Guest guest Posted January 3, 2008 Report Share Posted January 3, 2008 Happy New Year to each and everyone of you and your families! My name is Suzanne and have been married to Marshall for almost 18 years now! We have two beautiful children Jordan(4 1/2) and Dalton (3 mds). We currently live in Colorado, but are moving to Texas in March for a job change and be closer to family! Dalton just turned 3 on the 27th! He made our Christmas wishes come true a little early when he started walking all over the place the beginning of December! We found out about his mds while I was still pregnant. He had his avsd repaired at the age of 3 months and we've never looked back! He's an amazing little boy! He has a permanent smile on his face it seems! He's going to start preschool next week and I know he will do very well with it. He love to play with his sister and just have a great time in general! Suzanne Dillon > > 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 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2008 Report Share Posted January 3, 2008 Howdy all, My name is Hailey and I've been married to Becky now for almost 9 years. We have three boys, (5 1/2 MDS), Nick and Sam (3 twins). We found out about s MDS the day before Thanksgiving. We have an appointment with the geneticist coming up soon. We live in Loveland, CO and would love to meet anyone that lives close by that are dealing with the same issues we are. Happy New Year to each and everyone of you and your families! My name is Suzanne and have been married to Marshall for almost 18 years now! We have two beautiful children Jordan(4 1/2) and Dalton (3 mds). We currently live in Colorado, but are moving to Texas in March for a job change and be closer to family! Dalton just turned 3 on the 27th! He made our Christmas wishes come true a little early when he started walking all over the place the beginning of December! We found out about his mds while I was still pregnant. He had his avsd repaired at the age of 3 months and we've never looked back! He's an amazing little boy! He has a permanent smile on his face it seems! He's going to start preschool next week and I know he will do very well with it. He love to play with his sister and just have a great time in general! Suzanne Dillon ________________________________________________________________________________\ ____ Looking for last minute shopping deals? Find them fast with Yahoo! Search. http://tools.search.yahoo.com/newsearch/category.php?category=shopping Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2008 Report Share Posted January 3, 2008 Hi All and Happy New Year. My name is Donna Spudic. I am the mother of two wonderful daughters. who works as a Senior Personal Banker and has joined the management training program for her bank. She is the mother of Skylar age 5 1/2 and Mia age 1. who is a stay at home mom and mother to Adam who is 5 1/2 and has mds. spends her days caring for Adam, Skylar and Mia so we never have to worry about the girls being with strangers. It works out very well for them. This is the most important part of my life. I love being a grandma. Adam is doing wonderfully. He learns new things everyday. Happily I report that we are now potty trained and able to wear big boy underwear even at night. He thinks he is cool now. He is in kindergarten in an M.O. classroom so he gets a lot of individual help. He likes school and does very well. Although Adam still has a big speech delay, at Christmas is surprised us. Skylar was wearing a pretty dress and I said Adam, doesn't Skylar look pretty. He responded " Pretty " which would have normally been the end of his sentence. Then he said " She's a dream come true. " The room went dead silent - no one could believe he said it. It is a line from Cinderella, but he still used it appropriately. I work as a synergistic lab facilitator (kind of a science based class for second through fifth graders) for the School City of Hammond in Hammond Indiana. This is my full time job. I also work part time in a deli and at a hair salon making everyone in the town of Whiting Indiana beautiful. After all of this, I had so much free time on my hands, I decided to become the membership chairperson for the IMDSA. and I live in Portage Indiana in the subdivision of Ogden Dunes. It is beautiful here. We live just down the street from Lake Michigan, so I get to spend my free time at the beach in the summer and listening to the wind howl off the lake in the winter - brrrrr!! I love it here. In my free time - yes I do find some - I love to scrapbook. I have made scrapbooks of the kids first year. I love looking at them. I also love to read. Donna P.S. This was a great idea Kristy. I really am enjoying reading about everyone. Kristy Colvin wrote: 