Re: It's that time again. ROLL CALL!!

[Guest guest]

I am Donna Goodman, the grandmother (Nanny) to Ariana, 2-1/2 and 10 other

grandchildren.  Ari was born with the AV canal defect and had open-heart

surgery at 4 months (and 9 lbs total weight!).  She recovered like a champ and

is now down to one medication that the cardiologist says she may be able to do

without by mid-year (yay!!).  She has a little issue with nyastagmus but

doesn't need glasses.  She is great with sign language, says quite a few things

(like " Oh man! " when she trips or someone won't let her have a cookie).  She is

the most amazing little human being I have ever known, and I can never get

enough of her. 

 

I don't normally contribute to the posts, but I absolutely love reading about

everyone's experiences.  These kids are just unbelievable blessings. 

Subject: It's that time again. ROLL CALL!!

To: " IMDSA GROUP " <MosaicDS >

Date: Tuesday, January 4, 2011, 11:41 AM

 

ROLL CALL

If, you haven't met or talked to me yet. My name is Casey Morton, I am the

self-advocate of the IMDSA. was your newsletter editor, and now your family

connect coordinator, I also have Mosaic Down Syndrome. I have a son along with

me; his name is Ronin and is 3 1/2 all and boy. I have been working with, and

for the IMDSA board and families for a good 2 years now. And have done

multi-media video blogs with life lessons to all on face-book, and now through

the new IMDSA Website; www.imdsa.org I have talked to families through-out the

world, reaching out to as many people as I possibly to let them, and you know;

" You are Not Alone! " I saw you at the last conference, and I'll see you again in

Orlando!

Keep it coming, let your presence be known and tell us who you are and what

you've been doing, and what's going on in a paragraph.

It's show and tell time everyone.

Casey Morton: ----------------------------------

IMDSA Self-Advocate/Spokesman www.imdsa.org

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

[Guest guest]

Thank you susan, and donna! Anyone else... let your presence be known! And let

us know about you, and your family.

 

Casey Morton: ----------------------------------

IMDSA Self-Advocate/Spokesman www.imdsa.org

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

 

________________________________

To: MosaicDS

Sent: Wed, January 5, 2011 3:44:53 PM

Subject: Re: It's that time again. ROLL CALL!!

 

I am Donna Goodman, the grandmother (Nanny) to Ariana, 2-1/2 and 10 other

grandchildren.  Ari was born with the AV canal defect and had open-heart

surgery

at 4 months (and 9 lbs total weight!).  She recovered like a champ and is now

down to one medication that the cardiologist says she may be able to do without

by mid-year (yay!!).  She has a little issue with nyastagmus but doesn't need

glasses.  She is great with sign language, says quite a few things (like " Oh

man! " when she trips or someone won't let her have a cookie).  She is the most

amazing little human being I have ever known, and I can never get enough of

her. 

 

I don't normally contribute to the posts, but I absolutely love reading about

everyone's experiences.  These kids are just unbelievable blessings. 

Subject: It's that time again. ROLL CALL!!

To: " IMDSA GROUP " <MosaicDS >

Date: Tuesday, January 4, 2011, 11:41 AM

 

ROLL CALL

If, you haven't met or talked to me yet. My name is Casey Morton, I am the

self-advocate of the IMDSA. was your newsletter editor, and now your family

connect coordinator, I also have Mosaic Down Syndrome. I have a son along with

me; his name is Ronin and is 3 1/2 all and boy. I have been working with, and

for the IMDSA board and families for a good 2 years now. And have done

multi-media video blogs with life lessons to all on face-book, and now through

the new IMDSA Website; www.imdsa.org I have talked to families through-out the

world, reaching out to as many people as I possibly to let them, and you know;

" You are Not Alone! " I saw you at the last conference, and I'll see you again in

Orlando!

Keep it coming, let your presence be known and tell us who you are and what

you've been doing, and what's going on in a paragraph.

It's show and tell time everyone.

Casey Morton: ----------------------------------

IMDSA Self-Advocate/Spokesman www.imdsa.org

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

[Guest guest]

Hi! My name is Aisha. I'm a married, mother of 3. My husband and I welcomed our

3rd child, a boy, Zedekiah on Jan. 22, '09. Zedekiah was diagnosed with

an AV Canal at 30 weeks gestation. We were told that there was a 50/50 chance

that he would have DS. He did! I was elated and relieved because we had gone

through 2-1/2 mos. waiting and wondering.

He had open heart surgery at 8 weeks and was a total of 9 lbs also. Today, he is

a very active 11 mos old. We aren't walking or crawling yet but he does jump in

his ExerSaucer. He gets PT and DI once a week as well as learning to sign.

I'm so thankful to these groups. They've helped me through what I thought would

be a hard time; however, has led me to better understanding and has welcomed me

into an extended family. Thank you!

Aisha

Sent via BlackBerry from T-Mobile

It's that time again. ROLL CALL!!

To: " IMDSA GROUP " <MosaicDS >

Date: Tuesday, January 4, 2011, 11:41 AM

 

ROLL CALL

If, you haven't met or talked to me yet. My name is Casey Morton, I am the

self-advocate of the IMDSA. was your newsletter editor, and now your family

connect coordinator, I also have Mosaic Down Syndrome. I have a son along with

me; his name is Ronin and is 3 1/2 all and boy. I have been working with, and

for the IMDSA board and families for a good 2 years now. And have done

multi-media video blogs with life lessons to all on face-book, and now through

the new IMDSA Website; www.imdsa.org I have talked to families through-out the

world, reaching out to as many people as I possibly to let them, and you know;

" You are Not Alone! " I saw you at the last conference, and I'll see you again in

Orlando!

Keep it coming, let your presence be known and tell us who you are and what

you've been doing, and what's going on in a paragraph.

It's show and tell time everyone.

Casey Morton: ----------------------------------

IMDSA Self-Advocate/Spokesman www.imdsa.org

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

[Guest guest]

Havent posted in a while. is now almost 5 years old and is the funniest

little girl I've ever met. I am very blessed to have her. I wish I would have

done some research and knew about the conference before we booked a cruise. I

have never physically met anyone else besides my daughter that has MDS. It is a

great opportunity and who knows what can happen at the last minute.....

Donna Goodman wrote:

>I am Donna Goodman, the grandmother (Nanny) to Ariana, 2-1/2 and 10 other

grandchildren.  Ari was born with the AV canal defect and had open-heart

surgery at 4 months (and 9 lbs total weight!).  She recovered like a champ and

is now down to one medication that the cardiologist says she may be able to do

without by mid-year (yay!!).  She has a little issue with nyastagmus but

doesn't need glasses.  She is great with sign language, says quite a few things

(like " Oh man! " when she trips or someone won't let her have a cookie).  She is

the most amazing little human being I have ever known, and I can never get

enough of her. 

> 

>I don't normally contribute to the posts, but I absolutely love reading about

everyone's experiences.  These kids are just unbelievable blessings. 

