Introduction

[Guest guest]

Hi beth!

I have to admit that Jaina is a bit boring for a baby! All she

does is eat, sleep and wake up for about three hours a day!

However, she wasn't due to be born until November 7ths, so I know she's

just busy growing!

I'm excited to get Emmalee as she's older!

Two kids with DS is nothing compared to the family with 13!!!

I'm enjoying this group already!

CJ

Welcome to the group, CJ! My name is , and I am mom to Luke

(DS) and Jake. They are 3 1/2 and are two busy little boys! I think

you will find this group very helpful. I wish you the best as you

bring Emmalee home next week, and look forward to hearing more about

your family. I really admire those of you who welcome special

children into your families by choice.

>

> My name is CJ and I am a (soon to be) mom to three.

>

> My son n is nine.

>

> My daughter Jaina is 5 weeks tomorrow (she was born with Down

Syndrome).

>

> My daughter Emmalee is 17 months and we are adopting her through

the state

> foster care system. She also has Down Syndrome. She comes home on

Monday.

>

> My family lives in Florida.

>

> I look forward to participating in this group!

>

> CJ

> www.fieldfamilynews.com <

http://www.fieldfamilynews.com>

>

More pictures of our kids:

http://www.pbase.com/urriegrl/multiplesds

[Guest guest]

Welcome CJ,

What a great family story you have. I enjoyed your website too. You

will find alot of great families on this list, ready to help. We live in Florida

in DeLand, where are you? We have a son who is 9 -Jake and triplets

who are 7 Zachary DS, , & .

Irene

Introduction

My name is CJ and I am a (soon to be) mom to three.My son n is nine.My daughter Jaina is 5 weeks tomorrow (she was born with Down Syndrome).My daughter Emmalee is 17 months and we are adopting her through the state foster care system. She also has Down Syndrome. She comes home on Monday.My family lives in Florida.I look forward to participating in this group!CJwww.fieldfamilynews.com

[Guest guest]

Welcome CJ; I hope all is going well with your new "additions"......

Sherrill

mom to Jillian 8, and (D/s) 3 1/2

[Guest guest]

Hi CJ,

I enjoyed your website, too! How exciting for you to be adding to your family! Nice to meet you online. This is such a great group of people that are really there for each other.

Regards,

Granata

Wife to Joe

Mom to Haley & Nikki, 38 mos. identical twin girls, both w/DS, and , 19 mos son

Leesburg, VA

-----Original Message-----From: Multiples-DS [mailto:Multiples-DS ]On Behalf Of igercakSent: Saturday, November 05, 2005 9:27 AMTo: Multiples-DS Subject: Re: Introduction

Welcome CJ,

What a great family story you have. I enjoyed your website too. You

will find alot of great families on this list, ready to help. We live in Florida

in DeLand, where are you? We have a son who is 9 -Jake and triplets

who are 7 Zachary DS, , & .

Irene

Introduction

My name is CJ and I am a (soon to be) mom to three.My son n is nine.My daughter Jaina is 5 weeks tomorrow (she was born with Down Syndrome).My daughter Emmalee is 17 months and we are adopting her through the state foster care system. She also has Down Syndrome. She comes home on Monday.My family lives in Florida.I look forward to participating in this group!CJwww.fieldfamilynews.com

[Guest guest]

Hello Terri,

You are about to get inundated with good

news and congratulations! Many on this list have had the “dreaded”

prenatal news. On the up side, you and your husband have the opportunity

to select a pediatrician, cardiologist, and hospital (etc.) that will give your

babies the best care. I received my diagnosis at 18 weeks, had an

amniocentesis, and was encouraged to terminate. I changed my OB in my fifth month because I wanted someone who was

going to be positive and help me. The decision however is a very personal

one that only you and your husband can make.

My sons have been the greatest joy of my

life. All of the challenges with pregnancy, health issues, and surgeries

seem of small consideration by how wonderfully my life has been forever changed.