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2008 Report Share Posted January 5, 2008 I am Jeanne Fichera and I live in New Jersey with my fiance Eddie who is originally from Puerto Rico, my son Nick who is 20 and going to school for Auto Technician, my daughter le who is 19 and will start Beauty school next month and last but never least 13 MDS who is in 7th grade in Middle School. I work as an Accounts Payable Manager for Einstein Moomjy which is a Carpet, Rug and furniture company. had spine surgery 2 months ago. They put a 7 inch metal rod in the top curve of her spine and now she wears a brace to correct the bottom curve. She is doing great now. She was competing in Special olympics for gymnastics which she loves but unfortunately that is put on hold now. Hopefully she can continue in the future. She struggles academically in school but in everything else she is great. She loves bratz dolls and music, especially singing (very off key, doors shut in my Apt when she starts LOL). She love to play Nintendo and watches alot of movies. I found this group many years ago before IMDSA started and have really gotten alot of support and answers whenever something came up that I needed help with. This group is wonderful and I hope to get to one of the conferences. Jeanne 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2008 Report Share Posted January 5, 2008 Thanks for arranging the roll call Kristy. I am Tina Baggott, mom to Charlotte (5 3/4 yrs with MDS), and twins Will and Amy (4 1/2 years). Charlotte was diagnosed with mosaic trisomy 13 from an amnio, but when she was born her blood showed MDS and no abnormality of chromosome 13. She may either have both mosaicisms or the abnormal chromosome 13 may have come from a twin who never developed past about week 8 of the pregnancy. Charlotte has minimal features of MDS. She is about 4-5 inches shorter than her younger siblings. She is literally reading dictionaries, newspapers, computer manuals etc in kindergarten. She is teaching herself math. She did have a speech delay, but now is never quiet. She may be a bit delayed socially. She interacts quite well with adults-but has only a few friends. My biggest concern now is when to tell her about the MDS. She is starting to ask why she gets blood tests with her annual physical appointments (for thyroid checks) and her siblings don't. I noted the concern posted about telling folks during the adolescent years. I think it may be better to tell her in about a year or so. That way she will just be comfortable with the issue when she becomes a teenager. I don't post often as we are busy around here, but I enjoy lurking... Tina > > 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 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2008 Report Share Posted January 5, 2008 Well, I guess I can take my turn. I am . I am a special education teacher in Northern KY and I have a student with MDS. I found this group a few years ago right after I found out I would be getting my student. Since I'd never heard of MDS, I decided to do a little research on the Web. My search brought me to the IMDSA website and this e-group. I was very ignorant of this genetic anomaly, but have become much more informed over the years -- thanks to all your expertise. Some time after I joined the group, Kristy asked me to write an educational column for the newsletter. I pointed out my ignorance about MDS and she assured me she wanted my educational knowledge for the column. (Yes, , I know it's time for a new article! :-)) Over time, that has morphed into my being the educational consultant on the advisory board. I also had the privilege of speaking at the Conference this summer. You may or may not remember me, because I was the last speaker on the docket! (I had to have just the right time slot, b/c I drove all the way from Northern KY to Richmond, VA on that Saturday morning after participating in Relay for Life that Friday night AND I had to be back so I could teach summer school on Monday morning!) A little about me personally: I have been a teacher for nearly 16 years. I was originally a social studies teacher, untiI found out that the public schools don't often hire social studies teachers who don't coach a sport! After seven years teaching in a private school in Eastern KY, I married my husband and we stayed there another year. Since private schools don't pay much and we were both working two jobs, we decided it was time to move on if we were ever going to be parents! We knew we couldn't give a child the attention s/he needed if we were both gone five nights a week. When I began applying to the public schools, that's when I came to the stark realization that there were more social studies teachers than there were jobs! I decided to pursue