Re: Roll Call!

[Guest guest]

Hi All,

I'm Rowe (or Becky) I'm in Fairfield, Virginia and Mom to Austin (5 MDS)

and Trey (7 ADHD). I'm currently in divorce proceedings, should be finalized

real soon. I'm a full time College student studying General Pharmacology (at

least this spring Term), next fall I will be applying to an LPN (or LVN

depending on where you are) program thru my local hospital and then later will

complete studies for my RN.

Trey is in 2nd Grade and will be 8 on Feb. 10 and Austin is in the Head-Start

program (first year). Austin loves it and has made a lot of new friends and his

teacher has been teaching them all sign language so that they can communicate

with Austin. Austin is Non-Verbal but I swear last night he came up to me and

said " I'm Hungry " .....he hasn't said it again...

I found out about IMDSA accidently as I was doing a research paper last spring

for my English class. After seeing so many kids looking just like Austin I had

to know more. I did, joined IMDSA, became a board member (Public Relations

Officer) for a short time (then school started and I had 15 credits!) and had

Austin tested at the Conference in Richmond and it came back to an accuracy of

96.4% MDS. Austin's Ped. has said he's heard of it, but Austin is his first

patient with it.

I'm also proud to say that I'm a Birth Mom, and I have a 16 y.o. son living in

Southern California (Judy I'm coming your way in the summer!) who is eager to

meet me, an extra Christmas present this year!

Hope you all have a Blessed and Prosperous 2008 (Trey is so confused at this

idea, he still thinks that when the sun comes up it's a new day, not at

Mid-night LOL)

God Bless,

Rowe

www.myspace.com/beckyrowe5150

Roll Call!

Happy New Year Everyone! I hope all of you have a wonderful, safe and prosperous

2008!

Let's start the New Year out right! We have over 500 families on our group and I

realize most are lurkers. In this past year, we have received so many new

families that it is hard for everyone to know who is who!

So...I invite you to join me in telling everyone about yourself and your family.

RE-introduce yourself to the group so everyone knows who you are!

I will start...

I am Kristy Colvin. I live in Texas and am about to celebrate my 13th wedding

anniversary with my wonderful husband, Glenn. I have 3 sons and 2 step-sons. (My

sons) Arron 26, Tim 21 (MDS) and Garrett 11 and (my step-sons) 22 and

Stevan 21. Arron lives on his own and has my 4 beautiful grandsons, (Arron,

Aidan, " Spot " and Garrett). is in the Army and now stationed in Arizona

and Stevan is in the Navy and is stationed in Baghdad. Tim and Garrett stay home

with me. Tim is about to begin job hunting as he has taken a break since

graduating in 2005. Garrett is in 6th grade. (I know...it confuses me sometimes

too! lol) Glenn is a truck driver and is gone most the time and I work full time

(as a volunteer) for IMDSA. I co-founded IMDSA in 2001 and it has been a

wonderful outlet for me as Tim was growing in his teen years and I was

desperately searching for information on mosaic Down syndrome. After many

questions and talking to countless families

and professionals,

I now probably know more about MDS than any person in the world! LOL But, now

that I know all that I do, I am able to help all the wonderful families like

you!

So...that is me....tell me about you!

Kristy

[Guest guest]

Hello from Oklahoma! I am Leslee, mom to two girls, Darby (7) and Drew (3 mds)

and have been married to my husband Kye for 9 years. I have been a stay at home

mom and a professional volunteer since my first daughter was born. Before her,

I taught French to Junior High Students. I absolutely LOVED teaching which

prepared me for the birth of Drew. She has been the biggest blessing ever. We

are blessed with her health and happiness. She is attending preschool at the

University of Oklahoma which is called the Institute of Child Development. The

ration is 2:1, inclusive and she is doing awesome! Her speech is developing

rapidly at this point. She has just started putting her hands on her hips,

stopping one foot, saying " I want a snack/popsicle/milk! " She has become quite

bossy but I love every minute of it. I enjoy facilitating our local DS support

group and being my oldest daughter's Brownie troop leader, and PTA secretary! I

truly enjoy reading everyone's post and I am glad to be a member of this support

group. Happy New year everyone!

Roll Call!

Happy New Year Everyone! I hope all of you have a wonderful, safe and

prosperous 2008!

Let's start the New Year out right! We have over 500 families on our group and

I realize most are lurkers. In this past year, we have received so many new

families that it is hard for everyone to know who is who!

So...I invite you to join me in telling everyone about yourself and your

family. RE-introduce yourself to the group so everyone knows who you are!

I will start...

I am Kristy Colvin. I live in Texas and am about to celebrate my 13th wedding

anniversary with my wonderful husband, Glenn. I have 3 sons and 2 step-sons. (My

sons) Arron 26, Tim 21 (MDS) and Garrett 11 and (my step-sons) 22 and

Stevan 21. Arron lives on his own and has my 4 beautiful grandsons, (Arron,

Aidan, " Spot " and Garrett). is in the Army and now stationed in Arizona

and Stevan is in the Navy and is stationed in Baghdad. Tim and Garrett stay home

with me. Tim is about to begin job hunting as he has taken a break since

graduating in 2005. Garrett is in 6th grade. (I know...it confuses me sometimes

too! lol) Glenn is a truck driver and is gone most the time and I work full time

(as a volunteer) for IMDSA. I co-founded IMDSA in 2001 and it has been a

wonderful outlet for me as Tim was growing in his teen years and I was

desperately searching for information on mosaic Down syndrome. After many

questions and talking to countless families and professionals,

I now probably know more about MDS than any person in the world! LOL But, now

that I know all that I do, I am able to help all the wonderful families like

you!

So...that is me....tell me about you!

Kristy

[Guest guest]

Happy New Year everyone. I pray God will bless each of us for the new year of

2008. I am Sue and I have been married for almost 5 years. Wow how time flies

when you are having fun! lol. I got married late in life at the age of 41. I

had two miscarraiges before I was blessed with my Isabella (1 mds and triple x)

I am now 45 almost 46 and I need to find someway to bottle Isabella's energy so

I can keep up. No I did not have an amnio as doctors sugested when I was

pregnant and boy am I glad I didn't. I think they would have scared me and

tried to talk me into terminating the pregnancy since she has two conditions

that are so rare. My husband and I both knew even if our child had problems,

flaws or issues we were going to love her and them, after all who among us does

not have some issues. We knew that no matter what she was going to be perfect to

us and she is! I did not find out Isabella had MDS or XXX until she was 9 1/2

months old, it was only a fluke that we found out. So

far Isabella has met her milestones and is flurishing. It was a real shock at

first. I felt like someone had played a very cruel joke on me. I had just lost

my brother, who was my rock and my parents are gone also. My husband and I were

both dealing with this in different ways and neither of us could understand the

other one. Now we both are still not on the same page but at least we understand

why each of us reacted the way we did. I felt like all of my dreams and hopes

for her had been lost. I have come to realize they were my dreams and my hopes

not hers, she will have her own. We feel so very bless to have her in our

lives. I am very glad I found this support group because it has given so much

to me in the way of understanding her needs and not judging me for mine.

Sue (Isabella's Mom)

-------------- Original message --------------

Happy New Year Everyone! I hope all of you have a wonderful, safe and prosperous

2008!

Let's start the New Year out right! We have over 500 families on our group and I

realize most are lurkers. In this past year, we have received so many new

families that it is hard for everyone to know who is who!

So...I invite you to join me in telling everyone about yourself and your family.

RE-introduce yourself to the group so everyone knows who you are!

I will start...

I am Kristy Colvin. I live in Texas and am about to celebrate my 13th wedding

anniversary with my wonderful husband, Glenn. I have 3 sons and 2 step-sons. (My

sons) Arron 26, Tim 21 (MDS) and Garrett 11 and (my step-sons) 22 and

Stevan 21. Arron lives on his own and has my 4 beautiful grandsons, (Arron,

Aidan, " Spot " and Garrett). is in the Army and now stationed in Arizona

and Stevan is in the Navy and is stationed in Baghdad. Tim and Garrett stay home

with me. Tim is about to begin job hunting as he has taken a break since

graduating in 2005. Garrett is in 6th grade. (I know...it confuses me sometimes

too! lol) Glenn is a truck driver and is gone most the time and I work full time

(as a volunteer) for IMDSA. I co-founded IMDSA in 2001 and it has been a

wonderful outlet for me as Tim was growing in his teen years and I was

desperately searching for information on mosaic Down syndrome. After many

questions and talking to countless families and professionals,

I now probably know more about MDS than any person in the world! LOL But, now

that I know all that I do, I am able to help all the wonderful families like

you!

So...that is me....tell me about you!

Kristy

[Guest guest]

Greetings and Happy New Year from the great Republic of Texas!! I am Irene

Gunnels, wife of 17 years to Mike and mom to the Gaggle of Gunnels!! iel

13, MDS, Luke 11, Emilia 8, Lillian 6, Isaac, (Ike the Dude!), and Agnes 11mo.

We are transplants to Texas, originally from the frozen tundra of Illinois,

(according to all of these thin blooded Texans!!) We are actually here

partailly due to the conference in 2005, which was held here in Houston. My

husband was offered a job down here, and since we had somewhat of an idea what

Houston was like, we decided to move.

In my former life, I was an ER RN, of which was a lot less exciting than my life

now!!! LOL!! I had the ability to restrain combative patients and call

security to help me with the unruly patients!!! LOL!!! Let me tell you, it is

a wild ride each day over here!! I would not trade it for anything in the

world!

We found out about iel's dx when he was 3.5yrs old. We thought something

was wrong for about 2 years previous, but no MD took us seriously, even after

his bowel obstruction, which was similar to malrotation, and iel's lack of

developmental milestone progression.

Nat started in EI, and went through the 1st semester of kindergarten. But, due

to the lack of proper attention to iel's needs and encouragement from

friends and teachers, we began to homeschool. This was a great choice for our

family, and are begining our 7th year this week of homeschooling.

Nat is a tall, lanky 13 yo who loves NASCAR, music, football and anything greasy

that he can eat!! He is an avid reader and finally understands the concept of

multiplication!! He is also involved in our church choir and will soon become

an altar server. All of his siblings bring iel much joy, especially his

baby sister, Agney. He gives so completly and without any selfishness. Nat is a

simple guy that teaches us how to enjoy simple things of life.

Thanks for letting me share!

Irene

[Guest guest]

My name is Lindsey. My mom told me that I have diagonsed with MDS sometime

after I was born sometime when I was in middle school. I had a hard time

understanding what it is since I have a hard time understanding science terms.

