New to group

[Guest guest]

Debbie,

I'm 4 months out and I still have trouble getting in enough water. In the

beginning I was lucky to get 30 oz. a day in but now I get 48 to 64 oz. I

too drink a lot of hot tea and hot lemonade ( 6oz. hot water, squeeze of

lemon wedge and splenda). Just keep trying. It will get much easier!

obsessive/compulsive people are--lol. Anyway, read some of your responses,

and they helped alot knowing that other people seem to have this same

problem too. I am also having difficulty getting in enough water every day.

If I drink too fast, I get a slight pain that subsides quickly, but makes me

feel kind of nauseous for a little while after. But I found that hot tea

goes down easier, so I drink more of that. Also, is it possible to suddenly

become lactose intolerant. I find that milk/yogurt/other dairy sometimes

doesn't always agree with me. Thanks for all your help. Bye for now

>

> Debbie rny 1/23/03 250lbs

[Guest guest]

Debbie,

I'm 4 months out and I still have trouble getting in enough water. In the

beginning I was lucky to get 30 oz. a day in but now I get 48 to 64 oz. I

too drink a lot of hot tea and hot lemonade ( 6oz. hot water, squeeze of

lemon wedge and splenda). Just keep trying. It will get much easier!

obsessive/compulsive people are--lol. Anyway, read some of your responses,

and they helped alot knowing that other people seem to have this same

problem too. I am also having difficulty getting in enough water every day.

If I drink too fast, I get a slight pain that subsides quickly, but makes me

feel kind of nauseous for a little while after. But I found that hot tea

goes down easier, so I drink more of that. Also, is it possible to suddenly

become lactose intolerant. I find that milk/yogurt/other dairy sometimes

doesn't always agree with me. Thanks for all your help. Bye for now

>

> Debbie rny 1/23/03 250lbs

[Guest guest]

Welcome to the group I to have papillary Cancer and was diagnoised back in

April of this yr

and operated on May 7th total thyroid and nine lypm nodes removed in the

neck which were

eight were cancerous also complicated survey due to large tumor which was

attached to the

vocal nerves and now voice is still horse and my remain that way , but I am

keeping a positive

attitude and now I await my body scan on June 23rd.

How are you doing are you all cleared and no reoccurences??

Take Care

Judy

New to Group

Hi,

My name is , I am new to your group although I have had

Papillary

thyroid cancer for a year. This is a test post as I have written my

history out

twice and cannot seem to get it to post.

Glad to find the group,

[Guest guest]

Welcome to the group I to have papillary Cancer and was diagnoised back in

April of this yr

and operated on May 7th total thyroid and nine lypm nodes removed in the

neck which were

eight were cancerous also complicated survey due to large tumor which was

attached to the

vocal nerves and now voice is still horse and my remain that way , but I am

keeping a positive

attitude and now I await my body scan on June 23rd.

How are you doing are you all cleared and no reoccurences??

Take Care

Judy

New to Group

Hi,

My name is , I am new to your group although I have had

Papillary

thyroid cancer for a year. This is a test post as I have written my

history out

twice and cannot seem to get it to post.

Glad to find the group,

[Guest guest]

Find out if your doctor can do a vaginal myomectomy, also known as a

hysteroscopic resection. Not all gyns are trained to do these kinds

of surgeries, but if your fibroid is inside the uterus

(submucousal), which is the type most likely to cause bleeding

problems this may be your best bet. This is an outpatient procedure

and there are no incisions made. I had this surgery last year and

felt fine the next day. I didn't even need any pain meds after I

left the hospital. Your fibroid is at the upper limit for this type

of procedure, so you may need a recommendation to a doctor who has

the skill to do hysteroscopic procedures.

> Hi. I am new to the group and have been reading messages for a

week now. This is my first post. Here is my story, I will try to

keep it short. I am 30 years old, and until a year ago had never had

problems with my periods. About a year ago I started having very

heavy bleeding during my periods, sometimes with huge clots. I saw

my gyn in December and told her of the problem, she recommended a

stronger birth control pill. I told her then that I had a family

history of fibroids but she didn't think that was the problem (my

aunt had a hysterectomy approx. 15 years ago due to fibroids). To

make a long story short the periods have gotten worse and my birth

control pills have been changed 4 times since last December in a

vain effort to control the bleeding. In August I asked for an

ultrasound, and was finally told last week that I have a 3.8cm

fibroid. At that time I didn't know enough to ask specifically where

it is. The recommendation I was given is to try the Orth-Evra patch

to help

> control the bleeding. (which is still getting worse, I bled for 6

weeks straight thru the summer). I asked for other options and they

mentioned a laprascopic myomectomy, so I made an appointment to

discuss these other options with my gyn. However her nurse did tell

me they usually don't remove them until they get larger, like 6 cm.

