New Member

[Guest guest]

WE have hundreds of recipes, plus if you scroll down you will find induction help and menus too. Just go to your groups and check out the Atkins Challengers.

Joya"Blind Dogs See With Their Hearts"http://www.blinddogs.com

Re: new member

can I have some? I am having a nice cheese dog but would love somegood dinners!!

[Guest guest]

l-glutimine helps with sugar cravings is that what you mean? also chromium

catherine

-----Original Message-----From: Meg Sent: Sunday, February 17, 2002 11:35 PMTo: AtkinsChallengers Subject: Re: new member

Will someone remind me of the supplement that is supposed to be an appetite suppressant?

Thanks,

Meg

new member

Please welcome (softwinterwhispers) from my Cocker Spaniel list to our list She is an Atkins veteran in the same boat as lots of us...put some weight back on after losing it.

Glad to see you here, ...please go check out our Yahoo site files as we have a lot of interesting things there. Also, welcome to K9Dodo who sounds like a doggy person too

Joya"Blind Dogs See With Their Hearts"http://www.blinddogs.com*Take a peek at the Challengers "Before" pictures in our 2002 photo album at our Yahoo page, click on photos 2002 or try directly at: http://photos.groups.yahoo.com/group/atkinschallengers/lst?.dir=/ & .src=gr & .view=t *Would you like some great RECIPES? Click here:http://groups.yahoo.com/group/AtkinsChallengers/files*To contact any of the the list moderators, you can email them at: (jocee131@...) Norma (norwood@...) JJ (cybercat1@...) Dianne (lambart@...) Joya (bocock@...)

[Guest guest]

anything else taht can help with the craving?

--

" This above all, - to thine own

self be true; "

" No legacy is so rich as honesty. "

- Shakespeare

> Messagel-glutimine helps with sugar cravings is that what you mean? also

> chromium

> catherine

> Re: new member

>

>

> Will someone remind me of the supplement that is supposed to be an

> appetite suppressant?

> Thanks,

> Meg

>

> new member

>

>

> Please welcome (softwinterwhispers) from my Cocker Spaniel list

> to our list She is an Atkins veteran in the same boat as lots of

> us...put some weight back on after losing it.

>

> Glad to see you here, ...please go check out our Yahoo site files

> as we have a lot of interesting things there. Also, welcome to K9Dodo who

> sounds like a doggy person too

>

> Joya

> " Blind Dogs See With Their Hearts "

> http://www.blinddogs.com

>

> *Take a peek at the Challengers " Before " pictures in our 2002 photo

> album at our Yahoo page, click on photos 2002 or try directly at:

> http://photos.groups.yahoo.com/group/atkinschallengers/lst?.dir=/&.src=gr&.v

> iew=t

> *Would you like some great RECIPES? Click here:

> http://groups.yahoo.com/group/AtkinsChallengers/files

> *To contact any of the the list moderators, you can email them at:

> (jocee131@...) Norma (norwood@...)

> JJ (cybercat1@...) Dianne (lambart@...)

> Joya (bocock@...)

>

>

[Guest guest]

Welcome .

Always glad to have new blood. And one who likes dogs too.

Norma

[Guest guest]

l-glutamine....l-carnitine (you can find these at GNC's). The cravings go away in a few days, though, usually as the sugar leaves your body.

Joya"Blind Dogs See With Their Hearts"http://www.blinddogs.com

----- Original Message ----- anything else taht can help with the craving?

[Guest guest]

Oh, here is Sylvia... Ok, go it now. K9dodo...

K9dodo is Sylvia also from my Cocker List! So hi to you too Sylvia We speed up during the week.

[Guest guest]

<< If you do meet Dr. De La Cruz please share your experiences with us non

Californians! >>

Of Course! Of Course! I think there will be others in this group that get

there before me. I guess I have put off meeting with any of the local drs.

(Reinsch/De La Cruz, sure there are others) because I feel like I have time

on our side with Brayden only being 18 months. I know it will be a huge

fight with my HMO so I'm putting it off a bit.

Autumn

[Guest guest]

Does anybody know if it’s any point in having bone anchored hearing aid at just one (right) ear?

This is debatable. Indeed aiding a child with a unilateral hearing loss has been proven to be beneficial. I think the bottom line is, the more sound information, and the clearer it is, the better a child can hear and learn.

Whether it is necessary or not is the question. A child can definitely function with unilateral hearing. My son has bilateral Atresia, and wears a bone conduction aid. This means he has monaural hearing. His speech and language is very good, and he functions quite well. However, there are still, and always will be, situations where he can't function as well as someone with no hearing loss. This is in part due to the quality of the bone conduction aid, and partly due to the fact that he hears in mono.

I would suggest you talk to a few audiologists and speech pathologists, and get their opinions.

Steve

[Guest guest]

Hello Turid,

Welcome to the group! I am sure you will receive many welcoming responses to your questions, I hope I can help answer one or two and give you a starting point to think about.