My twins (with Opitz syndrome) are now 13 and my son (with DS) is almost

5! My twins were born early and the smallest boy (at 4 pounds) had to be

transfused – his failure to thrive was twin-to-twin transfusion and a poor

umbilical attachment (now he has the most perfect belly button). Although

he struggled in-utero you would never know it today as he puts on his (man

size) 10 shoes and answers the phone in his deep voice.

All of us on this list-serve are happy to

answer any questions and wish you the very best.

Suze (mom to Nicolas and Kristopher 13/Identical/Opitz

and Gavin 4/DS)

From: Multiples-DS [mailto:Multiples-DS ] On Behalf Of Terri Lichtenfels

Sent: Tuesday, March 28, 2006 5:34

PM

To: Multiples-DS

Subject:

introduction

Hi everyone!

My name is Terri and I am 27 weeks pregnant with fraternal

twins, a boy and a girl ( and Hope). Recently, my

husband and I got the devastating news that has a pretty severe heart

defect. After several sonograms, echocardiograms, and an amniocentesis,

we were told that she has DS and an AVSD with DORV & her left ventricle is

moderately smaller than her right ventricle. Needless to say, this has

been a lot to digest over the past couple of weeks.

I was curious to see if anyone else out there has been in a

similar situation. All I am getting from the doctors seems to be

negative—they have asked several times about terminating her (even though

I am too far along to do it here in FL, they suggested going out of

state!!).

At this point, I dread going to the doctor because every

time I go it seems like I get more bad news. Yesterday I was told that

is not thriving and that Will is too large for his gestational

age. The doctor said that this could put both of them in jeopardy, she

suggested that we may have to terminate to save Will…So, I am off

the perinatologist once again on Friday. I just don’t know how much

more bad news I can take.

If anyone out there has had a similar experience, I would

love to hear from you.

--

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[Guest guest]

Hi Terri,

Congratulations on your twins! My boys turned six in February ( and Jon Jr.). Davey has DS. We found out about the DS when I was about 6 months pregnant. Davy had fluid in his pleural cavity that had to be removed several times in utero. My perinatalist also told me that I could terminate the "sick" baby. I looked long and hard at the doctor. He asked me what didn't I understand? I told him, he didn't understand. We wanted both babies and would do what was necessary to make sure both babies were born healthy. It was touch and go for a while. Although Davey didn't have heart issues, it was still very scary. I cried and cried and was so worried. My husband was incredible with his support! The boys were born at 37 weeks, after the docs were worried I was getting too big. They were born totally healthy.

I know there are parents on this list who can address your concerns about 's heart issues. You and your family have to make your own decision.

Keep us posted. This is a fantastic group of parents. You will learn lots.

mom to Amy 18, Kelsey 16, Davey 6, and Will 6

-----Original Message-----From: Multiples-DS [mailto:Multiples-DS ] On Behalf Of Terri LichtenfelsSent: Tuesday, March 28, 2006 5:34 PMTo: Multiples-DS Subject: introduction

Hi everyone!

My name is Terri and I am 27 weeks pregnant with fraternal twins, a boy and a girl ( and Hope). Recently, my husband and I got the devastating news that has a pretty severe heart defect. After several sonograms, echocardiograms, and an amniocentesis, we were told that she has DS and an AVSD with DORV & her left ventricle is moderately smaller than her right ventricle. Needless to say, this has been a lot to digest over the past couple of weeks.

I was curious to see if anyone else out there has been in a similar situation. All I am getting from the doctors seems to be negative—they have asked several times about terminating her (even though I am too far along to do it here in FL, they suggested going out of state!!).

At this point, I dread going to the doctor because every time I go it seems like I get more bad news. Yesterday I was told that is not thriving and that Will is too large for his gestational age. The doctor said that this could put both of them in jeopardy, she suggested that we may have to terminate to save Will…So, I am off the perinatologist once again on Friday. I just don’t know how much more bad news I can take.

If anyone out there has had a similar experience, I would love to hear from you.

[Guest guest]

Hi Terri!

Congratulations!

