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Hi Teri,

I had my operation (Swedish band) on the same day as you, on March 31! I have

lost 82 lbs and have about another 20 to 30 to go. My weight loss has slowed

down considerably though, lately. I will probably need another year to get to

my goal weight.

Yes, if the band is to tight, it can grow into the stomach. This is called

migration. I couldn't beleive that this is possible, but my surgeon assured me

it can happen. A Swedish band should never be filled more than 9 ml.

Hope this helps

Barbara

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  • 1 year later...
Guest guest

Carmelina,

Did you contact CoSAC 1-800-4-autism or 1-

and get their parent packet. In it there should be a

list of autism programs/schools in NJ. I don't know

what therapies your child needs. What has worked best

with my son is ABA. So I was looking for a school

based on ABA. Kenny will be going to Sawtelle

Learning Center in Montclair, NJ. He will also

receive OT and Speech there. I'm also continuing my

home ABA program after school and on weekends, and

will still see my private OT and speech. IN

county you have Allegro. In Bergen county, there are

alot of schools, the big ABA schools are Alpine

Learning Group, IEA, Epic, a few people on this list

go to . A lot of these schools are

filled up (even the public programs are full) I

suggest to visit as many as you can and get on their

waiting lists. In the meantime start your home ABA

program. If the CST can't find an appropriate

placement, maybe they'll pay for a home program ( it's

most restrictive environment but you have to provide

for your child's needs) DON'T sign the IEP unless you

are sure about everything in it. (Go with your gut

feeling) With the initial IEP they need your signature

to implement it and if you sent your request to

evaluate, 4 mths before age 3, they have to have

something set up for you at age 3 (or they have 90

days from when you contacted them) If you feel you

need help in getting your child appropriate services,

you might want to contact an Advocate or Attorney.

Good Luck!

Ezzie

--- cl7632@... wrote:

> Hi To All,

> I'm new to you group and would like to thank

> eveyone for the

> infomation posted. I have a 3 1/2 yr diagnosed ASD.

> Live in

> County, working on our IEP with the child study

> team. Also fighting

> for additional services in the IEP, like a monitor

> on the bus.

> I've visted several schools in various

> counties, (the program in

> town is not sufficient, its 1/2 day and no OT)I

> would like to know

> what programs (or Schools)are recommended in Bergen

> County.

> Thanks,

> Carmelina

>

__________________________________________________

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  • 2 months later...

Welcome to Aiden and his mommy :-)

I am Dawn, 24 mum to Ibrahim Jerry (3 years, nursed for 18 months),

Elijah Iman (16 months, nursed 6 months) and Ethan Adnan - 10 week old

little boy who came a 1 1/2 months early and has a heart defect and needs

open heart. Elijah is the only one who ever got formula. I could cop

out and say he got it because I got pregnant when he was 5 months old and

with my history (I have lost 2 babies in the 5th month and 2 m/c) I

couldn't have nursed (I would have stopped, its hard loosing so many!),

but we began to stop before I knew I was pregnant. Neither of us enjoyed

it. At the time I didn't know why, but there was so much turmoil in my

life (the beginning of the end for hubby and I) and it had to have leaked

to Elijah.

But Ethan may well be my last child, and with a serious birth defect, he

*WILL* get the best. Breastmilk all the way, baby! And even though he

is suffering from failure to thrive, we are working with the ped and the

cardiologist to ensure that he gets only bmilk and continues to grow

(albeit, very slowly).

***************************

Dawn - Loving Mum to:

Ethan Adnan (35-weeker, 8-25-00, VSD - heart defect, needs corrective

surgery)

Elijah Iman (7-2-99, developmentally delayed) and Ibrahim Jerry (9-10-97)

________________________________________________________________

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KimB wrote:

Hi Ais,

How do you pronounce you're name, I've never seen it before?

Hi Kim!

Well, it's not actually my name. :o) My name is Bethany -- Aislinn is

the name I used to use in the SCA, which is a medieval recreation group.

