Discouraged

[Guest guest]

> Now he has the CI and again seems to understand so much of what we say,

but

> he doesn't express himself with any word approximations.

If you question the appropriateness of his map, can't you ask them to do NRT

testing to see if the map is in line with what the testing thinks it should

be at? (Not sure if Clarion has this capability, but the Nucleus devices

do.) Does his speech processer hold more than one map? Ask for a second map

with everything (T & C levels) lowered. This way, you can test him with a

stronger map, and if it doesn't work for him, you can go back to the other

map.

> So I ask myself

> again, if he understands what we're saying and now supposedly hears all

the

> sounds of the words, why can't he say them?

When JD was this age, getting him to say words or sounds was like pulling

teeth - he just wouldn't do it. BUT, at bathtime and in the car, he would

babble away. Needless to say, we took a LOT of rides in the car just so he

would practice babbling. But if he thought you were listening to what he was

saying, he would clam right up. When he was old enough (about 2 1/2) I had a

computer game on that was operated with a Joystick. I let him play with

that, and low and behold, he would talk back to the computer game. Letting

him play on that for about 1/2 hour each day became routine for us - of

course they were all sound based games. Since then, I haven't been able to

shut him up! Caught myself one day wondering if I could get away with

supergluing his mouth shut. ;-)

> Every therapy session the therapist gives me little tips

> which are always things I am already doing.

Frustrating. Have you tried asking her questions or asking for reading

material? Conference suggestions? Try to think of things you can ask her

about things you would like to know about. She may just be used to her

'average' parent who isn't quite up on things as you are.

> I know this is true, but I get

> to a point sometimes when I'm tired of doing it over and over and I just

need

> a reward to keep me going.

Are you keeping a daily journal? If not, then perhaps you should. Not only

do you use it to record what you're working on, how he responded, what you

plan to do next, etc, but also use it to record your feelings. Many times

it's what is needed to work through some problem or to 'brainstorm' a

solution. I know keeping one during JD's early years really helped me.

> It wouldn't take much. I just want to

> communicate with my son. Whether it was through speech or with sign I

would

> just love to be able to have a dialogue back and forth.

That's quite reasonable. I think it was after JD had been aided for about a

year and a half before we had an exchange that could be considered dialogue.

I do remember it was in the car, and I know I wrote it in my journal, and

feeling SO excited!

Hugs,

Kay

[Guest guest]

> Now he has the CI and again seems to understand so much of what we say,

but

> he doesn't express himself with any word approximations.

If you question the appropriateness of his map, can't you ask them to do NRT

testing to see if the map is in line with what the testing thinks it should

be at? (Not sure if Clarion has this capability, but the Nucleus devices

do.) Does his speech processer hold more than one map? Ask for a second map

with everything (T & C levels) lowered. This way, you can test him with a

stronger map, and if it doesn't work for him, you can go back to the other

map.

> So I ask myself

> again, if he understands what we're saying and now supposedly hears all

the

> sounds of the words, why can't he say them?

When JD was this age, getting him to say words or sounds was like pulling

teeth - he just wouldn't do it. BUT, at bathtime and in the car, he would

babble away. Needless to say, we took a LOT of rides in the car just so he

would practice babbling. But if he thought you were listening to what he was

saying, he would clam right up. When he was old enough (about 2 1/2) I had a

computer game on that was operated with a Joystick. I let him play with

that, and low and behold, he would talk back to the computer game. Letting

him play on that for about 1/2 hour each day became routine for us - of

course they were all sound based games. Since then, I haven't been able to

shut him up! Caught myself one day wondering if I could get away with

supergluing his mouth shut. ;-)

> Every therapy session the therapist gives me little tips

> which are always things I am already doing.

Frustrating. Have you tried asking her questions or asking for reading

material? Conference suggestions? Try to think of things you can ask her

about things you would like to know about. She may just be used to her

'average' parent who isn't quite up on things as you are.

> I know this is true, but I get

> to a point sometimes when I'm tired of doing it over and over and I just

need

> a reward to keep me going.

