Re: Welcome to Ivy and son

December 6, 2004

if she mentioned TWO chromosomes, it sounds like a TRANSLOCATION... all you

need right, one more thing to have to look up?? :::wink:::

I would really suggest, that after you do some research, you go back to the

geneticist and tell them you need to have everything explained to you.

Questions like, how many cells were tested? Often 20 or so is all they look

at,

but to rule out mosaicism, 50 is recommended. Also, if there is a

translocation, they should take the time to explain that to you, I just think

its so

negligent not to.

We could all help you put together a list of questions to ask if you

needed!!

Congratulations on you new lil boy, sounds like he's amazing!

~~ANGEL~~

Mom to:

, 11, Mosaic Down Syndrome/Hirschsprung's Disease

Lance 16, Tyler 12, 9,

Jaeda 8 and Shayne 2

December 6, 2004

Welcome to our familiy Ivy! I am so glad that you have found us! Congratulations

on your new baby boy!

Did the doctors do a blood test and/or skin test to confirm the results of Down

syndrome? Did they mention anything about mosaic Down syndrome?

Most families do not have a history of Down syndrome in their family. This is

just something that happens and rarely is hereditary.

To get lots of information on Down syndrome, you can go to:

http://downsyndromeresourcecenter.org/parentpackets.html

There are a variety of pages especially for those with a new baby!

Any questions you may have, please feel free to ask us! Where do you live? We

may have someone in your area? And, please tell us your baby boy's name!

Once again, Welcome to our family!

Kristy Colvin

IMDSA President

Mom to Arron 23, 19, Tim 18 MDS, Stevan 17 and Garrett 8

THE ONLY HANDICAP A PERSON HAS ARE THE PEOPLE AROUND THEM!

wrote:

A couple parents are looking for information.

They wrote:

" Hi

My name is Ivy Payne. I gave birth to a beautiful little boy 2 weeks

ago. The day of his birth the pediatrican told me that he had

features of a child with down syndrome. My husband and I had to wait

until the following week for confirmation that he does in fact have

Downs. I'm not sure what type of DS he has, whether its mosaic or

not, but I am trying to get all the information I can find, including

support groups.

I am 26 years old and my husband is 27. DS doesn't run in either of

our families, so we're really not familiar with it, but are trying

our best to educate ourselves.

Thank you.

Ivy "

Become a member of IMDSA today at http://www.imdsa.com

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

Learn more about MDS http://www.mosaicdownsyndrome.com

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

Contact IMDSA Today at:

IMDSA~PO Box 1052~lin,TX~77856~USA~1-

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

December 6, 2004

Hi Kristy

The doctors did do a blood test on him the day he was born to confirm

the Down Syndrome and we just got the results this past Monday. They

never really explained much to me, so I'm trying to educate myself.

I've already contacted our Board of Health for Early Intervention.

We've had an echocardiogram done and all is okay with that. He has no

problem eating at all. We are actually increasing his formula. His

name is Walter Payne, and I'm soo blessed to have him in my life.

My emotions are so out of wack right now, b/c I don't understand

everything. He is like any other infant I've been around. He is

constantly moving, crying, sleeping and eating. He lifts his head and

turns his head. To me, it seems like he's ahead of the game. I live in

Rockland County New York, a small community.

Thank you for any information you can give me. Did your son move around

a lot when he was an infant? Or could you tell (besides facial

features) that there was something wrong? I know the doctor said

something about chromosome 21 and 14...but she didn't explain it.

Thank you again,

Ivy

Kristy Colvin wrote:

> Welcome to our familiy Ivy! I am so glad that you have found us!

> Congratulations on your new baby boy!

> Did the doctors do a blood test and/or skin test to confirm the

> results of Down syndrome? Did they mention anything about mosaic Down

> syndrome?

> Most families do not have a history of Down syndrome in their family.

> This is just something that happens and rarely is hereditary.

> To get lots of information on Down syndrome, you can go to:

> http://downsyndromeresourcecenter.org/parentpackets.html

> There are a variety of pages especially for those with a new baby!

> Any questions you may have, please feel free to ask us! Where do you

> live? We may have someone in your area? And, please tell us your baby

> boy's name!

> Once again, Welcome to our family!

> Kristy Colvin

> IMDSA President

> Mom to Arron 23, 19, Tim 18 MDS, Stevan 17 and Garrett 8

> THE ONLY HANDICAP A PERSON HAS ARE THE PEOPLE AROUND THEM!

>

> wrote:

>

> A couple parents are looking for information.

>

> They wrote:

> " Hi

> My name is Ivy Payne. I gave birth to a beautiful little boy 2 weeks

> ago. The day of his birth the pediatrican told me that he had

> features of a child with down syndrome. My husband and I had to wait

> until the following week for confirmation that he does in fact have

> Downs. I'm not sure what type of DS he has, whether its mosaic or

> not, but I am trying to get all the information I can find, including

> support groups.

> I am 26 years old and my husband is 27. DS doesn't run in either of

> our families, so we're really not familiar with it, but are trying

> our best to educate ourselves.

>

> Thank you.

> Ivy "

>

> Become a member of IMDSA today at http://www.imdsa.com

> *************************************************

> Learn more about MDS http://www.mosaicdownsyndrome.com

> *************************************************

> Contact IMDSA Today at:

> IMDSA~PO Box 1052~lin,TX~77856~USA~1-

> *************************************************

>

December 6, 2004

Hi Ivy,

I am glad that you are looking for all the information you can get! It is

important for you to understand 's diagnosis, so you can help him become a

great man! Early Intervention is the key to everything! This will help

with his development, and be sure to watch what the therapists do, so you can do

it with him daily.

It sounds like has a great start! With him moving all around and lifting

his head, eating well, and having no problems with his heart! That is fantastic!