This group has been a valuable source of info so far. So, my

question is, what kinds of questions should I ask? I am 30 years

old, have no children and would like to someday. Also, I live in St

Louis, MO and am wondering if anyone could recommend a gyn in this

area, as I am not extremely happy with mine right now. Thank you!

>

> in St. Louis

>

>

>

[Guest guest]

Debbie, welcome, and may we give you a number at the end of your name so we can tell you from

our other two Debs? How about Debbie3? We have several 's, a's, and Sue's, also, but

they use their last initial at the end of their first names. You could do that, too. Whatever suits you

best, honey. I'm glad you found us, although not glad you have Lupus. THAT part of all this is the

fly in the ointment, for sure.

Well, I am the soon-to-be 55 year old adoptive mother of four, grandmother of two, live in no. CA

about 50 miles from San Francisco. I am retired on my early pension and disability insurance due to

dx's of SLE, RA, Sjogren's, chronic Lyme Disease, Myofibrositis, Anemia, non-insulin dependent Diabetes, and, now, heart and lung problems. Isn't Lupus an adventure? LOL

I believe you will find the people in this group to be intelligent (most days), caring (always), well-

informed (If one of us doesn't know the answer to a question, there is always someone else who does.), and often funny. Feel free to join in any conversation going on the board. Sometimes, it may

take a day or two to get a reply, because all of us are sick, and we all have days that are worse than

others. Don't take any delay personally, and if you want to chat, email the group for the next time

scheduled for it, or just go to the chat room and announce you are there and invite members to

come and join you there. If anyone is available, they will respond.

Again, welcome, and by all means, keep writing. It helps to vent, to inquire, to share a laugh, to

whine (We offer cheese with that.), and to offer support to others. Hugs, MM aka: Mike, one

of the moderators.

[Guest guest]

Now is DEFINITELY the time Jen! Over the holidays it used to be that people

gained, on average, 7 pounds. Now they are saying we're gaining, on

average, 14 pounds! Of those 14, we take off 7, but that leaves us with a 7

pound net gain.

Imagine if instead you went through the holidays and either maintained or,

lost!? Wouldn't you feel awesome about that? What a wonderful day to start

the new year!

Weight Watchers was my first real attempt at weight loss as well. Oh I'd

dieted off and on kind of half-heartedly over the years, but never with any

dedication. I've lost over 100 pounds and kept it off since December 2002.

At 09:06 AM 12/6/2004, wrote:

>Hello!

>I am 35 years old and I am about to go to my first meeting for

>weight watchers. This is my first time ever! I have tried loosing

>weight on my own but I realize I need support. I am so excited about

>joining ww and this group. I just wanted introduce myself. I live in

>Washington State and I never thought I would want to sign up right

>before x-mas but something tells me now is the time and I am finally

>ready to commit myself!

>Jen G.

>

>

>

>

>

>

>

>

[Guest guest]

Now is DEFINITELY the time Jen! Over the holidays it used to be that people

gained, on average, 7 pounds. Now they are saying we're gaining, on

average, 14 pounds! Of those 14, we take off 7, but that leaves us with a 7

pound net gain.

Imagine if instead you went through the holidays and either maintained or,

lost!? Wouldn't you feel awesome about that? What a wonderful day to start

the new year!

Weight Watchers was my first real attempt at weight loss as well. Oh I'd

dieted off and on kind of half-heartedly over the years, but never with any

dedication. I've lost over 100 pounds and kept it off since December 2002.

At 09:06 AM 12/6/2004, wrote:

>Hello!

>I am 35 years old and I am about to go to my first meeting for

>weight watchers. This is my first time ever! I have tried loosing

>weight on my own but I realize I need support. I am so excited about

>joining ww and this group. I just wanted introduce myself. I live in

>Washington State and I never thought I would want to sign up right

>before x-mas but something tells me now is the time and I am finally

>ready to commit myself!

>Jen G.

>

>

>

>

>

>

>

>

[Guest guest]

Now is DEFINITELY the time Jen! Over the holidays it used to be that people

gained, on average, 7 pounds. Now they are saying we're gaining, on

average, 14 pounds! Of those 14, we take off 7, but that leaves us with a 7

pound net gain.

Imagine if instead you went through the holidays and either maintained or,

lost!? Wouldn't you feel awesome about that? What a wonderful day to start

the new year!

Weight Watchers was my first real attempt at weight loss as well. Oh I'd

dieted off and on kind of half-heartedly over the years, but never with any

dedication. I've lost over 100 pounds and kept it off since December 2002.

At 09:06 AM 12/6/2004, wrote:

>Hello!

