Introduction

[Guest guest]

.. hi jen this is mary ann..i am 31 and have the same story as you...i had a

lump on my right side of throat...they did a needle biopsey and it came back

50/50 of folicullar cancer so i had the surgery to remove my right side of

thyroid...this was last april...when the report came back it showed i had the

cancer so they went back in to take my left side out..and no cancer was found

inthat side ....ohh let me tell you i had tons of blood work before hand and

my thyoid levels were always normal...so this shocked all of my doctors and

surgeans..every one told me it wouldnt be cancer and boom..cancer...i had

100mc of radioactive pill...i wont lie..surgery sucked and the scar sucks...i

can no longer wear vneck shirts....but its not the worse thing in the

world...surgery it self isnt that bad..i was out the next morning..i never

had no meds ...it was like having a really bad soar throat...i was back to

normal in a couple of days..i dont work but i have a baby..at the time he was

16 months old..so it was hard..and rai wasnt that bad either...i just went to

the hospitol and swallowed a pill and came home ..i had to stay ina spare

bedroom for 5 days...i couldnt hangout with hubby or baby...but at least i

was home and not in the hospitol....they gave me a walking dose thats what it

is called...because i had a small amount of cancer ..it was only in my right

side and it was contained in the capsule of the thyroid..but i did have the

huge lump on my throat..it looked like a golf ball.....it was hiddius..well

best of luck to you..and stay in touch if you have any

questions...mocello26@...

[Guest guest]

> Hi everyone.

>

> I was informed of this group from someone who posts on another

board

> that I post on. After reading some of the past posts, I am glad

that

> I was told about this place.

>

> This Thursday I will be having surgery to remove my thyroid. I

had a

> FNB done a few days before Xmas and the results were not able to

> determine whether or not it was cancerous, only that it was

> suspicious. My right thyroid is extremely enlarged, but tests

have

> shown that my thyroid is normal. The doctor has recommended the

> removal of my whole thyroid. From there they will test to see

> whether or not it is cancerous.

>

> I will be in the hospital overnight. This is my first surgery

ever,

> so I am very nervous. I am only 27, so the thought of having a

scar

> on my neck is a frightening thought at the moment, not to mention

any

> of the other complications I have been warned about.

>

> I would appreciate any words of wisdom I can receive about what I

can

> expect after my surgery. When can I return back to my normal

> routine, how long it takes for the wound area to heal, etc.

>

> Thanks so much-

> Jen

Jen,

Having a scar isn't the worst thing in the world. I was nervous

about how it would look at first too. I am 25. Anyways, people

would ask me what happened and I got sick of going through my whole

cancer story so I made something up. It was fun to mess with

people. This is what I said. You're never gonna believe this. My

husband and I were fishing with the boys. I was trying to help

and my husband was fishing in front of us. He didn't notice me and

he went to cast. Well, the hook got stuck in my neck and when he

pulled, it pulled right through the front of my neck.

People stare at my with there mouths open in shock. It's pretty

funny. Then I of course tell them what really happened. It's

amazing how gullible people actually are. I hope your surgery goes

well and everything turns out good.

[Guest guest]

Hi, Jen. I too was scared before my TT. I was 19 when dx with pap. thyca.

The surgery started at 8 am and took about 7 or 8 hours. I had a neck

dissection on the right side, which removed about 30 cancerous lymph nodes.

My cancer is so invasive it had spread to my lungs as well.

I was in the hospital after the TT for about 5 days. I got blood drawn every

few hours to check calcium levels. Testing calcium indicated whether or not

your parathyroids have been damaged at all. Will you be keeping your

parathyroids? If not, youll have to take calcium supplements.

M scar healed pretty quickly. It looks very obvious even now; my docs says

its b/c I am so young that my circulation to the area was too sufficient,

therefore the incision has a good amount of scar tissue around it. I had a

lot of swelling after the surgery. There was a drain to take care of that on

one side of my neck....that was taken out before I went home.

When I awoke from surgery I had the drain, a big incision on my neck, a

catheter, and circulation pumps on my legs. I recall being very grouchy. I

wanted to get up and move but wasnt allowed.

Having a private room was a great help.

There wasnt much pain.but I was on Percoset, which also helped me sleep in

that bed. I had alot of trouble sleeping or being comfortable. I was afraid

to move my neck a whole lot, so I was turning my torso instead. Stretching

helps with the stiffness.

I didnt go on any hormone until a month later when I first met my

endocrinologist.

I have been pursuing this cancer dx for a couple years now. I had 3

radiations done along with all the usual scans. Most recently I found out

that I will need another surgery which will give me another scar.

Vitamin E is a good scar healer. Sometimes even now I get some pain in the

area, so heat helps alot to relax the muscles.

I had my surgery November 13 of 2000. I started at a new school, at home

here in Columbus Ohio in January of 2001. I didnt work in addition to school

as I do now though.

Psychologically, I wont ever completely heal from all this. Cancer and its

consequences have had a major impact on my life and identity. Although I'd

never wish it, I have learned so much from having cancer about myself, life,

people, love, anger, and death.