My name is Gail, from New Jersey, I have 4 children..., my last two are b/g twins, and Tara who are 7 years old. Tara was born with Down syndrome. I delivered my twins at 39 weeks, I refused an amnio, and had many ultrasounds. We had our shocking news about Tara at birth, since no anomolies presented on any ultrasounds.

Although Tara did not present at birth with any heart deformaties, she has other issues.

I just wanted to share with you......I vividly remember the begining, and how I was feeling after I brought my twins home......we didn't get alot of support from my husbands side of the family......lots of hurt feelings to this day..............

But this group was a huge support for me, just to read about other Mom's and their multiples, "just like mine!" was a comforting, "everything will be ok" feeling!

You're at the right list serve,

Good Luck!

Gail, Mom to,

Bobby 12, Jillian 9, & Tara (Ds) 7

introduction

Hi everyone!

My name is Terri and I am 27 weeks pregnant with fraternal twins, a boy and a girl ( and Hope). Recently, my husband and I got the devastating news that has a pretty severe heart defect. After several sonograms, echocardiograms, and an amniocentesis, we were told that she has DS and an AVSD with DORV & her left ventricle is moderately smaller than her right ventricle. Needless to say, this has been a lot to digest over the past couple of weeks.

I was curious to see if anyone else out there has been in a similar situation. All I am getting from the doctors seems to be negative—they have asked several times about terminating her (even though I am too far along to do it here in FL, they suggested going out of state!!).

At this point, I dread going to the doctor because every time I go it seems like I get more bad news. Yesterday I was told that is not thriving and that Will is too large for his gestational age. The doctor said that this could put both of them in jeopardy, she suggested that we may have to terminate to save Will…So, I am off the perinatologist once again on Friday. I just don’t know how much more bad news I can take.

If anyone out there has had a similar experience, I would love to hear from you.

[Guest guest]

Welcome Terri,

My name is and we have 4 kids. Maggie is my twin with Ds. We didn't know Mags had Down syndrome until she was 2 months old.

I guess take each day one at a time. This is a great place to be. Gaurenteed someone will have something helpful to relate.

Use us!

introduction

Hi everyone!

My name is Terri and I am 27 weeks pregnant with fraternal twins, a boy and a girl ( and Hope). Recently, my husband and I got the devastating news that has a pretty severe heart defect. After several sonograms, echocardiograms, and an amniocentesis, we were told that she has DS and an AVSD with DORV & her left ventricle is moderately smaller than her right ventricle. Needless to say, this has been a lot to digest over the past couple of weeks.

I was curious to see if anyone else out there has been in a similar situation. All I am getting from the doctors seems to be negative—they have asked several times about terminating her (even though I am too far along to do it here in FL, they suggested going out of state!!).

At this point, I dread going to the doctor because every time I go it seems like I get more bad news. Yesterday I was told that is not thriving and that Will is too large for his gestational age. The doctor said that this could put both of them in jeopardy, she suggested that we may have to terminate to save Will…So, I am off the perinatologist once again on Friday. I just don’t know how much more bad news I can take.

If anyone out there has had a similar experience, I would love to hear from you.

[Guest guest]

HI Terri I want to welcome you to this group of families who all

have fantastic kids. I know you must be going through a lot of ups

and downs right now, but I guess the best advice I can give you is

go with how you feel with everything. I have twelve year old

identical twin boys who both have Down Syndrome. I adopted them when

they were nine months old. Adopting my sons was one of the best

decisions I have every made in my life. Raising Neil and has

not always been easy but it is sure rewarding. Having a child with

Down syndrome changes everyones life in a positive way. You will go

through some extra things like therapies, doctors appointments and

so on but by taking life one step at a time makes things a little

more enjoyable. My sons were born with minor holes in thier hearts

which closed on thier own, they were born two months premature with

breathing problems. They both have asthma when they get colds but

they are thriving now. Neil weighs 89 lbs and weighs 79 lbs

and we are in the wonderful start of puberty. I know I am rambling

but I just wanted to hopefully set your mind at ease a bit with your

news and if you ever need to vent, send me an email on my personal

email at mavridisc@... Oh yes I live in British

Columbia Canada. Take Care Caroline

>

> Hi everyone!