Before my mom told me about my diagonsis I knew I was different from everyone

else for several reasons. One, I was one of the slowest kids in my gym class

and I was pulled aside from my gym class once a week to see a physical

therapist. Two, I wasn't the best speaker in the world since I had hard time

pronounciating words and I was seperated from my classmates during class time

to see a speech therapist. Third, in fifth grade I was diagonsed with a

cognitve disability, so I had to go to the special education room to take tests

and recieve additional help in classes. However, when I was rediagnosed in

eighth grade, it turned out that I was diagnosed wrong with a cognitive

disability but instead I had a learning disability.

I struggled with all three things and I realized the struggles of these things

more in middle school. To top up all these differences my mom added to the list

by telling me I had mds. She explained to me I must have some of these genes in

my brain or wherever else in my body. I don't know where all those genes are,

and they probably are affecting my learning, speaking, and physical functions.

Due to realizing these things I felt I was alone and different from everyone

else. I felt I was the only person in world struggling with this problem. My

mom told me I wasn't and that there are other people in the world with this

problem too. I had a hard time believing that since I was just a shy, lonely

teenager.

As a teenager, I didn't like being different from everybody else and I wanted to

be normal like the other teenagers who didn't have a genetic defect. I wanted

to be just like them and be equal to all of them but I wasn't. I suffered

because of it emotionally and noticed that my peers and friends didn't pay much

attention to me inside of school that often, but sometimes they did. I felt

they didn't pay attention to me because I had to recieve additional help. I was

ulitimately the minority in the school and I felt like a victim of the cliques

that exist in school. I pulled away from them and assumed they were not

interested in me, and cried that I didn't have a close friend I could be real

with. I desired to have a really close friend but I didn't so I became

depressed and had thoughts of sucidie, but I wasn't able to go through with it.

I wasn't able to go through with it because I knew I had a family who loved me

and it gave me a reason live.

My english teacher in eighth grade gave me a reason to live. She saw that I was

shy and lonely, and sought to help me out. She talked my speech therapist to

work on speaking with other kids and got me invovled on the forensic and

newspaper team. I enjoyed both teams, especially forensics. Forensics was a

chance for me to practice my speaking skills to perform in front of judges to

judge the presentation of the poem I recited. Through Forensics and speech

therapy I learned it was matter of controlling my speech pronounciations on my

own and practicing on them a lot allowed me to become a better speaker, which

allowed the people around me to understand me better. This movitated me to

overcome my problems and my teacher made all the difference in the world to help

me understand that I was a special and unique individual that deserves to be

loved. I am truly grateful and thankful for her helping me learn how to fly. I

started flying even more when

she gave an award to me for my hard work, determination, and putting 110% into

everything I did in school. I was truly thankful for her kindness and for

reaching out to me knowing that someone does care for me.

Also around that time period, my cousin brought me to worship gathering of

people singing songs of praises toward God, and people sharing their testomines.

I was touched by the songs and their testomines that I felt God at work in room.

In that moment I started believing in God and prayed that he would help me

through my troubles. He has done wonderful things for me to lessen my burdens

and there were several things he done for me. One, he turned my cognitive

disability into learning disability. Two, I didn't have to see a physical

therapist in high school. Three, I stopped seeing the speech therapist in my

sophmore year in high school, due to realizing I am the only person to control

and practice my speech patterns. I was truly grateful for this but I still had

to the special education room to take tests, which allowed me somewhat of normal

high school career. However, I still felt different from everybody else and

focused more on my studies and

forensics more than my friendship with the peers around me. On the days I was

down I turned to God and he truly helped me in my time of need.

Thanks to God I found a wonderful college, UW Oshkosh. UW Oshkosh has learning

disablity program called Project Success. Project Success makes sure that

students with special needs get all the help they need like tutoring,

note-takers, extended time on tests, and so much more. It has truly helped me

and if your teenager that has some sort of learning disability and thinking of

college, I would recommend checking UW Oshkosh Project Success program (here's

the link to the site, if anyone is interested: http://www.uwosh.edu/success/ ).

I like the program and the people in this program are friendly to work with.

Not only that, God has introduced me to get invovled with Campus Crusade for

Christ. It is a way great way to meet other people and everyone here is so

nice. I just got back from a Campus Crusade winter conference from Minneapolis,

Minnesota just yesterday. The conference was wonderful listening to people

talking about their faith in God and spreading the message of God's word. It

helped me grow in faith and helped me accept my disabilities. He has given me a

physical disability to walk for him.. He has given me a speaking disability to

speak for him. He has given me learning disability to learn about him. All

these brought me to know him personally and helped me grow in a strong

relationship with him, to help me realize I am loved by him and to overcome my

struggles. Furthermore, I know he created us all equally giving us all

different problems, weaknesses, and gifts to bring us to him to overcome any

trials in our life. Now I feel thankful

that God gave me mds, and the disabilities I have. They were my weaknesses,

and my weaknesses became strength because of what God says about our weaknesses:

" But he said to me, " My grace is sufficient for you, for my power

is made perfect in weakness. " Therefore I will boast all the more gladly

about my weaknesses, so that Christ's power may rest on me. 10That is why, for

Christ's sake, I delight in weaknesses, in insults, in

hardships, in persecutions, in difficulties. For when I am weak, then I am

strong. " (2 Corinthans 12:9-11 NIV)

I am truly grateful for the weaknesses that God has given me, because that

helped me grow to become the the woman I am today. I pray that you all will take

these words with you and remember them. May God be will you all.

Lindsey

Re: Roll Call!

Greetings and Happy New Year from the great Republic of Texas!! I am Irene

Gunnels, wife of 17 years to Mike and mom to the Gaggle of Gunnels!! iel

13, MDS, Luke 11, Emilia 8, Lillian 6, Isaac, (Ike the Dude!), and Agnes 11mo.

We are transplants to Texas, originally from the frozen tundra of Illinois,

(according to all of these thin blooded Texans!!) We are actually here partailly

due to the conference in 2005, which was held here in Houston. My husband was

offered a job down here, and since we had somewhat of an idea what Houston was

like, we decided to move.

In my former life, I was an ER RN, of which was a lot less exciting than my life

now!!! LOL!! I had the ability to restrain combative patients and call security

to help me with the unruly patients!!! LOL!!! Let me tell you, it is a wild ride

each day over here!! I would not trade it for anything in the world!

We found out about iel's dx when he was 3.5yrs old. We thought something

was wrong for about 2 years previous, but no MD took us seriously, even after

his bowel obstruction, which was similar to malrotation, and iel's lack of

developmental milestone progression.

Nat started in EI, and went through the 1st semester of kindergarten. But, due

to the lack of proper attention to iel's needs and encouragement from

friends and teachers, we began to homeschool. This was a great choice for our

family, and are begining our 7th year this week of homeschooling.

Nat is a tall, lanky 13 yo who loves NASCAR, music, football and anything greasy

that he can eat!! He is an avid reader and finally understands the concept of

multiplication! ! He is also involved in our church choir and will soon become

an altar server. All of his siblings bring iel much joy, especially his

baby sister, Agney. He gives so completly and without any selfishness. Nat is a

simple guy that teaches us how to enjoy simple things of life.

Thanks for letting me share!

Irene

[Guest guest]

Lindsey,

That is a very touching story. Right now both of my daughters are feeling some

of the things you had felt going through school. Shyanna, 11 with MDS is being

bullied quite a bit, being pulled out of classes for physical and speech

therapy, and can't seem to find any " real " friends. Shayla, 8 is now dealing

with kids picking on her because of a friend that she has. Her friend is

overweight and some kids think that's a reason to pick on someone. Shayla

considers her to be one of her best friends, therefore, the other kids pick on

Shayla too.

Where do you live? I assume you live in Oshgosh. We are in Cameron, it's in

the northwestern part of the state. I would love to meet you sometime if our

paths were to cross. You sound like you could be an inspiration to both of my

girls! I am also curious of your age.

Take care,

Bobbie

Re: Roll Call!

Greetings and Happy New Year from the great Republic of Texas!! I am Irene

Gunnels, wife of 17 years to Mike and mom to the Gaggle of Gunnels!! iel

13, MDS, Luke 11, Emilia 8, Lillian 6, Isaac, (Ike the Dude!), and Agnes 11mo.

We are transplants to Texas, originally from the frozen tundra of Illinois,

(according to all of these thin blooded Texans!!) We are actually here partailly

due to the conference in 2005, which was held here in Houston. My husband was

offered a job down here, and since we had somewhat of an idea what Houston was

like, we decided to move.

In my former life, I was an ER RN, of which was a lot less exciting than my

life now!!! LOL!! I had the ability to restrain combative patients and call

security to help me with the unruly patients!!! LOL!!! Let me tell you, it is a

wild ride each day over here!! I would not trade it for anything in the world!

We found out about iel's dx when he was 3.5yrs old. We thought something

was wrong for about 2 years previous, but no MD took us seriously, even after

his bowel obstruction, which was similar to malrotation, and iel's lack of

developmental milestone progression.

Nat started in EI, and went through the 1st semester of kindergarten. But, due

to the lack of proper attention to iel's needs and encouragement from

friends and teachers, we began to homeschool. This was a great choice for our

family, and are begining our 7th year this week of homeschooling.

Nat is a tall, lanky 13 yo who loves NASCAR, music, football and anything

greasy that he can eat!! He is an avid reader and finally understands the

concept of multiplication! ! He is also involved in our church choir and will

soon become an altar server. All of his siblings bring iel much joy,

especially his baby sister, Agney. He gives so completly and without any

selfishness. Nat is a simple guy that teaches us how to enjoy simple things of

life.

Thanks for letting me share!

Irene

[Guest guest]

I am Welch, and I live in Indiana with my wife, a, and my

two daughters Isabelle 3 (MDS) and Katelyn 1. I am an Engineering

Manager for a Equipment Manufacturer of large custom blower and

compressor. a is a Chemical Engineer by trade, but has taken the

harder of our two jobs and stays at home with our very active girls.

After 2006 when Isabelle was diagnoses with MDS at 2 1/2 we were not

only shocked, but immediately began seeking information, and was able to

find IMDSA and this group, which has been a blessing. In September I

joined IMDSA as the International Vice President, and have slowly been

working with some great people to build our Family Connect

Representative group worldwide to help support families with loved one

with MDS. My hope is that 2008 is a great year for the FCR program and

we can grow and help many families.

[Guest guest]

Hello - I am Darlene Benoit, I live in Eastern PA with my husband and

our children (11) and (8 with MDS) - was diagnosed in

June of 1999 when she was 4 months old. I have been a member of IMDSA since

is was just an e-list. We have been through GI problems (duodenal webbing

found at 3), thyroid issues ( has hypothyroid), heart issues (find out

at age 8 she had 3 holes in her heart). I went to the first IMDSA

conference in DC, planned to go to the second in TX but was unable to as I

got laid off 2 months prior and could not afford the trip - (my son was very

upset with me, he wanted to go to TX) - We went to the third IMDSA

conference in DC and plan to go to the fourth in 2009.