Are you keeping a daily journal? If not, then perhaps you should. Not only

do you use it to record what you're working on, how he responded, what you

plan to do next, etc, but also use it to record your feelings. Many times

it's what is needed to work through some problem or to 'brainstorm' a

solution. I know keeping one during JD's early years really helped me.

> It wouldn't take much. I just want to

> communicate with my son. Whether it was through speech or with sign I

would

> just love to be able to have a dialogue back and forth.

That's quite reasonable. I think it was after JD had been aided for about a

year and a half before we had an exchange that could be considered dialogue.

I do remember it was in the car, and I know I wrote it in my journal, and

feeling SO excited!

Hugs,

Kay

[Guest guest]

> Now he has the CI and again seems to understand so much of what we say,

but

> he doesn't express himself with any word approximations.

If you question the appropriateness of his map, can't you ask them to do NRT

testing to see if the map is in line with what the testing thinks it should

be at? (Not sure if Clarion has this capability, but the Nucleus devices

do.) Does his speech processer hold more than one map? Ask for a second map

with everything (T & C levels) lowered. This way, you can test him with a

stronger map, and if it doesn't work for him, you can go back to the other

map.

> So I ask myself

> again, if he understands what we're saying and now supposedly hears all

the

> sounds of the words, why can't he say them?

When JD was this age, getting him to say words or sounds was like pulling

teeth - he just wouldn't do it. BUT, at bathtime and in the car, he would

babble away. Needless to say, we took a LOT of rides in the car just so he

would practice babbling. But if he thought you were listening to what he was

saying, he would clam right up. When he was old enough (about 2 1/2) I had a

computer game on that was operated with a Joystick. I let him play with

that, and low and behold, he would talk back to the computer game. Letting

him play on that for about 1/2 hour each day became routine for us - of

course they were all sound based games. Since then, I haven't been able to

shut him up! Caught myself one day wondering if I could get away with

supergluing his mouth shut. ;-)

> Every therapy session the therapist gives me little tips

> which are always things I am already doing.

Frustrating. Have you tried asking her questions or asking for reading

material? Conference suggestions? Try to think of things you can ask her

about things you would like to know about. She may just be used to her

'average' parent who isn't quite up on things as you are.

> I know this is true, but I get

> to a point sometimes when I'm tired of doing it over and over and I just

need

> a reward to keep me going.

Are you keeping a daily journal? If not, then perhaps you should. Not only

do you use it to record what you're working on, how he responded, what you

plan to do next, etc, but also use it to record your feelings. Many times

it's what is needed to work through some problem or to 'brainstorm' a

solution. I know keeping one during JD's early years really helped me.

> It wouldn't take much. I just want to

> communicate with my son. Whether it was through speech or with sign I

would

> just love to be able to have a dialogue back and forth.

That's quite reasonable. I think it was after JD had been aided for about a

year and a half before we had an exchange that could be considered dialogue.

I do remember it was in the car, and I know I wrote it in my journal, and

feeling SO excited!

Hugs,

Kay

[Guest guest]

In a message dated 12/14/2002 8:31:35 AM Pacific Standard Time,

maryemapa@... writes:

> I know there is at least one

> family on this list who used sign with their children who now have implants

We signed with Neal. We still do since his language base is fairly small

without it, but it's tapering off. I think that having it as a background

has helped Neal transition to oral better than if he had had no language to

start with. So if were to pick up a few signs to make it easier to have

a semi-conversation, I don't think it would stunt his ability to learn oral

language. I don't know if I would want to be teaching both *languages* at

the same time though. That might be hard on the kid. This is just based on

my personal expereince. I'm sure there are plenty of others with differing

experiences and opinions.