>

>

>

> My name is Terri and I am 27 weeks pregnant with fraternal twins,

a boy and

> a girl ( and Hope). Recently, my husband and

I got the

> devastating news that has a pretty severe heart defect.

After

> several sonograms, echocardiograms, and an amniocentesis, we were

told that

> she has DS and an AVSD with DORV & her left ventricle is

moderately smaller

> than her right ventricle. Needless to say, this has been a lot to

digest

> over the past couple of weeks.

>

>

>

> I was curious to see if anyone else out there has been in a similar

> situation. All I am getting from the doctors seems to be negative-

they have

> asked several times about terminating her (even though I am too

far along to

> do it here in FL, they suggested going out of state!!).

>

>

>

> At this point, I dread going to the doctor because every time I go

it seems

> like I get more bad news. Yesterday I was told that is

not thriving

> and that Will is too large for his gestational age. The doctor

said that

> this could put both of them in jeopardy, she suggested that we may

have to

> terminate to save Will.So, I am off the perinatologist

once again on

> Friday. I just don't know how much more bad news I can take.

>

>

>

> If anyone out there has had a similar experience, I would love to

hear from

> you.

>

[Guest guest]

Hello

My name is . I live in Portland, Oregon and am the father of an 18

year old young woman with Down syndrome. Although she has no label of autism I

have done lots of work with dual diagnosis kids and adults and see many

similarities of need and aspiration across the entire disability spectrum.

I am extremely happy to join and hope to be a good participant. I have certainly

enjoyed what I have read so far.

Free Our People!

[Guest guest]

Thank you Carol, Eleanor is 18 and fully included in our neighborhood high

school. She has a 3.5 gpa and is a happy,

well adjusted if slightly too interested in males young woman. is 15 and

a chess prodigy.

She is the Oregon Polgar Champion and will be playing in the US Open in August.

Not long after Eleanor was born some obvious principles became clear to me.

Mainly that I had never

considered, much, disability as some kind of civil rights issue. It didn't take

long to lose interest in the law, which

I practiced for 20 years, and see what I could do to impact our child's future.

I spent a decade doing lobbying,

community organizing, publishing newsletters and newspapers, doing trainings and

being the Partners In Policy

Making Coordinator for Oregon. I am immediate past President of the Oregon

Advocacy Center and presently

on the Executive Committee of the National Disability Rights Center in

Washington, DC. I am co-chair of

Oregon ADAPT and have attended numerous national " actions. "

As far as work with dual diagnosis I am no practitioner. I am merely a parent.

What I saw when I first entered

" the field " was a dizzying array of relatively small organizations each busily

protecting their little pot of money.

Obviously that is not a good position.

What I have learned is that there is a lot of commonality across the spectrum of

disability. Obviously there are arcane

details connected with each diagnosis and some pretty peptic results if you get

enough of them. But, what I believe

everyone wants is dignity, respect and a sense of belonging. Eleanor is 18 and I

want her to have a happy and fulfilling

adult life. By that I mean housing, a job, real friends and relationships and

independence. I don't think she can get that

by relying on the " system " which is not only, obviously, underfunded but very

capricious and just large enough now

to be a vested interest that serves itself first. I don't want Eleanor in a

world of " independence " where her every decision

is monitored, approved and audited. I don't want " independence. " I want

independence.

Thanks for the welcome.

Re: Introduction

Welcome to the group . I am looking forward to hearing more about

your daughter and the rest of your family. I would also be very interested in

hearing about your work and your thoughts on the dual dx. Thanks for

joining. :-)

Carol

Trishasmom

She isn't Typical, She's Trisha!

[Guest guest]

And now you all know why is one of the most

sought-after advocates in our community. I've had him

by my side during a very difficult situation and he

has this wonderful knack of keeping the meeting human.

A tactic I know employ whenever possible.

has always been one of hte most supportive and

accpeting folks in my life.

