Re: Welcome new mom to be!

[Guest guest]

Welcome le. Our daughter Gracie is almost 4. We adopted her as a newborn.

We just recently found out she is not full Trisomy 21, but Mosaic. You will get

a lot of support from this group. You will find your new little one is a

fantastic blessing and a total joy! Gracie is the light of our lives.

Always,

Beth

We have a new mom to be joining us tonight! Here is what she had to say....

My Name is le and I am 25 weeks pregnant. Through cvs and

amniocentesis testing I learned that my baby has Mosaic Down Syndrome.

I'm now emotionally ready to learn more about Mosaic Ds.

Welcome le and congrats! Please tell us a little more about you. Where

are you from? Is this your first child? Please feel free to ask any questions

on here. We have so many people from parents, Therapist, educators, and even

geneticist on to help answer your questions.

[Guest guest]

Congratulations on your upcoming bundle of joy! Welcome to the group.

I am a special education teacher. I joined the group several years ago to learn

more about MDS, so I could better serve one of my students. My student has long

since graduated, but I've stayed a part of the group.

You have an amazing opportunity ahead of you. There will be bumps in the road

(as with any child), but the journey is priceless!

A. Knight

Sent from my iPad

On Jan 23, 2012, at 8:50 PM, " Hellard "

> wrote:

Hi everyone!

We have a new mom to be joining us tonight! Here is what she had to say....

My Name is le and I am 25 weeks pregnant. Through cvs and

amniocentesis testing I learned that my baby has Mosaic Down Syndrome.

I'm now emotionally ready to learn more about Mosaic Ds.

Welcome le and congrats! Please tell us a little more about you. Where are

you from? Is this your first child? Please feel free to ask any questions on

here. We have so many people from parents, Therapist, educators, and even

geneticist on to help answer your questions.

Thanks,

Hellard

President

International Mosaic Down syndrome Association (IMDSA)

P.0. Box 354~ Trenton ~ OH ~ 45067

1-888-MDS-LINK ~ 1- ~ (FAX) 1-

http://imdsa.org

[Guest guest]

Welcome le,

I am the mother of who is 12 and will be turning 13 in 2 weeks! She

is the light of my life and such a positive person - when you ask her how

she is doing she always says " great " or " awesome " , I would not trade her

for anything in the world. I have made mistakes in raising her, I am not

perfect but I do the best that I can in all situations. Know that your

child will bring you the most joy you have ever felt and the most pain when

you do make mistakes, which is inevitable, we are not perfect. We do the

best we can do and make decisions based on the knowledge we have at the

time.

Just love your baby with everything you have and treat him/her just like

every other child.

Darlene - Mom to (15) and (12 - soon to be 13)

> **

>

>

> Hi everyone!

>

> We have a new mom to be joining us tonight! Here is what she had to say....

>

> My Name is le and I am 25 weeks pregnant. Through cvs and

> amniocentesis testing I learned that my baby has Mosaic Down Syndrome.

> I'm now emotionally ready to learn more about Mosaic Ds.

>

> Welcome le and congrats! Please tell us a little more about you.

> Where are you from? Is this your first child? Please feel free to ask any

> questions on here. We have so many people from parents, Therapist,

> educators, and even geneticist on to help answer your questions.

>

> Thanks,

> Hellard

> President

> International Mosaic Down syndrome Association (IMDSA)

> P.0. Box 354~ Trenton ~ OH ~ 45067

> 1-888-MDS-LINK ~ 1- ~ (FAX) 1-

> http://imdsa.org

>

>

[Guest guest]

Congratulations on your new little one,le, and welcome!  Our oldest son

Elias has MDS and is four and a half, and he is the joy of our lives.  He's a

wonderful big brother and tells us that his little brother is his best friend. 

We, too, took a little bit of time before we were prepared to look into MDS and

look for support, but once we did, we only were more encouraged and found this

group to be a wonderful place to share our son's accomplishments and

struggles.  Having your first child is always an adventure and you are going to

love it! 

Manzo

Mother of Elias, 4 (MDS) and Asher, 2

________________________________

To: imdsa <mosaicds >

Sent: Monday, January 23, 2012 8:50 PM

Subject: Welcome new mom to be!

 

Hi everyone!

We have a new mom to be joining us tonight! Here is what she had to say....

My Name is le and I am 25 weeks pregnant. Through cvs and

amniocentesis testing I learned that my baby has Mosaic Down Syndrome.

I'm now emotionally ready to learn more about Mosaic Ds.  

Welcome le and congrats! Please tell us a little more about you. Where are

you from? Is this your first child?  Please feel free to ask any questions on

here. We have so many people from parents, Therapist, educators, and

even geneticist on to help answer your questions.   

  

Thanks,

Hellard

President

International Mosaic Down syndrome Association (IMDSA)

P.0. Box 354~ Trenton ~ OH ~ 45067

1-888-MDS-LINK ~ 1- ~ (FAX) 1- 

http://imdsa.org

[Guest guest]

Hello,Thank you so much for contacting me!This is baby number 3 for my husband

and I. We have two daughters ages 13 and 18, so we are officially starting over!

