I made the right decision coming here...

[Guest guest]

And thank you all. I can see that I made the right decision in

joining this group. I know that I have a lot of researching to do

and some things to take care of - the first being, I believe, to find

him another pediatrician! I noticed his ear canal was blocked almost

two months ago. I took him right away to the doctor..They said ear

wax build up. And then ear infection. And then ear wax build up

again. It seems to me that they could have at least done a little

research on it, especially being that they knew his right ear was

small when he was born. It kind of makes me angry that they they

didn't notice this before, and that it took until he was five months

old to diagnose him.

Steve, I believe I ran across a website you made for your son while I

was searching the web? Great website, btw, and your son is just

adorable. =)

I guess I have some time to think about the surgery part, huh? I

didn't know that he might be able to hear through his microtic

ear...I was told that he couldn't hear through it. I will explain to

him what his condition is and what that means and that he can have

surgery to fix it, but he doesn't have to. He may not want it, and

if he is terrified of it, I wouldn't want to do that to him. Besides,

growing up with a microtic ear and atresia from birth, it wouldn't be

like he knew what hearing from both ears was like. He would adapt and

his hearing, to him, would be perfectly normal. =) But I guess we

still have some time before we have to cross that bridge.

We went to see a specialist at the Capital Region Otolaryngology Head

& Neck Group, LLP. We saw a Dr. Mouzakes. He didn't " grade "

Brennen's condition, he just said that it was a " mild " condition and

that he's seen it more severe. I have a digital camera so maybe I

could take a picture and post it on his website and some one could

perhaps tell me what they think?

For those of you who have older children or have grown up with the

condition, what can I expect as Brennen grows? I've already noticed

that he looks around for the sounds, when people are talking to him,

etc. I know that this will continue, but should it affect him in any

other ways? I just want to know how I can maximize his enjoyment of

his childhood. =) His happiness is most important to me.

I also would like to know how to deal with people who make comments

on his ear....It makes me angry (he's only five months old, and

already his uncle has asked if he was going to be " weird like that "

for the rest of his life and his cousin said that he " had a freak

ear " and " was part elf. " ) These comments make me angry because there

is nothing wrong with him, he's perfectly normal, a healthy,

beautiful baby boy, and I don't want him to grow up having to deal

with heartless comments that hurt his feelings. So how should I

respond? (I responded to the first by ignoring him, because he's

quite old enough to watch his mouth now,being 23, especially when it

concerns MY child, and the second, because he was just a kid, I

figured that he didn't know how to voice his questions in a kind way,

so I just explianed to him that he was NOT part elf,nor a freak, and

that he was just fine. I have already made it clear, that anyone who

makes fun of him will have to answer to me.) These were family

situations. Should I just explain his condition and emphasize that

he's a normal little boy? I've been wondering if any of you have

dealt with this and how you handled it.

Thanks again everyone. I am amazed at how much I will be able to

learn from you all, and /I look forward to being a part of this group

for a long long time. IT's a great group, and from what i can see, so

are all of you!

Thanks and {{{{Hugs}}}}} to everyone =)

Crystal

Brennen 02/07/02

[Guest guest]

I guess I have some time to think about the surgery part, huh? I

didn't know that he might be able to hear through his microtic

ear...I was told that he couldn't hear through it. I will explain to

him what his condition is and what that means and that he can have

surgery to fix it, but he doesn't have to. He may not want it, and

if he is terrified of it, I wouldn't want to do that to him. Besides,

growing up with a microtic ear and atresia from birth, it wouldn't be

like he knew what hearing from both ears was like. He would adapt and

his hearing, to him, would be perfectly normal. =)

hi crystal

i believe (others disagree) that where surgery can correct the microtia (other health issues notwithstanding), why not do it?

there's no points for martyrdom in parenting a child where options exist that have helped thousands of other kids before yours. why agonize over whether he will be terrified of surgery ? a kid will trust his parents to guide him through this. when he's 7, there will be 2 choices:

1) it will all be a hazy memory and he will be very comfortable with his looks, because they are unremarkable

or

2) he (and you) will be fighting this issue for the rest of his childhood. the taunting and bad feelings will persist no matter how self-accepting and confident he is about his difference. my question is always: why put a kid through it , IF YOU DON'T HAVE TO??

as for atresia repair to restore natural hearing, how could a parent turn it down? what normal kid WOULDN't prefer NOT to have surgery? a kid will trust his parents ...(sound familiar?)

when he's 7 and hearing normally, it will all be a hazy memory...