's pediatrician is wonderful and knows that when is sick, you

can't tell - so when she complains about something we take her seriously.

She has lived with more discomfort in her short life that I have known in my

40+ years. Through it all has gone from an adorable baby to a

wonderful little girl. She and her brother have been my pride and joy, and

the light of my life.

was nonverbal until at age 8 her speech has blossomed and except for

pronunciation issues she is quite chatty. If I don't understand her after

she has said it twice she say " Nothing " and gives up. is very lucky

and has a group of boys and girls who look out for her at school. I hope

these kids will grow with her and remain her friends throughout school.

I was a Computer Programmer, in Configuration Management before I was laid

off and now I want to go back to school - I only need a few courses to get a

degree in Teaching Mathematics. I got my emergency certification and am

substituting in the elementary school and LOVING it. I want to teach high

school mathematics eventually.

Darlene - Mom to (11) and (8 - who will be 9 on 2/8/08)

> I am Kim Fish. I live in Southern California with my husband (almost

> married 21 years). We have 11 children from the age of 19 down to

> twins that are almost 3. One of my twins has ds. We have found that

> many people with MDS have some of the same issues as DS, so I thought

> this board would be interesting to be apart of. We homeschool our

> children. Our oldest graduated a few years ago by writing a thesis

> about nutrition in ds ( http://www.gotdownsyndrome.net/

> rebuttal.html ) . We have a mini-ranch out here in the desert areas

> and raise several kinds of animals (bullmastiffs, goats, Dexter cows,

> bunnies, chickens). We have websites for all of these and really like

> having the animals around for practical purposes (protection, milk,

> meat & eggs). I also enjoy selling things on Ebay on the side and

> have actually used the Ebay selling process as a means to teach my

> children math & business skills. You can see most of our animal

> websites by going to our ds homepage and following the favorite links

> on the lower left ( http://www.gotdownsyndrome.net/ ).

> My daughter & I are in the process of writing a book about ds called

> Down Syndrome - What You CAN Do. We have set up a small website about

> it - http://www.gotdownsyndrome.net/Book/whatyoucandobook.html .

> Please click around on there and check it out. If anyone knows

> someone with ds that would like to be apart of our book please let us

> know.

>

> Thanks,

> Kim

>

>

>

>

> > Happy New Year Everyone! I hope all of you have a wonderful, safe

> > and prosperous 2008!

> >

> > Let's start the New Year out right! We have over 500 families on

> > our group and I realize most are lurkers. In this past year, we

> > have received so many new families that it is hard for everyone to

> > know who is who!

> >

> > So...I invite you to join me in telling everyone about yourself and

> > your family. RE-introduce yourself to the group so everyone knows

> > who you are!

> >

> > I will start...

> >

> > I am Kristy Colvin. I live in Texas and am about to celebrate my

> > 13th wedding anniversary with my wonderful husband, Glenn. I have 3

> > sons and 2 step-sons. (My sons) Arron 26, Tim 21 (MDS) and Garrett

> > 11 and (my step-sons) 22 and Stevan 21. Arron lives on his

> > own and has my 4 beautiful grandsons, (Arron, Aidan, " Spot " and

> > Garrett). is in the Army and now stationed in Arizona and

> > Stevan is in the Navy and is stationed in Baghdad. Tim and Garrett

> > stay home with me. Tim is about to begin job hunting as he has

> > taken a break since graduating in 2005. Garrett is in 6th grade. (I

> > know...it confuses me sometimes too! lol) Glenn is a truck driver

> > and is gone most the time and I work full time (as a volunteer) for

> > IMDSA. I co-founded IMDSA in 2001 and it has been a wonderful

> > outlet for me as Tim was growing in his teen years and I was

> > desperately searching for information on mosaic Down syndrome.

> > After many questions and talking to countless families and

> > professionals,

> > I now probably know more about MDS than any person in the world!

> > LOL But, now that I know all that I do, I am able to help all the

> > wonderful families like you!

> >

> > So...that is me....tell me about you!

> > Kristy

> >

> >

[Guest guest]

Ummmm, Darlene...Trey will be 8 on 2/10/08 funny how close his and 's

birthdays are LOL

Becky

God Bless,

Rowe

www.myspace.com/beckyrowe5150

Re: Roll Call!

Hello - I am Darlene Benoit, I live in Eastern PA with my husband and

our children (11) and (8 with MDS) - was diagnosed in

June of 1999 when she was 4 months old. I have been a member of IMDSA since

is was just an e-list. We have been through GI problems (duodenal webbing

found at 3), thyroid issues ( has hypothyroid) , heart issues (find out

at age 8 she had 3 holes in her heart). I went to the first IMDSA

conference in DC, planned to go to the second in TX but was unable to as I

got laid off 2 months prior and could not afford the trip - (my son was very

upset with me, he wanted to go to TX) - We went to the third IMDSA

conference in DC and plan to go to the fourth in 2009.

's pediatrician is wonderful and knows that when is sick, you

can't tell - so when she complains about something we take her seriously.

She has lived with more discomfort in her short life that I have known in my

40+ years. Through it all has gone from an adorable baby to a

wonderful little girl. She and her brother have been my pride and joy, and

the light of my life.

was nonverbal until at age 8 her speech has blossomed and except for

pronunciation issues she is quite chatty. If I don't understand her after

she has said it twice she say " Nothing " and gives up. is very lucky

and has a group of boys and girls who look out for her at school. I hope

these kids will grow with her and remain her friends throughout school.

I was a Computer Programmer, in Configuration Management before I was laid

off and now I want to go back to school - I only need a few courses to get a

degree in Teaching Mathematics. I got my emergency certification and am

substituting in the elementary school and LOVING it. I want to teach high

school mathematics eventually.

Darlene - Mom to (11) and (8 - who will be 9 on 2/8/08)

On Jan 4, 2008 10:06 AM, kimatruechurch (DOT) info <kimatruechurch (DOT) info> wrote:

> I am Kim Fish. I live in Southern California with my husband (almost

> married 21 years). We have 11 children from the age of 19 down to

> twins that are almost 3. One of my twins has ds. We have found that

> many people with MDS have some of the same issues as DS, so I thought

> this board would be interesting to be apart of. We homeschool our

> children. Our oldest graduated a few years ago by writing a thesis

> about nutrition in ds ( http://www.gotdowns yndrome.net/

> rebuttal.html ) . We have a mini-ranch out here in the desert areas

> and raise several kinds of animals (bullmastiffs, goats, Dexter cows,

> bunnies, chickens). We have websites for all of these and really like

> having the animals around for practical purposes (protection, milk,

> meat & eggs). I also enjoy selling things on Ebay on the side and

> have actually used the Ebay selling process as a means to teach my

> children math & business skills. You can see most of our animal

> websites by going to our ds homepage and following the favorite links

> on the lower left ( http://www.gotdowns yndrome.net/ ).

> My daughter & I are in the process of writing a book about ds called

> Down Syndrome - What You CAN Do. We have set up a small website about

> it - http://www.gotdowns yndrome.net/ Book/whatyoucand obook.html .

> Please click around on there and check it out. If anyone knows

> someone with ds that would like to be apart of our book please let us

> know.

>

> Thanks,

> Kim

>

>

>

>

> > Happy New Year Everyone! I hope all of you have a wonderful, safe

> > and prosperous 2008!

> >

> > Let's start the New Year out right! We have over 500 families on

> > our group and I realize most are lurkers. In this past year, we

> > have received so many new families that it is hard for everyone to

> > know who is who!

> >

> > So...I invite you to join me in telling everyone about yourself and

> > your family. RE-introduce yourself to the group so everyone knows

> > who you are!

> >

> > I will start...

> >

> > I am Kristy Colvin. I live in Texas and am about to celebrate my

> > 13th wedding anniversary with my wonderful husband, Glenn. I have 3

> > sons and 2 step-sons. (My sons) Arron 26, Tim 21 (MDS) and Garrett

> > 11 and (my step-sons) 22 and Stevan 21. Arron lives on his

> > own and has my 4 beautiful grandsons, (Arron, Aidan, " Spot " and

> > Garrett). is in the Army and now stationed in Arizona and

> > Stevan is in the Navy and is stationed in Baghdad. Tim and Garrett

> > stay home with me. Tim is about to begin job hunting as he has

> > taken a break since graduating in 2005. Garrett is in 6th grade. (I

> > know...it confuses me sometimes too! lol) Glenn is a truck driver

> > and is gone most the time and I work full time (as a volunteer) for

> > IMDSA. I co-founded IMDSA in 2001 and it has been a wonderful

> > outlet for me as Tim was growing in his teen years and I was

> > desperately searching for information on mosaic Down syndrome.

> > After many questions and talking to countless families and

> > professionals,

> > I now probably know more about MDS than any person in the world!

> > LOL But, now that I know all that I do, I am able to help all the

> > wonderful families like you!

> >

> > So...that is me....tell me about you!

> > Kristy

> >

> >

[Guest guest]

We'll be down towards the end of March! It will be here before we

know it!

Suzanne

> > >

> > > Happy New Year Everyone! I hope all of you have a wonderful,

safe

> > and prosperous 2008!

> > >

> > > Let's start the New Year out right! We have over 500 families

on

> > our group and I realize most are lurkers. In this past year, we

> have

> > received so many new families that it is hard for everyone to

know

> > who is who!

> > >

> > > So...I invite you to join me in telling everyone about yourself

> > and your family. RE-introduce yourself to the group so everyone

> knows

> > who you are!

> > >

> > > I will start...

> > >

> > > I am Kristy Colvin. I live in Texas and am about to celebrate

my

> > 13th wedding anniversary with my wonderful husband, Glenn. I have

3

> > sons and 2 step-sons. (My sons) Arron 26, Tim 21 (MDS) and

Garrett

> 11

> > and (my step-sons) 22 and Stevan 21. Arron lives on his

own

> > and has my 4 beautiful grandsons, (Arron, Aidan, " Spot " and

> Garrett).

> > is in the Army and now stationed in Arizona and Stevan is

in

> > the Navy and is stationed in Baghdad. Tim and Garrett stay home

> with

> > me. Tim is about to begin job hunting as he has taken a break

since

> > graduating in 2005. Garrett is in 6th grade. (I know...it

confuses

> me

> > sometimes too! lol) Glenn is a truck driver and is gone most the

> time

> > and I work full time (as a volunteer) for IMDSA. I co-founded

IMDSA

> > in 2001 and it has been a wonderful outlet for me as Tim was

> growing

> > in his teen years and I was desperately searching for information

> on

> > mosaic Down syndrome. After many questions and talking to

countless

> > families and professionals,

> > > I now probably know more about MDS than any person in the

world!