I hope your surgery goes well and that you dont have cancer. Good luck,

youre in my thoughts.

in Columbus,Ohio

Dx w/pap. thyca. well-diff. 11/2000, 19 yrs. old

Metastases to lungs

TT w/pt. neck diss. w/30 cancerous lymph nodes removed on 11/13/2000

RAI's 3/2001, 9/2001, and 7/2002

Metastases to lungs GONE by 7/2002

3 cancerous tumors left in neck, 1/2003

Second surgery needed ASAP, 3/2003?

> "

>Reply-To: Thyca

>To: Thyca

>Subject: Introduction

>Date: Tue, 21 Jan 2003 02:55:18 -0000

>

>Hi everyone.

>

>I was informed of this group from someone who posts on another board

>that I post on. After reading some of the past posts, I am glad that

>I was told about this place.

>

>This Thursday I will be having surgery to remove my thyroid. I had a

>FNB done a few days before Xmas and the results were not able to

>determine whether or not it was cancerous, only that it was

>suspicious. My right thyroid is extremely enlarged, but tests have

>shown that my thyroid is normal. The doctor has recommended the

>removal of my whole thyroid. From there they will test to see

>whether or not it is cancerous.

>

>I will be in the hospital overnight. This is my first surgery ever,

>so I am very nervous. I am only 27, so the thought of having a scar

>on my neck is a frightening thought at the moment, not to mention any

>of the other complications I have been warned about.

>

>I would appreciate any words of wisdom I can receive about what I can

>expect after my surgery. When can I return back to my normal

>routine, how long it takes for the wound area to heal, etc.

>

>Thanks so much-

>Jen

>

>

>

>

>This e-mail support group is one of many free services of ThyCa: Thyroid

>Cancer Survivors' Association, Inc. <web site: www.thyca.org>. If you do

>not wish to belong to this group, you may UNSUBSCRIBE by

>sending a blank e-mail to:

>thyca-unsubscribe

>

>

>

[Guest guest]

Hi, Jen. I too was scared before my TT. I was 19 when dx with pap. thyca.

The surgery started at 8 am and took about 7 or 8 hours. I had a neck

dissection on the right side, which removed about 30 cancerous lymph nodes.

My cancer is so invasive it had spread to my lungs as well.

I was in the hospital after the TT for about 5 days. I got blood drawn every

few hours to check calcium levels. Testing calcium indicated whether or not

your parathyroids have been damaged at all. Will you be keeping your

parathyroids? If not, youll have to take calcium supplements.

M scar healed pretty quickly. It looks very obvious even now; my docs says

its b/c I am so young that my circulation to the area was too sufficient,

therefore the incision has a good amount of scar tissue around it. I had a

lot of swelling after the surgery. There was a drain to take care of that on

one side of my neck....that was taken out before I went home.

When I awoke from surgery I had the drain, a big incision on my neck, a

catheter, and circulation pumps on my legs. I recall being very grouchy. I

wanted to get up and move but wasnt allowed.

Having a private room was a great help.

There wasnt much pain.but I was on Percoset, which also helped me sleep in

that bed. I had alot of trouble sleeping or being comfortable. I was afraid

to move my neck a whole lot, so I was turning my torso instead. Stretching

helps with the stiffness.

I didnt go on any hormone until a month later when I first met my

endocrinologist.

I have been pursuing this cancer dx for a couple years now. I had 3

radiations done along with all the usual scans. Most recently I found out

that I will need another surgery which will give me another scar.

Vitamin E is a good scar healer. Sometimes even now I get some pain in the

area, so heat helps alot to relax the muscles.

I had my surgery November 13 of 2000. I started at a new school, at home

here in Columbus Ohio in January of 2001. I didnt work in addition to school

as I do now though.

Psychologically, I wont ever completely heal from all this. Cancer and its

consequences have had a major impact on my life and identity. Although I'd

never wish it, I have learned so much from having cancer about myself, life,

people, love, anger, and death.

I hope your surgery goes well and that you dont have cancer. Good luck,

youre in my thoughts.

in Columbus,Ohio

Dx w/pap. thyca. well-diff. 11/2000, 19 yrs. old

Metastases to lungs

TT w/pt. neck diss. w/30 cancerous lymph nodes removed on 11/13/2000

RAI's 3/2001, 9/2001, and 7/2002

Metastases to lungs GONE by 7/2002

3 cancerous tumors left in neck, 1/2003

Second surgery needed ASAP, 3/2003?

> "

>Reply-To: Thyca

>To: Thyca

>Subject: Introduction

>Date: Tue, 21 Jan 2003 02:55:18 -0000

>

>Hi everyone.

>

>I was informed of this group from someone who posts on another board

>that I post on. After reading some of the past posts, I am glad that

>I was told about this place.

>

>This Thursday I will be having surgery to remove my thyroid. I had a

>FNB done a few days before Xmas and the results were not able to

>determine whether or not it was cancerous, only that it was

>suspicious. My right thyroid is extremely enlarged, but tests have

>shown that my thyroid is normal. The doctor has recommended the

>removal of my whole thyroid. From there they will test to see

>whether or not it is cancerous.