special education and have never looked back. I landed my current job in 2000. At first, I was working in the FMD unit -- which, in KY, is the classroom with the students with the most severe handicaps. I absolutely LOVED what I was doing, but when I went on maternity leave, there was a teacher shuffle and I started teaching students with learning and behavior disabilities. Now, THAT is my niche! I currently collaborate with the math department to make sure that students with IEPs have access to the general curriculum and get their educational needs met. My husband and I have one daughter -- Molly, who is 6. She is Deaf and has recently been diagnosed with mild Autism. She attends a regional program for Deaf and Hard of Hearing children and has really blossomed this year. She still has a long way to go, but has also come a long way. She recently (FINALLY) mastered using the potty IN THE POTTY and her daddy and I breathed a great sigh of relief! As you can see, I am on both sides of the table when it comes to children with disabilities. I know the challenges and joys of raising a child with a disability. I also know the challenges and joys of teaching children with various disabilities. I wouldn't trade what I'm doing now for ANY OTHER JOB IN THE WORLD! Kristy, I hope it was ok that I shared -- since I'm not a parent in this group -- but I believe you DID say you wanted to hear from ALL members of the group! A. Special Educator Simon Kenton HS 11132 Madison Pk. Independence, KY 41051 (859)960-0348 cynthia.jones@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2008 Report Share Posted January 6, 2008 Hi Kristy - We're actually moving as central as central gets! We're moving to Copperas Cove. Close to you at all? Moving to Texas, I hope to meet some new folks! We haven't met any other parents here in Littleton, Colorado with a child with MDS. Don't get me wrong, I have some great friends we've met through MHDSA! Although I don't post hardly ever, all the info I see come across is so very helpful! Suzanne mom to Jordan (4 1/2) and Dalton(3, mds) > > > > 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 > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2008 Report Share Posted January 6, 2008 Suzanne Copperas Cove is just up a ways from me! In fact...we have some families closer to Copperas Cove than me! We will have to get together sometime! When are ya'll moving to Texas? Kristy Suzanne wrote: Hi Kristy - We're actually moving as central as central gets! We're moving to Copperas Cove. Close to you at all? Moving to Texas, I hope to meet some new folks! We haven't met any other parents here in Littleton, Colorado with a child with MDS. Don't get me wrong, I have some great friends we've met through MHDSA! Although I don't post hardly ever, all the info I see come across is so very helpful! Suzanne mom to Jordan (4 1/2) and Dalton(3, mds) > > > > 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 > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2008 Report Share Posted January 6, 2008 Charlotte and Cherly - Copperas Cove is next to Killeen. And I would love to meet up with both of you at some point once we get down there. We're looking at moving in March! Please contact me directly at suzanne@... so that we might keep in touch until then and can let you know when we're settled! Suzanne mom to Jordan and Dalton(mds) > > > > > > 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 > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2008 Report Share Posted January 7, 2008 Thanks for sharing ! YES! I want EVERYONE to share their story! That is what this is all about! It is very important for everyone on this group to know everyone else and what brought us all together here as a family! EVERYONE HAS A STORY!!!!!!! So....if you haven't shared...(no matter WHY you are here!) Please share! We want to hear from you!!!!!!!! Kristy " , - Kenton County " wrote: Well, I guess I can take my turn. I am . I am a special education teacher in Northern KY and I have a student with MDS. I found this group a few years ago right after I found out I would be getting my student. Since I'd never heard of MDS, I decided to do a little research on the Web. My search brought me to the IMDSA website and this e-group. I was very ignorant of this genetic anomaly, but have become much more informed over the years -- thanks to all your expertise. Some time after I joined the group, Kristy asked me to write an educational column for the newsletter. I pointed out my ignorance about MDS and she assured me she wanted my educational knowledge for the column. (Yes, , I know it's time for a new article! :-)) Over time, that has morphed into my being the educational consultant on the advisory board. I also had the privilege of