>

>

>

>

>

>Subject: It's that time again. ROLL CALL!!

>To: " IMDSA GROUP " <MosaicDS >

>Date: Tuesday, January 4, 2011, 11:41 AM

>

>

> 

>

>

>

>ROLL CALL

>

>If, you haven't met or talked to me yet. My name is Casey Morton, I am the

>self-advocate of the IMDSA. was your newsletter editor, and now your family

>connect coordinator, I also have Mosaic Down Syndrome. I have a son along with

>me; his name is Ronin and is 3 1/2 all and boy. I have been working with, and

>for the IMDSA board and families for a good 2 years now. And have done

>multi-media video blogs with life lessons to all on face-book, and now through

>the new IMDSA Website; www.imdsa.org I have talked to families through-out the

>world, reaching out to as many people as I possibly to let them, and you know;

> " You are Not Alone! " I saw you at the last conference, and I'll see you again

in

>Orlando!

>

>Keep it coming, let your presence be known and tell us who you are and what

>you've been doing, and what's going on in a paragraph.

>

>It's show and tell time everyone.

>

>Casey Morton: ----------------------------------

>IMDSA Self-Advocate/Spokesman www.imdsa.org

>----------------------------------------------------

>

>

[Guest guest]

Hi..My name is Ann. My husband, Trent and I have 3 children. is soon to

be 14, Annika is 12 and Jack is 10. Jack is 10 and was diagnosed with MDS at

the age of 3. Jack is just a kid trying to fit in and make friends. He's got a

huge smile and loves hugs. He gives us much joy and happiness. Enjoy reading

all the posts and I try to comment when I have something to contribute. I get

very encouraged when I read about older people with MDS. Casey, May,

etc..knowing that our Jack will have a bright and happy future. Thank you all.

________________________________

To: MosaicDS

Sent: Wed, January 5, 2011 6:41:32 PM

Subject: Re: It's that time again. ROLL CALL!!

Havent posted in a while. is now almost 5 years old and is the funniest

little girl I've ever met. I am very blessed to have her. I wish I would have

done some research and knew about the conference before we booked a cruise. I

have never physically met anyone else besides my daughter that has MDS. It is a

great opportunity and who knows what can happen at the last minute.....

Donna Goodman wrote:

>I am Donna Goodman, the grandmother (Nanny) to Ariana, 2-1/2 and 10 other

>grandchildren. Ari was born with the AV canal defect and had open-heart

surgery

>at 4 months (and 9 lbs total weight!). She recovered like a champ and is now

>down to one medication that the cardiologist says she may be able to do without

>by mid-year (yay!!). She has a little issue with nyastagmus but doesn't need

>glasses. She is great with sign language, says quite a few things (like " Oh

>man! " when she trips or someone won't let her have a cookie). She is the most

>amazing little human being I have ever known, and I can never get enough of

>her.

>

>

>I don't normally contribute to the posts, but I absolutely love reading about

>everyone's experiences. These kids are just unbelievable blessings.

>

>

>

>

>

>

>Subject: It's that time again. ROLL CALL!!

>To: " IMDSA GROUP " <MosaicDS >

>Date: Tuesday, January 4, 2011, 11:41 AM

>

>

>

>

>

>

>ROLL CALL

>

>If, you haven't met or talked to me yet. My name is Casey Morton, I am the

>self-advocate of the IMDSA. was your newsletter editor, and now your family

>connect coordinator, I also have Mosaic Down Syndrome. I have a son along with

>me; his name is Ronin and is 3 1/2 all and boy. I have been working with, and

>for the IMDSA board and families for a good 2 years now. And have done

>multi-media video blogs with life lessons to all on face-book, and now through

>the new IMDSA Website; www.imdsa.org I have talked to families through-out the

>world, reaching out to as many people as I possibly to let them, and you know;

> " You are Not Alone! " I saw you at the last conference, and I'll see you again

in

>

>Orlando!

>

>Keep it coming, let your presence be known and tell us who you are and what

>you've been doing, and what's going on in a paragraph.

>

>It's show and tell time everyone.

>

>Casey Morton: ----------------------------------

>IMDSA Self-Advocate/Spokesman www.imdsa.org

>----------------------------------------------------

>

>

[Guest guest]

I am a single mom to two amazing boys; , 4 and Ethan 21 months mDS. We found

out that Ethan had mDS at 13 months old. In the last 8 months he has gone from

just sitting (no rolling over, no pushing up) to nearly running. He amazes me

every day and has grown tremendously. Ethan is lucky enough to have services

provided by Easter Seals of California and sees therapist 4 days a week (speech,

OT, PT and Child Development). Even a bigger blessing is that he has a clean

bill of health - no heart problems and his sight is great. He did have a small

surgical procedure in August to open up his tear ducts as they were both

obstructed. He goes to an infant center and preschool with his big brother and

loves it. Can't imagine my life any other way! Lucky woman am I.

>

> ROLL CALL

>

> If, you haven't met or talked to me yet. My name is Casey Morton, I am the

> self-advocate of the IMDSA. was your newsletter editor, and now your family

> connect coordinator, I also have Mosaic Down Syndrome. I have a son along with

> me; his name is Ronin and is 3 1/2 all and boy. I have been working with, and

> for the IMDSA board and families for a good 2 years now. And have done

> multi-media video blogs with life lessons to all on face-book, and now through

> the new IMDSA Website; www.imdsa.org I have talked to families through-out the

> world, reaching out to as many people as I possibly to let them, and you know;

> " You are Not Alone! " I saw you at the last conference, and I'll see you again

in

> Orlando!

>

>

> Keep it coming, let your presence be known and tell us who you are and what

> you've been doing, and what's going on in a paragraph.

>

>

> It's show and tell time everyone.

>

>

> Casey Morton: ----------------------------------

> IMDSA Self-Advocate/Spokesman www.imdsa.org

> ----------------------------------------------------

>

>

[Guest guest]

I'm Angelique Upper, mom to 6, including , who will turn 18 later this

month. also has Hirschsprung's Disease, which was evident at birth,

and had 3 operations to correct that. I knew something more was wrong, but

the doctors blew me off. At 16 months old, *I* had an appointment with a

geneticist, and couldn't find a sitter, so just happened to take him with

me........................and she was more interested in him than in me, and

straight out asked me if she could do blood work on him...and the MDS was

finally diagnosed.

In a message dated 1/6/2011 5:14:24 A.M. Mountain Standard Time,

madkat1@... writes:

I am Jodi Fulmer, mother of 2 beautiful girls Madelyn 2yrs, and

3mos. was diagnosed with MDS when I was 3 months pregnant. The dr's saw

some DS markers on an ultrasound and did an amnio. The markers eventually

corrected themselves and went away but the amnio showed MDS. , so

far, has no issues and we are hoping for this to continue. She has just the

slightest look of DS in the shape of her eyes but that's it. She talks

baby talk and is rolling over from front to back and is about to roll back the

other way as well. I am so glad I found this group so I can read about

all of you and your amazing families. It really helps us to be prepared for

anything may face in the future and to know we are certainly not

alone! Thank you all!