> > LOL But, now that I know all that I do, I am able to help all the

> > wonderful families like you!

> > >

> > > So...that is me....tell me about you!

> > > Kristy

> > >

> > >

> > >

[Guest guest]

I've been away on holidays for a few weeks (sunning myself at the beach) so

sorry for my late response to the Roll Call.

My name is Fiona Price, I am 29 years old and have been married to my wonderful

husband Lee for 1 whole glorious year ) (we have been together for 9 years).

We live in Melbourne, Australia and are currently building our dream home down

in Torquay (which is about an hour out of Melbourne on the coast). For those of

you familar with the movie Point Break, we will be living at Bells Beach. )

We welcomed our first child Hunter in October 2007 and were informed immediately

after his birth of the DS but had to wait a week for the blood tests to come

back, which then confirmed he had MDS. He is 12 weeks old and thriving at the

moment. No health issues as yet which has been great as it has let us adjust to

the MDS without having to worry about anything else as well. He is smiling and

talking heaps (babbling) at the moment and seems to crack himself up everytime

he sneezes, which is halarious and oh so cute. I'm enjoying being a mum alot

more than I thought I would and I'm getting in heaps of cuddles and kisses.

My husband Lee works at a wine company that distributes wine throughout

and Tasmania (great as we get loads of free wine) and before we had Hunter I was

working as a Sales Rep for Hawaiian Airlines.

The IMDSA has been great for me so far and I love reading everyones blogs even

if I don't respond. I've learnt so much already.

For those of you who are enjoying the snow, I'm sweating in the heat down here

at the moment. 42 degrees C in Melbourne today and tomorrow which is 108 F.

Fiona

Mum to Hunter mds 12 weeks

From: Kristy Colvin

Sent: Tuesday, January 01, 2008 4:12 PM

Happy New Year Everyone! I hope all of you have a wonderful, safe and

prosperous 2008!

Let's start the New Year out right! We have over 500 families on our group and

I realize most are lurkers. In this past year, we have received so many new

families that it is hard for everyone to know who is who!

So...I invite you to join me in telling everyone about yourself and your

family. RE-introduce yourself to the group so everyone knows who you are!

I will start...

I am Kristy Colvin. I live in Texas and am about to celebrate my 13th wedding

anniversary with my wonderful husband, Glenn. I have 3 sons and 2 step-sons. (My

sons) Arron 26, Tim 21 (MDS) and Garrett 11 and (my step-sons) 22 and

Stevan 21. Arron lives on his own and has my 4 beautiful grandsons, (Arron,

Aidan, " Spot " and Garrett). is in the Army and now stationed in Arizona

and Stevan is in the Navy and is stationed in Baghdad. Tim and Garrett stay home

with me. Tim is about to begin job hunting as he has taken a break since

graduating in 2005. Garrett is in 6th grade. (I know...it confuses me sometimes

too! lol) Glenn is a truck driver and is gone most the time and I work full time

(as a volunteer) for IMDSA. I co-founded IMDSA in 2001 and it has been a

wonderful outlet for me as Tim was growing in his teen years and I was

desperately searching for information on mosaic Down syndrome. After many

questions and talking to countless families and professionals,

I now probably know more about MDS than any person in the world! LOL But, now

that I know all that I do, I am able to help all the wonderful families like

you!

So...that is me....tell me about you!

Kristy

[Guest guest]

Hi Fiona & Lee,

Oh what fun you Aussies have with us Americans! Those of us who don't have snow,

we were sweating yesterday as it would seem that the Eastern Seaboard is having

a heat wave in January....Almost 70 F here in Virginia and from what I

understand it is supposed to start getting colder this weekend!

God Bless,

Becky (Mom to Austin 5, MDS & Trey 7, ADHD)

Re: Roll Call!

I've been away on holidays for a few weeks (sunning myself at the beach) so

sorry for my late response to the Roll Call.

My name is Fiona Price, I am 29 years old and have been married to my wonderful

husband Lee for 1 whole glorious year ) (we have been together for 9 years).

We live in Melbourne, Australia and are currently building our dream home down

in Torquay (which is about an hour out of Melbourne on the coast). For those of

you familar with the movie Point Break, we will be living at Bells Beach. )

We welcomed our first child Hunter in October 2007 and were informed immediately

after his birth of the DS but had to wait a week for the blood tests to come

back, which then confirmed he had MDS. He is 12 weeks old and thriving at the

moment. No health issues as yet which has been great as it has let us adjust to

the MDS without having to worry about anything else as well. He is smiling and

talking heaps (babbling) at the moment and seems to crack himself up everytime

he sneezes, which is halarious and oh so cute. I'm enjoying being a mum alot

more than I thought I would and I'm getting in heaps of cuddles and kisses.

My husband Lee works at a wine company that distributes wine throughout

and Tasmania (great as we get loads of free wine) and before we had Hunter I was

working as a Sales Rep for Hawaiian Airlines.

The IMDSA has been great for me so far and I love reading everyones blogs even

if I don't respond. I've learnt so much already.

For those of you who are enjoying the snow, I'm sweating in the heat down here

at the moment. 42 degrees C in Melbourne today and tomorrow which is 108 F.

Fiona

Mum to Hunter mds 12 weeks

From: Kristy Colvin

Sent: Tuesday, January 01, 2008 4:12 PM

Happy New Year Everyone! I hope all of you have a wonderful, safe and prosperous

2008!

Let's start the New Year out right! We have over 500 families on our group and I

realize most are lurkers. In this past year, we have received so many new

families that it is hard for everyone to know who is who!

So...I invite you to join me in telling everyone about yourself and your family.

RE-introduce yourself to the group so everyone knows who you are!

I will start...

I am Kristy Colvin. I live in Texas and am about to celebrate my 13th wedding

anniversary with my wonderful husband, Glenn. I have 3 sons and 2 step-sons. (My

sons) Arron 26, Tim 21 (MDS) and Garrett 11 and (my step-sons) 22 and

Stevan 21. Arron lives on his own and has my 4 beautiful grandsons, (Arron,

Aidan, " Spot " and Garrett). is in the Army and now stationed in Arizona

and Stevan is in the Navy and is stationed in Baghdad. Tim and Garrett stay home

with me. Tim is about to begin job hunting as he has taken a break since

graduating in 2005. Garrett is in 6th grade. (I know...it confuses me sometimes

too! lol) Glenn is a truck driver and is gone most the time and I work full time

(as a volunteer) for IMDSA. I co-founded IMDSA in 2001 and it has been a

wonderful outlet for me as Tim was growing in his teen years and I was

desperately searching for information on mosaic Down syndrome. After many

questions and talking to countless families

and professionals,

I now probably know more about MDS than any person in the world! LOL But, now

that I know all that I do, I am able to help all the wonderful families like

you!

So...that is me....tell me about you!

Kristy

[Guest guest]

A white Christmas is beautiful Fiona. Here is northwest Indiana, we had a snow

storm about 10 days before Christmas. All of the snow melted before Christmas

and then we had another snow storm on New Years Eve. Now it has all melted

again and it has been raining. All that snow and we still didn't have a White

Christmas. lol

Donna - Adam's gram

Fiona & Lee Price wrote:

Hi Becky

I would love to get snow here in the winter. Always wanted a white Christmas ;o)

Fiona

mum to Hunter mds 12weeks

Re: Roll Call!

I've been away on holidays for a few weeks (sunning myself at the beach) so

sorry for my late response to the Roll Call.

My name is Fiona Price, I am 29 years old and have been married to my wonderful

husband Lee for 1 whole glorious year ) (we have been together for 9 years).

We live in Melbourne, Australia and are currently building our dream home down

in Torquay (which is about an hour out of Melbourne on the coast). For those of

you familar with the movie Point Break, we will be living at Bells Beach. )

We welcomed our first child Hunter in October 2007 and were informed immediately

after his birth of the DS but had to wait a week for the blood tests to come

back, which then confirmed he had MDS. He is 12 weeks old and thriving at the

moment. No health issues as yet which has been great as it has let us adjust to

the MDS without having to worry about anything else as well. He is smiling and

talking heaps (babbling) at the moment and seems to crack himself up everytime

he sneezes, which is halarious and oh so cute. I'm enjoying being a mum alot

more than I thought I would and I'm getting in heaps of cuddles and kisses.

My husband Lee works at a wine company that distributes wine throughout

and Tasmania (great as we get loads of free wine) and before we had Hunter I was

working as a Sales Rep for Hawaiian Airlines.

The IMDSA has been great for me so far and I love reading everyones blogs even

if I don't respond. I've learnt so much already.

For those of you who are enjoying the snow, I'm sweating in the heat down here

at the moment. 42 degrees C in Melbourne today and tomorrow which is 108 F.

Fiona

Mum to Hunter mds 12 weeks

From: Kristy Colvin

Sent: Tuesday, January 01, 2008 4:12 PM

Happy New Year Everyone! I hope all of you have a wonderful, safe and prosperous

2008!

Let's start the New Year out right! We have over 500 families on our group and I

realize most are lurkers. In this past year, we have received so many new

families that it is hard for everyone to know who is who!

So...I invite you to join me in telling everyone about yourself and your family.

RE-introduce yourself to the group so everyone knows who you are!

I will start...

I am Kristy Colvin. I live in Texas and am about to celebrate my 13th wedding

anniversary with my wonderful husband, Glenn. I have 3 sons and 2 step-sons. (My

sons) Arron 26, Tim 21 (MDS) and Garrett 11 and (my step-sons) 22 and

Stevan 21. Arron lives on his own and has my 4 beautiful grandsons, (Arron,

Aidan, " Spot " and Garrett). is in the Army and now stationed in Arizona

and Stevan is in the Navy and is stationed in Baghdad. Tim and Garrett stay home

with me. Tim is about to begin job hunting as he has taken a break since

graduating in 2005. Garrett is in 6th grade. (I know...it confuses me sometimes

too! lol) Glenn is a truck driver and is gone most the time and I work full time

(as a volunteer) for IMDSA. I co-founded IMDSA in 2001 and it has been a

wonderful outlet for me as Tim was growing in his teen years and I was

desperately searching for information on mosaic Down syndrome. After many

questions and talking to countless families

and professionals,

I now probably know more about MDS than any person in the world! LOL But, now

that I know all that I do, I am able to help all the wonderful families like

you!

So...that is me....tell me about you!

Kristy

[Guest guest]

Wow a snow storm. I can only dream. )

Re: Roll Call!