I use it mostly out of habit, and because it's quicker to type!

To answer your question, though, it's an old Irish name. It's pronounced

either AYS-lynn (modern Irish) or ISH-leen (old Irish.) It was originally

a man's name, but it's been enjoying new popularity for girls in the 20th

century. LOL That's why I don't use it in the SCA anymore -- it wasn't

an accurate usage, as I'm not a man :o) But it's still my e-mail address

and it's still a habit.

Ais

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KimB wrote:

Hi Ais,

How do you pronounce you're name, I've never seen it before?

Hi Kim!

Well, it's not actually my name. :o) My name is Bethany -- Aislinn is

the name I used to use in the SCA, which is a medieval recreation group.

I use it mostly out of habit, and because it's quicker to type!

To answer your question, though, it's an old Irish name. It's pronounced

either AYS-lynn (modern Irish) or ISH-leen (old Irish.) It was originally

a man's name, but it's been enjoying new popularity for girls in the 20th

century. LOL That's why I don't use it in the SCA anymore -- it wasn't

an accurate usage, as I'm not a man :o) But it's still my e-mail address

and it's still a habit.

Ais

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Kat,

Welcome to the list. I am Wendi (listmom) and mother to two. Kaija is

almost nine and Zaid (my nursling) just turned three. :)

Wendi

http://www.lactivist.com

" When individuals have been born gently, welcomed kindly into the community,

breastfed for many years, they do not become greedy people. They come from a

place of fullness and balance with all our relations. " Jeannine Parvati

Baker

New member

Hello My name is Kathleen (kat) and I am a mother of 4. the youngest

being 3 months who is breastfed. I do work part time and pump for

her. I hope to breastfeed her for 12-18 months. I truly enjoy this

wonderful bond that has come from breastfeeding. and knowing that

after i nourished her inside me for so long. that giving her the best

food is something that only I can do for her! Anyway. I hope to get

to know you and share information and support!

kat

Give the Gift of Life Breastfeed!

http://www.lactivist.com

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  • 4 months later...
Guest guest

Hi Carina I was in hospital over night and i found there was no pain for me

at all just uncomfortable lol for the trip home LOL

New member

> Hi everyone,

>

> I have just joined this list. I am booked in for my Adj. Lap band surgery

on

> July 10th (in Melbourne) and I'd like to hear from others about the

> surgery/recovery. etc. I had Gastric banding (the old 'un adjustable' one)

> about 10 years ago it went fine for a while I lost weight, but then I

> started having problems and after years of putting up with constant

vomiting

> and living off icecream and milk (the only things I could keep down) I

went

> and saw another surgeon (my original surgeon - when I told him I was

having

> trouble, basically said - get used to it and that I must be eating the

wrong

> stuff so its my own fault! - so I never went back to him!) Anyway my new

> surgeon sent me for tests, and it turned out the band had slipped and had

> formed a 'pouch' that all the food collected in and didn't continue to

> travel down, this was why I was unable to eat anything solid, or even

> anything slightly gas forming as the gas sitting in my stomach was as bad

as

> the food sitting there. Anyway I had a reversal done about 2 years ago

now,

> and was determined that I wouldn't put on weight again! Huh! Like that

plan

> just went straight out the window! So last year I went back to my surgeon

> and we decided on the adjustable band.

>

> I'd really like to know how the recovery period etc. and the pain level of

> the surgery etc. is. I recall how bad I felt after my first surgery and I

> am hoping that this time round things will be a bit different.

>

> I am on digest so please anyone feel free to e-mail me directly if you

want

> to.

>

> Regards

> Carina

>

>

>

>

>

>

>

>

>

> ozband website:

> http://www.ozband.com

>

>

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  • 1 year later...
Guest guest

Welcome Donna!

My name is beth and our son Josh - who is also 9 - just completed his

reconstruction with Dr. Brent this past March. Gosh, where to begin? Have

you received his pamphlet on " Two Decades of Auricular Reconstruction " ? If

not, call his office and ask for one. It completely outlines the procedures

and has a lot of pictures.