>

>

>

> Subject: It's that time again. ROLL CALL!!

> To: " IMDSA GROUP " <MosaicDS >

> Date: Tuesday, January 4, 2011, 11:41 AM

>

>

> Â

>

>

>

> ROLL CALL

>

> If, you haven't met or talked to me yet. My name is Casey Morton, I am

the

> self-advocate of the IMDSA. was your newsletter editor, and now your

family

> connect coordinator, I also have Mosaic Down Syndrome. I have a son

along with

> me; his name is Ronin and is 3 1/2 all and boy. I have been working

with, and

> for the IMDSA board and families for a good 2 years now. And have done

> multi-media video blogs with life lessons to all on face-book, and now

through

> the new IMDSA Website; www.imdsa.org I have talked to families

through-out the

> world, reaching out to as many people as I possibly to let them, and you

know;

> " You are Not Alone! " I saw you at the last conference, and I'll see you

again in

> Orlando!

>

> Keep it coming, let your presence be known and tell us who you are and

what

> you've been doing, and what's going on in a paragraph.

>

> It's show and tell time everyone.

>

> Casey Morton: ----------------------------------

> IMDSA Self-Advocate/Spokesman www.imdsa.org

> ----------------------------------------------------

>

> [Non-text portions of this message have been removed]

>

>

>

>

>

>

>

>

>

>

>

> [Non-text portions of this message have been removed]

>

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

Join us for our 2011 Research & Awareness Conference in Orlando FL!

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

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

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

Contact IMDSA Today at:

IMDSA~PO Box 1489~Midlthian,TX~76065~USA~1-~1-888-MDS-LINK

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

Share your story today! http://www.mosaicdownsyndrome.com

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

To unsubscribe from this list, send e-mail to:

MosaicDS-unsubscribeegroups

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

To visit the e-group website go to:

http://groups.yahoo.com/group/MosaicDS/

*************************************************Yahoo! Groups Links

[Guest guest]

I am Jodi Fulmer, mother of 2 beautiful girls Madelyn 2yrs, and 3mos.

was diagnosed with MDS when I was 3 months pregnant. The dr's saw some DS

markers on an ultrasound and did an amnio. The markers eventually corrected

themselves and went away but the amnio showed MDS. , so far, has no issues

and we are hoping for this to continue. She has just the slightest look of DS

in the shape of her eyes but that's it. She talks baby talk and is rolling over

from front to back and is about to roll back the other way as well. I am so

glad I found this group so I can read about all of you and your amazing

families. It really helps us to be prepared for anything may face in the

future and to know we are certainly not alone! Thank you all!

>

>

>

> Subject: It's that time again. ROLL CALL!!

> To: " IMDSA GROUP " <MosaicDS >

> Date: Tuesday, January 4, 2011, 11:41 AM

>

>

>  

>

>

>

> ROLL CALL

>

> If, you haven't met or talked to me yet. My name is Casey Morton, I am the

> self-advocate of the IMDSA. was your newsletter editor, and now your family

> connect coordinator, I also have Mosaic Down Syndrome. I have a son along with

> me; his name is Ronin and is 3 1/2 all and boy. I have been working with, and

> for the IMDSA board and families for a good 2 years now. And have done

> multi-media video blogs with life lessons to all on face-book, and now through

> the new IMDSA Website; www.imdsa.org I have talked to families through-out the

> world, reaching out to as many people as I possibly to let them, and you know;

> " You are Not Alone! " I saw you at the last conference, and I'll see you again

in

> Orlando!

>

> Keep it coming, let your presence be known and tell us who you are and what

> you've been doing, and what's going on in a paragraph.

>

> It's show and tell time everyone.

>

> Casey Morton: ----------------------------------

> IMDSA Self-Advocate/Spokesman www.imdsa.org

> ----------------------------------------------------

>

>

[Guest guest]

Hi all,

I'm , my husband and I welcomed baby Kira on November 4th, so she just

turned 2 months. She was diagnosed with MDS at a week old. So far she is doing

amazingly well, cooing, laughing and showing us how strong she is. This group

has already been the source of much comfort for us as we begin this journey.

> >

> >

> > From: Casey Morton <casey@>

> > Subject: It's that time again. ROLL CALL!!

> > To: " IMDSA GROUP " <MosaicDS >

> > Date: Tuesday, January 4, 2011, 11:41 AM

> >

> >

> > Â

> >

> >

> >

> > ROLL CALL

> >

> > If, you haven't met or talked to me yet. My name is Casey Morton, I am

> the

> > self-advocate of the IMDSA. was your newsletter editor, and now your

> family

> > connect coordinator, I also have Mosaic Down Syndrome. I have a son

> along with

> > me; his name is Ronin and is 3 1/2 all and boy. I have been working

> with, and

> > for the IMDSA board and families for a good 2 years now. And have done

> > multi-media video blogs with life lessons to all on face-book, and now

> through

> > the new IMDSA Website; www.imdsa.org I have talked to families

> through-out the

> > world, reaching out to as many people as I possibly to let them, and you

> know;

> > " You are Not Alone! " I saw you at the last conference, and I'll see you

> again in

> > Orlando!

> >

> > Keep it coming, let your presence be known and tell us who you are and

> what

> > you've been doing, and what's going on in a paragraph.

> >

> > It's show and tell time everyone.

> >

> > Casey Morton: ----------------------------------

> > IMDSA Self-Advocate/Spokesman www.imdsa.org

> > ----------------------------------------------------

> >

> > [Non-text portions of this message have been removed]

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > [Non-text portions of this message have been removed]

> >

>

>

>

>

> ------------------------------------

>

> Join us for our 2011 Research & Awareness Conference in Orlando FL!

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

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

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

> Contact IMDSA Today at:

> IMDSA~PO Box 1489~Midlthian,TX~76065~USA~1-~1-888-MDS-LINK

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

> Share your story today! http://www.mosaicdownsyndrome.com

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

> To unsubscribe from this list, send e-mail to:

> MosaicDS-unsubscribeegroups

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

> To visit the e-group website go to:

> http://groups.yahoo.com/group/MosaicDS/

> *************************************************Yahoo! Groups Links

>

>

>

>

>

[Guest guest]

Hello! My name is Sonya, I am a wife and mother of two: 27 months (MDS),

and Henry 7 months. was diagnosed right after birth when my husband

insisted she have a DNA test because her eyes were slanted (I thought he was

crazy - I didn't see anything). Once the 4th pediatrician we saw agreed to it,

her results came at 2 weeks old. She is a joy, and quite the entertainer! She

LOVES music and anything having to do with it. We sing her " Happy Birthday "

everyday! We count our blessings everyday for her clean bill of health. I look

forward to all the discussions and the information. It's a place where I feel

that I belong.