>

>I will be in the hospital overnight. This is my first surgery ever,

>so I am very nervous. I am only 27, so the thought of having a scar

>on my neck is a frightening thought at the moment, not to mention any

>of the other complications I have been warned about.

>

>I would appreciate any words of wisdom I can receive about what I can

>expect after my surgery. When can I return back to my normal

>routine, how long it takes for the wound area to heal, etc.

>

>Thanks so much-

>Jen

>

>

>

>

>This e-mail support group is one of many free services of ThyCa: Thyroid

>Cancer Survivors' Association, Inc. <web site: www.thyca.org>. If you do

>not wish to belong to this group, you may UNSUBSCRIBE by

>sending a blank e-mail to:

>thyca-unsubscribe

>

>

>

[Guest guest]

Hi, Jen. I too was scared before my TT. I was 19 when dx with pap. thyca.

The surgery started at 8 am and took about 7 or 8 hours. I had a neck

dissection on the right side, which removed about 30 cancerous lymph nodes.

My cancer is so invasive it had spread to my lungs as well.

I was in the hospital after the TT for about 5 days. I got blood drawn every

few hours to check calcium levels. Testing calcium indicated whether or not

your parathyroids have been damaged at all. Will you be keeping your

parathyroids? If not, youll have to take calcium supplements.

M scar healed pretty quickly. It looks very obvious even now; my docs says

its b/c I am so young that my circulation to the area was too sufficient,

therefore the incision has a good amount of scar tissue around it. I had a

lot of swelling after the surgery. There was a drain to take care of that on

one side of my neck....that was taken out before I went home.

When I awoke from surgery I had the drain, a big incision on my neck, a

catheter, and circulation pumps on my legs. I recall being very grouchy. I

wanted to get up and move but wasnt allowed.

Having a private room was a great help.

There wasnt much pain.but I was on Percoset, which also helped me sleep in

that bed. I had alot of trouble sleeping or being comfortable. I was afraid

to move my neck a whole lot, so I was turning my torso instead. Stretching

helps with the stiffness.

I didnt go on any hormone until a month later when I first met my

endocrinologist.

I have been pursuing this cancer dx for a couple years now. I had 3

radiations done along with all the usual scans. Most recently I found out

that I will need another surgery which will give me another scar.

Vitamin E is a good scar healer. Sometimes even now I get some pain in the

area, so heat helps alot to relax the muscles.

I had my surgery November 13 of 2000. I started at a new school, at home

here in Columbus Ohio in January of 2001. I didnt work in addition to school

as I do now though.

Psychologically, I wont ever completely heal from all this. Cancer and its

consequences have had a major impact on my life and identity. Although I'd

never wish it, I have learned so much from having cancer about myself, life,

people, love, anger, and death.

I hope your surgery goes well and that you dont have cancer. Good luck,

youre in my thoughts.

in Columbus,Ohio

Dx w/pap. thyca. well-diff. 11/2000, 19 yrs. old

Metastases to lungs

TT w/pt. neck diss. w/30 cancerous lymph nodes removed on 11/13/2000

RAI's 3/2001, 9/2001, and 7/2002

Metastases to lungs GONE by 7/2002

3 cancerous tumors left in neck, 1/2003

Second surgery needed ASAP, 3/2003?

> "

>Reply-To: Thyca

>To: Thyca

>Subject: Introduction

>Date: Tue, 21 Jan 2003 02:55:18 -0000

>

>Hi everyone.

>

>I was informed of this group from someone who posts on another board

>that I post on. After reading some of the past posts, I am glad that

>I was told about this place.

>

>This Thursday I will be having surgery to remove my thyroid. I had a

>FNB done a few days before Xmas and the results were not able to

>determine whether or not it was cancerous, only that it was

>suspicious. My right thyroid is extremely enlarged, but tests have

>shown that my thyroid is normal. The doctor has recommended the

>removal of my whole thyroid. From there they will test to see

>whether or not it is cancerous.

>

>I will be in the hospital overnight. This is my first surgery ever,

>so I am very nervous. I am only 27, so the thought of having a scar

>on my neck is a frightening thought at the moment, not to mention any

>of the other complications I have been warned about.

>

>I would appreciate any words of wisdom I can receive about what I can

>expect after my surgery. When can I return back to my normal

>routine, how long it takes for the wound area to heal, etc.

>

>Thanks so much-

>Jen

>

>

>

>

>This e-mail support group is one of many free services of ThyCa: Thyroid

>Cancer Survivors' Association, Inc. <web site: www.thyca.org>. If you do

>not wish to belong to this group, you may UNSUBSCRIBE by

>sending a blank e-mail to:

>thyca-unsubscribe

>

>

>

[Guest guest]

I'm in the NW suburbs of Chicago.

[Guest guest]

<< (she understands signing very well, just has a hard time doing it). I have a

lot of questions but I will save them for another email.>>

Hi Jeane,

Thanks for sharing your experience. I wanted to say that my son , who was

diagnosed very late, really blossomed with the TC approach as well. still

has some nice residual hearing and so he is a very verbal child now. Once we

mainstreamed this year (after three years in a Deaf/HOH program), chose

not to sign to us when we're at school and usually not in public. We consider

this his choice and only ask him to sign occasionally so he doesn't lose all he

has learned. (His loss is progressive.) However, even though he doesn't usually

realize it, sign is still a wonderful support mechanism for as I use it

frequently to clarify something he heard incorrectly. I find myself using it

across the table in crowded restaurants or at sporting events where the noise is

overwhelming. also understands what is going on at church services much

better on the days the interpreter is there.