>I am 35 years old and I am about to go to my first meeting for

>weight watchers. This is my first time ever! I have tried loosing

>weight on my own but I realize I need support. I am so excited about

>joining ww and this group. I just wanted introduce myself. I live in

>Washington State and I never thought I would want to sign up right

>before x-mas but something tells me now is the time and I am finally

>ready to commit myself!

>Jen G.

>

>

>

>

>

>

>

>

[Guest guest]

LOL I've never been to Washington state. But I've heard it's beautiful.

Although I'm way behind everyone else, I wanted you to know that I'm glad

You've joined us.

in Va.

I live in the Metropolitan Seattle area, in a small town that people here

don't even know where it is..LOL

Thanks for the nice welcome

Kerry

[Guest guest]

In a message dated 8/28/05 5:23:24 PM Pacific Daylight Time,

davehud@... writes:

> Lil seems to think I should go for the cardioversion. I just want this darn

> thing to go away for good and I'm probably asking for the world. It seems

> both of you have had good luck with both procedures. I'll sleep on it, thank

> you again.

Dave, I think we've all had " good luck " with cardioversion. I've had it

twice ... or is it three times? I don't remember. The point is, it usually

doesn't last very long. Then again, people have had it last years. In any

case,

make your decision based on the knowledge that it's a temporary thing, not a

cure. The a-fib will return at some point ... in all probability. Don't mean

to beat the negativity drum ... but I think it's important to have some input

from folks who have been wrestling with this a-fib demon for years and have

more history with it all. Then make your decision ... and if you have it I hope

it lasts for years and years!

Toni

CA

[Guest guest]

In a message dated 8/28/2005 7:07:01 PM Pacific Standard Time,

indiaink99@... writes:

Dave, I think we've all had " good luck " with cardioversion. I've had it

twice ... or is it three times? I don't remember. The point is, it usually

doesn't last very long. Then again, people have had it last years. In any

case,

make your decision based on the knowledge that it's a temporary thing, not a

cure. The a-fib will return at some point ... in all probability

Yes that is very true, cardioversion does not appear to be a permanent fix

for afib. That said, no one knows how long it will last and some people get

lucky with it. At the very least it gives you a break from the constant misery

of afib for awhile. Sometimes, combined with an antiarrhythmic med, a

cardioversion works well and for a long period of time.

As a procedure, I'll take it any time over just about anything else and that

includes, as someone else here said, having my teeth cleaned. Seriously.

Lil

[Guest guest]

Hi Dave.

I just found this group recently and it has completely changed my perception of

the problem. I felt alone and helpless with a kind of " I just gotta live with

it " state of mind.

Maybe I do just gotta live with it but now I know I am not alone.

It makes all the difference in the world.

Have you investigated the possibility of ablation?

Also, there are things you can do about diet/lifestyle that might help.

After reading this forum and some others, I take Magnesium, potassium, a heart

supplement called Cardioace (in UK, There must be a US equivalent) Enzyme Q10.

These have made me feel much better and stronger, even though I still have AF.

I hope I am not teaching my grandmother to suck eggs by telling you this.

Love

Sue

Dave Bocci wrote:

Hello everyone,

my name is Dave and I live in Missouri. I feel fortunate to have

found this group. I have read some of your letters and comments and

believe me I know your pain. I have been suffering with afib off and

on since 1980 when I had an elctrical contact accident. I am 53 now

and it has hit me hard now and I can't shake it. I think those of us

who have had this condition for a while have our own little home cure

to get back in nsr. Well, mine has failed to work this time and I'm

getting pretty worried. My cardiologist has given me a choice...to

either check in the hospital for a couple of days and start me on

Flecainide or electrical cardioversion as an out patient procedure.

I'm sure some of you have had one or both, could you please enlighten

me on your experinces? I think the one letter I read from Lil to Sue

were my feelings exactly. No one who sees you from the outside hasn't

a clue to the feelings of fear and misery we experince daily. I mean

this from the bottom of my rattlin' heart, good luck to all of you and

God bless.

Dave

Web Page - http://www.afibsupport.com

List owner: AFIBsupport-owner

For help on how to use the group, including how to drive it via email,

send a blank email to AFIBsupport-help

Nothing in this message should be considered as medical advice, or should be

acted upon without consultation with one's physician.

[Guest guest]

--Hi Dave,

Welcome. I saw that you were from Mo. and wondered what part. I live

in southcentral Mo. I have been cardioverted and also was on

Flecainide, Corgard, Toprol and after my hospital stay last month, I

am on toprol and Betapace. I agree, unless you have experienced

this " monster " you don't know just how bad it makes us feel. I think

most of us would do just about anything to get rid of it. But it

does help to know that others have and are going through what we are

and they understand.