My husband and I are now realizing (after having a typical baby) what most

families go through.... was so laid back, never complained, slept so well,

no real teething pain, etc...Henry, not so much! Not sure if this is common with

babies with MDS or maybe it's " girl " - who knows, but we thought we had it

figured out!

>

> ROLL CALL

>

> If, you haven't met or talked to me yet. My name is Casey Morton, I am the

> self-advocate of the IMDSA. was your newsletter editor, and now your family

> connect coordinator, I also have Mosaic Down Syndrome. I have a son along with

> me; his name is Ronin and is 3 1/2 all and boy. I have been working with, and

> for the IMDSA board and families for a good 2 years now. And have done

> multi-media video blogs with life lessons to all on face-book, and now through

> the new IMDSA Website; www.imdsa.org I have talked to families through-out the

> world, reaching out to as many people as I possibly to let them, and you know;

> " You are Not Alone! " I saw you at the last conference, and I'll see you again

in

> Orlando!

>

>

> Keep it coming, let your presence be known and tell us who you are and what

> you've been doing, and what's going on in a paragraph.

>

>

> It's show and tell time everyone.

>

>

> Casey Morton: ----------------------------------

> IMDSA Self-Advocate/Spokesman www.imdsa.org

> ----------------------------------------------------

>

>

[Guest guest]

----- Forwarded message -----

Date: Fri, Jan 7, 2011 7:16 am

Subject: Re: Re: It's that time again. ROLL CALL!!

To: " jlynnfulmer "

----- Reply message -----

Date: Thu, Jan 6, 2011 7:14 am

Subject: Re: It's that time again. ROLL CALL!!

To: <MosaicDS >

[Guest guest]

Hi Casey and everyone!

My name is Tacia and I am mom to Olivia who is 9 1/2 months old. Livy was

diagnosed with MDS 2 weeks after birth. It was a rough start, but I found this

group, which was a great comfort and my husband and I have been enjoying

parenthood ever since! Livy is such a little personality. Loves to babble, blow

raspberries and laugh. She's not crawling yet, but she is scooting around on her

bumm. Her legs are really strong and she loves to stand and jump in her jumpy!

She does have a weak trunk and as a result, her fine motor skills are delayed,

but otherwise a clean bill of health and progressing fabulously!

Sonya, I read that your is a laid back baby. Olivia is too! Never much of

a cryer, happy, smiling, slept through the night from 3 1/2 months ... I too

thought it was a girl thing. Lol! Since she's our first we have nothing to

compare to. She's also very social!

Continue to enjoy reading and posting in this group! You guys have been great!

Tacia

[Guest guest]

Hello -

My name is Darlene and I am the proud mother of 2 wonderful children and the

wife of . is 14 and doing wonderfully in middle school.

is 12, for one more month. She is in 5th grade currently. She should be in

6th grade but I held her back waiting for speech - that was a mistake, I am

sure that it was not my first or my last. She amazes me every day with what

she knows and her wacky sense of humor.

As an infant, she was the polar opposite of her brother - she was quiet,

always happy, slept like an angel. Her brother NEVER slept - still

doesn't. My children are still polar opposites, is the life of the

party, she wants to be center stage (even though she still does not talk

much). Her brother wants to blend in to the back ground, however he is

always talking (probably the reason does not talk much - it is hard

to get a word in edgewise)

has had a host of medical issues and has been in the hospital 5 times

in 12 years. Most are silly things, that get complicated because she does

not complain and let me know about it. Some were serious things like she

had a blockage in the top of her small intestine, she had 3 holes in her

heart (but no one knew until she was 10!!!)

I have been with this list since it was just an email group, then it became

a yahoo group, then an international organization - all in the past 12

years, it has been an amazing journey. I have gone from a working mom with

a wonderful stay at home dad, to an stay at home mom with a wonderful man

who supports us fully. I have been working on my certification to teach

high school math for the past 5 years and I will complete it in 2011!

I have learned a lot about how the school system in the US works and the

laws which they are supposed to follow. I have fought tooth and nail for my

children and will continue to be their loudest and most involved advocate.

I have learned a lot from some of the people on this list and I am proud to

call them my friends.

Darlene

>

>

> Hello! My name is Sonya, I am a wife and mother of two: 27 months

> (MDS), and Henry 7 months. was diagnosed right after birth when my

> husband insisted she have a DNA test because her eyes were slanted (I

> thought he was crazy - I didn't see anything). Once the 4th pediatrician we

> saw agreed to it, her results came at 2 weeks old. She is a joy, and quite

> the entertainer! She LOVES music and anything having to do with it. We sing

> her " Happy Birthday " everyday! We count our blessings everyday for her clean

> bill of health. I look forward to all the discussions and the information.

> It's a place where I feel that I belong.

>

> My husband and I are now realizing (after having a typical baby) what most

> families go through.... was so laid back, never complained, slept so

> well, no real teething pain, etc...Henry, not so much! Not sure if this is

> common with babies with MDS or maybe it's " girl " - who knows, but we thought

> we had it figured out!

>

>

>

> >

> > ROLL CALL

> >

> > If, you haven't met or talked to me yet. My name is Casey Morton, I am

> the

> > self-advocate of the IMDSA. was your newsletter editor, and now your

> family

> > connect coordinator, I also have Mosaic Down Syndrome. I have a son along

> with

> > me; his name is Ronin and is 3 1/2 all and boy. I have been working with,

> and

> > for the IMDSA board and families for a good 2 years now. And have done

> > multi-media video blogs with life lessons to all on face-book, and now

> through

> > the new IMDSA Website; www.imdsa.org I have talked to families

> through-out the

> > world, reaching out to as many people as I possibly to let them, and you

> know;

> > " You are Not Alone! " I saw you at the last conference, and I'll see you

> again in

> > Orlando!

> >

> >

> > Keep it coming, let your presence be known and tell us who you are and

> what

> > you've been doing, and what's going on in a paragraph.

> >

> >

> > It's show and tell time everyone.

> >

> >

> > Casey Morton: ----------------------------------

> > IMDSA Self-Advocate/Spokesman www.imdsa.org

> > ----------------------------------------------------

> >

> >

[Guest guest]

My name is and I am a proud mom of Tommy who is 34 month old. He

was prenatally diagnosed with Down syndrome. But we think he may have

MDS. I am expecting my second child who has a high risk for trisomy 21

according to the prenatal screening, but this time we won't do the

amnio. We know how is having a child with T21 and it is not the end of

the world. I am married to Adam who is a wonderful man and an amazing

dad.

I have been in this list since 2008. I got enrolled about 2 months

after my son was born. I have learned so much from what it is discuss

and share in the group. This is a great support group!

Thanks,

Www.asuperbaby.blogspot.com

Sent from my iPhone

On Jan 7, 2011, at 10:55 AM, Darlene Benoit

wrote:

> Hello -

>

> My name is Darlene and I am the proud mother of 2 wonderful children

> and the

> wife of . is 14 and doing wonderfully in middle school.