I've been away on holidays for a few weeks (sunning myself at the beach) so

sorry for my late response to the Roll Call.

My name is Fiona Price, I am 29 years old and have been married to my

wonderful husband Lee for 1 whole glorious year ) (we have been together for 9

years). We live in Melbourne, Australia and are currently building our dream

home down in Torquay (which is about an hour out of Melbourne on the coast). For

those of you familar with the movie Point Break, we will be living at Bells

Beach. )

We welcomed our first child Hunter in October 2007 and were informed

immediately after his birth of the DS but had to wait a week for the blood tests

to come back, which then confirmed he had MDS. He is 12 weeks old and thriving

at the moment. No health issues as yet which has been great as it has let us

adjust to the MDS without having to worry about anything else as well. He is

smiling and talking heaps (babbling) at the moment and seems to crack himself up

everytime he sneezes, which is halarious and oh so cute. I'm enjoying being a

mum alot more than I thought I would and I'm getting in heaps of cuddles and

kisses.

My husband Lee works at a wine company that distributes wine throughout

and Tasmania (great as we get loads of free wine) and before we had

Hunter I was working as a Sales Rep for Hawaiian Airlines.

The IMDSA has been great for me so far and I love reading everyones blogs even

if I don't respond. I've learnt so much already.

For those of you who are enjoying the snow, I'm sweating in the heat down here

at the moment. 42 degrees C in Melbourne today and tomorrow which is 108 F.

Fiona

Mum to Hunter mds 12 weeks

From: Kristy Colvin

Sent: Tuesday, January 01, 2008 4:12 PM

Happy New Year Everyone! I hope all of you have a wonderful, safe and

prosperous 2008!

Let's start the New Year out right! We have over 500 families on our group and

I realize most are lurkers. In this past year, we have received so many new

families that it is hard for everyone to know who is who!

So...I invite you to join me in telling everyone about yourself and your

family. RE-introduce yourself to the group so everyone knows who you are!

I will start...

I am Kristy Colvin. I live in Texas and am about to celebrate my 13th wedding

anniversary with my wonderful husband, Glenn. I have 3 sons and 2 step-sons. (My

sons) Arron 26, Tim 21 (MDS) and Garrett 11 and (my step-sons) 22 and

Stevan 21. Arron lives on his own and has my 4 beautiful grandsons, (Arron,

Aidan, " Spot " and Garrett). is in the Army and now stationed in Arizona

and Stevan is in the Navy and is stationed in Baghdad. Tim and Garrett stay home

with me. Tim is about to begin job hunting as he has taken a break since

graduating in 2005. Garrett is in 6th grade. (I know...it confuses me sometimes

too! lol) Glenn is a truck driver and is gone most the time and I work full time

(as a volunteer) for IMDSA. I co-founded IMDSA in 2001 and it has been a

wonderful outlet for me as Tim was growing in his teen years and I was

desperately searching for information on mosaic Down syndrome. After many

questions and talking to countless families

and professionals,

I now probably know more about MDS than any person in the world! LOL But, now

that I know all that I do, I am able to help all the wonderful families like

you!

So...that is me....tell me about you!

Kristy

[Guest guest]

Hope your boys got their snow Becky

Re: Roll Call!

I've been away on holidays for a few weeks (sunning myself at the beach) so

sorry for my late response to the Roll Call.

My name is Fiona Price, I am 29 years old and have been married to my

wonderful husband Lee for 1 whole glorious year ) (we have been together for 9

years). We live in Melbourne, Australia and are currently building our dream

home down in Torquay (which is about an hour out of Melbourne on the coast). For

those of you familar with the movie Point Break, we will be living at Bells

Beach. )

We welcomed our first child Hunter in October 2007 and were informed

immediately after his birth of the DS but had to wait a week for the blood tests

to come back, which then confirmed he had MDS. He is 12 weeks old and thriving

at the moment. No health issues as yet which has been great as it has let us

adjust to the MDS without having to worry about anything else as well. He is

smiling and talking heaps (babbling) at the moment and seems to crack himself up

everytime he sneezes, which is halarious and oh so cute. I'm enjoying being a

mum alot more than I thought I would and I'm getting in heaps of cuddles and

kisses.

My husband Lee works at a wine company that distributes wine throughout

and Tasmania (great as we get loads of free wine) and before we had

Hunter I was working as a Sales Rep for Hawaiian Airlines.

The IMDSA has been great for me so far and I love reading everyones blogs even

if I don't respond. I've learnt so much already.

For those of you who are enjoying the snow, I'm sweating in the heat down here

at the moment. 42 degrees C in Melbourne today and tomorrow which is 108 F.

Fiona

Mum to Hunter mds 12 weeks

From: Kristy Colvin

Sent: Tuesday, January 01, 2008 4:12 PM

Happy New Year Everyone! I hope all of you have a wonderful, safe and

prosperous 2008!

Let's start the New Year out right! We have over 500 families on our group and

I realize most are lurkers. In this past year, we have received so many new

families that it is hard for everyone to know who is who!

So...I invite you to join me in telling everyone about yourself and your

family. RE-introduce yourself to the group so everyone knows who you are!

I will start...

I am Kristy Colvin. I live in Texas and am about to celebrate my 13th wedding

anniversary with my wonderful husband, Glenn. I have 3 sons and 2 step-sons. (My

sons) Arron 26, Tim 21 (MDS) and Garrett 11 and (my step-sons) 22 and

Stevan 21. Arron lives on his own and has my 4 beautiful grandsons, (Arron,

Aidan, " Spot " and Garrett). is in the Army and now stationed in Arizona

and Stevan is in the Navy and is stationed in Baghdad. Tim and Garrett stay home

with me. Tim is about to begin job hunting as he has taken a break since

graduating in 2005. Garrett is in 6th grade. (I know...it confuses me sometimes

too! lol) Glenn is a truck driver and is gone most the time and I work full time

(as a volunteer) for IMDSA. I co-founded IMDSA in 2001 and it has been a

wonderful outlet for me as Tim was growing in his teen years and I was

desperately searching for information on mosaic Down syndrome. After many

questions and talking to countless families

and professionals,

I now probably know more about MDS than any person in the world! LOL But, now

that I know all that I do, I am able to help all the wonderful families like

you!

So...that is me....tell me about you!

Kristy

[Guest guest]

It is annoying. LOL It makes us wonder if you are questioning every statement

you make! LOL If I were you, I would ask AOL what their problem is!

Kristy (?????????????)

Mommy706@... wrote:

Also, if anyone can tell me why my aol account continues to put a

question mark after each sentence, I greatly appreciate it.? It don't do it when

I type it, only when I open what I send.? How annoying is

that????????????????????/

Re: Roll Call!

Hello all:

I haven't reintroduced myself, I'm Beets, Knoxville, Tennessee!? Jerry and

I have been married for 16 years.? We have two children Karlee,?4/27/99, (8) mds

and Eli (3) 4/30/04, all boy!? Karlee?is wonderful typical 8 year old!? She

reminds me continuously of my " safety violations " in the car!? Grrrr!? Now, Eli

has picked up on it, so I'm not sure when I'm going to pull over?and throw them

out of the car, but it could be soon!? LOL - No, seriously... I adore both of

them in many ways.? Karlee is probably my best friend.? I?constantly forget she

has mosaic down syndrome.? She controls it, it doesn't seem to control her.? She

has lots of hobbies and activities.? She loves reading (at?grade level!? YEAH!),

horseback riding, American Girl Dolls, Hannah Montana, Kenny Chesney, she takes

voice lessons, she?cheers, tumbling and wants to?marry Troy Bolton from High

School Musical!? I'm sure I've left alot out, but that's?pretty much?it for?

little Karlee Marlee at this?point!?

She hates math, like her mom!? We are better at socialization:)???? She wants a

baby sister so instead she dresses Eli up in Cinderella and introduces him as

her baby sister.? My husband passes out everytime, but Eli's okay with if for

now.? As long as no other boys are in the house.? I keep telling Karlee to enjoy

it while it lasts, he's only doing this for a short time.?

I may or may not have talked with some of you.? I'm a parent contact for imdsa.?

I was devastated with the news of mds, 7 days after her birth.? I don't?ever

want?new parents to not?have another mds parent to talk?with, it seems early on

that's important.? Thanks?to Kristy Colvin and others,?IMDSA?has?made that

possible.??

I hope you all have a great 2008!

Beets, Knoxville, TN

__________________________________________________________

More new features than ever. Check out the new AOL Mail ! -

http://webmail.aol.com

[Guest guest]

________________________________________________________________________

More new features than ever. Check out the new AOL Mail ! -

http://webmail.aol.com

[Guest guest]

Hi ,

My emails were doing the same thing with the question mark.? I think I was

driving Kristy crazy also LOL.? I went into settings and changed things in

there.? Of course I can't remember what I did.?

Jeanne

Re: Roll Call!

Hello all:

I haven't reintroduced myself, I'm Beets, Knoxville, Tennessee!? Jerry and

I have been married for 16 years.? We have two children Karlee,?4/27/99, (8) mds

and Eli (3) 4/30/04, all boy!? Karlee?is wonderful typical 8 year old!? She

reminds me continuously of my " safety violations " in the car!? Grrrr!? Now, Eli

has picked up on it, so I'm not sure when I'm going to pull over?and throw them

out of the car, but it could be soon!? LOL - No, seriously... I adore both of

them in many ways.? Karlee is probably my best friend.? I?constantly forget she

has mosaic down syndrome.? She controls it, it doesn't seem to control her.? She

has lots of hobbies and activities.? She loves reading (at?grade level!? YEAH!),

horseback riding, American Girl Dolls, Hannah Montana, Kenny Chesney, she takes

voice lessons, she?cheers, tumbling and wants to?marry Troy Bolton from High

School Musical!? I'm sure I've left alot out, but that's?pretty much?it for?

little Karlee Marlee at this?point!? She hates math, like her mom!? We are

better at socialization:)???? She wants a baby sister so instead she dresses Eli

up in Cinderella and introduces him as her baby sister.? My husband passes out

everytime, but Eli's okay with if for now.? As long as no other boys are in the

house.? I keep telling Karlee to enjoy it while it lasts, he's only doing this

for a short time.?

I may or may not have talked with some of you.? I'm a parent contact for imdsa.?

I was devastated with the news of mds, 7 days after her birth.? I don't?ever

want?new parents to not?have another mds parent to talk?with, it seems early on

that's important.? Thanks?to Kristy Colvin and others,?IMDSA?has?made that

possible.??

I hope you all have a great 2008!

Beets, Knoxville, TN

__________________________________________________________

More new features than ever. Check out the new AOL Mail ! -

http://webmail.aol.com

[Guest guest]

Just a test to see if it is still doing it.