We were completely up-front with Josh regarding the surgeries, all they

entailed, and the pain associated with any surgery. We even role played and

went through some " dry-runs " regarding anesthesia. Has Alan ever had

surgery before?

If you want the info on airfare assistance that I have, please send me your

e-mail address and I will forward it. Also, I would check with your

insurance company regarding surgical and transportation coverage. If it's

not acceptable, fight for the coverage you deserve!

If you want, please feel free to e-mail me at heyboucher@... with

any specific questions, or post them here.

Alan is about to make a lifelong friend in Dr. Brent who is a wonderful man.

He will take all the time you need to ask questions and feel comfortable.

Are you aware of the hospital apartment? They're a great deal and

definitely nice especially for the first surgery where it will be comforting

to be close to the hospital.

Glad to have you on the list and God bless you! Hey, maybe Josh and Alan

would like to chat sometime?

Love, beth

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  • 2 months later...
Guest guest

Hello Silverio and welcome to the group!

Gian Pio is very blessed to have such a strong advocate for a father! It is

wonderful that you have already met with Dr. Brent and Dr. J for

consultation.

I have a son Josh, with unilateral microtia, who is almost 10 and has

completed his reconstruction with Dr. Brent.

God bless you and your family! Love, beth

>

>Reply-To: AtresiaMicrotia

>To: AtresiaMicrotia

>Subject: New Member

>Date: Mon, 15 Jul 2002 07:13:37 -0000

>

>Hello,

>I'd like to introduce myself,as I just reach this

>group,at this address.

>

>I'm the father of Gian Pio a 3 years old child

>with left microtia/atresia grade III.

>

>We live in Italy,I alredy had opportinities to

>met on the web the supporting group from

>which I get informations and address in order

>to build a clear picture of " microtia " (till that

>moment completly unknown).

>I was also at meeting with Dr.Brent/Jas. last

>april 2000 in N.Y.

>

>I'd like to be in contact with all of you to get (and

>eventual to give) any informations which

>should be important for Gian Pio further steps.

>

>Thanks

>Silverio

>

_________________________________________________________________

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  • 2 weeks later...
Guest guest

I'm hoping to get up to NY in October as well. ...... JACK!!! Should I register anyway and hope I make it or can

I call a week or so before???).

anna lynne

you think i'd EVER tell YOU what to do????

NO WAY!!!!

you are ALWAYS welcome!

uncle jack

(of course...if you register too late you will be INeligible for the door prize raffle of matching Mercedes cars, lifetime free medical care, a house on the french riviera and a lifetime supply of fruit-by-the-foot, but i know you don't care about ANY of THAT stuff....)

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Guest guest

Lori,

I have lived in NJ all my life and it never ceases to amaze me how many

places in this tiny state I have never heard of! Oh well, guess I

don't get out much! (note to self: Speak to husband about this!) LOL

As for your questions...I honestly can't remember ever having a problem

keeping Evan's hearing aid on. The only thing I do remember is when he

was very small, before he started sitting up and crawling, he would roll

all over the floor and it would get knocked off. The older he got, the

more he wanted to wear it as he realized that he needed it to hear.

Initially, after his surgery with Dr. J. last Sept., he did not wear the

aid anymore. He still does not wear it to school as he is always placed

in the front row and swears that he can hear everything said. His

grades have never suffered and his teacher last year said he was a

wonderful student. I'm interested to see if things go the same way when

this school year begins. However, he has begun wearing it when he

watches TV at home. Not so much that he can't hear the TV, just that he

has to put it louder than what the rest of us would normally like and to

be honest, it gives me a headache when it is that loud!!! It saddens me

to see him wear it again because it brings to mind that if he had his

OTHER canal opened, he wouldn't have to wear it at all!.

I'm hoping to get up to NY in October as well. I'm not 100% sure as

Evan is having surgery on the 12th of Sept. so I'm doing a wait and see

thing. (Hey JACK!!! Should I register anyway and hope I make it or can

I call a week or so before???).