speaking at the Conference this summer. You may or may not remember me, because I was the last speaker on the docket! (I had to have just the right time slot, b/c I drove all the way from Northern KY to Richmond, VA on that Saturday morning after participating in Relay for Life that Friday night AND I had to be back so I could teach summer school on Monday morning!) A little about me personally: I have been a teacher for nearly 16 years. I was originally a social studies teacher, untiI found out that the public schools don't often hire social studies teachers who don't coach a sport! After seven years teaching in a private school in Eastern KY, I married my husband and we stayed there another year. Since private schools don't pay much and we were both working two jobs, we decided it was time to move on if we were ever going to be parents! We knew we couldn't give a child the attention s/he needed if we were both gone five nights a week. When I began applying to the public schools, that's when I came to the stark realization that there were more social studies teachers than there were jobs! I decided to pursue special education and have never looked back. I landed my current job in 2000. At first, I was working in the FMD unit -- which, in KY, is the classroom with the students with the most severe handicaps. I absolutely LOVED what I was doing, but when I went on maternity leave, there was a teacher shuffle and I started teaching students with learning and behavior disabilities. Now, THAT is my niche! I currently collaborate with the math department to make sure that students with IEPs have access to the general curriculum and get their educational needs met. My husband and I have one daughter -- Molly, who is 6. She is Deaf and has recently been diagnosed with mild Autism. She attends a regional program for Deaf and Hard of Hearing children and has really blossomed this year. She still has a long way to go, but has also come a long way. She recently (FINALLY) mastered using the potty IN THE POTTY and her daddy and I breathed a great sigh of relief! As you can see, I am on both sides of the table when it comes to children with disabilities. I know the challenges and joys of raising a child with a disability. I also know the challenges and joys of teaching children with various disabilities. I wouldn't trade what I'm doing now for ANY OTHER JOB IN THE WORLD! Kristy, I hope it was ok that I shared -- since I'm not a parent in this group -- but I believe you DID say you wanted to hear from ALL members of the group! A. Special Educator Simon Kenton HS 11132 Madison Pk. Independence, KY 41051 (859)960-0348 cynthia.jones@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2008 Report Share Posted January 7, 2008 Tina Thanks for sharing your story! I think that it is best to tell your child when they ask about it. And, don't make a big deal about it when you do. Just say, " You have mosaic Down syndrome and so you need extra blood tests to make sure you stay healthy. " and leave it at that. Alot of times, kids ask questions and parents think they need these long drawn out answers when actually they are much more content with simple answers that tell them what they need to know. In time, she will probably ask you more questions and you just answer them as they come. JMHO Kristy cbaggott2002 wrote: Thanks for arranging the roll call Kristy. I am Tina Baggott, mom to Charlotte (5 3/4 yrs with MDS), and twins Will and Amy (4 1/2 years). Charlotte was diagnosed with mosaic trisomy 13 from an amnio, but when she was born her blood showed MDS and no abnormality of chromosome 13. She may either have both mosaicisms or the abnormal chromosome 13 may have come from a twin who never developed past about week 8 of the pregnancy. Charlotte has minimal features of MDS. She is about 4-5 inches shorter than her younger siblings. She is literally reading dictionaries, newspapers, computer manuals etc in kindergarten. She is teaching herself math. She did have a speech delay, but now is never quiet. She may be a bit delayed socially. She interacts quite well with adults-but has only a few friends. My biggest concern now is when to tell her about the MDS. She is starting to ask why she gets blood tests with her annual physical appointments (for thyroid checks) and her siblings don't. I noted the concern posted about telling folks during the adolescent years. I think it may be better to tell her in about a year or so. That way she will just be comfortable with the issue when she becomes a teenager. I don't post often as we are busy around here, but I enjoy lurking... Tina > > 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 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2008 Report Share Posted January 7, 2008 Hi