OR.....

i know there are some here who are anti-surgery.

they have their reasons.

this is only addressed to those who seemingly have no reason NOT to have normal ears through a surgical procedure, and NOT to have normal hearing.

i assure you....

when its over, its over.

and you, and your child will be forever grateful you did it.

if you dont beleieve ME

come interview my KIDS on october 6th.

we usually have about a dozen of them...

jack

[Guest guest]

Oh Crystal, big hugs, I can't believe the comments your family made. I wouldn't expect those comments from strangers, let alone family! I don't think I would have been as nice as you with my comments. I tell our son Zachary (28 months) when he touches ' ear that God gave him a special ear. Last week when we were at the dr. office a little girl came up and asked what ' head band was for (his BCHA) and I simply told her it was a hearing aid and it helps him to hear us. I acted like it was no big deal and she rubbed and patted his head and was on his way. I find it refreshing when people just ask questions instead of ignore it because I know they are thinking the questions! Oh, and when was born the Pediatrician on-call thought he had an excessive amount of ear wax in his right ear (severe stenotic) but his ENT informed us he didn't see anything like that. I wished that Pediatrician would have just kept his mouth shut with us, he did more harm than good as he had no idea what he was talking about.

More hugs to you,

Christie and

-----Original Message-----From: crb_2000_080500 Sent: Saturday, July 20, 2002 11:23 AMTo: AtresiaMicrotia Subject: I made the right decision coming here...And thank you all. I can see that I made the right decision in joining this group. I know that I have a lot of researching to do and some things to take care of - the first being, I believe, to find him another pediatrician! I noticed his ear canal was blocked almost two months ago. I took him right away to the doctor..They said ear wax build up. And then ear infection. And then ear wax build up again. It seems to me that they could have at least done a little research on it, especially being that they knew his right ear was small when he was born. It kind of makes me angry that they they didn't notice this before, and that it took until he was five months old to diagnose him.Steve, I believe I ran across a website you made for your son while I was searching the web? Great website, btw, and your son is just adorable. =)I guess I have some time to think about the surgery part, huh? I didn't know that he might be able to hear through his microtic ear...I was told that he couldn't hear through it. I will explain to him what his condition is and what that means and that he can have surgery to fix it, but he doesn't have to. He may not want it, and if he is terrified of it, I wouldn't want to do that to him. Besides, growing up with a microtic ear and atresia from birth, it wouldn't be like he knew what hearing from both ears was like. He would adapt and his hearing, to him, would be perfectly normal. =) But I guess we still have some time before we have to cross that bridge.We went to see a specialist at the Capital Region Otolaryngology Head & Neck Group, LLP. We saw a Dr. Mouzakes. He didn't "grade" Brennen's condition, he just said that it was a "mild" condition and that he's seen it more severe. I have a digital camera so maybe I could take a picture and post it on his website and some one could perhaps tell me what they think? For those of you who have older children or have grown up with the condition, what can I expect as Brennen grows? I've already noticed that he looks around for the sounds, when people are talking to him, etc. I know that this will continue, but should it affect him in any other ways? I just want to know how I can maximize his enjoyment of his childhood. =) His happiness is most important to me.I also would like to know how to deal with people who make comments on his ear....It makes me angry (he's only five months old, and already his uncle has asked if he was going to be "weird like that" for the rest of his life and his cousin said that he "had a freak ear" and "was part elf.") These comments make me angry because there is nothing wrong with him, he's perfectly normal, a healthy, beautiful baby boy, and I don't want him to grow up having to deal with heartless comments that hurt his feelings. So how should I respond? (I responded to the first by ignoring him, because he's quite old enough to watch his mouth now,being 23, especially when it concerns MY child, and the second, because he was just a kid, I figured that he didn't know how to voice his questions in a kind way, so I just explianed to him that he was NOT part elf,nor a freak, and that he was just fine. I have already made it clear, that anyone who makes fun of him will have to answer to me.) These were family situations. Should I just explain his condition and emphasize that he's a normal little boy? I've been wondering if any of you have dealt with this and how you handled it.Thanks again everyone. I am amazed at how much I will be able to learn from you all, and /I look forward to being a part of this group for a long long time. IT's a great group, and from what i can see, so are all of you!Thanks and {{{{Hugs}}}}} to everyone =)CrystalBrennen 02/07/02

[Guest guest]

---

Christie,

I am surprised that I didn't blow up at them myself. I certainly

wanted to! That's so sweet about Zachary and that other little

girl. I've noticed that often children have less hang ups about

these kind of things than adults do, and it's sad, really. It also

makes me mad when people ignore it because it's like they think

there's something wrong with him, and there isn't. I'm not ashamed

of his ear...They shouldn't be either. That's what I think anyway.