>

> is 12, for one more month. She is in 5th grade currently. She

> should be in

> 6th grade but I held her back waiting for speech - that was a

> mistake, I am

> sure that it was not my first or my last. She amazes me every day

> with what

> she knows and her wacky sense of humor.

>

> As an infant, she was the polar opposite of her brother - she was

> quiet,

> always happy, slept like an angel. Her brother NEVER slept - still

> doesn't. My children are still polar opposites, is the life

> of the

> party, she wants to be center stage (even though she still does not

> talk

> much). Her brother wants to blend in to the back ground, however he

> is

> always talking (probably the reason does not talk much - it

> is hard

> to get a word in edgewise)

>

> has had a host of medical issues and has been in the hospital

> 5 times

> in 12 years. Most are silly things, that get complicated because

> she does

> not complain and let me know about it. Some were serious things

> like she

> had a blockage in the top of her small intestine, she had 3 holes in

> her

> heart (but no one knew until she was 10!!!)

>

> I have been with this list since it was just an email group, then it

> became

> a yahoo group, then an international organization - all in the past 12

> years, it has been an amazing journey. I have gone from a working

> mom with

> a wonderful stay at home dad, to an stay at home mom with a

> wonderful man

> who supports us fully. I have been working on my certification to

> teach

> high school math for the past 5 years and I will complete it in 2011!

>

> I have learned a lot about how the school system in the US works and

> the

> laws which they are supposed to follow. I have fought tooth and

> nail for my

> children and will continue to be their loudest and most involved

> advocate.

>

> I have learned a lot from some of the people on this list and I am

> proud to

> call them my friends.

>

> Darlene

>

>

>

>>

>>

>> Hello! My name is Sonya, I am a wife and mother of two: 27

>> months

>> (MDS), and Henry 7 months. was diagnosed right after birth

>> when my

>> husband insisted she have a DNA test because her eyes were slanted (I

>> thought he was crazy - I didn't see anything). Once the 4th

>> pediatrician we

>> saw agreed to it, her results came at 2 weeks old. She is a joy,

>> and quite

>> the entertainer! She LOVES music and anything having to do with it.

>> We sing

>> her " Happy Birthday " everyday! We count our blessings everyday for

>> her clean

>> bill of health. I look forward to all the discussions and the

>> information.

>> It's a place where I feel that I belong.

>>

>> My husband and I are now realizing (after having a typical baby)

>> what most

>> families go through.... was so laid back, never complained,

>> slept so

>> well, no real teething pain, etc...Henry, not so much! Not sure if

>> this is

>> common with babies with MDS or maybe it's " girl " - who knows, but

>> we thought

>> we had it figured out!

>>

>>

>>

>>>

>>> ROLL CALL

>>>

>>> If, you haven't met or talked to me yet. My name is Casey Morton,

>>> I am

>> the

>>> self-advocate of the IMDSA. was your newsletter editor, and now your

>> family

>>> connect coordinator, I also have Mosaic Down Syndrome. I have a

>>> son along

>> with

>>> me; his name is Ronin and is 3 1/2 all and boy. I have been

>>> working with,

>> and

>>> for the IMDSA board and families for a good 2 years now. And have

>>> done

>>> multi-media video blogs with life lessons to all on face-book, and

>>> now

>> through

>>> the new IMDSA Website; www.imdsa.org I have talked to families

>> through-out the

>>> world, reaching out to as many people as I possibly to let them,

>>> and you

>> know;

>>> " You are Not Alone! " I saw you at the last conference, and I'll

>>> see you

>> again in

>>> Orlando!

>>>

>>>

>>> Keep it coming, let your presence be known and tell us who you are

>>> and

>> what

>>> you've been doing, and what's going on in a paragraph.

>>>

>>>

>>> It's show and tell time everyone.

>>>

>>>

>>> Casey Morton: ----------------------------------

>>> IMDSA Self-Advocate/Spokesman www.imdsa.org

>>> ----------------------------------------------------

>>>

>>>

[Guest guest]

Hello All,

 

My name is Donna and I believe I was the first grandmother to join this group 8

years ago when my grandson Adam was born.

Adam was diagnosed at the age of 2 days.  We started therapy with First Steps

at age 3 month and I am always thankful for the early diagnoses so we could get

started with therapy early.  Adam is in 3rd grade in a MO classroom.  He also

goes to a regular ed 3rd grade for part of the day for reading groups and other

activities.  His biggest problem is a speech delay.  He is talking more, but

needs to be prompted to talk.  Other than that, he is like all little boys,

jumping, running and rolling across the floor, crashing cars into each other and

playing video games.  This was quite a shock since Adam is the first boy born

in our family and we didn't exactly know what to do with him.  My daughter

worried that some of that behavior was because he had MDS and then we decided it

was just because he was a boy.  He has no health problems aside from severe

reflux as a toddler which he has outgrown.

I was very active in this group, when Adam was smaller.  I still enjoy reading

the post.  One suggestion I have for all of you with little ones.  You need to

brag more.  I want to read about all of the wonderful accomplishment that your

little ones have.  When the group was newer, we did that a lot.  This is a

good place to brag - so let's hear it.

 

Donna - gram to Adam 8 MDS, Skylar 8 and Mia 4

Subject: It's that time again. ROLL CALL!!

To: " IMDSA GROUP " <MosaicDS >

Date: Tuesday, January 4, 2011, 11:41 AM

 

ROLL CALL

If, you haven't met or talked to me yet. My name is Casey Morton, I am the

self-advocate of the IMDSA. was your newsletter editor, and now your family

connect coordinator, I also have Mosaic Down Syndrome. I have a son along with

me; his name is Ronin and is 3 1/2 all and boy. I have been working with, and

for the IMDSA board and families for a good 2 years now. And have done

multi-media video blogs with life lessons to all on face-book, and now through

the new IMDSA Website; www.imdsa.org I have talked to families through-out the

world, reaching out to as many people as I possibly to let them, and you know;

" You are Not Alone! " I saw you at the last conference, and I'll see you again in

Orlando!

Keep it coming, let your presence be known and tell us who you are and what

you've been doing, and what's going on in a paragraph.

It's show and tell time everyone.