~Rhonda~

Mom to Audrey, 5 1/2, hearing & Neal, 3, CII 6-11-02

[Guest guest]

In a message dated 12/14/2002 8:31:35 AM Pacific Standard Time,

maryemapa@... writes:

> I know there is at least one

> family on this list who used sign with their children who now have implants

We signed with Neal. We still do since his language base is fairly small

without it, but it's tapering off. I think that having it as a background

has helped Neal transition to oral better than if he had had no language to

start with. So if were to pick up a few signs to make it easier to have

a semi-conversation, I don't think it would stunt his ability to learn oral

language. I don't know if I would want to be teaching both *languages* at

the same time though. That might be hard on the kid. This is just based on

my personal expereince. I'm sure there are plenty of others with differing

experiences and opinions.

~Rhonda~

Mom to Audrey, 5 1/2, hearing & Neal, 3, CII 6-11-02

[Guest guest]

In a message dated 12/14/2002 8:31:35 AM Pacific Standard Time,

maryemapa@... writes:

> I know there is at least one

> family on this list who used sign with their children who now have implants

We signed with Neal. We still do since his language base is fairly small

without it, but it's tapering off. I think that having it as a background

has helped Neal transition to oral better than if he had had no language to

start with. So if were to pick up a few signs to make it easier to have

a semi-conversation, I don't think it would stunt his ability to learn oral

language. I don't know if I would want to be teaching both *languages* at

the same time though. That might be hard on the kid. This is just based on

my personal expereince. I'm sure there are plenty of others with differing

experiences and opinions.

~Rhonda~

Mom to Audrey, 5 1/2, hearing & Neal, 3, CII 6-11-02

[Guest guest]

My philosophy when I implanted Hayley was to give her access to

environmental sounds and for safety reasons. She was 10 and just implanted

in August. Her progress is good, actually far better than I expected, but

she has had eight years of speech therapy thru the schools.

Instead of looking for a reward from - he HAS only had it for four

months, why not take a break and reward yourself for all the hard work you

do? You really deserve it and your husband recognizes that too. Go to

dinner with him. Bake some Christmas cookies or make some home made

ornaments and enjoy that way. I am good at telling people they should

do this, but not good at it myself.

Also, you mention that you wouldn't mind a conversation in sign. I am not

really knowledgeable about AV - but it might be something you could look

into - although I am not sure what your therapist would think about that.

Maybe try a few signs and see how he responds? I know there is at least one

family on this list who used sign with their children who now have implants.

Best to you,

_________________________________________________________________

Protect your PC - get McAfee.com VirusScan Online

http://clinic.mcafee.com/clinic/ibuy/campaign.asp?cid=3963

[Guest guest]

My philosophy when I implanted Hayley was to give her access to

environmental sounds and for safety reasons. She was 10 and just implanted

in August. Her progress is good, actually far better than I expected, but

she has had eight years of speech therapy thru the schools.

Instead of looking for a reward from - he HAS only had it for four

months, why not take a break and reward yourself for all the hard work you

do? You really deserve it and your husband recognizes that too. Go to

dinner with him. Bake some Christmas cookies or make some home made

ornaments and enjoy that way. I am good at telling people they should

do this, but not good at it myself.

Also, you mention that you wouldn't mind a conversation in sign. I am not

really knowledgeable about AV - but it might be something you could look

into - although I am not sure what your therapist would think about that.

Maybe try a few signs and see how he responds? I know there is at least one

family on this list who used sign with their children who now have implants.

Best to you,

_________________________________________________________________

Protect your PC - get McAfee.com VirusScan Online

http://clinic.mcafee.com/clinic/ibuy/campaign.asp?cid=3963

[Guest guest]

<<I don't know if I would want to be teaching both *languages* at

the same time though. That might be hard on the kid. This is just based on

my personal expereince. I'm sure there are plenty of others with differing

experiences and opinions.>>

I think this may depend on the sign system used. If you are using SEE (Signed

Exact English), each sign presented is just another form of the word being said

and it is quite natural for a child to pick up. I have taken SEE courses for a

couple of years, as they are offered, and I've had to really study to learn to

use a sign system (even though I had a small amount of ASL from college). My

son, on the other hand, is surrounded by both SEE and voice at school and

signing is as natural to him as speaking (and he does both VERY well!) is

nearly age-appropriate now in both speech and sign and two years ago, he had the

language skills of an 18-month-old...at age 4.6. Of course, this can depend on

the child too but as much as I'd like to think is a genius, he's probably

just another typical kid. Whew! :-)