In regards to your question about enlarging ear canals, many people on this list are familiar with that operation. It is called a canalplasty and tympanoplasty ( a new canal and new eardrum are constructed). There are several surgeons in the USA who are experienced in this surgery. The primary surgeon discussed on this list is Dr. Jahrsdoerfer, from University of Virginia. Many people here know more about him personally than I do. I have met him only one time, in Houston (he travels to Houston, Texas once a month). My son also has bi-lateral atresia/ microtia. His ear canals on both sides sound like your daughters left canal. He has a 40dB conductive hearing loss. It is my understanding that all children with bi-lateral atresia require a bone conduction hearing aid. Is your daughters atresia bi-lateral? If in any doubt, I would definitely put a BCHA on. ("there is always the doubt that it is enough to develop normal speech") We received bad information from an audiologist who was highly recommended in our area. Our son is now in speech therapy as he went unaided for two years when he should always have worn an aid. Please understand I do now know your daughter and what her hearing tests indicate, I am just sharing our experience so you can take what is helpful to you in making decisions.

I know you will find this group to be invaluable in helping you help your daughter. I dont't know what I would have done without it. Virtually all the decisions I have made regarding 's microtia/atresia have been made with the help of the knowledge gained here.

Good luck to you and Oda,

Regards,

Sally, mom to , 3 BCHA

New member

Hello!

My name is Turid and I live in Norway. It was a relief finding and joining this group!

I have a one year old daughter (Oda) who is born with bilateral microtia. Her left ear look, however, quite normal. The ear canal is very narrow, so the doctor can't look all the way into the drum (you have to excuse my bad English..). Therefore she been taking all kind of tests to measure her hearing ability. However, the narrow ear canal doesn’t make it possible to do the test in a proper way(except from the "sound" test which indicate that she has a approximately normal hearing at her left ear). The way she respond in general also indicate that she can hear normal at her left ear. She reacts when we call out her name, she can say mummy, daddy and goodbye (in Norwegian of course..). All these things together indicate that she can hear quite normal (at her left ear). But there is always the doubt if its enough to develop normal speech.

My question is; I’ve heard that it is possible to expand the ear canal, does anyone have any experience with that?

Does anybody know if it’s any point in having bone anchored hearing aid at just one (right) ear?

Am I the only Norwegian member of this group..?

Regards

Turid

[Guest guest]

Hey

I was a member of this group earlier. My sister, , still corresponds with you people. My nephew, ahax, is in Pakistan.

I wanted some info on who i can talk to regarding insurance issues and stuff, since i live in LA now.

I also wanted the address of the doc in Childrens hospital. I sent him an email but i didn't receive a reply.

Thank You

Sincerely

Zuberi

Steve Kazemir wrote:

Does anybody know if it’s any point in having bone anchored hearing aid at just one (right) ear?

This is debatable. Indeed aiding a child with a unilateral hearing loss has been proven to be beneficial. I think the bottom line is, the more sound information, and the clearer it is, the better a child can hear and learn.

Whether it is necessary or not is the question. A child can definitely function with unilateral hearing. My son has bilateral Atresia, and wears a bone conduction aid. This means he has monaural hearing. His speech and language is very good, and he functions quite well. However, there are still, and always will be, situations where he can't function as well as someone with no hearing loss. This is in part due to the quality of the bone conduction aid, and partly due to the fact that he hears in mono.

I would suggest you talk to a few audiologists and speech pathologists, and get their opinions.

Steve

[Guest guest]

They told us to read aloud to her for an hour a day from the time she got her bone conduction aid, so I read through the whole set of Childcraft books and everything else I could find.

This is good advice for ANY child!! We read to both our children every night. , now 6 1/2 reads chapter books to himself. He LOVES reading. Our other son, now 4 1/2, is at the early stages of reading himself. He can sound out words, and is thrilled by it.

If I had had a normal hearing child after Bethany, I would have used the same auditory stimulation techniques just to give that child the same language development advantages.

I agree 100%! We started the reading thing with for the same reasons you did with Bethany. But we have continued with our second (and will do so with our third...only 5 weeks to go!!) for the same reasons you have stated.

Steve

[Guest guest]

Hello Turid and Oda! I don't have any experiences with the BAHA, however,

you have come to the right place! Welcome! Love, beth

>

>Reply-To: AtresiaMicrotia

>To: AtresiaMicrotia >

>Subject: New member

>Date: Tue, 21 May 2002 20:45:08 +0200

>

>Hello!

>

>My name is Turid and I live in Norway. It was a relief finding and joining

>this group!

>

>I have a one year old daughter (Oda) who is born with bilateral microtia.

>Her left ear look, however, quite normal. The ear canal is very narrow, so

>the doctor can't look all the way into the drum (you have to excuse my bad

>English..). Therefore she been taking all kind of tests to measure her

>hearing ability. However, the narrow ear canal doesn't make it possible to

>do the test in a proper way(except from the " sound " test which indicate

>that she has a approximately normal hearing at her left ear). The way she

>respond in general also indicate that she can hear normal at her left ear.

>She reacts when we call out her name, she can say mummy, daddy and goodbye

>(in Norwegian of course..). All these things together indicate that she can

>hear quite normal (at her left ear). But there is always the doubt if its

>enough to develop normal speech.