Just be diligent with and her aid. Try to distract her when she

grabs for it. If there are times she just won't keep it on, so be it,

it's not the end of the world and eventually she'll realize how much she

depends on it to hear all the interesting stuff going on around her!

Lynne :)

lori0604 wrote:

>

> Hello, Thanks again for the welcome.

>

> I live in Hillsborough, probably about an hour from you. Maybe we

> should start a local support group? I'm so glad for the conference

> in NYC with Dr. Brent and Dr. J, even though nothing is going to be

> done for 5 years (!) at least I'll get to meet you and other members

> of this site. I was so disappointed last year when it was cancelled.

>

> I'm so glad to hear that Evan is doing so well. Since Evan's was

> bilateral, how did you get him to keep his hearing aid on?

> loves to take it off and nibble on it or put it around her foot.

> Loves to rub food in it. I feel like my biggest challenge right now

> is to keep it on her head. Does Evan still wear a hearing aid, or

> was the surgery sucessful and he doesn't need to?

>

> Lori

>

>

> > >

> > > Hello everyone,

> > >

> > > Although my daugher is 13 months old and has bilateral atresia

> > > microtia, I have just found out about this site. I have been

> reading

> > > through the messages (and archives) and I have found it both

> > > comforting and frightening. I have realized how much I still need

> to

> > > learn. wears a bone conducting hearing aid and does

> pretty

> > > well with it as she also gets speech therapy once a week. Her

> speech

> > > is developing almost age appropriately. She now gets physical

> > > therapy once a week as her gross motor skills are delayed (she is

> > > just starting to (almost) crawl, more like dragging on her belly

> and

> > > she has yet to actually bear weight on her legs). Her fine motor

> > > skills are excellent. She is just a wonderful beautiful happy

> little

> > > girl and brings such joy to our lives.

> > >

> > > I was wondering if you have had similar experiences with your

> > > children (or yourselves?) having a delay in gross motor skills

> and no

> > > explanation? The doctors do not think there is anything

> physically

> > > wrong.

> > >

> > > Also, I was wondering if any of you are located in New Jersey?

> I'm

> > > in central New Jersey.

> > >

> > > Jack, I know you check this web site, and although we have only

> > > spoken once, I have thought of you and your family and have prayed

> > > that they are safe over there in Israel. I look forward to

> meeting

> > > you in October.

> > >

> > > Best regards,

> > > Lori

> > > mother of 1 (bilateral atresia mictrotia) and 4

> ( " perfect "

> > > ears)

> > >

> > >

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  • 3 months later...

> Hi , My daughter Abby has bilateral microtia, and physical

> impairments due to a brain malformation. It is called HPE or Lobar

> Holoprosencephaly. It is mild, but as far as mild goes, she is

> physically delayed. She will be 2 years old soon, she does not

speak

> to communicate, although she is vocal. We do some basic signing

with

> her, but are looking into communication boards for her. Abby is

> involved in an early on program, it helps infants and toddlers up

to

> age 3. Then places children in the appropriate class setting for

> learning. She is in PT and OT and speech therapies.

> I am glad you found this group! Everyone is great!

>

> Amy Colletti

Hello Amy,

You have no idea how happy and excited I am to have found this

group. Have felt so " alone " for so long ! The internet is a wonderful

tool for bringing people together.

Thanks for sharing Abby's story. It's great you are signing with

her. Early on , before we know the extent of 's hearing ,we

too

began to sign with him. It made it less frustrating for him. Some

parents, for some reason,chose not to sign to their child. It should

be

done for the non-hearing impaired as well.

Looking forward to ongoing communications !!!

Regards,

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  • 4 months later...
Guest guest

Dear Patty and Dave, Welcome to the group and congratulations on the birth of your daughter. My daughter Lena is almost 4 months old and also has right stage 3 atresia/microtia. Although the specialists and tests continue, Lena is doing very well and my husband and I are enjoying her like we never imagined we could.