Carol - mom to , 6.7, mod to profound, EVAS

[Guest guest]

<<I don't know if I would want to be teaching both *languages* at

the same time though. That might be hard on the kid. This is just based on

my personal expereince. I'm sure there are plenty of others with differing

experiences and opinions.>>

I think this may depend on the sign system used. If you are using SEE (Signed

Exact English), each sign presented is just another form of the word being said

and it is quite natural for a child to pick up. I have taken SEE courses for a

couple of years, as they are offered, and I've had to really study to learn to

use a sign system (even though I had a small amount of ASL from college). My

son, on the other hand, is surrounded by both SEE and voice at school and

signing is as natural to him as speaking (and he does both VERY well!) is

nearly age-appropriate now in both speech and sign and two years ago, he had the

language skills of an 18-month-old...at age 4.6. Of course, this can depend on

the child too but as much as I'd like to think is a genius, he's probably

just another typical kid. Whew! :-)

Carol - mom to , 6.7, mod to profound, EVAS

[Guest guest]

<<I don't know if I would want to be teaching both *languages* at

the same time though. That might be hard on the kid. This is just based on

my personal expereince. I'm sure there are plenty of others with differing

experiences and opinions.>>

I think this may depend on the sign system used. If you are using SEE (Signed

Exact English), each sign presented is just another form of the word being said

and it is quite natural for a child to pick up. I have taken SEE courses for a

couple of years, as they are offered, and I've had to really study to learn to

use a sign system (even though I had a small amount of ASL from college). My

son, on the other hand, is surrounded by both SEE and voice at school and

signing is as natural to him as speaking (and he does both VERY well!) is

nearly age-appropriate now in both speech and sign and two years ago, he had the

language skills of an 18-month-old...at age 4.6. Of course, this can depend on

the child too but as much as I'd like to think is a genius, he's probably

just another typical kid. Whew! :-)

Carol - mom to , 6.7, mod to profound, EVAS

[Guest guest]

> Also, you mention that you wouldn't mind a conversation in sign

Please read this article

http://clerccenter.gallaudet.edu/CIEC/conf-presentationsB.doc

It explains that with children who used sign language as their main form of

communication, while you want to give them more auditory input, you can't

ignore their emotional and intellectual growth, so it may be appropriate to

continue using sign with them at times - depending on the child.

I DO know about living an AV lifestyle, my son is an AV graduate, but I also

feel that there are times and situations where you may want to continue some

sign. Was your son more communicative when he was using sign? What is his

frustration level like? If it's high, the use of some sign might be in

order, if it's about the same level as before, then hang in there. I've

heard from some that suddenly they burst forth with oral language. Have you

seen the DVD (or VHS) called Cecelia's Story from Advanced Bionics? It's

free so you might want to surf on over to their site and get yourself a

copy:

http://www.advancedbionics.com/teamclarion/order_cecilia.asp

One of the main messages that comes across is that it may take time - and

it's from a parent's perspective. Sometimes just knowing that other parents

have gone through this can be comforting. I highly encourage you to visit

their site and order this - even if your child has a Nucleus device.

Hugs,

Kay

[Guest guest]

> Also, you mention that you wouldn't mind a conversation in sign

Please read this article

http://clerccenter.gallaudet.edu/CIEC/conf-presentationsB.doc

It explains that with children who used sign language as their main form of

communication, while you want to give them more auditory input, you can't

ignore their emotional and intellectual growth, so it may be appropriate to

continue using sign with them at times - depending on the child.