>

> My question is; I've heard that it is possible to expand the ear

>canal, does anyone have any experience with that?

>

> a.. Does anybody know if it's any point in having bone anchored hearing

>aid at just one (right) ear?

> a.. Am I the only Norwegian member of this group..?

>

>

>Regards

>

>Turid

>

_________________________________________________________________

Chat with friends online, try MSN Messenger: http://messenger.msn.com

[Guest guest]

We do not have any abnormalies like this in either one of our

family histories.

I would like to know, for parents who have been where I am at, does

it get better? I mean does the emotions get better. This is all new

to us.

How can we better deal with the looks and stares. How do we become

the best parents for Zayne, a special needs child.

hi shelly

microtia (being born without an ear, or a tiny underdeveloped one) occurs in about 1 in 7,000 births. there is often NO connection to ANYthing, though you certainly had your traumatic episode what with the car crash and pain and all. neveretheless, the nicest people can give births to kids with microtia (atresia is the failure of the middle ear to develop normally, and may include the absence of a canal as well as other symptoms), and for no apparent reason. my son was born with microtia of the right ear, and bilateral atresia, like zayne.

surgeries starting at age 6 or so can correct microtia.

one doctor who is highly regarded as the plastic surgeon who's an expert is dr burt brent.

his website is www.earsurgery.com. you can learn a lot there.

some kids are also candidates for atresia repair. (my son was).

the fact that zayne has a working auditory nerve is certainly a good sign. i am in no way an expert on audiology reports, but i think that zaynes report seems common for kids with atresia. after all, there is no canal. there's no eardrum. often the ossicles (those little bones, hammer, anvil, stirrup) may be fused together and therefore not freely vibrating from the eardrum. atresia repair might correct this. if zayne is lucky enough to be a good candidate for that, he might even have normal hearing, without an aid.

(my son was that lucky)

surgical repair of atresia is difficult, and complicated, but it can work.

one great doctor repairing atresia is dr jahrsdoerfer, from charlottesville, va. he also goes to andersson hospital in houston once a month.

irrespective of the surgeries down the road, that you choose to do, or not, zayne has the best mom and dad money could buy: you.

and youve got the best kid ever: zayne.

thats the very big picture and all the rest, (much of it, to be sure) will fall into place over the next few years.

its a bonding opportunity time just like it is for every other kid you know, but more special because its yours.

enjoy it.

the people here are friendly and knowledgeable and will help in a thousand ways.

it gets better shelly.

every day, in every way, a thousand times over, i promise.

even the setbacks will (eventually) make you more like a trooper.

we're glad you're here.

jack

[Guest guest]

> Hello, My name is , I am a new member of this group. Thank you

> for accepting me.

Welcome Aboard !!

> On 2-22-02 I had a baby boy. His name is Zayne.

Congratulations!

> On the day of the ABR, emotions were running high, we were hoping for

> great news.

> The ABR was performed, Zayne was 6 weeks old at this time. The

> results were as follows:

>

> Air conduction testing yielded no response to click stimuli at the

> limits of the equipment {102 dB nHL}, bilaterally. These findings are

> consistant with a severe to possibly profound periphal auditory

> impairment for the 2000 to 4000 Hz range bilaterally. Unmasked bone

> conduction testing yielded a synchronous response to click stimuli as

> low as 10 db nHL for the right ear and 20 db nHL gor the left ear.

>

> Could someone please explain what all that means??????????

> Zayne now has a bone coducting aid.

I'll do my best. I hope others check my explanation and please correct me

if I am wrong.

First of all, I think these results are a little confusing. The air

conduction, at 100dB definitely would put Zayne at profoundly deaf.

However, using the bone conduction, and seeing response at 10dB or 20dB is

great news.

When had the test, we saw a response to air conduction at 75dB-80dB,

this is quite loud. With the bone conduction we saw responses as low as

15-20dB. These results meant had a purely conductive hearing loss.

That means that at least one of his cochlea was complete and functioning

properly. It is only that there is no path for the air to conduct the sound

signals to the cochlea that was causing the problem. There was no

sensory-neural hearing loss.

With Zayne, the fact that he showed good response with the bone conduction

shows too that he has at least one functioning cochlea (he may have both,

but with the unmasked bone conduction test, you can't tell if it is just

one, or both cochlea picking up the sound). It is great that you have a

bone conduction hearing aid for Zayne. If he shows a response to sounds as

quiet as 10-20dB with the ABR, he should do very well with a bone conduction

aid. got his Aid at 2 months old, and is still wearing it today (now

7 years old). His speech has developed normally (in fact ahead of most of

his pears). I don't think this would have happened without the hearing aid.

> Zayne also is enrolled in E.C.I and the school districts special

> education department. The sign language teacher from there comes out

> twice a month, as does E.C.I.

> We are trying to learn sign , but it is seeming very hard to us.

> We have purchased The Joy Of Signing, along with some other books ,to

> better help us.

Wow, you are doing great as parents. Learning a new language is always

difficult. Learning sign can be a little more challenging sometimes to get

used to using your hands instead of your voice.