God bless you too,

Jennie

In AFIBsupport , " Dave Bocci " <davehud@f...> wrote:

> Hello everyone,

> my name is Dave and I live in Missouri. I feel fortunate to have

> found this group. I have read some of your letters and comments and

> believe me I know your pain. I have been suffering with afib off

and

> on since 1980 when I had an elctrical contact accident. I am 53 now

> and it has hit me hard now and I can't shake it. I think those of

us

> who have had this condition for a while have our own little home

cure

> to get back in nsr. Well, mine has failed to work this time and I'm

> getting pretty worried. My cardiologist has given me a choice...to

> either check in the hospital for a couple of days and start me on

> Flecainide or electrical cardioversion as an out patient procedure.

> I'm sure some of you have had one or both, could you please

enlighten

> me on your experinces? I think the one letter I read from Lil to

Sue

> were my feelings exactly. No one who sees you from the outside

hasn't

> a clue to the feelings of fear and misery we experince daily. I

mean

> this from the bottom of my rattlin' heart, good luck to all of you

and

> God bless.

> Dave

[Guest guest]

Hi Dave - welcome. I have been a member of this group for a couple of

months, and like you, am so happy I found more people like me (AFIBBERS). I

really DO NOT like medicine, but I started taking Flecainide about a month

ago and am doing fine. It really does work for me. I take a small dose,

and also a small dose of Lanoxin, and an aspirin. If I can tolerate it,

almost anyone can. Also, I went to a cardio doc first, but he referred me

to an EP (after the meds he gave me I could not tolerate and he became tired

of me). I LOVE my EP.

Good luck - God Bless - and may your day be a bright one filled with good

news!

Debbie in Texas

>

>Reply-To: AFIBsupport

>To: AFIBsupport

>Subject: New to Group

>Date: Sun, 28 Aug 2005 14:17:10 -0000

>

>Hello everyone,

> my name is Dave and I live in Missouri. I feel fortunate to have

>found this group. I have read some of your letters and comments and

>believe me I know your pain. I have been suffering with afib off and

>on since 1980 when I had an elctrical contact accident. I am 53 now

>and it has hit me hard now and I can't shake it. I think those of us

>who have had this condition for a while have our own little home cure

>to get back in nsr. Well, mine has failed to work this time and I'm

>getting pretty worried. My cardiologist has given me a choice...to

>either check in the hospital for a couple of days and start me on

>Flecainide or electrical cardioversion as an out patient procedure.

>I'm sure some of you have had one or both, could you please enlighten

>me on your experinces? I think the one letter I read from Lil to Sue

>were my feelings exactly. No one who sees you from the outside hasn't

>a clue to the feelings of fear and misery we experince daily. I mean

>this from the bottom of my rattlin' heart, good luck to all of you and

>God bless.

>Dave

>

>

>

>

[Guest guest]

Dave Bocci wrote:

> My cardiologist has given me a choice...to

> either check in the hospital for a couple of days and start me on

> Flecainide or electrical cardioversion as an out patient procedure.

> I'm sure some of you have had one or both, could you please enlighten

> me on your experinces?

I am one of those who, when I go into AFIB, I stay in it, though my

symptoms aren't usually bad. I have had 4 electrocardioversions. They

really are not a problem for me, and I always feel great afterwards.

Sounds like your doc is suggesting you can try using Flecainide at a

" high " dose to do the same thing. I was just prescribed Flecainide

today, at a low daily dose, to try to maintain me in NSR, because I seem

to flip back into AFIB after 6 to 8 weeks, and betablockers (Atenolol

and Sotalol) didn't help. The doctor told me that if I go into AFIB in

the future, he may direct me to take a one-time higher dose of

Flecainide to pop me back into NSR. Have to see how that goes, I guess.

If you do the electro-reboot, what is your cardiologist suggesting for

maintaining NSR?

Best of luck, and hope you feel better soon,

--

Clay

" Hi, handsome, what's your sign? I'm a Leo. "

" I'm a 200 joules bi-phasic. Do you come here often? "

[Guest guest]

wrote: <<I can't seem to get out of the cloud of

guilt to make clear decision on what to do. >>

Hi, .

This thread has been very interesting to me. I have two children, Emma (6 and

hearing) and Emmett (almost 4 and hard of hearing). Emmett's hearing loss was

diagnosed last year when he was 2.5. At first, we found he has a profound loss

in his right ear, which is unaided, and had typical hearing in his left ear.

Since then, he has lost hearing and is now at 25 to 30 db in his left ear. He

wears a hearing aid on his left ear. He started wearing the aid in March. He

loves it. He gets tremendous gain from the aid, and is really great at telling

us about what works for him and what doesn't when it's getting programmed.