I DO know about living an AV lifestyle, my son is an AV graduate, but I also

feel that there are times and situations where you may want to continue some

sign. Was your son more communicative when he was using sign? What is his

frustration level like? If it's high, the use of some sign might be in

order, if it's about the same level as before, then hang in there. I've

heard from some that suddenly they burst forth with oral language. Have you

seen the DVD (or VHS) called Cecelia's Story from Advanced Bionics? It's

free so you might want to surf on over to their site and get yourself a

copy:

http://www.advancedbionics.com/teamclarion/order_cecilia.asp

One of the main messages that comes across is that it may take time - and

it's from a parent's perspective. Sometimes just knowing that other parents

have gone through this can be comforting. I highly encourage you to visit

their site and order this - even if your child has a Nucleus device.

Hugs,

Kay

[Guest guest]

> Also, you mention that you wouldn't mind a conversation in sign

Please read this article

http://clerccenter.gallaudet.edu/CIEC/conf-presentationsB.doc

It explains that with children who used sign language as their main form of

communication, while you want to give them more auditory input, you can't

ignore their emotional and intellectual growth, so it may be appropriate to

continue using sign with them at times - depending on the child.

I DO know about living an AV lifestyle, my son is an AV graduate, but I also

feel that there are times and situations where you may want to continue some

sign. Was your son more communicative when he was using sign? What is his

frustration level like? If it's high, the use of some sign might be in

order, if it's about the same level as before, then hang in there. I've

heard from some that suddenly they burst forth with oral language. Have you

seen the DVD (or VHS) called Cecelia's Story from Advanced Bionics? It's

free so you might want to surf on over to their site and get yourself a

copy:

http://www.advancedbionics.com/teamclarion/order_cecilia.asp

One of the main messages that comes across is that it may take time - and

it's from a parent's perspective. Sometimes just knowing that other parents

have gone through this can be comforting. I highly encourage you to visit

their site and order this - even if your child has a Nucleus device.

Hugs,

Kay

[Guest guest]

Can't sleep. Heart racing like a bandit again--high 120s. Converted Monday pm

and Wed pm was right back in AF--have a bad cold with coughing sneezing etc and

have also had nose bleeds. I took some decongestant--Drixoral. Does anyone know

if this can bring on AF episodes? The pharmacist said there would be no

interaction with the coumadin. My Vanderbilt RN daughter said it could raise bp

and heart rate too. Guess I should have taken Debbi's and Chris' advice and

called the MD ASAP. Conversion dissuaded me. Must make a presentation to

visitors from another firm tomorrow am -which I spent the last two days

preparing for- or I would go straight to the Heart Center. Have been in AF more

than out since last Friday. Can't say I look forward to more poke and grope and

duuuuhhhs, waiting for an hour for a few minute consultation. Or being put in

the hospital.

Cantankerous

Grrrrrr

[Guest guest]

Shelby - I can sympathize with the poking and proding, but perhaps you should at

least call your cardiologist and make an appointment for right after your

presentation.. perhaps he/she can perscribe something that will at least bring

your heart rate under control.. and then if it's under control, it may convert

back on it's own.

I personally stay away from all drugs for colds.. with the exception of

Coricedin BP which is made for people with high blood pressure, and presumably

lacking all the antihistamines that can raise it and heart rate. I have only

taken it a couple times and don't remember a racing heart. I also try lots of

home remedies, such as breathing hot steam and resting, and eating chicken

soup... I guess I'd rather be miserable with a cold than in afib.

Hope you mend soon and go back into rhythm, and that your presentation goes

well. Remember that your health is much more important than any presentation,

and most normal people would understand why you had to miss it or postpone.

Stef

Shelby Kurzius wrote:

Can't sleep. Heart racing like a bandit again--high 120s. Converted Monday pm

and Wed pm was right back in AF--have a bad cold with coughing sneezing etc and

have also had nose bleeds. I took some decongestant--Drixoral. Does anyone know

if this can bring on AF episodes? The pharmacist said there would be no

interaction with the coumadin. My Vanderbilt RN daughter said it could raise bp

and heart rate too. Guess I should have taken Debbi's and Chris' advice and

called the MD ASAP. Conversion dissuaded me. Must make a presentation to

visitors from another firm tomorrow am -which I spent the last two days

preparing for- or I would go straight to the Heart Center. Have been in AF more

than out since last Friday. Can't say I look forward to more poke and grope and

duuuuhhhs, waiting for an hour for a few minute consultation. Or being put in

the hospital.