We live in Moseley VA which is about 20miles from Richmond. My husband,

recently retired from the Army after 22yrs of service and I'm a Labor and

Delivery RN. Around 12 weeks I had the Nuchal Translucency Screening done and

the nuchal fold was of normal measurement but the blood work came back abnormal.

I had a 1 in 20 chance for having a child with DS so we decided on further

testing. We opted for CVS testing and we received normal FISH results 3 days

later. I was so happy and relieved! However, a week later the genetic counselor

called me at work with the news that changed my life. She said the culture had

shown mosaicism and recommended I have an Amnio done, which we did at approx 17

weeks. The results showed that out of 20 cultured cells 13 were normal and 7 had

trisomy 21. It has been a

roller coaster ride of emotions and through time and family support I have

accepted my baby girl and can't wait until her arrival. So far through

ultrasounds she looks very healthy and has no apparent heart defects. My husband

and I are looking forward to meeting other families and learning all we can! 

le

Subject: Re: Welcome new mom to be!

To: " MosaicDS " <MosaicDS >

Date: Tuesday, January 24, 2012, 3:20 PM

 

Congratulations on your new little one,le, and welcome!  Our oldest

son Elias has MDS and is four and a half, and he is the joy of our lives.  He's

a wonderful big brother and tells us that his little brother is his best

friend.  We, too, took a little bit of time before we were prepared to look

into MDS and look for support, but once we did, we only were more encouraged and

found this group to be a wonderful place to share our son's accomplishments and

struggles.  Having your first child is always an adventure and you are going to

love it! 

Manzo

Mother of Elias, 4 (MDS) and Asher, 2

________________________________

To: imdsa <mosaicds >

Sent: Monday, January 23, 2012 8:50 PM

Subject: Welcome new mom to be!

 

Hi everyone!

We have a new mom to be joining us tonight! Here is what she had to say....

My Name is le and I am 25 weeks pregnant. Through cvs and

amniocentesis testing I learned that my baby has Mosaic Down Syndrome.

I'm now emotionally ready to learn more about Mosaic Ds.  

Welcome le and congrats! Please tell us a little more about you. Where are

you from? Is this your first child?  Please feel free to ask any questions on

here. We have so many people from parents, Therapist, educators, and

even geneticist on to help answer your questions.   

  

Thanks,

Hellard

President

International Mosaic Down syndrome Association (IMDSA)

P.0. Box 354~ Trenton ~ OH ~ 45067

1-888-MDS-LINK ~ 1- ~ (FAX) 1- 

http://imdsa.org

[Guest guest]

Hi le,

I'm so glad you found this group! It sounds like you are doing really well, but

you will find so much support here as you experience all the emotions and

questions that come up with our little miracles.

I'm , my husband is , and our first daughter Kira is 14 months old. DS

was suspected at birth due to her eye shape, and we got the mosaic results when

she was a week old. We definitely went through a grieving process, but this

group really helped us through that time. If I had known what my beautiful girl

would be like today, I would not have wasted so many tears.

Kira is proof that there are no limits for our children, and that you never know

what life holds in store for them. We are still very early on this journey, just

entering toddlerhood (and in a big way I might add!), but Kira blows everyone

away. She is running and climbing all over, she now says over 50 words and is

starting to combine two words, knows her shapes and is starting to get some

colors. Someone bought us " Your Baby Can Read " as a joke, but I guess the joke

is on us because she can now read over 40 words!

We have no idea what challenges we may face in the future, but we love to read

about the older children in the families in the group and hear about all their

accomplishments. We are all fiercely proud of our children here! The IMDSA holds

biannual conferences where we can meet and learn from experts (we went to our

first last year, the next is in Texas next year). We had an amazing time.

As I said, we are still fairly new to this, but if I could give anyone advise it

would be to get all the help and services set up (early intervention etc.), and

then to try as hard as possible to just put the MDS aside and enjoy your little

girl for the wonderful baby she is. My husband I decided from day one that we

would set our expectations for Kira even higher than we would have if she were

" typical " in terms of chromosomes, and we never let the diagnosis be used as an

excuse. Having said that, I know I focussed (and still do) far too much on

milestones, and I wish I had let that go and really taken in every moment of her

being a baby. She grew up way too fast and has a personality larger than life

now!

Kira will be a big sister to another girl in about 8 weeks, so we can't wait to

see how our family grows together. If you haven't already, you may want to have

add you to the MDS facebook group. That tends to be a bit more active

than this yahoo group now, as people can post photos and videos and share news

and questions more easily.

Sorry that was so long! Good luck in the rest of your pregnancy!

, , Kira - 14 months (MDS)

>

>

> Subject: Re: Welcome new mom to be!