We used baby signs with when he was young, and I learned as we went

along. has now dropped signing and uses his voice. We still use sign

as a " helper " in noisy situations, or when isn't wearing his Aid (when

swimming).

> This has been a very stressful time for me and my family. I have

> blamed my self. Everyone wants the perfect child. And when Zayne was

> born I blamed my self. I was in a car wreck in September 2001, and

> almost miscarried Zayne. On top of that I was on alot of pain

> medication,I was also given Morphine.

> Our Peditrician said that the pain medication did not do this to our

> baby.

This is NOT YOUR FAULT!!! You did nothing wrong!! In fact, from what I

read in what you are doing now, you are doing everything right! I think

most people on this list have gone through the same emotions. Noone knows

for sure the cause of Atresia/Microtia. only that sometimes it is a symptom

all by itself, and sometimes it is part of a syndrome (Hemi facial

Microsomnia, Treacher , BOR). Others on this list can fill you in on

these, but I think usually if it is a syndrome, there are other facial signs

that the Dr's would see.

> I would like to know, for parents who have been where I am at, does

> it get better? I mean does the emotions get better. This is all new

> to us.

> How can we better deal with the looks and stares. How do we become

> the best parents for Zayne, a special needs child.

Face the stares upfront. We talk about 's ears very freely. There is

nothing to be ashamed of. I have on occasion come across some narrow minded

people who don't understand, and aren't willing to. But I find most people,

when I catch them staring, they will ask a question and I explain it, and it

is no longer a big deal. This really only happened when was a baby (a

boy with a head band, everyone thinks he is a girl, and we go through the

explanation of why he needs the headband etc. etc.)

> I look forward to hearing anyones opinions and or advice.

You may want to look at my web page (www.pde.com/~kazemir and look at how we

held 's hearing aid on. We removed the metal headband, and used a

cloth one to be more comfortable).

Keep asking questions . There is a lot of information available on

this list.

Steve

[Guest guest]

Hi , welcome to the friendliest place on the web! I had a boy on 02/05/2002 and his name is ! He also has bilateral microtia/atresia and has been wearing a BCHA (Bone Conduction Hearing Aid) for a month now. In fact, we take him tomorrow to the audiologist to get him tested in a sound booth (or at least they are going to try) to see how he's doing. ' left ear is completely closed and just looking at his right ear it looks normal, but if you really study it you can tell it's a little "off". Thankfully, he only has a 40-50 dB air loss in this ear, with his bone conduction test coming back normal. We also learned that his left ear seems to have all of the "parts" so once it is reconstructed he should be able to hear from this ear as well.

I think Steve explained the hearing results pretty well, much better than I could have done since I am so new to this. I have enrolled in an Early Intervention class with our county and plan on doing some sign language with him as well, although at this point in time I don't feel it's critical to be fluent in it. There is a really good website that has video that shows you sign if you're interested. Here's the link: http://www.handspeak.com (I believe that's the correct link, please let me know if it's not)

I know what you mean about it being such a stressful time. I believe the thing that has helped me the most in accepting ' condition and doing everything I can for him is this group. When was born the pediatrician on call (thank goodness not our own) could only suggest we see a Pediatric ENT and to keep ' hair a little longer! I hope to raise my son to be confident enough that he doesn't feel the need to hide his deformity. The more you read here, I believe the stronger you will become. Before had his hearing test I was terrified and didn't want to know the outcome, didn't want him to have to wear a BCHA, didn't want to have to deal with the stares. I came to this group and got so many wonderful emails telling me that my feelings were not alone, they had all been through it. And you know what, as soon as the Dr. came to us with his results, a huge weight was lifted. Instead of the feeling of dread, I was so incredibly happy that we are able to get help. And the first time out in public with his BCHA instead of feeling dread, I felt proud that was mine and that God had given ME this very special gift. Because of I have learned to look at people with deformities, or disabilities, and smile, instead of quickly looking away like I didn't see them. I have found it much more refreshing when people ask about rather than ignore it and act like they don't see it.

Ok, after reading this email, I'm not sure I answered any of your questions, but I wanted to let you know that you are certainly not alone, and let you know the "place" I am in right now...and it's a pretty darn good place, thanks to this list! Like the poem says, "Welcome to Holland!"