I'm writing to let you know that although we live in FL, we're scheduled to see Dr. Eavey next month in Boston. Dr. Eavey does do the surgery (someone may have already told you all of this since I'm just now getting around to e-mail that is over a month old...sorry). He's with the MA Ear and Eye Infimary and is a part of the team that grew the ear on the mouse's back. I've spoken to him on the phone and he has not only a familiarity but a passion for atresia/microtia. We haven't decided whether he will definitely be the one who performs Lena's surgery in 6 years, but since we have family in the Boston area and he has kindly agreed to see Lena even though she is so young, we'll be meeting with him in April. I will certainly let the group know how our appointment goes. More than anything else, I'm looking for someone who is familiar atresia/microtia to look at Lena and tell us what is in store. The blank stares I've gotten from so many doctors in this area is not helping me to cope (although I'm doing much better than when she was a few weeks old). I must say that the only comfort and the only answers I have gotten have been from this group.

Again, welcome. I hope we'll be talking more since our daughters are not very far apart in age.

Traci

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Guest guest

> Dear Patty and Dave,

> Welcome to the group and congratulations on the birth of your

daughter. My

> daughter Lena is almost 4 months old and also has right stage 3

> atresia/microtia. Although the specialists and tests continue,

Lena is doing

> very well and my husband and I are enjoying her like we never

imagined we

> could.

> I'm writing to let you know that although we live in FL, we're

scheduled to

> see Dr. Eavey next month in Boston. Dr. Eavey does do the surgery

(someone

> may have already told you all of this since I'm just now getting

around to

> e-mail that is over a month old...sorry). He's with the MA Ear and

Eye

> Infimary and is a part of the team that grew the ear on the mouse's

back.

> I've spoken to him on the phone and he has not only a familiarity

but a

> passion for atresia/microtia. We haven't decided whether he will

definitely

> be the one who performs Lena's surgery in 6 years, but since we

have family

> in the Boston area and he has kindly agreed to see Lena even though

she is so

> young, we'll be meeting with him in April. I will certainly let

the group

> know how our appointment goes. More than anything else, I'm

looking for

> someone who is familiar atresia/microtia to look at Lena and tell

us what is

> in store. The blank stares I've gotten from so many doctors in

this area is

> not helping me to cope (although I'm doing much better than when

she was a

> few weeks old). I must say that the only comfort and the only

answers I have

> gotten have been from this group.

>

> Again, welcome. I hope we'll be talking more since our daughters

are not

> very far apart in age.

>

> Traci

Traci

Patty and I will be looking forward to talking with you.

Sincerely Dave

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Guest guest

> Hi CHERYL

YES, YOU A RIGHT A WAS SO LUCKY TO MEET YOU AND YOUR EAR DID LOOK LIKE A

REAL ONE IT WAS VERY NICE TO MEET YOU AND YOUR FATHER AND ALSO GOOD TO

KNOW HOW IT HAD GONE WITH YOU TO HAVE ONLY HEARING ON ONE EAR AND GOING TO

SCHOOL. I AGREE THAT DR.MULLIKEN DID A VERY GOOD JOP ON YOUR EAR BUT HE

WAS I WAS NOT HAPPY ABOUT HIS MANNER AND WHAT HE DID MAKE IT LIKE EASY TO

REMOVE THE SKIN TAGS BECAUSE WITH THE SSKIN TAGS IS ALSO A EXTRA EAR CANAL

WHICH WAS SEEN WITH THE CT-SCAN BUT I WAS LAUGH APUGT IT WHEN A TOLD IT A

I AM CONSERN ABOUT THE NERVE THAT LYES IN HER FACE.

THE DID REMOVER HER TONSIL AND WE WILL BE BACK TO BOSTON NEXT SUMMER. YOU

TAKE CARE YOU ARE A VERY BEAUTIFULL GIRL AND AGAIN I AM PLEASED TO HAVE

MEET YOU.

SIGGA FROM ICELAND

> I read the email dated Mar. 17, asking about doctors in Boston.