You will all enjoy him.

joan

__________________________________________________

[Guest guest]

Hi ,

Welcome, my youngest son has DS but also doesn't have the autism label. He is

the first student in this district fully included since kindergarten with my

continued effort. The group keeps me grounded and is ever teaching me.

Charlyne

Mom to Zeb 13 DS/OCD/ASD?

T wrote:

Hello

My name is . I live in Portland, Oregon and am the father of an 18

year old young woman with Down syndrome. Although she has no label of autism I

have done lots of work with dual diagnosis kids and adults and see many

similarities of need and aspiration across the entire disability spectrum.

I am extremely happy to join and hope to be a good participant. I have certainly

enjoyed what I have read so far.

Free Our People!

[Guest guest]

In a message dated 6/5/2006 5:21:24 P.M. Eastern Standard Time,

mtbclarion@... writes:

I am extremely happy to join and hope to be a good participant. I have

certainly enjoyed what I have read so far.

Hi ,

Welcome to the group. I have heard an awful lot about you from Joan,

one of my very best friends in the whole world (what the heck is 3000

miles?????). It's very nice to *meet* you!!!!!!

Donna, Mom to Miss Maddie, 12, DS and autism

[Guest guest]

Same here Donna ..... the internet does dispose of small

obstacles ... like 3000 miles.

Best

M

Re: Introduction

In a message dated 6/5/2006 5:21:24 P.M. Eastern Standard Time,

mtbclarion@... writes:

I am extremely happy to join and hope to be a good participant. I have

certainly enjoyed what I have read so far.

Hi ,

Welcome to the group. I have heard an awful lot about you from Joan,

one of my very best friends in the whole world (what the heck is 3000

miles?????). It's very nice to *meet* you!!!!!!

Donna, Mom to Miss Maddie, 12, DS and autism

[Guest guest]

Hi ,

My name is Viola. I live in New York/ I have 3 children tammy is 22, tania

is 19 and is 14 he has down syndrome and PDD (ons)., Just wanted to say

welcome to the group!!

Hello

>

> My name is . I live in Portland, Oregon and am the father of

> an 18 year old young woman with Down syndrome. Although she has no label

> of autism I have done lots of work with dual diagnosis kids and adults and

> see many similarities of need and aspiration across the entire disability

> spectrum.

>

> I am extremely happy to join and hope to be a good participant. I have

> certainly enjoyed what I have read so far.

>

> Free Our People!

>

[Guest guest]

Welcome! This is a great place!

mom to Amy 18, Kelsey 16, Davey (DS) 6 and Will 6

-----Original Message-----From: Multiples-DS [mailto:Multiples-DS ]On Behalf Of EulerSent: Wednesday, July 12, 2006 1:14 PMTo: Multiples-DS Subject: Introduction

1. What is your name? E. 2. What are the first names of your children and howold are they? Isaac and are fraternal twins,born on June 23, 2006,3. Which child/children has Down syndrome? Isaac4. Which state or country do you live in? Asheville,NC5. Anything else you want to tell us?__________________________________________________

[Guest guest]

Hi and welcome to our group, you will find alot of helpful families here.

We live in Florida w/ our 8 yr old triplets ZAchary DS, , & , and

their 10 yr old brother Jake. Irene

Introduction

1. What is your name? E. 2. What are the first names of your children and howold are they? Isaac and are fraternal twins,born on June 23, 2006,3. Which child/children has Down syndrome? Isaac4. Which state or country do you live in? Asheville,NC5. Anything else you want to tell us?__________________________________________________

[Guest guest]

Hi ,

Sorry for not responding to your introduction earlier, but we've been crazy here!! Welcome to our group, and to your new baby boys!! CONGRATULATIONS!

I am Casey, and I have 6 1/2 year old boy/girl twins. My kids are and Brynn. I include their middle names, because if had been a boy, she would have been Stephan Isaac. . . they I would have a had a and an Isaac, just as middle names! We live in Spokane, WA and I am a self-employed single mom.