Christie and

-----Original Message-----From: zaynerbayner Sent: Monday, July 15, 2002 7:53 PMTo: AtresiaMicrotia Subject: New MemberHello, My name is , I am a new member of this group. Thank you for accepting me.On 2-22-02 I had a baby boy. His name is Zayne. When he was born, his ears are underdeveloped with no visible ear canals. We were referred to Dr. Orval Brown by our Pediatrician.Dr. Brown is out of Childrens Med. Center of Dallas, Texas.On our consultation with Dr. Brown, we found out Zayne had Bilateral Aural Atresia. We had never heard of this nor had we ever seen it.We were schedled for an ABR,per Dr.On the day of the ABR, emotions were running high, we were hoping for great news.The ABR was performed, Zayne was 6 weeks old at this time. The results were as follows:Air conduction testing yielded no response to click stimuli at the limits of the equipment {102 dB nHL}, bilaterally. These findings are consistant with a severe to possibly profound periphal auditory impairment for the 2000 to 4000 Hz range bilaterally. Unmasked bone conduction testing yielded a synchronous response to click stimuli as low as 10 db nHL for the right ear and 20 db nHL gor the left ear.Could someone please explain what all that means??????????Zayne now has a bone coducting aid.Zayne also is enrolled in E.C.I and the school districts special education department. The sign language teacher from there comes out twice a month, as does E.C.I.We are trying to learn sign , but it is seeming very hard to us.We have purchased The Joy Of Signing, along with some other books ,to better help us.This has been a very stressful time for me and my family. I have blamed my self. Everyone wants the perfect child. And when Zayne was born I blamed my self. I was in a car wreck in September 2001, and almost miscarried Zayne. On top of that I was on alot of pain medication,I was also given Morphine.Our Peditrician said that the pain medication did not do this to our baby.We have been to a Genetics Dr. He ordered a Chromosone study.The study came back negative. The Dr. said this was just a birth defect. We do not have any abnormalies like this in either one of our family histories.I would like to know, for parents who have been where I am at, does it get better? I mean does the emotions get better. This is all new to us.How can we better deal with the looks and stares. How do we become the best parents for Zayne, a special needs child.I look forward to hearing anyones opinions and or advice.Thanks for your time to this matter. from Texas

[Guest guest]

Hi Silverio,

Welcome to the group my name is Georgie and my son is 5 months old with Atresia/Microtia on the right side. All the support you need you will get from this group. Always remember we are all in the same place.

Georgie

[Guest guest]

Hi and Zayne my name is Georgie and my son Anson was born 2/17/2002 with Atresia/Microtia on the right side. Our sons were born only days apart, in the time that I've had my son in my life I feel very blessed to have him. I was in shock when he was born I to had never seen or heard anything like this. I went through all the same feelings your going through it would break my heart when sonebody would be staring at him because I don't want anything to hurt my son. I love him and he was given to me for a reason when I go out in public now and somebody is looking at him and people start to whisper all I think about is they can never take away what my little boy means to me. I am very emotional when it comes to my son and I also have 2 year old son as well who was born fine. My son is unique and special and Microtia is not going to stop him from being the best he can be. I'm sorry for rambling welcome again hope to talk to you soon.

Georgie & Anson

[Guest guest]

Hi and Zayne - welcome to the group!

I can so much relate to how you are feeling. It is such a normal response

and I can remember feeling confused, worried, happy, sad-you name it when

Josh was born. Now as I reflect back, almost 10 years later, I feel happy,

thankful, blessed, confident, relieved, and my major worry is whether or not

Josh is wearing his bike helmet!

I think you will find that Zayne will grow to be very confident with himself

and who he is. Especially if you are very confident with him and who he is.

You are already a fantastic parent and advocate with all the help he is

getting! Wow, you are really getting him a lot of help in such a short

amount of time - fantastic!

In regard to stares and comments, I think a lot of people (especially kids)

will be very curious. Once their curiosity has been answered, they are very

accepting and don't really mention much. It really helps to have some

responses thought out ahead of time and rehearsed so you will feel more

comfortable. We used to tell people that, " God created Josh really special

and that he can do everything any other child can do, he simply doesn't have

an ear. " " Maybe when he's older, he'll decide to have a doctor make one for

him. " Then the kids would usually say ok and go play.

Take one day at a time, don't borrow worry - today has enough of it's own.

Zayne is and will continue to be very special. There is NOTHING YOU DID

to cause his atresia AND nothing you could have done to prevent it. His ears

were formed way before your accident and probably around the time of 8

weeks! What you CAN do is exactly what you're doing now. Love, love, love

him and care for him, encourage his special and unique individuality, and

get the best help you can for him. Oh, and give yourself a lot of pats on

the back, because you're doing a GREAT JOB!!!

God bless you and your sweet family! Love, beth

>

>Reply-To: AtresiaMicrotia

>To: AtresiaMicrotia

>Subject: New Member

>Date: Mon, 15 Jul 2002 23:53:05 -0000

>

>

>Hello, My name is , I am a new member of this group. Thank you

>for accepting me.

>

>On 2-22-02 I had a baby boy. His name is Zayne.

>When he was born, his ears are underdeveloped with no visible ear

>canals. We were referred to Dr. Orval Brown by our Pediatrician.

>Dr. Brown is out of Childrens Med. Center of Dallas, Texas.

>

>On our consultation with Dr. Brown, we found out Zayne had Bilateral

>Aural Atresia. We had never heard of this nor had we ever seen it.

>We were schedled for an ABR,per Dr.

>

>On the day of the ABR, emotions were running high, we were hoping for

>great news.

>The ABR was performed, Zayne was 6 weeks old at this time. The

>results were as follows:

>

>Air conduction testing yielded no response to click stimuli at the

>limits of the equipment {102 dB nHL}, bilaterally. These findings are

>consistant with a severe to possibly profound periphal auditory

>impairment for the 2000 to 4000 Hz range bilaterally. Unmasked bone

>conduction testing yielded a synchronous response to click stimuli as

>low as 10 db nHL for the right ear and 20 db nHL gor the left ear.