I think it's terrific that you are continuing to use sign to make things easier

for your daughter. As a pediatric occupational therapist, I often think about

the Deaf and HOH kids who don't really have the capability of signing well or at

all and I hope it doesn't discourage families and teachers from using it to

convey language if sign would have been their choice otherwise. I loved reading

your story.

Carol - mom to , mod to profound, LVAS

[Guest guest]

<< (she understands signing very well, just has a hard time doing it). I have a

lot of questions but I will save them for another email.>>

Hi Jeane,

Thanks for sharing your experience. I wanted to say that my son , who was

diagnosed very late, really blossomed with the TC approach as well. still

has some nice residual hearing and so he is a very verbal child now. Once we

mainstreamed this year (after three years in a Deaf/HOH program), chose

not to sign to us when we're at school and usually not in public. We consider

this his choice and only ask him to sign occasionally so he doesn't lose all he

has learned. (His loss is progressive.) However, even though he doesn't usually

realize it, sign is still a wonderful support mechanism for as I use it

frequently to clarify something he heard incorrectly. I find myself using it

across the table in crowded restaurants or at sporting events where the noise is

overwhelming. also understands what is going on at church services much

better on the days the interpreter is there.

I think it's terrific that you are continuing to use sign to make things easier

for your daughter. As a pediatric occupational therapist, I often think about

the Deaf and HOH kids who don't really have the capability of signing well or at

all and I hope it doesn't discourage families and teachers from using it to

convey language if sign would have been their choice otherwise. I loved reading

your story.

Carol - mom to , mod to profound, LVAS

[Guest guest]

<< (she understands signing very well, just has a hard time doing it). I have a

lot of questions but I will save them for another email.>>

Hi Jeane,

Thanks for sharing your experience. I wanted to say that my son , who was

diagnosed very late, really blossomed with the TC approach as well. still

has some nice residual hearing and so he is a very verbal child now. Once we

mainstreamed this year (after three years in a Deaf/HOH program), chose

not to sign to us when we're at school and usually not in public. We consider

this his choice and only ask him to sign occasionally so he doesn't lose all he

has learned. (His loss is progressive.) However, even though he doesn't usually

realize it, sign is still a wonderful support mechanism for as I use it

frequently to clarify something he heard incorrectly. I find myself using it

across the table in crowded restaurants or at sporting events where the noise is

overwhelming. also understands what is going on at church services much

better on the days the interpreter is there.

I think it's terrific that you are continuing to use sign to make things easier

for your daughter. As a pediatric occupational therapist, I often think about

the Deaf and HOH kids who don't really have the capability of signing well or at

all and I hope it doesn't discourage families and teachers from using it to

convey language if sign would have been their choice otherwise. I loved reading

your story.

Carol - mom to , mod to profound, LVAS

[Guest guest]

Welcome back, (or should it be Jeane?),

Congratulations on how well your daughter is doing! You and her dad are

obviously in touch with your daughter's ways and needs and that is why she has

done

so well. So I send you a small round of applause with my welcome.

best - Jill

[Guest guest]

Marie,

I understand your confusion and concerns about aiding. I don't know what the

answer is. We chose to use total communication with our son since he does have

a lot of hearing but he doesn't understand what he hears, we felt he needed

auditory input as well as sign. We use ASL and English as that is the language

we speek in the house. As far as being bilingual, I don't know how well that

will work it may be way to early to tell if he is going to be proficiant as an

oral child, but it's never too young to start introducing him to it in my

opinion. If you are hoping for him to be oral as it sounds like you are, I

would suggest something on the line of cued speech or total communication.

That's my personal recommendation though. The problem with AN is that there is

a large distortion factor there and the sound even if a lot of it is getting

through isn't very clear. Some children even with profound hearing loss develop

and understand very good speech. Others don't understand anything. For this

reason I recommend some form of visual communication but would suggest you not

give up on oral. While there are a lot of professionals out there who still

insist that teaching a child sign will slow their speech progress down there

have been many studies to the contrary. They often use sign with hearing

children to help them develop speech quicker and it works wonderfully in many

cases and reduces frustration. I am not sure what type of sign they have where

you come from, but we use ASL, there is also a type called signed exact english,

or SEE. This is an exact translation of English, so if you are really wanting

him to become oral that may be a good way to go. As far as bilingual, I don't

know how tough that would be and seeing how you don't really know at this point

how well he is going to be able to understand language it may be too early to

tell. I guess my very unprofessional opinion would be to choose one spoken

language and one visual language and use both all the time. Others may have a

very different experience with that and I would have to say they may be right, I

don't know.