Cantankerous

Grrrrrr

[Guest guest]

Shelby,

The standard wait time is 48 hours before seeking treatment. I

usually wait about 36.......especially if you aren't on Coumadin.

http://www.yourhealthbase.com/forum/read.php?f=3 & i=7507 & t=7507

See this link from a really intelligent Afibber who just had an

ablation done at the Cleveland clinic.

Debbi, OU Alum in OKC

[Guest guest]

Get thee to Heart Center, girlfriend, you may also have lung

infection or other problems...........I thought I was in Afib a

couple of weeks ago and kept putting off going, went and found out I

had a lung infection........

Debbi, OU Alum in OKC

or I would go straight to the Heart Center. Have been in AF more than

out since last Friday. Can't say I look forward to more poke and

grope and duuuuhhhs, waiting for an hour for a few minute

consultation. Or being put in the hospital.

> Cantankerous

> Grrrrrr

removed]

[Guest guest]

on 2/26/04 3:52 AM, Shelby Kurzius at shelbyck@... wrote:

> Can't sleep. Heart racing like a bandit again--high 120s. Converted Monday pm

> and Wed pm was right back in AF--have a bad cold with coughing sneezing etc

> and have also had nose bleeds. I took some decongestant--Drixoral. Does anyone

> know if this can bring on AF episodes?

Yes! Just about all decongestants contain pseudophedrine which according to

the Atrial Fibrillation foundation:

" Pseudoephedrine can precipitate atrial fibrillation or make the ventricular

rate faster than it otherwise would be in susceptible persons. "

http://www.affacts.org/Questions/otc_meds.html

I believe many ANTIHISTAMINES are ok, but stay away from the

decongestants...

jack

[Guest guest]

Sorry, in my last post, I listed the subject as " depressed " and I meant to type

" discouraged. "

Still brain dead from this awful flu.

Loretta

[Guest guest]

Shelby - you might consider the stress you were under to do this presentation as

the underlying cause of your afib... since once it was complete and you relaxed,

poof... away went the afib! Can't guess about this, but perhaps there is some

correlation?

Stef

Shelby Kurzius wrote:

Debbi

Thanks for the good words--gave my presentation and it went extremely well

although I felt like I was conning our visitors in the sense that I wasn't

really more than half alert. After it was over went straight to the Heart Center

and--predictably-converted before the EKG they gave. But the memory readouts on

my monitor proved quite useful in convincing the staff that they should see what

is going on and that I'm not really crazy (helped me too on the latter). Think I

very likely need an adjustment in my medicines--will see the EP on Tuesday.

Jack Driscoll's input on the connectivity of pseudoephidrine to AF onset is an

eyeopener. I've emptied my shelves of all that stuff---but the pharmacist did

say Sudafed was ok to take---come to think of it all I asked about was if

decongestants

were contra-indicated if one was on coumadin. They answers we get are truly

shaped by our questions!

By the way I'm a guy.

Feeling a lot more perky-and hopeful

Shelby

[Guest guest]

In a message dated 2/26/2004 1:41:10 AM Pacific Standard Time,

shelbyck@... writes:

<< Converted Monday pm and Wed pm was right back in AF--have a bad cold with

coughing sneezing etc and have also had nose bleeds. I took some

decongestant--Drixoral. Does anyone know if this can bring on AF episodes? >>

Shelby,

When you recover from your cold, you probably will find relief from afib. I

have long noticed that for me afib seems to intensify whenever I have a virus

of any sort. Now it seems that I only have afib when I have a virus although

fortunately the afib does not visit with every virus. I wouldn't dream of

taking any OTC cold meds because I have read that they can raise heart rate and

blood pressure. Good luck.

in sinus in Seattle