>

>Could someone please explain what all that means??????????

>

>Zayne now has a bone coducting aid.

>Zayne also is enrolled in E.C.I and the school districts special

>education department. The sign language teacher from there comes out

>twice a month, as does E.C.I.

>We are trying to learn sign , but it is seeming very hard to us.

>We have purchased The Joy Of Signing, along with some other books ,to

>better help us.

>

>This has been a very stressful time for me and my family. I have

>blamed my self. Everyone wants the perfect child. And when Zayne was

>born I blamed my self. I was in a car wreck in September 2001, and

>almost miscarried Zayne. On top of that I was on alot of pain

>medication,I was also given Morphine.

>Our Peditrician said that the pain medication did not do this to our

>baby.

>

>We have been to a Genetics Dr. He ordered a Chromosone study.

>The study came back negative. The Dr. said this was just a birth

>defect. We do not have any abnormalies like this in either one of our

>family histories.

>

>I would like to know, for parents who have been where I am at, does

>it get better? I mean does the emotions get better. This is all new

>to us.

>How can we better deal with the looks and stares. How do we become

>the best parents for Zayne, a special needs child.

>

>I look forward to hearing anyones opinions and or advice.

>

>Thanks for your time to this matter.

>

> from Texas

>

>

>

>

>

_________________________________________________________________

Chat with friends online, try MSN Messenger: http://messenger.msn.com

[Guest guest]

I did want to let you know that your

post struck a chord with me!

Pamela,

Mom to Connor, just turned 3, bilateral atresia/microtia

....and yours, as well, with me.

what an extraordinary family you are!

jack

[Guest guest]

Hi ,

Welcome to the board! My son Miles was born 3/22/02 with unilateral

microtia atresia. I know exactly what you're going through, since

I'm going through it myself.

First of all, YOU DID NOT CAUSE THIS. Now I understand this is hard

to accept. I've been told it repeatedly by several doctors and all

the literature says the same thing--it is not caused by anything the

mother did. While I know this is true in my head, I find it hard to

accept in my heart. I think it's natural for mothers to feel guilty

about even small things, let alone big things like this. We seem to

be programmed for guilt! :-) I hope that eventually I can get over

the feelings of guilt. I just have to remind myself everyday what

all the experts are telling me.

As far as does it get better? I had a very hard time at first and

was even diagnosed with post partum depression, some of which was

probably at least partially caused by this. I'm feeling much better

now, even though I have good days and bad days. What has helped me

is doing everything I can to educate myself and also participating in

this board. Everyone here has been great, and I've only been here a

little over a week.

Good luck!

[Guest guest]

,

Welcome to the list! It must be such a relief to find

a place where people understand what you are going

through.

I have come this list from a very different place. We

adopted my son in April 2002 from China, knowing he

had bilateral atresia/microtia, so we went did not go

through the heartbreak of having expectations of the

perfect baby dashed.

But reading your post and others' responses has helped

me see what Connor's parents may have experienced when

faced with their child who was obviously " not right. "

They kept Connor for 2.5 months before giving him up.

I can't help but think it must have been a terrible,

heart-wrenching decision. China is a country with no

support for the elderly except for family and it's the

sons who generally take care of the parents. Here,

they had the son everyone wants . . . but how could a

deaf, deformed son take care of them?

Connor spent the next 2.5 years in an orphanage where

he was well taken care of, but lived without hearing

aids so has very little speech at all, Chinese or

English. He has been with us 3.5 months and has come

such a long way! He has been aided about 2.5 months

and has about 15 somewhat intelligible words and lots

of signs (we are learning sign as we go along, so

don't feel you have to be fluent!).

I have been surprised at how frustrated *I* get in

trying to communicate with him when I knew he was deaf

when we adopted him. I mean, duh! On my good days, I

think how frustrating it must be for him!! But he is

doing remarkably well. He's a resilient, funny,

affectionate little kid that has barreled into our

lives and we are thankful to have him.

I am sharing this to let you know that 1) your post

has helped me to have empathy for Connor's birth

parents, which I think will help me talk to him one

day about them. So thank you for sharing. And 2), I

wanted to let you know that I think Zayne was

apparently given to wonderful parents who care VERY,

VERY much about him and are doing everything they can

to help him get the most from life, including facing

their own difficult feelings about his birth and

challenges.

Enough rambling! I did want to let you know that your

post struck a chord with me!

Pamela,

Mom to Connor, just turned 3, bilateral atresia/microtia

__________________________________________________

[Guest guest]

, Thanks so much fo your story. I have a question? What is a

Polyethylene implant/ I have not heard of this. Both of Zayne's ears

are under developed. He has no visual ear canals. We do not know what

he has on the inside, and that bothers me alot. I want to know but

the Dr. says other wise. At this point I don't want Zayne's ears

reconstructed, because that is Zayne. His ears are a part of him. Is

that wrong to think that?