Re: Roll Call!

Hello all:

I haven't reintroduced myself, I'm Beets, Knoxville, Tennessee!? Jerry and

I have been married for 16 years.? We have two children Karlee,?4/27/99, (8) mds

and Eli (3) 4/30/04, all boy!? Karlee?is wonderful typical 8 year old!? She

reminds me continuously of my " safety violations " in the car!? Grrrr!? Now, Eli

has picked up on it, so I'm not sure when I'm going to pull over?and throw them

out of the car, but it could be soon!? LOL - No, seriously... I adore both of

them in many ways.? Karlee is probably my best friend.? I?constantly forget she

has mosaic down syndrome.? She controls it, it doesn't seem to control her.? She

has lots of hobbies and activities.? She loves reading (at?grade level!? YEAH!),

horseback riding, American Girl Dolls, Hannah Montana, Kenny Chesney, she takes

voice lessons, she?cheers, tumbling and wants to?marry Troy Bolton from High

School Musical!? I'm sure I've left alot out, but that's?pretty much?it for?

little Karlee Marlee at this?point!? She hates math, like her mom!? We are

better at socialization:)???? She wants a baby sister so instead she dresses Eli

up in Cinderella and introduces him as her baby sister.? My husband passes out

everytime, but Eli's okay with if for now.? As long as no other boys are in the

house.? I keep telling Karlee to enjoy it while it lasts, he's only doing this

for a short time.?

I may or may not have talked with some of you.? I'm a parent contact for imdsa.?

I was devastated with the news of mds, 7 days after her birth.? I don't?ever

want?new parents to not?have another mds parent to talk?with, it seems early on

that's important.? Thanks?to Kristy Colvin and others,?IMDSA?has?made that

possible.??

I hope you all have a great 2008!

Beets, Knoxville, TN

__________________________________________________________

More new features than ever. Check out the new AOL Mail ! -

http://webmail.aol.com

[Guest guest]

Hey Becky

Donna sent me photo's of her back yard covered in snow. It was soooo beautiful.

Just like the movies ;o)

Fiona

Re: Roll Call!

I've been away on holidays for a few weeks (sunning myself at the beach) so

sorry for my late response to the Roll Call.

My name is Fiona Price, I am 29 years old and have been married to my

wonderful husband Lee for 1 whole glorious year ) (we have been together for 9

years). We live in Melbourne, Australia and are currently building our dream

home down in Torquay (which is about an hour out of Melbourne on the coast). For

those of you familar with the movie Point Break, we will be living at Bells

Beach. )

We welcomed our first child Hunter in October 2007 and were informed

immediately after his birth of the DS but had to wait a week for the blood tests

to come back, which then confirmed he had MDS. He is 12 weeks old and thriving

at the moment. No health issues as yet which has been great as it has let us

adjust to the MDS without having to worry about anything else as well. He is

smiling and talking heaps (babbling) at the moment and seems to crack himself up

everytime he sneezes, which is halarious and oh so cute. I'm enjoying being a

mum alot more than I thought I would and I'm getting in heaps of cuddles and

kisses.

My husband Lee works at a wine company that distributes wine throughout

and Tasmania (great as we get loads of free wine) and before we had

Hunter I was working as a Sales Rep for Hawaiian Airlines.

The IMDSA has been great for me so far and I love reading everyones blogs even

if I don't respond. I've learnt so much already.

For those of you who are enjoying the snow, I'm sweating in the heat down here

at the moment. 42 degrees C in Melbourne today and tomorrow which is 108 F.

Fiona

Mum to Hunter mds 12 weeks

From: Kristy Colvin

Sent: Tuesday, January 01, 2008 4:12 PM

Happy New Year Everyone! I hope all of you have a wonderful, safe and

prosperous 2008!

Let's start the New Year out right! We have over 500 families on our group and

I realize most are lurkers. In this past year, we have received so many new

families that it is hard for everyone to know who is who!

So...I invite you to join me in telling everyone about yourself and your

family. RE-introduce yourself to the group so everyone knows who you are!

I will start...

I am Kristy Colvin. I live in Texas and am about to celebrate my 13th wedding

anniversary with my wonderful husband, Glenn. I have 3 sons and 2 step-sons. (My

sons) Arron 26, Tim 21 (MDS) and Garrett 11 and (my step-sons) 22 and

Stevan 21. Arron lives on his own and has my 4 beautiful grandsons, (Arron,

Aidan, " Spot " and Garrett). is in the Army and now stationed in Arizona

and Stevan is in the Navy and is stationed in Baghdad. Tim and Garrett stay home

with me. Tim is about to begin job hunting as he has taken a break since

graduating in 2005. Garrett is in 6th grade. (I know...it confuses me sometimes

too! lol) Glenn is a truck driver and is gone most the time and I work full time

(as a volunteer) for IMDSA. I co-founded IMDSA in 2001 and it has been a

wonderful outlet for me as Tim was growing in his teen years and I was

desperately searching for information on mosaic Down syndrome. After many

questions and talking to countless families

and professionals,

I now probably know more about MDS than any person in the world! LOL But, now

that I know all that I do, I am able to help all the wonderful families like

you!

So...that is me....tell me about you!

Kristy

[Guest guest]

I am glad you got the pictures Fiona. I'm glad you liked them. It is pretty,

isn't it? I think all this talk about snow has made me appreciate it more than

usual. lol Today it is only 1 degree. Soooo cold. A good day to sit by the

fireplace and enjoy the view through the window. If anyone else wants to see,

let me know.

Donna

Fiona & Lee Price wrote:

Hey Becky

Donna sent me photo's of her back yard covered in snow. It was soooo beautiful.

Just like the movies ;o)

Fiona

Re: Roll Call!

I've been away on holidays for a few weeks (sunning myself at the beach) so

sorry for my late response to the Roll Call.

My name is Fiona Price, I am 29 years old and have been married to my wonderful

husband Lee for 1 whole glorious year ) (we have been together for 9 years).

We live in Melbourne, Australia and are currently building our dream home down

in Torquay (which is about an hour out of Melbourne on the coast). For those of

you familar with the movie Point Break, we will be living at Bells Beach. )

We welcomed our first child Hunter in October 2007 and were informed immediately

after his birth of the DS but had to wait a week for the blood tests to come

back, which then confirmed he had MDS. He is 12 weeks old and thriving at the

moment. No health issues as yet which has been great as it has let us adjust to

the MDS without having to worry about anything else as well. He is smiling and

talking heaps (babbling) at the moment and seems to crack himself up everytime

he sneezes, which is halarious and oh so cute. I'm enjoying being a mum alot

more than I thought I would and I'm getting in heaps of cuddles and kisses.

My husband Lee works at a wine company that distributes wine throughout

and Tasmania (great as we get loads of free wine) and before we had Hunter I was

working as a Sales Rep for Hawaiian Airlines.

The IMDSA has been great for me so far and I love reading everyones blogs even

if I don't respond. I've learnt so much already.

For those of you who are enjoying the snow, I'm sweating in the heat down here

at the moment. 42 degrees C in Melbourne today and tomorrow which is 108 F.

Fiona

Mum to Hunter mds 12 weeks

From: Kristy Colvin

Sent: Tuesday, January 01, 2008 4:12 PM

Happy New Year Everyone! I hope all of you have a wonderful, safe and prosperous

2008!

Let's start the New Year out right! We have over 500 families on our group and I

realize most are lurkers. In this past year, we have received so many new

families that it is hard for everyone to know who is who!

So...I invite you to join me in telling everyone about yourself and your family.

RE-introduce yourself to the group so everyone knows who you are!

I will start...

I am Kristy Colvin. I live in Texas and am about to celebrate my 13th wedding

anniversary with my wonderful husband, Glenn. I have 3 sons and 2 step-sons. (My

sons) Arron 26, Tim 21 (MDS) and Garrett 11 and (my step-sons) 22 and

Stevan 21. Arron lives on his own and has my 4 beautiful grandsons, (Arron,

Aidan, " Spot " and Garrett). is in the Army and now stationed in Arizona

and Stevan is in the Navy and is stationed in Baghdad. Tim and Garrett stay home

with me. Tim is about to begin job hunting as he has taken a break since

graduating in 2005. Garrett is in 6th grade. (I know...it confuses me sometimes

too! lol) Glenn is a truck driver and is gone most the time and I work full time

(as a volunteer) for IMDSA. I co-founded IMDSA in 2001 and it has been a

wonderful outlet for me as Tim was growing in his teen years and I was

desperately searching for information on mosaic Down syndrome. After many

questions and talking to countless families

and professionals,

I now probably know more about MDS than any person in the world! LOL But, now

that I know all that I do, I am able to help all the wonderful families like

you!

So...that is me....tell me about you!

Kristy

[Guest guest]

I am glad you got the pictures Fiona. I'm glad you liked them. It is pretty,

isn't it? I think all this talk about snow has made me appreciate it more than

usual. lol Today it is only 1 degree. Soooo cold. A good day to sit by the

fireplace and enjoy the view through the window. If anyone else wants to see,

let me know.

Donna

Fiona & Lee Price wrote:

Hey Becky

Donna sent me photo's of her back yard covered in snow. It was soooo beautiful.

Just like the movies ;o)

Fiona

Re: Roll Call!

I've been away on holidays for a few weeks (sunning myself at the beach) so

sorry for my late response to the Roll Call.

My name is Fiona Price, I am 29 years old and have been married to my wonderful

husband Lee for 1 whole glorious year ) (we have been together for 9 years).

We live in Melbourne, Australia and are currently building our dream home down

in Torquay (which is about an hour out of Melbourne on the coast). For those of

you familar with the movie Point Break, we will be living at Bells Beach. )

We welcomed our first child Hunter in October 2007 and were informed immediately

after his birth of the DS but had to wait a week for the blood tests to come

back, which then confirmed he had MDS. He is 12 weeks old and thriving at the

moment. No health issues as yet which has been great as it has let us adjust to

the MDS without having to worry about anything else as well. He is smiling and

talking heaps (babbling) at the moment and seems to crack himself up everytime

he sneezes, which is halarious and oh so cute. I'm enjoying being a mum alot

more than I thought I would and I'm getting in heaps of cuddles and kisses.

My husband Lee works at a wine company that distributes wine throughout

and Tasmania (great as we get loads of free wine) and before we had Hunter I was

working as a Sales Rep for Hawaiian Airlines.

The IMDSA has been great for me so far and I love reading everyones blogs even

if I don't respond. I've learnt so much already.

For those of you who are enjoying the snow, I'm sweating in the heat down here

at the moment. 42 degrees C in Melbourne today and tomorrow which is 108 F.

