the fourth program, and she still

> doesn't

> respond, next week they will send us home with new programs to try. I'm

> sorry if this sounds confusing, but we are learning as we go as well.

> Basically, she is not responding to any sound with her implant on. But, in

> her defense, she has never heard a thing in her life. It is normal for a

> child like Meagan to have to learn to respond to sound. Some kids will

> respond immediately, and others will show responses days later. She did

> not

> respond today; we hope she will respond later this week. If she doesn't,

> there is still room for adjustment with her programs. Meagan will not hear

> speech with her implant (according to medicine), but we are hoping to

> benefit her with any kind of sound, even the slightest. If it is God's

> will,

> speech will be heard. You can't stop hoping for that! We'll keep you

> updated

>

>

> , mommy to Meagan (CHaRgE) and 2 year old twins, and big

> brother 4 years, married to the best daddy in the world for 9 years!

>

>

[Guest guest]

,

I remember them testing 's electrodes after surgery to make sure all were

firing, but I don't remember if they said anything about a brain response or

what those results were. did have a " functional MRI " before she was

approved for the implant, though. It was an experimental procedure that was

being tested at just a few hospitals then, and it actually showed by color on

the brain image whether sound was reaching certain parts of the brain. For

, both the environmental sounds and speech reached the brain, although the

speech seemed to elicit more of a response--which would be in tune with the

results we've seen from her implant. I'm not sure if the functional MRI is used

more widespread now or if it's still in the experimental stages. Is this what

they used for Meagan in the OR?

I think it would make sense that if a child were to hear a certain sound, they

would begin to hear it better and better as they heard it more and more. Deaf

children have to learn to listen and process sounds and learn what to do with

those sounds, so repetition is important. Have they mentioned auditory training

for Meagan yet? That is usually a big component of the CI process. Honestly,

didn't benefit much from auditory training for a long, long time--at least

not any visible benefit. But again, I think that was just a case of it being a

really slow process for her as compared to other kids. She was the first child

with multiple health issues to be implanted here at our hospital, so it's been a

learning process for everyone involved.

Do you sign with Meagan? We still sign with , and she also uses a

picture system at school. We've found that the total communication approach

helps fill in all the gaps for her.

Good luck--I'll be hoping that you see some results!

, mom to (4)

http://kauffmanlak.blogspot.com/

__________________________________________________

[Guest guest]

,

Yes, you can upgrade the external CI processor very easily--it's as easy as

transferring the child's programs to the new processor and putting the new

magnet on. just received a new processor last month. The new model

supposedly has a clearer sound, especially for sounds in certain ranges. We can

already see a difference with noticing new sounds with it on.

We were given a " coupon " when first received her CI that allowed us to

upgrade to a new processor for free if one came out within three years. (We

just barely made it!) I think after that first one, you have to pay for the

upgrade (in the $6,000 range). A lot of insurances won't pay for the upgrade,

but our audiologist said they are starting to have more luck with appeals.

, mom to (4)

http://kauffmanlak.blogspot.com/

__________________________________________________

[Guest guest]

Fingers crossed that the next couple of weeks bring some sound!!

keep us posted its the next phase for Amelie if her nerve is intact awaiting

MRI.

and anxiously hoping your works!! good luck Les x

>

> ,

>

> Yes, you can upgrade the external CI processor very easily--it's as easy

> as transferring the child's programs to the new processor and putting the

> new magnet on. just received a new processor last month. The new model

> supposedly has a clearer sound, especially for sounds in certain ranges. We

> can already see a difference with noticing new sounds with it on.

>

> We were given a " coupon " when first received her CI that allowed us

> to upgrade to a new processor for free if one came out within three years.

> (We just barely made it!) I think after that first one, you have to pay for

> the upgrade (in the $6,000 range). A lot of insurances won't pay for the

> upgrade, but our audiologist said they are starting to have more luck with

> appeals.