Brennen always attracts attention wherever we go though, lol. I'm

sure (and Lachie and all the other special kids!) do too. I

mean, how can you resist someone as adorable as our kids? Lol.

Sometimes I think that people don't even notice his ear.

As for my family, I can't believe it either. My brother in law is

kind of a jerk anyway - he does a lot of stuff I don't agree with,

but I just keep my mouth shut because he's the one that has to live

his life, not me. But when it comes to my son...Oh. That time I was

sooo angry, I did't trust myself to talk. He got the message

however. =)

And my cousin, he's 11 years old, but personally I think that that

should be quite old enough not to pick on a baby. The next person

who says anything like that to him better run, though. =)

Take care,

Crystal - ps. Why is it that children are more accepting than

adults? Just wondering. =)

Brennen - is lucky to have such a nice family. I'm still

trying to talk my mom into make ME the big brother.

In AtresiaMicrotia@y..., " Christie Weiss " wrote:

> Oh Crystal, big hugs, I can't believe the comments your family

made. I

> wouldn't expect those comments from strangers, let alone family! I

don't

> think I would have been as nice as you with my comments. I tell

our son

> Zachary (28 months) when he touches ' ear that God gave him

a

> special ear. Last week when we were at the dr. office a little

girl came up

> and asked what ' head band was for (his BCHA) and I simply

told her

> it was a hearing aid and it helps him to hear us. I acted like it

was no

> big deal and she rubbed and patted his head and was on his way. I

find it

> refreshing when people just ask questions instead of ignore it

because I

> know they are thinking the questions! Oh, and when was

born the

> Pediatrician on-call thought he had an excessive amount of ear wax

in his

> right ear (severe stenotic) but his ENT informed us he didn't see

anything

> like that. I wished that Pediatrician would have just kept his

mouth shut

> with us, he did more harm than good as he had no idea what he was

talking

> about.

>

> More hugs to you,

>

> Christie and

> I made the right decision coming

here...

>

>

> And thank you all. I can see that I made the right decision in

> joining this group. I know that I have a lot of researching to do

> and some things to take care of - the first being, I believe, to

find

> him another pediatrician! I noticed his ear canal was blocked

almost

> two months ago. I took him right away to the doctor..They said

ear

> wax build up. And then ear infection. And then ear wax build up

> again. It seems to me that they could have at least done a little

> research on it, especially being that they knew his right ear was

> small when he was born. It kind of makes me angry that they they

> didn't notice this before, and that it took until he was five

months

> old to diagnose him.

> Steve, I believe I ran across a website you made for your son

while I

> was searching the web? Great website, btw, and your son is just

> adorable. =)

> I guess I have some time to think about the surgery part, huh? I

> didn't know that he might be able to hear through his microtic

> ear...I was told that he couldn't hear through it. I will

explain to

> him what his condition is and what that means and that he can have

> surgery to fix it, but he doesn't have to. He may not want it,

and

> if he is terrified of it, I wouldn't want to do that to him.

Besides,

> growing up with a microtic ear and atresia from birth, it

wouldn't be

> like he knew what hearing from both ears was like. He would adapt

and

> his hearing, to him, would be perfectly normal. =) But I guess

we

> still have some time before we have to cross that bridge.

> We went to see a specialist at the Capital Region Otolaryngology

Head

> & Neck Group, LLP. We saw a Dr. Mouzakes. He didn't " grade "

> Brennen's condition, he just said that it was a " mild " condition

and

> that he's seen it more severe. I have a digital camera so maybe I

> could take a picture and post it on his website and some one could

> perhaps tell me what they think?

> For those of you who have older children or have grown up with the

> condition, what can I expect as Brennen grows? I've already

noticed

> that he looks around for the sounds, when people are talking to

him,

> etc. I know that this will continue, but should it affect him in

any

> other ways? I just want to know how I can maximize his enjoyment

of

> his childhood. =) His happiness is most important to me.