everyone! Even though I've introduced myself before I just wanted to get on here and do the official Roll Call! and I met in college and have been married for almost 8 years now (it helps to remember when you got married in 2000). We both finished our degrees and moved back home to Washington state, just south of Seattle. We have 3 children and one on the way. Aidan is our oldest and was diagnosed with MDS after his 2-year checkup. We have 2 other girls, a (4) and (almost 2) and a boy due in March. I guess I thought I wasn't busy enough and I really felt the need to give back so I offered my help to Kristy about a year ago. I've done our family reunion newsletters before so took on that challenge. I thoroughly enjoy being on the board of directors and seeing firsthand what amazing people there are there is inspiring to me. Last year and I attended the conference in Virginia and learned so much from the wonderful presenters as well as other parents. We look forward to attending future conferences. Right now I'm getting our next newsletter ready for publishing and would love to have some brags from some of you who we don't hear from as often. You can send a paragraph with a picture to me at slpbjones@.... I just need them by January 15th to be in time for our February 1st publishing. If you've thought about joining IMDSA, but haven't yet just go to www.imdsa.com. As part of your membership package you will receive upcoming issues of our online newsletter, as well as have access to our archives. I'm so glad to " meet " some of you and hope to hear about more of the families in this wonderful group! IMDSA Newsletter Editor ________________________________________________________________________________\ ____ Looking for last minute shopping deals? Find them fast with Yahoo! Search. http://tools.search.yahoo.com/newsearch/category.php?category=shopping Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2008 Report Share Posted January 11, 2008 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2008 Report Share Posted January 11, 2008 Hi Fiona, Here in Virginia we haven't had a white Christmas in 2 years now! My boys are praying nightly for snow as that means school is cancelled and they get to go outside! Austin just sits down and starts munching on snow and Trey will do anything in it (sledding, snowman, snowball fights, etc.) They may get their prayers answered on Sunday, weather-man says it supposed to snow on Sunday (but most of the time he's wrong, so I'll just wait and see LOL) Becky Mom to Austin 5, MDS and 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2008 Report Share Posted January 15, 2008 Oh, thanks? 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2008 Report Share Posted January 22, 2008 Right about now, I would love to send the snow to you . Up here, we would probably need a couple of feet of snow for them to close school. lol We got more snow last night - about 4 or so inches. It makes driving to work miserable. Lots of accidents on the road.. It sure is pretty though. Donna " , - Kenton County " wrote: 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2008 Report Share Posted January 22, 2008 Well, we FINALLY got our much-deserved snow day! LOL! We really didn't get much snow at all, BUT it came at just the right time! The forecast is looking pretty good for another one on Thursday, too! Actually, I was grateful to get my call this morning telling me I could roll over and go back to sleep instead of getting up and getting dressed! Molly decided at 4:30A.M. that she was HUNGRY! She asked for PIZZA and I said, " No. " She then asked for a CHICKEN PATTY and I said, " No. " I offered her a toaster strudel and, at first, she refused it. Then, I guess she decided she was hungry enough that she'd " settle " for that, so she agreed. The bad mommy in my fixed it for her and went straight back to bed! That messed with my whole sleep mode, so I was truly grateful for the call this morning! :-) 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: Tue 1/22/2008 1:41 PM To: MosaicDS Subject: RE: Roll Call! Right about now, I would love to send the snow to you . Up here, we would probably need a couple of feet of snow for them to close school. lol We got more snow last night - about 4 or so inches. It makes driving to work miserable. Lots of accidents on the road.. It sure is pretty though. Donna " , - Kenton County " <cynthia.jones@... <mailto:cynthia.jones%40kenton.kyschools.us> > wrote: 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@... <mailto:cynthia.jones%40kenton.kyschools.us> ________________________________ From: MosaicDS <mailto:MosaicDS%40yahoogroups.com> on behalf of Donna Spudic Sent: Sat 1/19/2008 1:18 PM To: MosaicDS <mailto:MosaicDS%40yahoogroups.com> 