Casey Morton: ----------------------------------

IMDSA Self-Advocate/Spokesman www.imdsa.org

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

[Guest guest]

My name is Bolduc and I'm a proud mother of 4 and grandmother of 2. My

oldest 2 are 23 and 21 and out of the house. Then I have Jezeca, with a rare

chromosome abnomaly called Trisomy 10q and 5p- syndrome (known as Cri du Chat or

Cat cry syndrome). My sister also has this and I carry the balanced

translocation. Then we have Zephany, age 4 1/2, born 6-6-06 !! Prenatally

diagnosed with Trisomy 21. I figured if anything, the baby would have the same

syndrome that Jezeca has. Wrong ! We knew Zephany had AV canal so we had her

cardiologist picked out and ready for surgery if needed at birth. Fortunantly,

she was able to wait until she was almost 9 months old. She got through that

fine and then the day she was to get released, I called the nurse in as her

heart started skipping beats. They called the doctor and he said to keep her

overnight to monitor her. Dad came down to spend the night with her and I went

home to be with Jezeca. The next morning the " clown docter " came in to play with

Zephany and as soon as he left, she had complete heart block!! I was not there

but my husband said " crash carts are very real and scary when they are yelling

for him to get out of the room " ! He called me and calmly told me that I needed

to get down to the hospital NOW! A 40 min. drive took me less than 30 min. I

was able to see her on her external pacemaker keeping her alive so I could say

goodbye before they took her to surgery. Thank God, she came out of it all okay

and today she is only using her pacemaker .02%! This past week she was hooked

up to a 24 hour EKG holter and I am waiting for the results to see if she paced.

The doctor is considering to remove it. Zephany walked at 15 months and met all

her milestones on or before target. Her speech is good and SP is working with

her articulation as she believes Zephany will have perfect speech. She also

knows alot of sign language. She has learned signing only because Jezeca has

limited speech. Zephany does not qualify for PT. She does get OT and as of now

they are just working with her on cutting skills. Zephany loves to roller skate,

and swim. Last night she went snow skiing and her instructor let go of her and

she was able to ski 40 feet by herself. She is a go getter and nothing will stop

her. I'm sure this summer I'll lose her as she loves to go trucking with her

daddy () who is a very awesome dad to these girls. We do believe that she

is possibly mis-diagnosed and is possibly MDs. Her therapists asked me about her

maybe being MDs when she was 1 year old and I had never heard of MDs. So I did

some research and found IMDSA. I went to Ohio for the last conference and had

and wonderful time and met some wonderful families. Looking forward to Florida's

conference in July and then Zeph will start full day kindergarten in August ! I

will be kid free during the day for the first time in 24 years !! Woohoo!!

Hope to see you all in Florida !!

Re: It's that time again. ROLL CALL!!

My name is and I am a proud mom of Tommy who is 34 month old. He

was prenatally diagnosed with Down syndrome. But we think he may have

MDS. I am expecting my second child who has a high risk for trisomy 21

according to the prenatal screening, but this time we won't do the

amnio. We know how is having a child with T21 and it is not the end of

the world. I am married to Adam who is a wonderful man and an amazing

dad.

I have been in this list since 2008. I got enrolled about 2 months

after my son was born. I have learned so much from what it is discuss

and share in the group. This is a great support group!

Thanks,

Www.asuperbaby.blogspot.com

Sent from my iPhone

On Jan 7, 2011, at 10:55 AM, Darlene Benoit

wrote:

> Hello -

>

> My name is Darlene and I am the proud mother of 2 wonderful children

> and the

> wife of . is 14 and doing wonderfully in middle school.

>

> is 12, for one more month. She is in 5th grade currently. She

> should be in

> 6th grade but I held her back waiting for speech - that was a

> mistake, I am

> sure that it was not my first or my last. She amazes me every day

> with what

> she knows and her wacky sense of humor.

>

> As an infant, she was the polar opposite of her brother - she was

> quiet,

> always happy, slept like an angel. Her brother NEVER slept - still

> doesn't. My children are still polar opposites, is the life

> of the

> party, she wants to be center stage (even though she still does not

> talk

> much). Her brother wants to blend in to the back ground, however he

> is

> always talking (probably the reason does not talk much - it

> is hard

> to get a word in edgewise)

>

> has had a host of medical issues and has been in the hospital

> 5 times

> in 12 years. Most are silly things, that get complicated because

> she does

> not complain and let me know about it. Some were serious things

> like she

> had a blockage in the top of her small intestine, she had 3 holes in

> her

> heart (but no one knew until she was 10!!!)

>

> I have been with this list since it was just an email group, then it

> became

> a yahoo group, then an international organization - all in the past 12

> years, it has been an amazing journey. I have gone from a working

> mom with

> a wonderful stay at home dad, to an stay at home mom with a

> wonderful man

> who supports us fully. I have been working on my certification to

> teach

> high school math for the past 5 years and I will complete it in 2011!

>

> I have learned a lot about how the school system in the US works and

> the

> laws which they are supposed to follow. I have fought tooth and

> nail for my

> children and will continue to be their loudest and most involved

> advocate.

>

> I have learned a lot from some of the people on this list and I am

> proud to

> call them my friends.

>

> Darlene

>

>

>

>>

>>

>> Hello! My name is Sonya, I am a wife and mother of two: 27

>> months

>> (MDS), and Henry 7 months. was diagnosed right after birth

>> when my

>> husband insisted she have a DNA test because her eyes were slanted (I

>> thought he was crazy - I didn't see anything). Once the 4th

>> pediatrician we

>> saw agreed to it, her results came at 2 weeks old. She is a joy,

>> and quite

>> the entertainer! She LOVES music and anything having to do with it.

>> We sing

>> her " Happy Birthday " everyday! We count our blessings everyday for

>> her clean

>> bill of health. I look forward to all the discussions and the

>> information.

>> It's a place where I feel that I belong.

>>

>> My husband and I are now realizing (after having a typical baby)

>> what most

>> families go through.... was so laid back, never complained,

>> slept so

>> well, no real teething pain, etc...Henry, not so much! Not sure if

>> this is

>> common with babies with MDS or maybe it's " girl " - who knows, but

>> we thought

>> we had it figured out!

>>

>>

>>

>>>

>>> ROLL CALL

>>>

>>> If, you haven't met or talked to me yet. My name is Casey Morton,

>>> I am

>> the

>>> self-advocate of the IMDSA. was your newsletter editor, and now your

>> family

>>> connect coordinator, I also have Mosaic Down Syndrome. I have a

>>> son along

>> with

>>> me; his name is Ronin and is 3 1/2 all and boy. I have been

>>> working with,

>> and

>>> for the IMDSA board and families for a good 2 years now. And have

>>> done

>>> multi-media video blogs with life lessons to all on face-book, and

>>> now

>> through

>>> the new IMDSA Website; www.imdsa.org I have talked to families

>> through-out the

>>> world, reaching out to as many people as I possibly to let them,

>>> and you

>> know;

>>> " You are Not Alone! " I saw you at the last conference, and I'll

>>> see you

>> again in

>>> Orlando!

>>>

>>>

>>> Keep it coming, let your presence be known and tell us who you are

>>> and

>> what

>>> you've been doing, and what's going on in a paragraph.

>>>

>>>

>>> It's show and tell time everyone.