> I also would like to know how to deal with people who make

comments

> on his ear....It makes me angry (he's only five months old, and

> already his uncle has asked if he was going to be " weird like

that "

> for the rest of his life and his cousin said that he " had a freak

> ear " and " was part elf. " ) These comments make me angry because

there

> is nothing wrong with him, he's perfectly normal, a healthy,

> beautiful baby boy, and I don't want him to grow up having to deal

> with heartless comments that hurt his feelings. So how should I

> respond? (I responded to the first by ignoring him, because he's

> quite old enough to watch his mouth now,being 23, especially when

it

> concerns MY child, and the second, because he was just a kid, I

> figured that he didn't know how to voice his questions in a kind

way,

> so I just explianed to him that he was NOT part elf,nor a freak,

and

> that he was just fine. I have already made it clear, that anyone

who

> makes fun of him will have to answer to me.) These were family

> situations. Should I just explain his condition and emphasize

that

> he's a normal little boy? I've been wondering if any of you have

> dealt with this and how you handled it.

> Thanks again everyone. I am amazed at how much I will be able to

> learn from you all, and /I look forward to being a part of this

group

> for a long long time. IT's a great group, and from what i can

see, so

> are all of you!

> Thanks and {{{{Hugs}}}}} to everyone =)

> Crystal

> Brennen 02/07/02

>

>

>

[Guest guest]

I made the right decision coming here...> > > And thank you all. I can see that I made the right decision in> joining this group. I know that I have a lot of researching to do> and some things to take care of - the first being, I believe, to find> him another pediatrician! I noticed his ear canal was blocked almost> two months ago. I took him right away to the doctor..They said ear> wax build up. And then ear infection. And then ear wax build up> again. It seems to me that they could have at least done a little> research on it, especially being that they knew his right ear was> small when he was born. It kind of makes me angry that they they> didn't notice this before, and that it took until he was five months> old to diagnose him.> Steve, I believe I ran across a website you made for your son while I> was searching the web? Great website, btw, and your son is just> adorable. =)> I guess I have some time to think about the surgery part, huh? I> didn't know that he might be able to hear through his microtic> ear...I was told that he couldn't hear through it. I will explain to> him what his condition is and what that means and that he can have> surgery to fix it, but he doesn't have to. He may not want it, and> if he is terrified of it, I wouldn't want to do that to him. Besides,> growing up with a microtic ear and atresia from birth, it wouldn't be> like he knew what hearing from both ears was like. He would adapt and> his hearing, to him, would be perfectly normal. =) But I guess we> still have some time before we have to cross that bridge.> We went to see a specialist at the Capital Region Otolaryngology Head> & Neck Group, LLP. We saw a Dr. Mouzakes. He didn't "grade"> Brennen's condition, he just said that it was a "mild" condition and> that he's seen it more severe. I have a digital camera so maybe I> could take a picture and post it on his website and some one could> perhaps tell me what they think?> For those of you who have older children or have grown up with the> condition, what can I expect as Brennen grows? I've already noticed> that he looks around for the sounds, when people are talking to him,> etc. I know that this will continue, but should it affect him in any> other ways? I just want to know how I can maximize his enjoyment of> his childhood. =) His happiness is most important to me.> I also would like to know how to deal with people who make comments> on his ear....It makes me angry (he's only five months old, and> already his uncle has asked if he was going to be "weird like that"> for the rest of his life and his cousin said that he "had a freak> ear" and "was part elf.") These comments make me angry because there> is nothing wrong with him, he's perfectly normal, a healthy,> beautiful baby boy, and I don't want him to grow up having to deal> with heartless comments that hurt his feelings. So how should I> respond? (I responded to the first by ignoring him, because he's> quite old enough to watch his mouth now,being 23, especially when it> concerns MY child, and the second, because he was just a kid, I> figured that he didn't know how to voice his questions in a kind way,> so I just explianed to him that he was NOT part elf,nor a freak, and> that he was just fine. I have already made it clear, that anyone who> makes fun of him will have to answer to me.) These were family> situations. Should I just explain his condition and emphasize that> he's a normal little boy? I've been wondering if any of you have> dealt with this and how you handled it.> Thanks again everyone. I am amazed at how much I will be able to> learn from you all, and /I look forward to being a part of this group> for a long long time. IT's a great group, and from what i can see, so> are all of you!> Thanks and {{{{Hugs}}}}} to everyone =)> Crystal> Brennen 02/07/02> > >

[Guest guest]

i know there are some here who are anti-surgery.

they have their reasons.