Fiona

Mum to Hunter mds 12 weeks

From: Kristy Colvin

Sent: Tuesday, January 01, 2008 4:12 PM

Happy New Year Everyone! I hope all of you have a wonderful, safe and prosperous

2008!

Let's start the New Year out right! We have over 500 families on our group and I

realize most are lurkers. In this past year, we have received so many new

families that it is hard for everyone to know who is who!

So...I invite you to join me in telling everyone about yourself and your family.

RE-introduce yourself to the group so everyone knows who you are!

I will start...

I am Kristy Colvin. I live in Texas and am about to celebrate my 13th wedding

anniversary with my wonderful husband, Glenn. I have 3 sons and 2 step-sons. (My

sons) Arron 26, Tim 21 (MDS) and Garrett 11 and (my step-sons) 22 and

Stevan 21. Arron lives on his own and has my 4 beautiful grandsons, (Arron,

Aidan, " Spot " and Garrett). is in the Army and now stationed in Arizona

and Stevan is in the Navy and is stationed in Baghdad. Tim and Garrett stay home

with me. Tim is about to begin job hunting as he has taken a break since

graduating in 2005. Garrett is in 6th grade. (I know...it confuses me sometimes

too! lol) Glenn is a truck driver and is gone most the time and I work full time

(as a volunteer) for IMDSA. I co-founded IMDSA in 2001 and it has been a

wonderful outlet for me as Tim was growing in his teen years and I was

desperately searching for information on mosaic Down syndrome. After many

questions and talking to countless families

and professionals,

I now probably know more about MDS than any person in the world! LOL But, now

that I know all that I do, I am able to help all the wonderful families like

you!

So...that is me....tell me about you!

Kristy

[Guest guest]

You're in Indiana, right? Fan a little of that snow down Northern KY way! And

make sure you send it at the right time of the morning! 7:00A.M. is too late

We need it to be coming down pretty good -- and sticking -- starting around

5:00A.M. and continuing through about 7:30 or 8:00A.M. After they've called off

school for the day, THEN it can slack off, so I can go somewhere if I want to!

LOL!

The forecast is looking pretty good for Monday night into Tuesday, but then

again it looked pretty good for this past Wednesday night into Thursday and we

got robbed! It started snowing at 10 till 7 -- just as I was leaving for

school! By that time, the busses are already out and it's too late to call off

school!

" In the meadow we can build a snowman, and pretend that he is Parson

Brown.......... "

A.

Special Educator

Simon Kenton HS

11132 Madison Pk.

Independence, KY 41051

(859)960-0348

cynthia.jones@...

________________________________

From: MosaicDS on behalf of Donna Spudic

Sent: Sat 1/19/2008 1:18 PM

To: MosaicDS

Subject: Re: Roll Call!

I am glad you got the pictures Fiona. I'm glad you liked them. It is pretty,

isn't it? I think all this talk about snow has made me appreciate it more than

usual. lol Today it is only 1 degree. Soooo cold. A good day to sit by the

fireplace and enjoy the view through the window. If anyone else wants to see,

let me know.

Donna

Fiona & Lee Price <flprice@... <mailto:flprice%40optusnet.com.au> >

wrote:

Hey Becky

Donna sent me photo's of her back yard covered in snow. It was soooo beautiful.

Just like the movies ;o)

Fiona

Re: Roll Call!

I've been away on holidays for a few weeks (sunning myself at the beach) so

sorry for my late response to the Roll Call.

My name is Fiona Price, I am 29 years old and have been married to my wonderful

husband Lee for 1 whole glorious year ) (we have been together for 9 years).

We live in Melbourne, Australia and are currently building our dream home down

in Torquay (which is about an hour out of Melbourne on the coast). For those of

you familar with the movie Point Break, we will be living at Bells Beach. )

We welcomed our first child Hunter in October 2007 and were informed immediately

after his birth of the DS but had to wait a week for the blood tests to come

back, which then confirmed he had MDS. He is 12 weeks old and thriving at the

moment. No health issues as yet which has been great as it has let us adjust to

the MDS without having to worry about anything else as well. He is smiling and

talking heaps (babbling) at the moment and seems to crack himself up everytime

he sneezes, which is halarious and oh so cute. I'm enjoying being a mum alot

more than I thought I would and I'm getting in heaps of cuddles and kisses.

My husband Lee works at a wine company that distributes wine throughout

and Tasmania (great as we get loads of free wine) and before we had Hunter I was

working as a Sales Rep for Hawaiian Airlines.

The IMDSA has been great for me so far and I love reading everyones blogs even

if I don't respond. I've learnt so much already.

For those of you who are enjoying the snow, I'm sweating in the heat down here

at the moment. 42 degrees C in Melbourne today and tomorrow which is 108 F.

Fiona

Mum to Hunter mds 12 weeks

From: Kristy Colvin

Sent: Tuesday, January 01, 2008 4:12 PM

Happy New Year Everyone! I hope all of you have a wonderful, safe and prosperous

2008!

Let's start the New Year out right! We have over 500 families on our group and I

realize most are lurkers. In this past year, we have received so many new

families that it is hard for everyone to know who is who!

So...I invite you to join me in telling everyone about yourself and your family.

RE-introduce yourself to the group so everyone knows who you are!

I will start...

I am Kristy Colvin. I live in Texas and am about to celebrate my 13th wedding

anniversary with my wonderful husband, Glenn. I have 3 sons and 2 step-sons. (My

sons) Arron 26, Tim 21 (MDS) and Garrett 11 and (my step-sons) 22 and

Stevan 21. Arron lives on his own and has my 4 beautiful grandsons, (Arron,

Aidan, " Spot " and Garrett). is in the Army and now stationed in Arizona

and Stevan is in the Navy and is stationed in Baghdad. Tim and Garrett stay home

with me. Tim is about to begin job hunting as he has taken a break since

graduating in 2005. Garrett is in 6th grade. (I know...it confuses me sometimes

too! lol) Glenn is a truck driver and is gone most the time and I work full time

(as a volunteer) for IMDSA. I co-founded IMDSA in 2001 and it has been a

wonderful outlet for me as Tim was growing in his teen years and I was

desperately searching for information on mosaic Down syndrome. After many

questions and talking to countless families

and professionals,

I now probably know more about MDS than any person in the world! LOL But, now

that I know all that I do, I am able to help all the wonderful families like

you!

So...that is me....tell me about you!

Kristy

[Guest guest]

Finally digging through 599 E-Mails........Well Better Late than Ever....So

Here Goes!!! My name is and my Husband is . We have been married 9

years and have four children. We live on Cape Cod and love it here although

the winters are long and boring!! I am a Registered Nurse and my Husband is a

manager for s Lawn Service. He is currently in a police reserve academy

and is trying to become a police officer.

My oldest son is 9 years old and in the 4th grade. He loves what typical 9

year old boys love...Sports and Video Games. My oldest daughter is turning 8

and is in the second grade. She loves to read, especially about Fairies! She

also loves Soccer and Gymnastics. My youngest son is 5 and in preschool. He

will thankfully start Kindergarten next year because he is more than ready!! He

loves anything his older brother loves, because he wants to be just like him!

Our baby is , 2 1/2 years old and the most work yet! It's a good

thing she came last and not first!! She is our joy and we all fight over her

attention. She is a Ham and is always trying to make us laugh. She is also

super

stubborn and independent and will only do things her own way, when she wants

to. A Typical Two Year Old I Say!! has MDS and wasn't diagnosed until

she was almost three months old.

My 18 week ultrasound during pregnancy showed a heart defect and at the

cardiologist's urging, I reluctantly had an Amniosentesis. The results were

normal and my pregnancy was transferred to a High Risk OB. was induced in

a

Boston Hospital a week early because they wanted her born in the city with

the staff needed for her care. Once born she looked Pink and she was screaming

like a healthy Baby. They let me hold her for a couple minutes before

transferring her to the NICU. When I went to the NICU that night to hold her,

my

intuition told me something was not right with her. I couldn't pinpoint what

exactly, but she was different somehow than my other children. Her

echocardiogram the next day showed good news, had a different heart

defect than

they originally thought when she was in utero. This was a much better defect to

have (ASD) but she continued to trouble them. She would become cyanotic,

needed oxygen to maintain an acceptable oxygen level, had poor feeding and very

low muscle tone. She had many little things that bothered the NICU doctor

about her physical attributes that my Husband and I did not notice. She had a

Neurologist and Geneticist see her and they sent out blood work on her

chromosomes. I did not understand this because I had a negative amnio but the

results

were sent out and after 2 1/2 weeks in the NICU, was sent home on

oxygen. She had failure to thrive at home. She would sleep through the night and

was never interested in eating. She had such a weak suck and would not gain

any weight. She was admitted to Childrens Hospital at 2 months old for a NG

tube to feed her and was there a week. She came home with the feeding tube

but never had any improvement with eating and eventually stopped altogether a

month later. At 4 months old she had a G-tube place for feeding. She started to

thrive because she kept her feedings down better without the NG tube. Her

reflux had been quite severe. She started to put on weight and eventually

started to make some milestones. The big difference in , came right

before

her 2nd birthday when she had her open heart surgery for her ASD repair. The

energy she has now!! The day after surgery she asked for water and drank a 4

oz. glass in seconds. She had never done that before. She developed an

interest in eating as well! This is what we have been praying for !!

will now

eat very small amounts of certain foods. She will only eat Mac and cheese,

American cheese, juice boxes, water, certain crackers like goldfish and

cookies. Her favorite thing is mini m+m's!! These are baby steps but HUGE for

us.

She will only take a couple bites of food a couple times a day but this is

coming from NOTHING!! She is still about 95% G-tube fed but she has an interest

to eat and it will only increase from now on. The big thing standing in her

way is sensory issues and Behavioral. She is Afraid. Swallowing is hard when

its so new and she is learning how to chew for the first time. That is scary

for her. She also doesn't associate food with hunger. It is a VERY HARD thing

to overcome. This has been the hardest thing I Have ever done in my life. The

progress is so SLOW. It is hard to stay patient. loves Dora,

SpongeBob, and Mickey Mouse. She loves to play outside, and running and

climbing like

a typical two year old. She is speech delayed but has had a huge explosion

in speech the last month. She loves music!!! She has feeding/speech therapy

twice per week. PT twice per month, a music play group once per week and a

social/gross motor play group once per week. She is Thriving!! She still has

problems with low muscle tone and can not yet walk up or down stairs without

help. She wears braces for her weak ankles that have really helped strenghthen

her legs by supporting her ankles. She rarely falls now. We have a problem

with safety for her. The concept she does not yet understand but she is getting

much better. A month ago she would of walked off the top of the stairs or

any edge without a clue. She now will stop at the edge and try to find a way

down even if she falls trying to do it. She also is a wanderer. I know this is

a trait held by many with MDS. I dont know if short attention spans is also

common??? has trouble sitting in circle with the other kids in

playgroup for more than two minutes. She also rarely sits for the whole story

when I

read to her. She also moves from toy to toy or activity to activity within

minutes.