Thanks for the help.

and Zayne

> >

> > Hi ,

> > Welcome to the board! My son Miles was born 3/22/02 with

unilateral

> > microtia atresia. I know exactly what you're going through, since

> > I'm going through it myself.

> > First of all, YOU DID NOT CAUSE THIS. Now I understand this is

hard

> > to accept. I've been told it repeatedly by several doctors and

all

> > the literature says the same thing--it is not caused by anything

the

> > mother did. While I know this is true in my head, I find it hard

to

> > accept in my heart. I think it's natural for mothers to feel

guilty

> > about even small things, let alone big things like this. We seem

to

> > be programmed for guilt! :-) I hope that eventually I can get

over

> > the feelings of guilt. I just have to remind myself everyday what

> > all the experts are telling me.

> > As far as does it get better? I had a very hard time at first and

> > was even diagnosed with post partum depression, some of which was

> > probably at least partially caused by this. I'm feeling much

better

> > now, even though I have good days and bad days. What has helped

me

> > is doing everything I can to educate myself and also

participating in

> > this board. Everyone here has been great, and I've only been

here a

> > little over a week.

> > Good luck!

> >

> >

> >

[Guest guest]

and ,

It's been said by others and I simply must agree, what the both of you

are feeling/have felt is completely normal. Since Evan (bilateral

microtia and atresia) is now 10 1/2 (he makes me say the 1/2! LOL), the

only difference between you and I is that I have dealt with it longer.

Yes, it gets easier in some ways but then it gets more difficult in

others. It's like a trade off... perhaps people stop staring but maybe

it's time for your child to face surgery so there is something new to

deal with. But it's the life you know, the life you wouldn't change for

anything!. When you see that beautiful baby with this so-called

" defect " become a happy, well-adjusted young man even though you feared

he would be an emotional wreck (or was that me?), it's makes you even

more proud than you could have ever imagined.

I actually envy all of you new parents that have recently joined this

group. When Evan was a baby, there was no group for me, just the "

Lynne's Pity Party Group " !! My Mom suddenly passed away, I didn't have

anyone to talk to, didn't really have faith in the doctors I was using

at the time and didn't know which way to turn next. I also fell into

the post partum depression hole with no clear signs of a way out.

Everyday was another deep, dark cloud covered nightmare. I honestly

don't recall when I turned the corner for the better but I realized that

I wasn't doing anyone any good by being the Queen of Negativity. I WAS

able to see a silver lining after all and the best thing, I had a

beautiful baby who looked at me like I was the best Mommy in the whole

world, even if we did have a rocky start!. On a side note, how my poor

husband put up with me during that time is beyond me! HE deserves a

medal!!! LOL

The best thing I did is to buy a computer and find this group. Yes,

Evan had already had his surgery but I still learned SOOO much!. I had

people to talk to, people to listen to and was lucky enough to hear the

name " Dr. J. " who thankfully saved Evan's hearing! I also felt useful

because I seemed to have been the first one here who's child had a

polyethylene implant and few had ever heard of this type of

reconstruction. People began asking questions and I felt like I was

actually contributing something.

All in all, it's been a long road, sometimes bumpy, sometimes smooth but

I bet you'll see, there must be a reason why you were chosen to be the

parent of that very special child or God wouldn't have hand picked you

the way that he did to be the one lucky enough to raise him. When you

stop to think about it, you will realize that you do indeed, have the

most perfect child in the world!

Lynne

mpcsmommy wrote:

>

> Hi ,

> Welcome to the board! My son Miles was born 3/22/02 with unilateral

> microtia atresia. I know exactly what you're going through, since

> I'm going through it myself.

> First of all, YOU DID NOT CAUSE THIS. Now I understand this is hard

> to accept. I've been told it repeatedly by several doctors and all

> the literature says the same thing--it is not caused by anything the

> mother did. While I know this is true in my head, I find it hard to

> accept in my heart. I think it's natural for mothers to feel guilty

> about even small things, let alone big things like this. We seem to

> be programmed for guilt! :-) I hope that eventually I can get over

> the feelings of guilt. I just have to remind myself everyday what

> all the experts are telling me.

> As far as does it get better? I had a very hard time at first and

> was even diagnosed with post partum depression, some of which was

> probably at least partially caused by this. I'm feeling much better

> now, even though I have good days and bad days. What has helped me

> is doing everything I can to educate myself and also participating in

> this board. Everyone here has been great, and I've only been here a

> little over a week.

> Good luck!

>

>

>

[Guest guest]

, Zayne's pinna is significant atretic, with grade 3 atresia

bilaterally. What does that mean? Our Dr. said a CT scan would be

unnecessary radiation. And that it should be left up to Zayne when he

is 18 to decide if he wants his ear canals opened or not depending on

a CT. Dr. said it is a very risky surgery, and could damage nerves or

what Zayne does have. Am I getting the right information from our

Dr.

Thanks

and Zayne

> > > >

> > > > Hi ,

> > > > Welcome to the board! My son Miles was born 3/22/02 with

> > unilateral

> > > > microtia atresia. I know exactly what you're going through,

since

> > > > I'm going through it myself.