My son was moving a lot when he was a baby. In fact, once when he was 3 months

old, I had left him on a pallet on the floor over night because he had fallen

asleep there and I didn't want to wake him. The next morning, when I had gotten

up, I couldn't find him! I went into a horrible panic and happened to look under

our couch, and there he was sleeping away! LOL That very day I bought a new

couch that went all the way to the floor!

Tim was not diagnosed with MDS until he was 2 1/2. Some children with MDS do not

have all the physical characteristics as one with Ds. So, this is why his

diagnosis took so long.

I do understand your emotions being " out of wack " right now. Every person on

this e-group has experienced that feeling when their child was first diagnosed.

Remember, that no matter what, is your beautiful baby! The diagnosis is

not WHO he is, just what he happens to have. Enjoy those cuddly moments with

, and the smiles he will give you and those little things that all babies

do!

When the doctor told you about Chromosome 21 and 14, I assume the doctor was

talking about Translocation Down syndrome. You can find out more about

translocation at: http://www.ds-health.com/trisomy.htm

When a person has Translocation Down syndrome, the results are commonly the

same. It is just that the chromosomes are in a different place.You should

schedule a genetic counciling appointment for when is about 3 months old.

(You may want to schedule now, due to back up with appointments) This will give

you a chance to get to know for the great little guy that he is, and you

will have the opportunity to come up with thousands of questions you want to ask

the geneticist. When ever you think of a question, just write it down on a

paper, this way, when you have your appointment, you can bring your questions

with you.

I would like to share a few inspirations with you, so I have copied them below.

If you have any other questions, please feel free to ask!

Sincerely,

Kristy Colvin

IMDSA President

Welcome to Holland!

by Pearl Kingsley

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

I am often asked to describe the experience of raising a child with a disability

- to try to help people who have not shared that unique experience to understand

it, to imagine how it would feel.

It's like this . . . When you're going to have a baby, it's like planning a

fabulous vacation trip - to Italy. You buy a bunch of guidebooks and make your

wonderful plans. The Coliseum, the Michalangelo , the gondolas in Venice.

You may learn some handy phrases in Italian. It's all very exciting. After

months of eager anticipation, the day finally arrives. You pack your bags and

off you go. Several hours later, the plane lands. The stewardess comes and says,

" Welcome to Holland. " " Holland? " you say. " What do you mean Holland? I signed up

for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to

Italy. " But there's been a change in the flight plan. They've landed in Holland

and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting,

filthy place full of pestilence, famine and disease. It's just a different

place. So you go out and buy new guidebooks. And you must learn a whole new

language. And you will meet a whole new group of people you would never have

met. It's just a different place. It's slower paced than Italy, less flashy than

Italy. But after you've been there for a while and you catch your breath, you

look around, and you begin to notice that Holland has windmills, Holland has

tulips, Holland even has Rembrandts. But everyone you know is busy coming and

going from Italy, and they're all bragging about what a wonderful time they had

there. And for the rest of your life, you will say, " Yes, that's where I was

supposed to go. That's what I had planned. " The pain of that will never go away,

because the loss of that dream is a very significant loss. But if you spend your

life mourning the fact that you didn't get to Italy, you

will never be free to enjoy the very special, very lovely things about Holland.

A BABY IS A BABY FIRST

There is nothing quite like a baby…there's a lurch in the heart when we touch

the beginning of a life in the small person of an infant. For some parents, the

lurch is made more poignant, even painful, by the fact of their baby's diagnosis

of Down syndrome.

Recently, I've had the great pleasure of holding a number of soft, beautiful

babies who have Down syndrome. Their parents want to find out what it all means,

what they can do, what to think about the future. The first professionals to

talk to the parents of babies with Down syndrome tend to discuss the differences

parents may see, difficulties babies will encounter. Armed with information

about what milestones their child may not reach, what problems she may have,

what services they should obtain to avoid potential problems, new parents want

to help their babies as soon as possible. So they come to me (and to numerous

others) to get this help…to find therapy, activities, and solutions to problems

that may or may not exist.

We just don't know, at an early age, in exactly which ways Down syndrome may

affect a child. She may be really good at cognitive activities, but have

significant delays in movement… thereby falling behind her peers in playground

and paper-and-pencil activities. He may be fairly good at gross motor, excelling

in sports. Ocular control may be an area of need, or may be perfect. Language

may be good, or may need lots of work. However, one thing we know for certain…

babies don't deal with these things no matter what their chromosomes look like.

They lie down and expect to be carried, cuddled, talked to, fed and generally

catered to. They learn they are lovable, cute, and the center of the universe.

They begin to know who their family members are, and who is the soft touch in

the house in the middle of the night.

If these adorable creatures have Down syndrome they are at risk for certain

physical and cognitive delays. It behooves parents to keep an eye open for

problems that could arise. It's important that they know something about their

child's diagnosis so that they can be alert and helpful. But my belief is that

the most important things that parents of babies with Down syndrome can do are

exactly those things that all parents do. You know: they cuddle, feed, sing and

love. Not the kind of things you need a Developmental Therapist for… or any

other therapist, for that matter.

I want to be clear. Young children with Down syndrome often show delays that

need to be remedied so that these kids can be happy with themselves and do their

very best. Very young babies with Down syndrome have specific concerns about

early development. And doubtless, parents will find themselves driving this

child about for ear infections, speech therapy, developmental evaluations, etc.

But the main advice I have for parents of new babies with Down syndrome boils

down to this:

You have a beautiful new baby.

There will be some areas that need work, but what you have right now

IS PRECIOUS AND PERFECTLY RIGHT.

Kate Sefton, Master Developmental Therapist

Ivy Payne wrote:Hi Kristy