Well when we had our appointment with the geneticist that now long ago

November day when was almost three months old, and she said to

us......Do

you know what a chromosome is? I sat in shock. I thought of all the things

she would never do and felt a loss of the daughter I dreamed of. It was mostly

ignorance. I had never heard of MDS and new little about DS. This

organization was the only thing I came across online with information about MDS

and

hearing stories of Hope really helped. has AMAZED ME!!! She is more than

I could have ever asked for. I feel lucky to have been blessed by my

daughter. I now dream of what a wonderful, full life that is possible for her.

And I

will stand by her to make sure it happens. We treat her like she is the same

as our other 3 kids. In reality she is. Every child is different, any child

can have health

problems. We are all Unique in our own way. Sorry this was so long...I

started writing and couldn't stop!!

(mom to 2 1/2 MDS)

In a message dated 1/1/2008 12:13:17 A.M. Eastern Standard Time,

imdsapresident@... writes:

Happy New Year Everyone! I hope all of you have a wonderful, safe and

prosperous 2008!

Let's start the New Year out right! We have over 500 families on our group

and I realize most are lurkers. In this past year, we have received so many

new families that it is hard for everyone to know who is who!

So...I invite you to join me in telling everyone about yourself and your

family. RE-introduce yourself to the group so everyone knows who you are!

I will start...

I am Kristy Colvin. I live in Texas and am about to celebrate my 13th

wedding anniversary with my wonderful husband, Glenn. I have 3 sons and 2

step-sons. (My sons) Arron 26, Tim 21 (MDS) and Garrett 11 and (my step-sons)

22 and Stevan 21. Arron lives on his own and has my 4 beautiful grandsons,

(Arron, Aidan, " Spot " and Garrett). is in the Army and now stationed in

Arizona and Stevan is in the Navy and is stationed in Baghdad. Tim and Garrett

stay home with me. Tim is about to begin job hunting as he has taken a break

since graduating in 2005. Garrett is in 6th grade. (I know...it confuses me

sometimes too! lol) Glenn is a truck driver and is gone most the time and I

work full time (as a volunteer) for IMDSA. I co-founded IMDSA in 2001 and it

has been a wonderful outlet for me as Tim was growing in his teen years and I

was desperately searching for information on mosaic Down syndrome. After many

questions and talking to countless families and professionals,

I now probably know more about MDS than any person in the world! LOL But,

now that I know all that I do, I am able to help all the wonderful families

like you!

So...that is me....tell me about you!

Kristy

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

**************Start the year off right. Easy ways to stay in shape.

http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

[Guest guest]

Wow ,

Your story is amazing, definitely not for the faint hearted, especially

with the feeding difficulties and heart problems.

Good luck with getting to eat independently, it sounds like a

hard but rewarding struggle.

Well done, my thoughts are with you

Emma

Aunt of Moya (1 week old) with MDS or DS (not quite sure yet).

Emma Haller

emma@...

618627034

Re: Roll Call!

Finally digging through 599 E-Mails.....-...Well Better Late than

Ever....So

Here Goes!!! My name is and my Husband is . We have been

married 9

years and have four children. We live on Cape Cod and love it here

although

the winters are long and boring!! I am a Registered Nurse and my Husband

is a

manager for s Lawn Service. He is currently in a police reserve

academy

and is trying to become a police officer.

My oldest son is 9 years old and in the 4th grade. He loves what typical

9

year old boys love...Sports and Video Games. My oldest daughter is

turning 8

and is in the second grade. She loves to read, especially about Fairies!

She

also loves Soccer and Gymnastics. My youngest son is 5 and in preschool.

He

will thankfully start Kindergarten next year because he is more than

ready!! He

loves anything his older brother loves, because he wants to be just like

him!

Our baby is , 2 1/2 years old and the most work yet! It's a good

thing she came last and not first!! She is our joy and we all fight over

her

attention. She is a Ham and is always trying to make us laugh. She is

also super

stubborn and independent and will only do things her own way, when she

wants

to. A Typical Two Year Old I Say!! has MDS and wasn't diagnosed

until

she was almost three months old.

My 18 week ultrasound during pregnancy showed a heart defect and at the

cardiologist'-s urging, I reluctantly had an Amniosentesis. The results

were

normal and my pregnancy was transferred to a High Risk OB. was

induced in a

Boston Hospital a week early because they wanted her born in the city

with

the staff needed for her care. Once born she looked Pink and she was

screaming

like a healthy Baby. They let me hold her for a couple minutes before

transferring her to the NICU. When I went to the NICU that night to hold

her, my

intuition told me something was not right with her. I couldn't pinpoint

what

exactly, but she was different somehow than my other children. Her

echocardiogram the next day showed good news, had a different

heart defect than

they originally thought when she was in utero. This was a much better

defect to

have (ASD) but she continued to trouble them. She would become cyanotic,

needed oxygen to maintain an acceptable oxygen level, had poor feeding

and very

low muscle tone. She had many little things that bothered the NICU

doctor

about her physical attributes that my Husband and I did not notice. She

had a

Neurologist and Geneticist see her and they sent out blood work on her

chromosomes. I did not understand this because I had a negative amnio

but the results

were sent out and after 2 1/2 weeks in the NICU, was sent home on

oxygen. She had failure to thrive at home. She would sleep through the

night and

was never interested in eating. She had such a weak suck and would not

gain

any weight. She was admitted to Childrens Hospital at 2 months old for a

NG

tube to feed her and was there a week. She came home with the feeding

tube

but never had any improvement with eating and eventually stopped

altogether a

month later. At 4 months old she had a G-tube place for feeding. She

started to

thrive because she kept her feedings down better without the NG tube.

Her

reflux had been quite severe. She started to put on weight and

eventually

started to make some milestones. The big difference in , came

right before

her 2nd birthday when she had her open heart surgery for her ASD repair.

The

energy she has now!! The day after surgery she asked for water and drank

a 4

oz. glass in seconds. She had never done that before. She developed an

interest in eating as well! This is what we have been praying for !!

will now

eat very small amounts of certain foods. She will only eat Mac and

cheese,

American cheese, juice boxes, water, certain crackers like goldfish and

cookies. Her favorite thing is mini m+m's!! These are baby steps but

HUGE for us.

She will only take a couple bites of food a couple times a day but this

is

coming from NOTHING!! She is still about 95% G-tube fed but she has an

interest

to eat and it will only increase from now on. The big thing standing in

her

way is sensory issues and Behavioral. She is Afraid. Swallowing is hard

when

its so new and she is learning how to chew for the first time. That is

scary

for her. She also doesn't associate food with hunger. It is a VERY HARD

thing

to overcome. This has been the hardest thing I Have ever done in my

life. The

progress is so SLOW. It is hard to stay patient. loves Dora,

SpongeBob, and Mickey Mouse. She loves to play outside, and running and

climbing like

a typical two year old. She is speech delayed but has had a huge

explosion

in speech the last month. She loves music!!! She has feeding/speech

therapy

twice per week. PT twice per month, a music play group once per week and

a

social/gross motor play group once per week. She is Thriving!! She still

has

problems with low muscle tone and can not yet walk up or down stairs

without

help. She wears braces for her weak ankles that have really helped

strenghthen

her legs by supporting her ankles. She rarely falls now. We have a

problem

with safety for her. The concept she does not yet understand but she is

getting

much better. A month ago she would of walked off the top of the stairs

or

any edge without a clue. She now will stop at the edge and try to find a

way

down even if she falls trying to do it. She also is a wanderer. I know

this is

a trait held by many with MDS. I dont know if short attention spans is

also

common??? has trouble sitting in circle with the other kids in

playgroup for more than two minutes. She also rarely sits for the whole

story when I

read to her. She also moves from toy to toy or activity to activity

within

minutes.

Well when we had our appointment with the geneticist that now long ago

November day when was almost three months old, and she said to

us......Do

you know what a chromosome is? I sat in shock. I thought of all the

things

she would never do and felt a loss of the daughter I dreamed of. It was

mostly

ignorance. I had never heard of MDS and new little about DS. This

organization was the only thing I came across online with information

about MDS and

hearing stories of Hope really helped. has AMAZED ME!!! She is

more than

I could have ever asked for. I feel lucky to have been blessed by my

daughter. I now dream of what a wonderful, full life that is possible

for her. And I

will stand by her to make sure it happens. We treat her like she is the

same

as our other 3 kids. In reality she is. Every child is different, any

child

can have health

problems. We are all Unique in our own way. Sorry this was so long...I

started writing and couldn't stop!!

(mom to 2 1/2 MDS)

In a message dated 1/1/2008 12:13:17 A.M. Eastern Standard Time,

HYPERLINK " mailto:imdsapresident%40imdsa.com " imdsapresident@-imdsa.com

writes:

Happy New Year Everyone! I hope all of you have a wonderful, safe and

prosperous 2008!

Let's start the New Year out right! We have over 500 families on our

group

and I realize most are lurkers. In this past year, we have received so

many

new families that it is hard for everyone to know who is who!

So...I invite you to join me in telling everyone about yourself and your

family. RE-introduce yourself to the group so everyone knows who you

are!

I will start...

I am Kristy Colvin. I live in Texas and am about to celebrate my 13th

wedding anniversary with my wonderful husband, Glenn. I have 3 sons and

2

step-sons. (My sons) Arron 26, Tim 21 (MDS) and Garrett 11 and (my

step-sons)

22 and Stevan 21. Arron lives on his own and has my 4 beautiful

grandsons,

(Arron, Aidan, " Spot " and Garrett). is in the Army and now

stationed in

Arizona and Stevan is in the Navy and is stationed in Baghdad. Tim and

Garrett

stay home with me. Tim is about to begin job hunting as he has taken a

break

since graduating in 2005. Garrett is in 6th grade. (I know...it confuses

me

sometimes too! lol) Glenn is a truck driver and is gone most the time

and I

work full time (as a volunteer) for IMDSA. I co-founded IMDSA in 2001

and it

has been a wonderful outlet for me as Tim was growing in his teen years

and I

was desperately searching for information on mosaic Down syndrome. After

many

questions and talking to countless families and professionals,

I now probably know more about MDS than any person in the world! LOL

But,

now that I know all that I do, I am able to help all the wonderful

families

like you!

So...that is me....tell me about you!

Kristy