You have some very tough decisions ahead of you right now, your son is so young

you really have no idea how well he can hear at all except in dB which really

doesn't mean a whole lot when it comes to AN. I would suggest reading up on AN,

as well as all the different forms of communication before choosing on one

spacific type. There are so many different opinions and options out there that

you really need to find out as much as you can before making a decision. What

is right for me may not be right for you, and what is right for someone else may

not be what's right for you, so take in all kinds of opinions here on the list

as well as professionally and read as much as you can about hearing loss,

choices in communication and then make your decision. Hopefully there will be

others on the list who have bilingual families who can help you out with that

side of things. Hang in there it may seem really overwhelming at first, the

more you learn the easier it gets.

Introduction

Hi,

I have recently joined this group and would like to briefly introduce myself

and my family. My name is Marie, and we (ie my husband and I) have 2

children; Felix is 2 1/4 years old and 4 months. has been

diagnosed with auditory neuropathy with a (somewhat fluctuating) severe to

profound hearing loss. We live in London. While is English, I am German,

and Felix grows up bilingually - something we would really like for as

well, although at the moment we don't even know yet how he will learn language

at all, and are not sure whether to sign, use cued speech or what else - we are

still very much at the beginning. has started to wear one hearing aid (in

his worse ear) for 1-2 hours each day in order to find out whether it helps him

- so far we are not sure whether it does. We hesitate to put the hearing aid in

for too long as we don't want to destroy healthy structure, and his loss is

fluctuating.

Marie

---------------------------------

BT Yahoo! Broadband - Free modem offer, sign up online today and save £80

[Guest guest]

Hi Marie,

Check out Auditory Verbal UK (http://www.oxfordav.co.uk/ click on family pages)

for stories of families who have raised bilingual hearing impaired children.

The profile of tells of a German family raising their daughter with a

severe hearing loss with both German and English. I'm sure there are other

stories out there as well, this is one I just happen to know of offhand.

While the communication option should be made entirely by your family, I thought

you might like to read about how a family has chosen to bring two languages into

their child's life. There are also great UK resources on that site too-- I

actually visit the page often!!

Kerry

Hi,

I have recently joined this group and would like to briefly introduce myself

and my family. My name is Marie, and we (ie my husband and I) have 2

children; Felix is 2 1/4 years old and 4 months. has been

diagnosed with auditory neuropathy with a (somewhat fluctuating) severe to

profound hearing loss. We live in London. While is English, I am German,

and Felix grows up bilingually - something we would really like for as

well, although at the moment we don't even know yet how he will learn language

at all, and are not sure whether to sign, use cued speech or what else - we are

still very much at the beginning. has started to wear one hearing aid (in

his worse ear) for 1-2 hours each day in order to find out whether it helps him

- so far we are not sure whether it does. We hesitate to put the hearing aid in

for too long as we don't want to destroy healthy structure, and his loss is

fluctuating.

Marie

[Guest guest]

Hi Marie,

Check out Auditory Verbal UK (http://www.oxfordav.co.uk/ click on family pages)

for stories of families who have raised bilingual hearing impaired children.

The profile of tells of a German family raising their daughter with a

severe hearing loss with both German and English. I'm sure there are other

stories out there as well, this is one I just happen to know of offhand.

While the communication option should be made entirely by your family, I thought

you might like to read about how a family has chosen to bring two languages into

their child's life. There are also great UK resources on that site too-- I

actually visit the page often!!

Kerry

Hi,

I have recently joined this group and would like to briefly introduce myself

and my family. My name is Marie, and we (ie my husband and I) have 2

children; Felix is 2 1/4 years old and 4 months. has been

diagnosed with auditory neuropathy with a (somewhat fluctuating) severe to

profound hearing loss. We live in London. While is English, I am German,

and Felix grows up bilingually - something we would really like for as

well, although at the moment we don't even know yet how he will learn language

at all, and are not sure whether to sign, use cued speech or what else - we are

still very much at the beginning. has started to wear one hearing aid (in

his worse ear) for 1-2 hours each day in order to find out whether it helps him

- so far we are not sure whether it does. We hesitate to put the hearing aid in

for too long as we don't want to destroy healthy structure, and his loss is

fluctuating.

Marie

[Guest guest]

nice to meet you. I wanted to say hi and welcome, I am , I have

two children one with spina bifida and one with another condition and hearing

loss. It's kind of funny to meet you here. Are you a member of any of the

spina bifida lists? There is SB parents and sb moms n dads. Yes it says

parents but grandparents are welcome too. There are also adults with sb on

there as well. Anyway if you aren't already a member I would welcome you to

join. My spina bifida son is 5 and my hearing impaired son is 3. I consider

him Deaf because he doesn't understand any hearing even though the schools are

having a hard time even accepting he is mildly hearing impaired. Very

frustrating. My son also is in a class with the severely delayed children and

he isn't severely delayed. He has been using the sign eat for years and the

other day the teacher wrote home all excited that he signed eat, I'm thinking

" HELLO!!! " I have said from the beginning their expectations of him are too

low, they don't require him to sign back to them. He won't do it unless you

make him, once you make him do it for a long time finally he will start doing it

on his own, it's just his personallity to try to get by communicating his own

way and do as little as you want as he can and he does really good at it which

is why you have to push him. How is he ever supposed to communicate well if

they don't make him sign? Anyway I understand your frustrations and if you

would like to talk privately about either condition let me know.