>

> , mom to (4)

> http://kauffmanlak.blogspot.com/

> __________________________________________________

>

[Guest guest]

I take it that's only the case if you have coverage for hearing testing and

aides to begin with. Our insurance excludes the entire category of

" neurodevelopmental " --which includes hearing testing, aides, and I would assume

CIs too. I'm glad that there are some insurances out there that cover it

though.

(mom to Evan, 17.5 months)

Kauffman wrote:

,

Yes, you can upgrade the external CI processor very easily--it's as easy as

transferring the child's programs to the new processor and putting the new

magnet on. just received a new processor last month. The new model

supposedly has a clearer sound, especially for sounds in certain ranges. We can

already see a difference with noticing new sounds with it on.

We were given a " coupon " when first received her CI that allowed us to

upgrade to a new processor for free if one came out within three years. (We just

barely made it!) I think after that first one, you have to pay for the upgrade

(in the $6,000 range). A lot of insurances won't pay for the upgrade, but our

audiologist said they are starting to have more luck with appeals.

, mom to (4)

http://kauffmanlak.blogspot.com/

__________________________________________________

[Guest guest]

True Jess is older than Meagan. She was implanted at end of March this

year. She was just 2 months short of 6. BUT, I seem to recall Tim

Hartshorn telling us (?) was implanted at around 13 years and they are

very glad of the decision.

Interestingly, the audiologist talked us into it and her measure of success

has never been about speech but to support her vision which is not

particularly good with risk of total loss etc.

Everything we had read was all about how they must be implanted early but of

course this does not take into account that it is not all about speech which

of course if it happens is fantastic but parents of children with additional

needs generally have a broader view. Besides which you spend the first few

years just fighting for their life so no time for luxuries like hearing so

by time you have space to consider this, are they beyond the age limit

(which is what? 6 rings a bell. We were being told how she was approaching

upper limit etc but n not sure what difference this would have made in a

girl who is quite slow on the language stakes anyway).

Not a lot to report on the CI front. She responds very well in testing but

we barely see any response in everyday life. What this is all about I don't

quite know. Ignoring? Not knowing what she has heard? The testing room is

such an artificial environment that maybe she needs more imput to make sense

of the real world, but with what time? Right now, just getting some sleep

out of her is the absolute priority as no functioning without.

Sorry, wandering from CI issue now and stealing Meagan's thunder!

Hope, , that you get more positive results as you go along, even if

this just involves her removing the implant. That is how we started.

Refusal to wear it which indicated alien concept going on.

Best of luck............

Flo ('s mum)

>

> Two years, two months old. Talk to Simon. I think is an older

> CHARGEr, and she was just implanted this past spring! Hmmm, that's

> interesting what your doc said.

>

> , mommy to Meagan (CHaRgE) and 2 year old twins, and big

> brother 4 years, married to the best daddy in the world for 9 years!

>

>

[Guest guest]

,

Our insurance excludes all things hearing-related too--hearing aids, auditory

testing, auditory training, etc.--but it DID pay for the implant! Don't ask me

what criteria they use where they approve one thing but disregard all the

others. We had trouble getting the CI approved--we had to appeal twice and had

to have lots of letters written by 's ENT, audiologist, speech therapist,

developmental ped, etc. We were finally approved the evening before 's CI

surgery, which was scheduled for the next morning at 7:30 so we were sweating

bullets! But even though they paid for her CI equipment and surgery, they still

won't pay for her mappings or auditory testing. I don't understand health

insurance! But I'm just grateful they decided to pay for the CI.

, mom to (4)

http://kauffmanlak.blogspot.com/

__________________________________________________

[Guest guest]

Flo,

's results are like this, too. She has always tested beautifully in the

booth with her CI. She's been down in the 15-20 dB range in the booth for a

couple of years now. But this certainly isn't consistent with her everyday

response to it. I think you've hit on two important things--not knowing what to

do with the sounds in everyday life, and the choice to ignore. can be a

champion ignorer when she wants to be! :-)

, mom to (4)

http://kauffmanlak.blogspot.com/

__________________________________________________