What I found most interesting about the thread was the guilt. Emmett passed

newborn screening and had typical hearing in both ears. He had a staph infection

in his right ear at 10 days old that didn't resolve for 6 weeks. It was a

horrible time for us. He had been hospitalized for RSV at 10 days old and came

home with the infection. I've always felt responsible for that. My guilt lies in

" allowing " him to catch the RSV from visitors who came to our home. I've often

thought if it were genetic it would be easier for me to accept, but from what

I'm reading in all these posts, we mothers feel guilty no matter what the cause!

Some days are worse than others still, but most days are just normal days.

Emmett is a funny, bright, loving little boy who has a great sense of humor

about his hearing loss. We've all learned so much from him. He's a gift to us

and I'd never want him to be anyone other than who he is.

Good luck with your decisions, and welcome to the group,

johanna

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

Yahoo! Music Unlimited - Access over 1 million songs. Try it free.

[Guest guest]

wrote: <<I can't seem to get out of the cloud of

guilt to make clear decision on what to do. >>

Hi, .

This thread has been very interesting to me. I have two children, Emma (6 and

hearing) and Emmett (almost 4 and hard of hearing). Emmett's hearing loss was

diagnosed last year when he was 2.5. At first, we found he has a profound loss

in his right ear, which is unaided, and had typical hearing in his left ear.

Since then, he has lost hearing and is now at 25 to 30 db in his left ear. He

wears a hearing aid on his left ear. He started wearing the aid in March. He

loves it. He gets tremendous gain from the aid, and is really great at telling

us about what works for him and what doesn't when it's getting programmed.

What I found most interesting about the thread was the guilt. Emmett passed

newborn screening and had typical hearing in both ears. He had a staph infection

in his right ear at 10 days old that didn't resolve for 6 weeks. It was a

horrible time for us. He had been hospitalized for RSV at 10 days old and came

home with the infection. I've always felt responsible for that. My guilt lies in

" allowing " him to catch the RSV from visitors who came to our home. I've often

thought if it were genetic it would be easier for me to accept, but from what

I'm reading in all these posts, we mothers feel guilty no matter what the cause!

Some days are worse than others still, but most days are just normal days.

Emmett is a funny, bright, loving little boy who has a great sense of humor

about his hearing loss. We've all learned so much from him. He's a gift to us

and I'd never want him to be anyone other than who he is.

Good luck with your decisions, and welcome to the group,

johanna

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

Yahoo! Music Unlimited - Access over 1 million songs. Try it free.

[Guest guest]

wrote: <<I can't seem to get out of the cloud of

guilt to make clear decision on what to do. >>

Hi, .

This thread has been very interesting to me. I have two children, Emma (6 and

hearing) and Emmett (almost 4 and hard of hearing). Emmett's hearing loss was

diagnosed last year when he was 2.5. At first, we found he has a profound loss

in his right ear, which is unaided, and had typical hearing in his left ear.

Since then, he has lost hearing and is now at 25 to 30 db in his left ear. He

wears a hearing aid on his left ear. He started wearing the aid in March. He

loves it. He gets tremendous gain from the aid, and is really great at telling

us about what works for him and what doesn't when it's getting programmed.

What I found most interesting about the thread was the guilt. Emmett passed

newborn screening and had typical hearing in both ears. He had a staph infection

in his right ear at 10 days old that didn't resolve for 6 weeks. It was a

horrible time for us. He had been hospitalized for RSV at 10 days old and came

home with the infection. I've always felt responsible for that. My guilt lies in

" allowing " him to catch the RSV from visitors who came to our home. I've often

thought if it were genetic it would be easier for me to accept, but from what

I'm reading in all these posts, we mothers feel guilty no matter what the cause!

Some days are worse than others still, but most days are just normal days.

Emmett is a funny, bright, loving little boy who has a great sense of humor

about his hearing loss. We've all learned so much from him. He's a gift to us

and I'd never want him to be anyone other than who he is.

Good luck with your decisions, and welcome to the group,

johanna

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

Yahoo! Music Unlimited - Access over 1 million songs. Try it free.

[Guest guest]

In a message dated 11/27/2005 2:13:52 P.M. Eastern Standard Time,

DMBLin13@... writes:

Everyone keeps talking about the different colored molds. I know they

are available, and Haley's first molds were bright pink, but it always

looked like she had gum stick in her ear, and they brought more

attention then the clear ones. However I have heard that the kids like

the colored ones better.

I think for some kids being able to pick the color of their molds helps them

not feel self conscious about the aids. Ian liked them the minute he got the

" new " blue ones. We then moved onto red-white-blue swirls, his favorite

variation and the one he always comes back to.. His first ones had been sort'a

clear and a harder plastic. The colored ones have been softer and more

comfortable.