Introduction

Hello,

I have been lurking for a while and decided to come forward. I'm grandma to

an almost four year old who is moderate to severely deaf. He does have hearing

aides. He lives close by with his family and I see them often. He is in a

" total communication " program. It is actually a class of severely handicapped

children, he is the only hearing impaired child. His parents have been trying

to get an inter-district transfer to a pre-school for deaf children, but they

are having a hard time. The district with the deaf class is in another county

and they say they want to save spaces for children in their own county. It is

very frustrating to know there is a program close by but not be able to get in.

Sometimes the school forgets the " total " communication part and just works on

oral stuff. I'm learning ASL and sit with my grandson during Sunday School

classes and try to help there.

I just want to say that as have read your posts I really admire all of you.

You are being great advocates for your children. You are very knowledgeable. I

must say that I don't really understand very much about the technical part of

deafness. So a lot of your terms are new to me and go right over my head. But

slowly I will learn.

Keep up the good work with your children.

hugs,

mom to six, grandma to two, including my little grandson Spencer, deaf

and my youngest son Evan 16, spina bifida, hydrocephalus, RTA type 4,

nephrocalcinosis etc

[Guest guest]

nice to meet you. I wanted to say hi and welcome, I am , I have

two children one with spina bifida and one with another condition and hearing

loss. It's kind of funny to meet you here. Are you a member of any of the

spina bifida lists? There is SB parents and sb moms n dads. Yes it says

parents but grandparents are welcome too. There are also adults with sb on

there as well. Anyway if you aren't already a member I would welcome you to

join. My spina bifida son is 5 and my hearing impaired son is 3. I consider

him Deaf because he doesn't understand any hearing even though the schools are

having a hard time even accepting he is mildly hearing impaired. Very

frustrating. My son also is in a class with the severely delayed children and

he isn't severely delayed. He has been using the sign eat for years and the

other day the teacher wrote home all excited that he signed eat, I'm thinking

" HELLO!!! " I have said from the beginning their expectations of him are too

low, they don't require him to sign back to them. He won't do it unless you

make him, once you make him do it for a long time finally he will start doing it

on his own, it's just his personallity to try to get by communicating his own

way and do as little as you want as he can and he does really good at it which

is why you have to push him. How is he ever supposed to communicate well if

they don't make him sign? Anyway I understand your frustrations and if you

would like to talk privately about either condition let me know.

Introduction

Hello,

I have been lurking for a while and decided to come forward. I'm grandma to

an almost four year old who is moderate to severely deaf. He does have hearing

aides. He lives close by with his family and I see them often. He is in a

" total communication " program. It is actually a class of severely handicapped

children, he is the only hearing impaired child. His parents have been trying

to get an inter-district transfer to a pre-school for deaf children, but they

are having a hard time. The district with the deaf class is in another county

and they say they want to save spaces for children in their own county. It is

very frustrating to know there is a program close by but not be able to get in.

Sometimes the school forgets the " total " communication part and just works on

oral stuff. I'm learning ASL and sit with my grandson during Sunday School

classes and try to help there.

I just want to say that as have read your posts I really admire all of you.

You are being great advocates for your children. You are very knowledgeable. I

must say that I don't really understand very much about the technical part of

deafness. So a lot of your terms are new to me and go right over my head. But

slowly I will learn.

Keep up the good work with your children.

hugs,

mom to six, grandma to two, including my little grandson Spencer, deaf

and my youngest son Evan 16, spina bifida, hydrocephalus, RTA type 4,

nephrocalcinosis etc

[Guest guest]

nice to meet you. I wanted to say hi and welcome, I am , I have

two children one with spina bifida and one with another condition and hearing

loss. It's kind of funny to meet you here. Are you a member of any of the

spina bifida lists? There is SB parents and sb moms n dads. Yes it says

parents but grandparents are welcome too. There are also adults with sb on

there as well. Anyway if you aren't already a member I would welcome you to

join. My spina bifida son is 5 and my hearing impaired son is 3. I consider

him Deaf because he doesn't understand any hearing even though the schools are

having a hard time even accepting he is mildly hearing impaired. Very

frustrating. My son also is in a class with the severely delayed children and

he isn't severely delayed. He has been using the sign eat for years and the

other day the teacher wrote home all excited that he signed eat, I'm thinking

" HELLO!!! " I have said from the beginning their expectations of him are too

low, they don't require him to sign back to them. He won't do it unless you

make him, once you make him do it for a long time finally he will start doing it

on his own, it's just his personallity to try to get by communicating his own

way and do as little as you want as he can and he does really good at it which

is why you have to push him. How is he ever supposed to communicate well if

they don't make him sign? Anyway I understand your frustrations and if you

would like to talk privately about either condition let me know.

Introduction

Hello,

I have been lurking for a while and decided to come forward. I'm grandma to

an almost four year old who is moderate to severely deaf. He does have hearing

aides. He lives close by with his family and I see them often. He is in a

" total communication " program. It is actually a class of severely handicapped

children, he is the only hearing impaired child. His parents have been trying

to get an inter-district transfer to a pre-school for deaf children, but they

are having a hard time. The district with the deaf class is in another county

and they say they want to save spaces for children in their own county. It is

very frustrating to know there is a program close by but not be able to get in.