> Maybe I could recommend one. My surgeon is Dr. Mulliken at

> Children's Hospital-Boston. He's really really good; he is a

> craniofacial surgeon, and he does good ears, but works more on jaws and

> cleft palates. Hope this helps in some way, shape or form.

> By the way, I think I met you, Sigga (did I spell your name

> right?) in Dr. Mulliken's office in February. I distinctly

> remember looking at a little girl from Iceland who had something

> wrong with her jaw, a slightly malformed ear, and I did notice a

> skin tag. Was it your daughter? Anyway, I think I showed you my ear.

> Just thought I'd mention it b/c it seems like a coincidence.

>

> Cheryl

>

>

>

>

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Guest guest

Welcome,

You are in the right place -- it has help us tremendously. It is hard not to worry about your child and why this happened. I sure did alot of worrying for the first year of our son's life. Now at age 5, he is a happy, smart and normal boy. We are looking at surgery for him in about 3 years. You will find a wealth of information here. Try not to worry just enjoy him.

Carol

mom of Austin, unilateral Microtia/Atresia

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  • 7 months later...

I wanted to say hello to everyone! I am from the suburbs of Akron,

OH about 1 hour south of Cleveland Ohio. I am hoping to pass any

information I receive along to everyone and hope to learn alot more.

My son is 3 1/2 yrs old diagnosed at 18 months with Autism Spectrum

Disorder, PICA, Sensory Integration Disorder, and a major speech

delay. He spoke 5 words at 18 months but with alot of speech and ot

therapy he is up to 600 words and going. He is now medicated for

high anxiety which seems to help with his speech. We are so proud of

him and everyone who worked and works with him. He is in public

preschool in a developmental class with 2 teachers and 2 teacher

aides with 8 children. We are very fortunate. So this seems like a

miracle everyday considering where we started at 5 words. Thanks for

listening.

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  • 2 years later...
Guest guest

Welcome Dennis! I am TRULY grateful you are here today! :)

How old are you? There are a few folks on this list who have

mentioned they have had heart trouble in the past, but I'll bet there

are plenty more who are 'lurkers'.

I am 43 years old and have been on insulin since I was 17. Even

though I'm 'young-ish', I'm a prime candidate for heart problems.

The Lord has blessed me with a long life, living with diabetes.

I did have a scare a few days before Thanksgiving last fall. I had a

lot of pressure under my breast bone (sternum) and had trouble

swallowing. I called my doc's nurse who said to get to the ER

pronto. As it turns out, it was " just " an esophageal spasm. But,

long-time diabetics often have silent heart attacks and she said a

heart attack needed to be ruled out. I drove myself to the minor

emergency center and within minutes, I was stripped near naked, had

EKG leads all over me, a Nitro under my tongue and 2 IV's. They even

called an ambulance for me! Needless to say, I was scared to death!

After several hours in the hospital, I was released. What an

ordeal! I imagine your life changing event was similar, but with a

trip to the cardiac cath lab too.

The SBD is a way of life, not just a diet to lose weight. Weight

loss is an effect of the good healthy eating and exercising you'll be

doing. The main focus is to get our bodies healthy again.

Take some time to look through the files we have online. There is a

lot of good info there. You're more than welcome to ask any and all

questions and we'll help you as much as possible. We do ask you to

get a copy of the book and read it thoroughly. It's very informative

and a quick read.

Good luck to you!

Donna

Moderator

>

> Hi Everyone,

>

> My name is Dennis and I joined the group today. So I wanted to

drop a note and say hi. Last weekend was a life changer for me, on

Saturday night I had a heart attack. Just before I was leased from

hospital, I was given information on the new stint that was placed in

my heart, suggestions of a follow up appointment with a local

cardiologist; then the doctor said I should get friendly with the

South Beach Diet. I would welcome all comments on how the diet has

worked for you and suggestions from other who are in or have been in

recovery from a heart attack.

>

> Peace and Joy,

> Dennis

>

>

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