>>>

>>>

>>> Casey Morton: ----------------------------------

>>> IMDSA Self-Advocate/Spokesman www.imdsa.org

>>> ----------------------------------------------------

>>>

>>>

[Guest guest]

My name is Kate Bangs and I have a little girl called belle who is 5 years

old and was diagnosed with 4% MDS.  We went to all of the therapies when she

was

small, but now she just leads the regular life of a 5 year old child.  She

attends a mainstream school, where she is in the top set and is coming on in

leaps and bounds with her reading and writing.  She is not very phyically

strong

and she is not very tall, however these characteristics aside, no-one would know

that some of her cells have an extra chromosome!  We have come a long way from

the day when she was just 5 days old and I was told that she had a rare form of

Downs Syndrome.

________________________________

To: MosaicDS

Sent: Fri, 7 January, 2011 21:06:34

Subject: Re: Re: It's that time again. ROLL CALL!!

 

My name is Bolduc and I'm a proud mother of 4 and grandmother of 2. My

oldest 2 are 23 and 21 and out of the house. Then I have Jezeca, with a rare

chromosome abnomaly called Trisomy 10q and 5p- syndrome (known as Cri du Chat or

Cat cry syndrome). My sister also has this and I carry the balanced

translocation. Then we have Zephany, age 4 1/2, born 6-6-06 !! Prenatally

diagnosed with Trisomy 21. I figured if anything, the baby would have the same

syndrome that Jezeca has. Wrong ! We knew Zephany had AV canal so we had her

cardiologist picked out and ready for surgery if needed at birth. Fortunantly,

she was able to wait until she was almost 9 months old. She got through that

fine and then the day she was to get released, I called the nurse in as her

heart started skipping beats. They called the doctor and he said to keep her

overnight to monitor her. Dad came down to spend the night with her and I went

home to be with Jezeca. The next morning the " clown docter " came in to play with

Zephany and as soon as he left, she had complete heart block!! I was not there

but my husband said " crash carts are very real and scary when they are yelling

for him to get out of the room " ! He called me and calmly told me that I needed

to get down to the hospital NOW! A 40 min. drive took me less than 30 min. I was

able to see her on her external pacemaker keeping her alive so I could say

goodbye before they took her to surgery. Thank God, she came out of it all okay

and today she is only using her pacemaker .02%! This past week she was hooked up

to a 24 hour EKG holter and I am waiting for the results to see if she paced.

The doctor is considering to remove it. Zephany walked at 15 months and met all

her milestones on or before target. Her speech is good and SP is working with

her articulation as she believes Zephany will have perfect speech. She also

knows alot of sign language. She has learned signing only because Jezeca has

limited speech. Zephany does not qualify for PT. She does get OT and as of now

they are just working with her on cutting skills. Zephany loves to roller skate,

and swim. Last night she went snow skiing and her instructor let go of her and

she was able to ski 40 feet by herself. She is a go getter and nothing will stop

her. I'm sure this summer I'll lose her as she loves to go trucking with her

daddy () who is a very awesome dad to these girls. We do believe that she

is possibly mis-diagnosed and is possibly MDs. Her therapists asked me about her

maybe being MDs when she was 1 year old and I had never heard of MDs. So I did

some research and found IMDSA. I went to Ohio for the last conference and had

and wonderful time and met some wonderful families. Looking forward to Florida's

conference in July and then Zeph will start full day kindergarten in August ! I

will be kid free during the day for the first time in 24 years !! Woohoo!!

Hope to see you all in Florida !!

Re: It's that time again. ROLL CALL!!

My name is and I am a proud mom of Tommy who is 34 month old. He

was prenatally diagnosed with Down syndrome. But we think he may have

MDS. I am expecting my second child who has a high risk for trisomy 21

according to the prenatal screening, but this time we won't do the

amnio. We know how is having a child with T21 and it is not the end of

the world. I am married to Adam who is a wonderful man and an amazing

dad.

I have been in this list since 2008. I got enrolled about 2 months

after my son was born. I have learned so much from what it is discuss

and share in the group. This is a great support group!

Thanks,

Www.asuperbaby.blogspot.com

Sent from my iPhone

On Jan 7, 2011, at 10:55 AM, Darlene Benoit

wrote:

> Hello -

>

> My name is Darlene and I am the proud mother of 2 wonderful children

> and the

> wife of . is 14 and doing wonderfully in middle school.

>

> is 12, for one more month. She is in 5th grade currently. She

> should be in

> 6th grade but I held her back waiting for speech - that was a

> mistake, I am

> sure that it was not my first or my last. She amazes me every day

> with what

> she knows and her wacky sense of humor.

>

> As an infant, she was the polar opposite of her brother - she was

> quiet,

> always happy, slept like an angel. Her brother NEVER slept - still

> doesn't. My children are still polar opposites, is the life

> of the

> party, she wants to be center stage (even though she still does not

> talk

> much). Her brother wants to blend in to the back ground, however he

> is

> always talking (probably the reason does not talk much - it

> is hard

> to get a word in edgewise)

>

> has had a host of medical issues and has been in the hospital

> 5 times

> in 12 years. Most are silly things, that get complicated because

> she does

> not complain and let me know about it. Some were serious things

> like she

> had a blockage in the top of her small intestine, she had 3 holes in

> her

> heart (but no one knew until she was 10!!!)

>

> I have been with this list since it was just an email group, then it

> became

> a yahoo group, then an international organization - all in the past 12

> years, it has been an amazing journey. I have gone from a working

> mom with

> a wonderful stay at home dad, to an stay at home mom with a

> wonderful man

> who supports us fully. I have been working on my certification to

> teach

> high school math for the past 5 years and I will complete it in 2011!

>

> I have learned a lot about how the school system in the US works and

> the

> laws which they are supposed to follow. I have fought tooth and

> nail for my

> children and will continue to be their loudest and most involved

> advocate.

>

> I have learned a lot from some of the people on this list and I am

> proud to

> call them my friends.

>

> Darlene

>

>

>

>>

>>

>> Hello! My name is Sonya, I am a wife and mother of two: 27

>> months

>> (MDS), and Henry 7 months. was diagnosed right after birth

>> when my

>> husband insisted she have a DNA test because her eyes were slanted (I

>> thought he was crazy - I didn't see anything). Once the 4th

>> pediatrician we

>> saw agreed to it, her results came at 2 weeks old. She is a joy,

>> and quite

>> the entertainer! She LOVES music and anything having to do with it.

>> We sing

>> her " Happy Birthday " everyday! We count our blessings everyday for

>> her clean

>> bill of health. I look forward to all the discussions and the

>> information.

>> It's a place where I feel that I belong.

>>

>> My husband and I are now realizing (after having a typical baby)

>> what most

>> families go through.... was so laid back, never complained,

>> slept so

>> well, no real teething pain, etc...Henry, not so much! Not sure if

>> this is

>> common with babies with MDS or maybe it's " girl " - who knows, but

>> we thought

>> we had it figured out!