Sometimes the school forgets the " total " communication part and just works on

oral stuff. I'm learning ASL and sit with my grandson during Sunday School

classes and try to help there.

I just want to say that as have read your posts I really admire all of you.

You are being great advocates for your children. You are very knowledgeable. I

must say that I don't really understand very much about the technical part of

deafness. So a lot of your terms are new to me and go right over my head. But

slowly I will learn.

Keep up the good work with your children.

hugs,

mom to six, grandma to two, including my little grandson Spencer, deaf

and my youngest son Evan 16, spina bifida, hydrocephalus, RTA type 4,

nephrocalcinosis etc

[Guest guest]

Hi,

Every case is different but a good integrated FM system may really help

Spencer. Phonax and others are available. In terms of the school situation he

should be in a Deaf/Hard of Hearing Classroom. He can not identify with the

other kids in the class. The distridt has an obligation to provide him an

appropriate education and this is not appropriate. Parents usually have to

become

very aggressive advocates in these situations and sometimes get and advocate

from DCARA or one of the other organizations to attend IEP's with them. Parents

can also file for due process and sue the district for not providing the

apporpriate education. You may want to check out the information on the Listen-

up

web site. Many of us have been through many of these battles and can be a

resource and support. My son is going to High School in the fall and has a

moderate to profound loss in one ear and a profound loss in t he other. He has

made it with the use of a GOOD FM system, and real time transcription in the

classroom - that was a tough one to get. Unfortunately, we have now had to move

in order for him to go to a smaller High school with his friends since we were

on an interdistrict transfer. The High School District diecided this year to

not allow transfers of any special ed students. Feel free to e-mail me.

Vern

[Guest guest]

Hi,

Every case is different but a good integrated FM system may really help

Spencer. Phonax and others are available. In terms of the school situation he

should be in a Deaf/Hard of Hearing Classroom. He can not identify with the

other kids in the class. The distridt has an obligation to provide him an

appropriate education and this is not appropriate. Parents usually have to

become

very aggressive advocates in these situations and sometimes get and advocate

from DCARA or one of the other organizations to attend IEP's with them. Parents

can also file for due process and sue the district for not providing the

apporpriate education. You may want to check out the information on the Listen-

up

web site. Many of us have been through many of these battles and can be a

resource and support. My son is going to High School in the fall and has a

moderate to profound loss in one ear and a profound loss in t he other. He has

made it with the use of a GOOD FM system, and real time transcription in the

classroom - that was a tough one to get. Unfortunately, we have now had to move

in order for him to go to a smaller High school with his friends since we were

on an interdistrict transfer. The High School District diecided this year to

not allow transfers of any special ed students. Feel free to e-mail me.

Vern

[Guest guest]

Hi . Welcome to the list. I'm in the Chicago area also. McHenry county.

een

[Guest guest]

Hey ,

Welcome. I'm Jill, mom to 2 kids, one Ian (13 HOH) and the other (10

hearing).

It's a good list. Many different styles of communication, many different

opinions and lots of help and support ... nice people!

--Jill

[Guest guest]

Hey ,

Welcome. I'm Jill, mom to 2 kids, one Ian (13 HOH) and the other (10

hearing).

It's a good list. Many different styles of communication, many different

opinions and lots of help and support ... nice people!

--Jill

[Guest guest]

Hey ,

Welcome. I'm Jill, mom to 2 kids, one Ian (13 HOH) and the other (10

hearing).

It's a good list. Many different styles of communication, many different

opinions and lots of help and support ... nice people!

--Jill

[Guest guest]

Welcome to the group .

I've found this group to be very supportive and highly informative. Let us know

what state you are in -- there could very well be some parents who live or have

lived in the past in your state. Services vary from state to sate so this

information will help.

I cannot supply specific info on CI's; my daughter has a moderate loss and wears

HAs. But, when I read your post, I wondered if your daughter might be reading

lips and has learned to say mamamam this way. My daughter gets wonderful benefit

from her aids but also is a self taught lip reader. She can her in the tub/pool

if I really project my voice but really relies in the lip reading then. My

daughter is 3.

Did your daughter have an ABR test? I would make sure this is done, especially

if you suspect that she might be hearing better than diagnosed.

I'm sure others will supply some helpful CI info. The whole process is

overwhelming at first; and you have been through a lot already. Keep the

questions coming.

H

Mom to Jessie 3, moderate loss. HA

introduction

Hello

My name is and my daughter was born June 2, 2003 on June 11,

2003 she had open heart surgery and we finally got to bring her home

on July 22. She is repaired, and we thought the road to the Medical

Center here in Houston was in the past.

She was diagnosed in April with severe to profound hearing loss,

after many test and 2 different ENT's - we finally found out why she

could not hear. Kaila's cochlea's did not fully develop. I found out

Monday August 16th that she has been referred for cochlear implants.

She was wearing one hearing aid (a loaner) - when she would leave it

alone. Now the ENT has advised me not to invest in hearing aids yet.