I don't know if this is fair Jack. I don't know of anyone on this list who is "anti-surgery". We have chosen not to have 's ears reconstructed at this time...we aren't "anti-surgery".

I agree that surgery is a fantastic option, and it has brought great results to many families. It's just not for us right now.

Steve

i yield.

i should have said:

"i know that there are those who have chosen not to have ear reconstructions at this time..."

it's more accurate, and my remark was not intended to disrespect those who choose not, nor, those who are "anti" (if in fact there are any). i tried to respect their differing opinion.

jack

[Guest guest]

> Steve, I believe I ran across a website you made for your son while I

> was searching the web? Great website, btw, and your son is just

> adorable. =)

Aw shucks...Thanks.

> We went to see a specialist at the Capital Region Otolaryngology Head

> & Neck Group, LLP. We saw a Dr. Mouzakes. He didn't " grade "

> Brennen's condition, he just said that it was a " mild " condition and

> that he's seen it more severe. I have a digital camera so maybe I

> could take a picture and post it on his website and some one could

> perhaps tell me what they think?

You can get an idea from http://www.microtia.net/english/Classification.htm.

You should be able to grade it yourself from these.

> For those of you who have older children or have grown up with the

> condition, what can I expect as Brennen grows? I've already noticed

> that he looks around for the sounds, when people are talking to him,

> etc

This is good. He is scanning for the source of the sound. Because he has

hearing in one ear (mono), he can't tell what direction the sound is coming

from, and so he scans the area to find the source.

>. I know that this will continue, but should it affect him in any

> other ways? I just want to know how I can maximize his enjoyment of

> his childhood. =) His happiness is most important to me.

He may have troubles in noisy environments as well. With Monaural hearing

you can't separate sounds from behind and beside you from the sounds you are

trying to hear in front of you. Maintaining eye contact when you speak to

him will help. Also, if you are going to talk to him, try to get his

attention first by calling his name, then talk after he looks at you. These

are both good strategies for anyone with impaired hearing.

> These comments make me angry because there

> is nothing wrong with him, he's perfectly normal, a healthy,

> beautiful baby boy, and I don't want him to grow up having to deal

> with heartless comments that hurt his feelings. So how should I

> respond?

You have the right attitude, he is perfectly healthy normal child. Our

approach has always been " matter of fact " , and we talk very freely about

's ears, and we have taught him to as well. This way there is no

hiding, and nothing to be ashamed about. However, I can't say how I would

react to those comments you listed, we haven't come across that strong of a

reaction.

> (I responded to the first by ignoring him, because he's

> quite old enough to watch his mouth now,being 23, especially when it

> concerns MY child, and the second, because he was just a kid, I

> figured that he didn't know how to voice his questions in a kind way,

> so I just explianed to him that he was NOT part elf,nor a freak, and

> that he was just fine. I have already made it clear, that anyone who

> makes fun of him will have to answer to me.)

It sounds to me handled it VERY well. It is best not to rise to comments

like this and explode. But what you did was probably much more powerful.

In talking about it calmly, you have showed that his comments were

inappropriate. And I think your assessment of a 23 year old not being able

to form a question, is probably right on the money. I only hope I would

have reacted the same way.

> These were family

> situations. Should I just explain his condition and emphasize that

> he's a normal little boy? I've been wondering if any of you have

> dealt with this and how you handled it.

I think so. I also think when you respond to people, without a " hushed " or

" ashamed " voice, it puts them as ease, and they will likely feel more

comfortable in either asking questions, or just move on to how cute/smart he

is.

> Thanks again everyone. I am amazed at how much I will be able to

> learn from you all, and /I look forward to being a part of this group

> for a long long time.

It won't be long, and you will be dishing out the advice to help others.

Glad to have you on board!

Steve

[Guest guest]

i know there are some here who are anti-surgery.they have their reasons.

I don't know if this is fair Jack. I don't know of anyone on this list who is "anti-surgery". We have chosen not to have 's ears reconstructed at this time...we aren't "anti-surgery".

I agree that surgery is a fantastic option, and it has brought great results to many families. It's just not for us right now.

Steve