How are you coping with life with twins?? I look forward to hearing more about your days and family, as you have time. Ask anything you want, this is a great group, with a lot of knowledge.

Casey, mom to (DS) and , 6

[Guest guest]

Casey:

So far so good...but my MIL just left today, so now

I'm alone with them during the day. I'm so thankful

Isaac is such a good baby. If I had two fussy babies

like I would surely lose my mind.

Thanks to all for the warm welcome. Both boys are

doing well and gaining weight. I carried them to

37w4days, so they were good size babies (Isaac was

7lbs6oz and was 5lbs5oz). Isaac's ekg and

echo showed no heart issues, and we are so happy about

that. I'm reading everything I can (have amassed a

small library) about Down Syndrome and we've had our

first visit by EI.

I do have one question about feeding Isaac. He's a

very good eater, but at least once or twice a feeding

he chokes. doesn't do that, so I was

wondering if it's related to T21? If so, does anyone

have any suggestions on how I can quit choking my baby

when he feeds? I asked the EI case manager about it

and she was supposed to speak to a speech pathologist

about it, but she's not gotten back to me yet.

__________________________________________________

[Guest guest]

,

My 2 boys with DS always choked easily it is due to the lower muscle tone, so it is harder for your Isaac to keep the flap between his airway and his esophagus closed properly. They would cough a lot and it will take them longer to eat. The most important thing to watch for is that his breathing is not rough or raspy after he has choked because then he might be aspirating and that will require attention of a pediatrician. It is also a good idea after he has eaten to make sure he is sitting elevated for an hour or so so he has gravity on his side for keeping his feeds down....Merry

Merry Low Parent to 14 DS, congenital heart defect, congestive heart failure, Leukemia(in remission), chronic lung disease, asthma, Failure to thrive, and osteoperosis; Kate 12 ADHD, NAS, Long QT Syndrome and tourettes; Jaykob 10 DS, ADHD, moderate hearing loss

-- Re: Introduction

Casey:So far so good...but my MIL just left today, so nowI'm alone with them during the day. I'm so thankfulIsaac is such a good baby. If I had two fussy babieslike I would surely lose my mind.Thanks to all for the warm welcome. Both boys aredoing well and gaining weight. I carried them to37w4days, so they were good size babies (Isaac was7lbs6oz and was 5lbs5oz). Isaac's ekg andecho showed no heart issues, and we are so happy aboutthat. I'm reading everything I can (have amassed asmall library) about Down Syndrome and we've had ourfirst visit by EI. I do have one question about feeding Isaac. He's avery good eater, but at least once or twice a feedinghe chokes. doesn't do that, so I waswondering if it's related to T21? If so, does anyonehave any suggestions on how I can quit choking my babywhen he feeds? I asked the EI case manager about itand she was supposed to speak to a speech pathologistabout it, but she's not gotten back to me yet. __________________________________________________

[Guest guest]

Welcome aboard. I am sorry to hear about the challenges of a divorce. I have been a single Mom to 4 living children their whole lives....the Dad was to immature to even consider marrying.....Thank God I realized that. Anyway, my 2 oldest go with their Dad every other weekend when he decides to pick them up and my 2 younger boys stay with me...Jarod , 6 and (DS) 31/2. I really try to do my best dividing the time up between all 4 for school and activities, but it is a challenge. I just pray I do ok eack day. Good luck. Thanks for joining the group.

Deanna mom to Alyssa, 13 , 10 Jarod, 6 , 3 1/2 (DS) ~i~Jordan (DS) 1/20/03-2/2/03

[Guest guest]

Mark,

Welcome to the group!! Nice to see a dad here, as we seem to have mostly moms. I am a single parent as well, and although I don't have the 2 household issue (I planned and had my kids alone), meeting the very different needs of both kids is a daily goal here and sometimes still a struggle. It does get easier, I promise! also had heart surgery at 1 1/2 (for an ASD) and so we've had some similar issues.

Welcome, and if you ever want to correspond off-list, feel free to email privately.

Casey

mom to (DS) and , almost 7