My daughter had (still has) hearing aid envy. She wanted purple glitter

molds ... and she doesn't have a hearing loss. She use to make play aids out of

playdough, pipe cleaners -- and those wickie sticks. She also made herself

glasses like mine. She's still a bit annoyed that she has 1) perfect hearing, 2)

20-15 vision and 3) beautifully straight teeth. All of which she inherited

from her father. After the last visit to the dentist, she complained that she

didn't even need braces which most of her friends are getting. We tease her

that she is truly cursed, LOL.

Ian likes the colors and has no problems with total strangers asking him

about his aids. Little kids in the mall will stare. On occasion in the food

court, they'll practically climb into his lap to see what the colors are in his

ears. The parents are always embarrassed, but he shows them and tells them how

the aids help him hear.

I'm convinced it's all because of the attitude we took at the very

beginning. Nothing to be ashamed of, nothing to hide. His 4th grade friends

asked to

try out the aids when he got them, so he'd wash off the mold and let them

listen through them.

You daughter's TOD could do a presentation to her class and introduce them

to the idea of hearing loss and hearing aids. It's amazing how easily the

younger kids accept such things. If she has confidence, then they'll be fine

with

it all.

Our son has never been teased about his aids or hearing loss. He's been

teased about being short, about a girl having a crush on him, about being a

terrible bowler ... but never about the hearing loss. He has a great " so what "

face that he makes when anyone gives him grief, and he usually makes a joke out

of things rather than getting mad.

Each kid is very different. The only other mainstreamed D/HOH kid in our

school district is in Ian's grade. They've been friends since nursery school

when they were 3. He hates being different, hates having his aids noticed and

will do anything not to stand out from the crowd. So he will never have colored

aids or molds unless it helped make them blend in with his hair. He prefers

not to discuss his hearing loss. and even refuses to cooperate with any

obvious services.

Be supportive about her aids. Let yours show ... make it an adventure and

get matching molds next time. Get a special box for her to keep her aids and

batteries in. We picked up a little metal one with an attached lid at Walmart

for a couple of dollars. Ian still uses it. It sits on the shelf next to his

bed.

Whatever it takes to build up her self esteem and pride in her aids. We've

found that Ian's attitude sets the tone for how kids/people react. Honestly,

most don't notice the bright blue aids and if they do, no one is ever mean.

Best, Jill

[Guest guest]

In a message dated 11/27/2005 2:13:52 P.M. Eastern Standard Time,

DMBLin13@... writes:

Everyone keeps talking about the different colored molds. I know they

are available, and Haley's first molds were bright pink, but it always

looked like she had gum stick in her ear, and they brought more

attention then the clear ones. However I have heard that the kids like

the colored ones better.

I think for some kids being able to pick the color of their molds helps them

not feel self conscious about the aids. Ian liked them the minute he got the

" new " blue ones. We then moved onto red-white-blue swirls, his favorite

variation and the one he always comes back to.. His first ones had been sort'a

clear and a harder plastic. The colored ones have been softer and more

comfortable.

My daughter had (still has) hearing aid envy. She wanted purple glitter

molds ... and she doesn't have a hearing loss. She use to make play aids out of

playdough, pipe cleaners -- and those wickie sticks. She also made herself

glasses like mine. She's still a bit annoyed that she has 1) perfect hearing, 2)

20-15 vision and 3) beautifully straight teeth. All of which she inherited

from her father. After the last visit to the dentist, she complained that she

didn't even need braces which most of her friends are getting. We tease her

that she is truly cursed, LOL.

Ian likes the colors and has no problems with total strangers asking him

about his aids. Little kids in the mall will stare. On occasion in the food

court, they'll practically climb into his lap to see what the colors are in his

ears. The parents are always embarrassed, but he shows them and tells them how

the aids help him hear.

I'm convinced it's all because of the attitude we took at the very

beginning. Nothing to be ashamed of, nothing to hide. His 4th grade friends

asked to

try out the aids when he got them, so he'd wash off the mold and let them

listen through them.

You daughter's TOD could do a presentation to her class and introduce them

to the idea of hearing loss and hearing aids. It's amazing how easily the

younger kids accept such things. If she has confidence, then they'll be fine

with

it all.

Our son has never been teased about his aids or hearing loss. He's been

teased about being short, about a girl having a crush on him, about being a

terrible bowler ... but never about the hearing loss. He has a great " so what "

face that he makes when anyone gives him grief, and he usually makes a joke out

of things rather than getting mad.

Each kid is very different. The only other mainstreamed D/HOH kid in our

school district is in Ian's grade. They've been friends since nursery school

when they were 3. He hates being different, hates having his aids noticed and

will do anything not to stand out from the crowd. So he will never have colored

aids or molds unless it helped make them blend in with his hair. He prefers

not to discuss his hearing loss. and even refuses to cooperate with any

obvious services.