>>

>>

>>

>>>

>>> ROLL CALL

>>>

>>> If, you haven't met or talked to me yet. My name is Casey Morton,

>>> I am

>> the

>>> self-advocate of the IMDSA. was your newsletter editor, and now your

>> family

>>> connect coordinator, I also have Mosaic Down Syndrome. I have a

>>> son along

>> with

>>> me; his name is Ronin and is 3 1/2 all and boy. I have been

>>> working with,

>> and

>>> for the IMDSA board and families for a good 2 years now. And have

>>> done

>>> multi-media video blogs with life lessons to all on face-book, and

>>> now

>> through

>>> the new IMDSA Website; www.imdsa.org I have talked to families

>> through-out the

>>> world, reaching out to as many people as I possibly to let them,

>>> and you

>> know;

>>> " You are Not Alone! " I saw you at the last conference, and I'll

>>> see you

>> again in

>>> Orlando!

>>>

>>>

>>> Keep it coming, let your presence be known and tell us who you are

>>> and

>> what

>>> you've been doing, and what's going on in a paragraph.

>>>

>>>

>>> It's show and tell time everyone.

>>>

>>>

>>> Casey Morton: ----------------------------------

>>> IMDSA Self-Advocate/Spokesman www.imdsa.org

>>> ----------------------------------------------------

>>>

>>>

[Guest guest]

Hi everyone,

My name is Allysa, married to Troy and mother to Lexie (almost 2 - DS) and

Calleigh 3 1/2. Both my daughters were born in the U.K. and then we moved to

the U.S when Lexie was 6 mos which was when she was diagnosed since my Mom

thought she might have MDS (as a Speech Therapist my Mom had attended a

conference which had a medical doctor speaker who had MDS - wish we could

remember his name!) The doctors thought she the testing was unnecessary but we

insisted and we were right.

Lexie is on track or more advanced on all her milestones and we have been really

blessed with no physical concerns except blocked tear ducts for the first year

which cleared up on their own. As many of you have mentioned, she is my fun

loving kid who loves to dance for strangers, talk to anyone and is the life of

the party.

I love to hear everyone's experiences because I have felt very alone in never

having met anyone else with a MDS or a child with MDS and we don't quite fit in

with the local DS group even though we participate. It doesn't help that we seem

to have moved every six months lately so I am getting very good as setting up

ECI services VERY quickly! I try to stay very informed and let my husband

enjoy just treating her as if she is any other child so he isn't always

'looking' for something to be concerned about.

Thank you all for all your ideas and sharing your experiences whether they are

good or bad - it all helps! I also love to hear from the grandmothers since its

just fantastic to have such great support from our families!

[Guest guest]

hh.

hello, my name is Debbi and my daughter kaitee (13) has MDS.  Kaitee is

currently doing great!!  She attends The High Roads Academy a school for

children with a specific disabilty not capable of learning at the same speed as

their peers 53 percent of her day and the rest of the time is spent with her

peers in core subjects.  She is catching up and will be ready to attend high

school next year !!!  Kaitee was dx at age of 3 and has been a healthy peppy

little thing since birth. 

She is currently attending one on one therapy at the Kennady Krieger for

behavior problems.... her methods of dealing with bullies became unacceptable

and they have actually moved from social skills to eating habbits and sleep

problems .  Translated into the child doesnt sleep but loves to eat !!  She is a

typical teenager, her lastest love is Bruno Mars ...  Her most recent goal was

to sleep in a totally dark room with nothing but the radio playing , first time

ever the child has not had three lights a tv and radio running , she wears a

sleep mask so she doesnt know the lights are not on (her logic and it works so

we roll with it )  She is still up and down all night long, and by morning is

totally exhausted and not willing to get up.  We are testing the insurance to

see if they will cover a sleep study to rule out medical issues.  Kaitee also

has a duel dx of autism however with the therapy she has done some major

changing, she has learned how to control certain issues which would flip her out

before, she still perfers to be alone and doesnt have any friends.  But she does

readily hand out hugs and accepts touch now a days.... I have no regrets about

kaitee, I love and enjoy her each day. 

[Guest guest]

Hi everyone, I do not post much but I read the majority of posts, little Olivia

mentioned below is my Granddaughter and I love her dearly.

I enjoy reading about everyones achievements and enjoy the group.

Carol

X X X

Subject: Re: It's that time again. ROLL CALL!!

To: MosaicDS

Date: Friday, 7 January, 2011, 16:43

 

Hi Casey and everyone!

My name is Tacia and I am mom to Olivia who is 9 1/2 months old. Livy was

diagnosed with MDS 2 weeks after birth. It was a rough start, but I found this

group, which was a great comfort and my husband and I have been enjoying

parenthood ever since! Livy is such a little personality. Loves to babble, blow

raspberries and laugh. She's not crawling yet, but she is scooting around on her

bumm. Her legs are really strong and she loves to stand and jump in her jumpy!

She does have a weak trunk and as a result, her fine motor skills are delayed,

but otherwise a clean bill of health and progressing fabulously!

Sonya, I read that your is a laid back baby. Olivia is too! Never much of

a cryer, happy, smiling, slept through the night from 3 1/2 months ... I too

thought it was a girl thing. Lol! Since she's our first we have nothing to

compare to. She's also very social!

Continue to enjoy reading and posting in this group! You guys have been great!

Tacia

[Guest guest]

Im Teri, wife to and mom to Grace and Emma.  They are fraternal twins

and just turned 2.  They had a rough start and were dx at 4wks old with 20%

mDs.  It has been an interesting adventure.  Emma hit all her mile stones on

or before and was walking just before her first birthday.  Grace is just a

little behind, but she sees her sister do something and becomes determined to

do it too.  Grace was walking by 14 mo.  Grace goes to PT & OT every other wk,

but Emma no longer needs to go.  Emma is also talking quite a bit.  Grace has

a very small vocabulary and Im looking into adding SP for her.  They love to

sing and dance and they love books and to be read too.  Their favorite thing is

The Wiggles.  :-)  They seem to catch colds easy and keep them a little longer

than most, but we have been blessed with no major health issues.  I'm looking

forward to meeting everyone at the conference.

 

 

 

 

Subject: It's that time again. ROLL CALL!!

To: " IMDSA GROUP " <MosaicDS >

Date: Tuesday, January 4, 2011, 1:41 PM

 

ROLL CALL

If, you haven't met or talked to me yet. My name is Casey Morton, I am the

self-advocate of the IMDSA. was your newsletter editor, and now your family

connect coordinator, I also have Mosaic Down Syndrome. I have a son along with

me; his name is Ronin and is 3 1/2 all and boy. I have been working with, and

for the IMDSA board and families for a good 2 years now. And have done

multi-media video blogs with life lessons to all on face-book, and now through

the new IMDSA Website; www.imdsa.org I have talked to families through-out the

world, reaching out to as many people as I possibly to let them, and you know;

" You are Not Alone! " I saw you at the last conference, and I'll see you again in

Orlando!

Keep it coming, let your presence be known and tell us who you are and what

you've been doing, and what's going on in a paragraph.

It's show and tell time everyone.

Casey Morton: ----------------------------------

IMDSA Self-Advocate/Spokesman www.imdsa.org

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