> > > > First of all, YOU DID NOT CAUSE THIS. Now I understand this

is

> > hard

> > > > to accept. I've been told it repeatedly by several doctors

and

> > all

> > > > the literature says the same thing--it is not caused by

anything

> > the

> > > > mother did. While I know this is true in my head, I find it

hard

> > to

> > > > accept in my heart. I think it's natural for mothers to feel

> > guilty

> > > > about even small things, let alone big things like this. We

seem

> > to

> > > > be programmed for guilt! :-) I hope that eventually I can

get

> > over

> > > > the feelings of guilt. I just have to remind myself everyday

what

> > > > all the experts are telling me.

> > > > As far as does it get better? I had a very hard time at

first and

> > > > was even diagnosed with post partum depression, some of which

was

> > > > probably at least partially caused by this. I'm feeling much

> > better

> > > > now, even though I have good days and bad days. What has

helped

> > me

> > > > is doing everything I can to educate myself and also

> > participating in

> > > > this board. Everyone here has been great, and I've only been

> > here a

> > > > little over a week.

> > > > Good luck!

> > > >

> > > >

> > > >

[Guest guest]

,

Using a polyethylene implant is another way to reconstruct the outer

ear. Instead of harvesting rib cartilage from the chest, a porous

synthetic material is used. Rather then 4 stages, there are only 2.

Evan's doctor is Dr. Romo III in NYC. You can read much more

about the implant by going to Dr. Romo's website at

www.earreconstruction.com Dr. Reinisch in California also does this

type of surgery.

I have a few questions for you as well. You say that Zayne's ears are

underdeveloped. Microtia is graded into stages; 1, 2 or 3. Do you know

which grade Zayne has? You also say that he has no visible ear canals

and you don't know what is inside. You then go on to say that you WANT

to know but your doctor says otherwise. Does this mean that he doesn't

want Zayne to have a CT scan at all or just not now? Obviously he is

just small baby so it isn't of the utmost importance this minute but I

can understand you being anxious to know. Evan had his first CT scan at

birth and because no one told me it was wrong to do or not to do, we

just went ahead and did it as I was also quite curious. We found out

immediately that Evan had everything inside his ears in the correct

places and they all looked to be functioning so we knew he had a purely

conductive hearing loss and would benefit greatly from a bone conduction

hearing aid, which he had by 3 weeks old. We enrolled him in the Early

Intervention program and he stayed with them until 1st grade and was

then mainstreamed into public school with no speech delays whatsoever.

They really do a wonderful job and I was very thankful I found them.

Whether or not you chose to have Zayne's ears reconstructed is your

decision alone. There has been and always will be very different ideals

on this subject. I, for one, always knew I wanted to have Evan's ears

reconstructed but I could never fault someone who didn't think the same

way as I did. There are a few people on this board that feel the same

way as you, most notably, Steve, our fearless leader and creator of this

group!

Again, you have alot of time to make this kind of decision and I'm sure

you will flip from one side to the other from time to time. When he is

of age to even be able to HAVE surgery, then you can sit down and make

your final decision. I wouldn't dwell on it too much right now as you

have a beautiful baby to take care of and love to bits! But knowledge

is power so making yourself comfortable with the terms and different

ways to have surgery can only be a good thing!. So far, it seems to me,

you are doing everything right!.

Lynne

>

>

, Thanks so much fo your story. I have a question? What is a

> Polyethylene implant/ I have not heard of this. Both of Zayne's ears

> are under developed. He has no visual ear canals. We do not know what

> he has on the inside, and that bothers me alot. I want to know but

> the Dr. says other wise. At this point I don't want Zayne's ears

> reconstructed, because that is Zayne. His ears are a part of him. Is

> that wrong to think that?

>

> Thanks for the help.

> and Zayne

>

>

> > >

> > > Hi ,

> > > Welcome to the board! My son Miles was born 3/22/02 with

> unilateral

> > > microtia atresia. I know exactly what you're going through, since

> > > I'm going through it myself.

> > > First of all, YOU DID NOT CAUSE THIS. Now I understand this is

> hard

> > > to accept. I've been told it repeatedly by several doctors and

> all

> > > the literature says the same thing--it is not caused by anything

> the

> > > mother did. While I know this is true in my head, I find it hard

> to

> > > accept in my heart. I think it's natural for mothers to feel

> guilty

> > > about even small things, let alone big things like this. We seem

> to

> > > be programmed for guilt! :-) I hope that eventually I can get

> over

> > > the feelings of guilt. I just have to remind myself everyday what

> > > all the experts are telling me.

> > > As far as does it get better? I had a very hard time at first and

> > > was even diagnosed with post partum depression, some of which was

> > > probably at least partially caused by this. I'm feeling much

> better

> > > now, even though I have good days and bad days. What has helped

> me

> > > is doing everything I can to educate myself and also

> participating in

> > > this board. Everyone here has been great, and I've only been

> here a

> > > little over a week.

> > > Good luck!

> > >

> > >

> > >