Be supportive about her aids. Let yours show ... make it an adventure and

get matching molds next time. Get a special box for her to keep her aids and

batteries in. We picked up a little metal one with an attached lid at Walmart

for a couple of dollars. Ian still uses it. It sits on the shelf next to his

bed.

Whatever it takes to build up her self esteem and pride in her aids. We've

found that Ian's attitude sets the tone for how kids/people react. Honestly,

most don't notice the bright blue aids and if they do, no one is ever mean.

Best, Jill

[Guest guest]

In a message dated 11/27/2005 2:13:52 P.M. Eastern Standard Time,

DMBLin13@... writes:

Everyone keeps talking about the different colored molds. I know they

are available, and Haley's first molds were bright pink, but it always

looked like she had gum stick in her ear, and they brought more

attention then the clear ones. However I have heard that the kids like

the colored ones better.

I think for some kids being able to pick the color of their molds helps them

not feel self conscious about the aids. Ian liked them the minute he got the

" new " blue ones. We then moved onto red-white-blue swirls, his favorite

variation and the one he always comes back to.. His first ones had been sort'a

clear and a harder plastic. The colored ones have been softer and more

comfortable.

My daughter had (still has) hearing aid envy. She wanted purple glitter

molds ... and she doesn't have a hearing loss. She use to make play aids out of

playdough, pipe cleaners -- and those wickie sticks. She also made herself

glasses like mine. She's still a bit annoyed that she has 1) perfect hearing, 2)

20-15 vision and 3) beautifully straight teeth. All of which she inherited

from her father. After the last visit to the dentist, she complained that she

didn't even need braces which most of her friends are getting. We tease her

that she is truly cursed, LOL.

Ian likes the colors and has no problems with total strangers asking him

about his aids. Little kids in the mall will stare. On occasion in the food

court, they'll practically climb into his lap to see what the colors are in his

ears. The parents are always embarrassed, but he shows them and tells them how

the aids help him hear.

I'm convinced it's all because of the attitude we took at the very

beginning. Nothing to be ashamed of, nothing to hide. His 4th grade friends

asked to

try out the aids when he got them, so he'd wash off the mold and let them

listen through them.

You daughter's TOD could do a presentation to her class and introduce them

to the idea of hearing loss and hearing aids. It's amazing how easily the

younger kids accept such things. If she has confidence, then they'll be fine

with

it all.

Our son has never been teased about his aids or hearing loss. He's been

teased about being short, about a girl having a crush on him, about being a

terrible bowler ... but never about the hearing loss. He has a great " so what "

face that he makes when anyone gives him grief, and he usually makes a joke out

of things rather than getting mad.

Each kid is very different. The only other mainstreamed D/HOH kid in our

school district is in Ian's grade. They've been friends since nursery school

when they were 3. He hates being different, hates having his aids noticed and

will do anything not to stand out from the crowd. So he will never have colored

aids or molds unless it helped make them blend in with his hair. He prefers

not to discuss his hearing loss. and even refuses to cooperate with any

obvious services.

Be supportive about her aids. Let yours show ... make it an adventure and

get matching molds next time. Get a special box for her to keep her aids and

batteries in. We picked up a little metal one with an attached lid at Walmart

for a couple of dollars. Ian still uses it. It sits on the shelf next to his

bed.

Whatever it takes to build up her self esteem and pride in her aids. We've

found that Ian's attitude sets the tone for how kids/people react. Honestly,

most don't notice the bright blue aids and if they do, no one is ever mean.

Best, Jill

[Guest guest]

Johanna thanks for sharing. I am realizing after reading posts like

yours that I am being kind of silly to feel guilty for things

unforeseen or out of my control. Just like you had no idea that he

would get RSV form people visiting so you shouldn't feel guilty, but

you do. So I guess s Mothers we just do sometimes no matter what.

LINDA

Re: new to group

wrote: <<I can't seem to get out of the cloud

of

guilt to make clear decision on what to do. >>

Hi, .

This thread has been very interesting to me. I have two children, Emma

(6 and

hearing) and Emmett (almost 4 and hard of hearing). Emmett's hearing

loss was

diagnosed last year when he was 2.5. At first, we found he has a

profound loss

in his right ear, which is unaided, and had typical hearing in his

left ear.

Since then, he has lost hearing and is now at 25 to 30 db in his left

ear. He

wears a hearing aid on his left ear. He started wearing the aid in

March. He

loves it. He gets tremendous gain from the aid, and is really great at

telling

us about what works for him and what doesn't when it's getting

programmed.