I've done some reading and know that it is very important for her to

hear sounds. (by the way I know she can hear sounds, because I taught

her to say mamamama - and that's about all she says)the hearing aid

we have has a very loud ringing noise and she cries when I put it

into her " good " ear.

I'm not happy with her audiologist, I found out more information from

another parent I spotted at Chuck E Cheese. My insurance does not pay

for hearing aids or hearing test. And we are still trying to pay off

the hospital bills from her heart surgery.

I would like to know more about cochlear implants before her

appointments, so I can bring up any questions to the doctor. From

what I've read, I really want her to have them - but after everything

she has been through I am a little apprehensive.

Mother of Kaila 14 months - severe to profound hearing loss

& Tara 6 yrs old - normal hearing

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]

Welcome to the group .

I've found this group to be very supportive and highly informative. Let us know

what state you are in -- there could very well be some parents who live or have

lived in the past in your state. Services vary from state to sate so this

information will help.

I cannot supply specific info on CI's; my daughter has a moderate loss and wears

HAs. But, when I read your post, I wondered if your daughter might be reading

lips and has learned to say mamamam this way. My daughter gets wonderful benefit

from her aids but also is a self taught lip reader. She can her in the tub/pool

if I really project my voice but really relies in the lip reading then. My

daughter is 3.

Did your daughter have an ABR test? I would make sure this is done, especially

if you suspect that she might be hearing better than diagnosed.

I'm sure others will supply some helpful CI info. The whole process is

overwhelming at first; and you have been through a lot already. Keep the

questions coming.

H

Mom to Jessie 3, moderate loss. HA

introduction

Hello

My name is and my daughter was born June 2, 2003 on June 11,

2003 she had open heart surgery and we finally got to bring her home

on July 22. She is repaired, and we thought the road to the Medical

Center here in Houston was in the past.

She was diagnosed in April with severe to profound hearing loss,

after many test and 2 different ENT's - we finally found out why she

could not hear. Kaila's cochlea's did not fully develop. I found out

Monday August 16th that she has been referred for cochlear implants.

She was wearing one hearing aid (a loaner) - when she would leave it

alone. Now the ENT has advised me not to invest in hearing aids yet.

I've done some reading and know that it is very important for her to

hear sounds. (by the way I know she can hear sounds, because I taught

her to say mamamama - and that's about all she says)the hearing aid

we have has a very loud ringing noise and she cries when I put it

into her " good " ear.

I'm not happy with her audiologist, I found out more information from

another parent I spotted at Chuck E Cheese. My insurance does not pay

for hearing aids or hearing test. And we are still trying to pay off

the hospital bills from her heart surgery.

I would like to know more about cochlear implants before her

appointments, so I can bring up any questions to the doctor. From

what I've read, I really want her to have them - but after everything

she has been through I am a little apprehensive.

Mother of Kaila 14 months - severe to profound hearing loss

& Tara 6 yrs old - normal hearing

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]

Welcome to the group .

I've found this group to be very supportive and highly informative. Let us know

what state you are in -- there could very well be some parents who live or have

lived in the past in your state. Services vary from state to sate so this

information will help.

I cannot supply specific info on CI's; my daughter has a moderate loss and wears

HAs. But, when I read your post, I wondered if your daughter might be reading

lips and has learned to say mamamam this way. My daughter gets wonderful benefit

from her aids but also is a self taught lip reader. She can her in the tub/pool

if I really project my voice but really relies in the lip reading then. My

daughter is 3.

Did your daughter have an ABR test? I would make sure this is done, especially

if you suspect that she might be hearing better than diagnosed.

I'm sure others will supply some helpful CI info. The whole process is

overwhelming at first; and you have been through a lot already. Keep the

questions coming.

H

Mom to Jessie 3, moderate loss. HA

introduction

Hello

My name is and my daughter was born June 2, 2003 on June 11,

2003 she had open heart surgery and we finally got to bring her home

on July 22. She is repaired, and we thought the road to the Medical

Center here in Houston was in the past.

She was diagnosed in April with severe to profound hearing loss,

after many test and 2 different ENT's - we finally found out why she

could not hear. Kaila's cochlea's did not fully develop. I found out

Monday August 16th that she has been referred for cochlear implants.

She was wearing one hearing aid (a loaner) - when she would leave it

alone. Now the ENT has advised me not to invest in hearing aids yet.

I've done some reading and know that it is very important for her to

hear sounds. (by the way I know she can hear sounds, because I taught

her to say mamamama - and that's about all she says)the hearing aid

we have has a very loud ringing noise and she cries when I put it

into her " good " ear.

I'm not happy with her audiologist, I found out more information from

another parent I spotted at Chuck E Cheese. My insurance does not pay

for hearing aids or hearing test. And we are still trying to pay off

the hospital bills from her heart surgery.

I would like to know more about cochlear implants before her

appointments, so I can bring up any questions to the doctor. From

what I've read, I really want her to have them - but after everything

she has been through I am a little apprehensive.

Mother of Kaila 14 months - severe to profound hearing loss

& Tara 6 yrs old - normal hearing

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.