> To: " MosaicDS " <MosaicDS >

> Date: Tuesday, January 24, 2012, 3:20 PM

>

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> Congratulations on your new little one,le, and welcome!  Our

oldest son Elias has MDS and is four and a half, and he is the joy of our

lives.  He's a wonderful big brother and tells us that his little brother is

his best friend.  We, too, took a little bit of time before we were prepared to

look into MDS and look for support, but once we did, we only were more

encouraged and found this group to be a wonderful place to share our son's

accomplishments and struggles.  Having your first child is always an adventure

and you are going to love it! 

>

>

>

> Manzo

>

>

>

> Mother of Elias, 4 (MDS) and Asher, 2

>

>

>

> ________________________________

>

>

>

> To: imdsa <mosaicds >

>

> Sent: Monday, January 23, 2012 8:50 PM

>

> Subject: Welcome new mom to be!

>

>

>

>

>

>  

>

> Hi everyone!

>

>

>

> We have a new mom to be joining us tonight! Here is what she had to say....

>

>

>

> My Name is le and I am 25 weeks pregnant. Through cvs and

>

> amniocentesis testing I learned that my baby has Mosaic Down Syndrome.

>

> I'm now emotionally ready to learn more about Mosaic Ds.  

>

>

>

> Welcome le and congrats! Please tell us a little more about you. Where

are you from? Is this your first child?  Please feel free to ask any questions

on here. We have so many people from parents, Therapist, educators, and

even geneticist on to help answer your questions.   

>

>   

>

> Thanks,

>

> Hellard

>

> President

>

> International Mosaic Down syndrome Association (IMDSA)

>

> P.0. Box 354~ Trenton ~ OH ~ 45067

>

> 1-888-MDS-LINK ~ 1- ~ (FAX) 1- 

>

> http://imdsa.org

>

>

>

>

[Guest guest]

Your third baby!  Congratulations... sorry I thought it was your first. The

genetic counselor was the other person we kept in contact with, especially early

on after we had the genetic testing done when Elias was 18 months.  Having a

good support system makes all of the testing and wondering where to go next a

lot easier.  We have come to this group with our questions and especially when

we first realized we needed to get Elias' heart checked out, and received an

abundance of help!  We live in Pittsburgh and have a great Down Syndrome Center

nearby, they have been great about keeping us posted and answering our

questions. 

Congratulations again!

Manzo

Mom to Elias, 4 (MDS) and Asher, 2

________________________________

To: MosaicDS

Sent: Tuesday, January 24, 2012 5:28 PM

Subject: Re: Welcome new mom to be!

 

Hello,Thank you so much for contacting me!This is baby number 3 for my husband

and I. We have two daughters ages 13 and 18, so we are officially starting over!

We live in Moseley VA which is about 20miles from Richmond. My husband,

recently retired from the Army after 22yrs of service and I'm a Labor and

Delivery RN. Around 12 weeks I had the Nuchal Translucency Screening done and

the nuchal fold was of normal measurement but the blood work came back abnormal.

I had a 1 in 20 chance for having a child with DS so we decided on further

testing. We opted for CVS testing and we received normal FISH results 3 days

later. I was so happy and relieved! However, a week later the genetic counselor

called me at work with the news that changed my life. She said the culture had

shown mosaicism and recommended I have an Amnio done, which we did at approx 17

weeks. The results showed that out of 20 cultured cells 13 were normal and 7 had

trisomy 21. It has been a

roller coaster ride of emotions and through time and family support I have

accepted my baby girl and can't wait until her arrival. So far through

ultrasounds she looks very healthy and has no apparent heart defects. My husband

and I are looking forward to meeting other families and learning all we can! 

le

Subject: Re: Welcome new mom to be!

To: " MosaicDS " <MosaicDS >

Date: Tuesday, January 24, 2012, 3:20 PM

 

Congratulations on your new little one,le, and welcome!  Our oldest son

Elias has MDS and is four and a half, and he is the joy of our lives.  He's a

wonderful big brother and tells us that his little brother is his best friend. 

We, too, took a little bit of time before we were prepared to look into MDS and

look for support, but once we did, we only were more encouraged and found this

group to be a wonderful place to share our son's accomplishments and

struggles.  Having your first child is always an adventure and you are going to

love it! 

Manzo

Mother of Elias, 4 (MDS) and Asher, 2

________________________________

To: imdsa <mosaicds >

Sent: Monday, January 23, 2012 8:50 PM

Subject: Welcome new mom to be!

 

Hi everyone!

We have a new mom to be joining us tonight! Here is what she had to say....

My Name is le and I am 25 weeks pregnant. Through cvs and

amniocentesis testing I learned that my baby has Mosaic Down Syndrome.

I'm now emotionally ready to learn more about Mosaic Ds.  

Welcome le and congrats! Please tell us a little more about you. Where are

you from? Is this your first child?  Please feel free to ask any questions on

here. We have so many people from parents, Therapist, educators, and

even geneticist on to help answer your questions.   

  

Thanks,

Hellard

President

International Mosaic Down syndrome Association (IMDSA)

P.0. Box 354~ Trenton ~ OH ~ 45067

1-888-MDS-LINK ~ 1- ~ (FAX) 1- 

http://imdsa.org