What I found most interesting about the thread was the guilt. Emmett

passed

newborn screening and had typical hearing in both ears. He had a staph

infection

in his right ear at 10 days old that didn't resolve for 6 weeks. It

was a

horrible time for us. He had been hospitalized for RSV at 10 days old

and came

home with the infection. I've always felt responsible for that. My

guilt lies in

" allowing " him to catch the RSV from visitors who came to our home.

I've often

thought if it were genetic it would be easier for me to accept, but

from what

I'm reading in all these posts, we mothers feel guilty no matter what

the cause!

Some days are worse than others still, but most days are just normal

days.

Emmett is a funny, bright, loving little boy who has a great sense of

humor

about his hearing loss. We've all learned so much from him. He's a

gift to us

and I'd never want him to be anyone other than who he is.

Good luck with your decisions, and welcome to the group,

johanna

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

Yahoo! Music Unlimited - Access over 1 million songs. Try it free.

[Guest guest]

Johanna thanks for sharing. I am realizing after reading posts like

yours that I am being kind of silly to feel guilty for things

unforeseen or out of my control. Just like you had no idea that he

would get RSV form people visiting so you shouldn't feel guilty, but

you do. So I guess s Mothers we just do sometimes no matter what.

LINDA

Re: new to group

wrote: <<I can't seem to get out of the cloud

of

guilt to make clear decision on what to do. >>

Hi, .

This thread has been very interesting to me. I have two children, Emma

(6 and

hearing) and Emmett (almost 4 and hard of hearing). Emmett's hearing

loss was

diagnosed last year when he was 2.5. At first, we found he has a

profound loss

in his right ear, which is unaided, and had typical hearing in his

left ear.

Since then, he has lost hearing and is now at 25 to 30 db in his left

ear. He

wears a hearing aid on his left ear. He started wearing the aid in

March. He

loves it. He gets tremendous gain from the aid, and is really great at

telling

us about what works for him and what doesn't when it's getting

programmed.

What I found most interesting about the thread was the guilt. Emmett

passed

newborn screening and had typical hearing in both ears. He had a staph

infection

in his right ear at 10 days old that didn't resolve for 6 weeks. It

was a

horrible time for us. He had been hospitalized for RSV at 10 days old

and came

home with the infection. I've always felt responsible for that. My

guilt lies in

" allowing " him to catch the RSV from visitors who came to our home.

I've often

thought if it were genetic it would be easier for me to accept, but

from what

I'm reading in all these posts, we mothers feel guilty no matter what

the cause!

Some days are worse than others still, but most days are just normal

days.

Emmett is a funny, bright, loving little boy who has a great sense of

humor

about his hearing loss. We've all learned so much from him. He's a

gift to us

and I'd never want him to be anyone other than who he is.

Good luck with your decisions, and welcome to the group,

johanna

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

Yahoo! Music Unlimited - Access over 1 million songs. Try it free.

[Guest guest]

Johanna thanks for sharing. I am realizing after reading posts like

yours that I am being kind of silly to feel guilty for things

unforeseen or out of my control. Just like you had no idea that he

would get RSV form people visiting so you shouldn't feel guilty, but

you do. So I guess s Mothers we just do sometimes no matter what.

LINDA

Re: new to group

wrote: <<I can't seem to get out of the cloud

of

guilt to make clear decision on what to do. >>

Hi, .

This thread has been very interesting to me. I have two children, Emma

(6 and

hearing) and Emmett (almost 4 and hard of hearing). Emmett's hearing

loss was

diagnosed last year when he was 2.5. At first, we found he has a

profound loss

in his right ear, which is unaided, and had typical hearing in his

left ear.

Since then, he has lost hearing and is now at 25 to 30 db in his left

ear. He

wears a hearing aid on his left ear. He started wearing the aid in

March. He

loves it. He gets tremendous gain from the aid, and is really great at

telling

us about what works for him and what doesn't when it's getting

programmed.

What I found most interesting about the thread was the guilt. Emmett

passed

newborn screening and had typical hearing in both ears. He had a staph

infection

in his right ear at 10 days old that didn't resolve for 6 weeks. It

was a

horrible time for us. He had been hospitalized for RSV at 10 days old

and came

home with the infection. I've always felt responsible for that. My

guilt lies in

" allowing " him to catch the RSV from visitors who came to our home.

I've often

thought if it were genetic it would be easier for me to accept, but

from what

I'm reading in all these posts, we mothers feel guilty no matter what

the cause!

Some days are worse than others still, but most days are just normal

days.

Emmett is a funny, bright, loving little boy who has a great sense of

humor

about his hearing loss. We've all learned so much from him. He's a

gift to us

and I'd never want him to be anyone other than who he is.

Good luck with your decisions, and welcome to the group,

johanna

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

Yahoo! Music Unlimited - Access over 1 million songs. Try it free.