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> <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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2008 Report Share Posted January 28, 2008 Hi! I'm . My wife Sharon and I have two boys, 14yo and 12yo (MDS). We moved to central Kentucky in 2002 after I retired from the Fire Dept in Metro DC. My wife works as a nurse and I presently run an occupational health clinic. We had an amnio done and I was at work when my wife called in tears and asked I call the Fairfax Genetics. They said Matt (I call him Matt, he insists on ), had MDS. I felt like any parent feels who has been told something is wrong with their child but wanted to hold off being too upset until I had done some research. Now everything seems kind of normal. It's the life we live. There are so many things that can crop up -- diseases, accidents -- in anyone's life, and the feeling that our family was about to embark on some downhill branch in the road never came to pass. We have challenges with Matt, but the same with Chris. I was injured and had to retire from the Fire Dept, something I dearly loved. Sharon got cancer. We kept on walking. Now we have a grumpy ex-Capt, a stay at home nurse, a lanky, sullen high school freshman, and Matt. Not bad. Matt has no Downs features, no GI, no cardiac. Early on we saw his speech could use some assistance and his mental (especially verbal) processing was different than ours -- but with it's own pros and cons. It took us a while to learn just how often we create assumptions about people we interact with. Once we got Sharon and I (and his teachers) trained away from our assuming his actions and messages meant what we thought they " had to mean " and focused on Matt the individual -- things have gone well. In fact he has allowed us to see more of an inner world that is incredibly rich and complex. Finding the MDS group was wonderful. It's been especially helpful with school and " social growth " -- being able to compare notes and all. In Matt's case I believe he may have Asperger's or CAPD. Not that I am that interested in a diagnosis, but being able to pull interventions from those area has been incredibly helpful. Well that's about where we are at now. I'm enjoying reading about everyone and look forward to more. A note to say hi to the Aussies. I grew up in Guam and Aussieland was my favorite place for traveling (then had to move to South America and then the USA, but hope to take my family over for a visit soon). 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2008 Report Share Posted January 28, 2008 As always, it is great to hear from you! I can't wait to read 's story in our upcoming MOSAIC WORLD! I have been looking forward to it! Kristy Force wrote: Hi! I'm . My wife Sharon and I have two boys, 14yo and 12yo (MDS). We moved to central Kentucky in 2002 after I retired from the Fire Dept in Metro DC. My wife works as a nurse and I presently run an occupational health clinic. We had an amnio done and I was at work when my wife called in tears and asked I call the Fairfax Genetics. They said Matt (I call him Matt, he insists on ), had MDS. I felt like any parent feels who has been told something is wrong with their child but wanted to hold off being too upset until I had done some research. Now everything seems kind of normal. It's the life we live. There are so many things that can crop up -- diseases, accidents -- in anyone's life, and the feeling that our family was about to embark on some downhill branch in the road never came to pass. We have challenges with Matt, but the same with Chris. I was injured and had to retire from the Fire Dept, something I dearly loved. Sharon got cancer. We kept on walking. Now we have a grumpy ex-Capt, a stay at home nurse, a lanky, sullen high school freshman, and Matt. Not bad. Matt has no Downs features, no GI, no cardiac. Early on we saw his speech could use some assistance and his mental (especially verbal) processing was different than ours -- but with it's own pros and cons. It took us a while to learn just how often we create assumptions about people we interact with. Once we got Sharon and I (and his teachers) trained away from our assuming his actions and messages meant what we thought they " had to mean " and focused on Matt the individual -- things have gone well. In fact he has allowed us to see more of an inner world that is incredibly rich and complex. Finding the MDS group was wonderful. It's been especially helpful with school and " social growth " -- being able to compare notes and all. In Matt's case I believe he may have Asperger's or CAPD. Not that I am that interested in a diagnosis, but being able to pull interventions from those area has been incredibly helpful. Well that's about where we are at now. I'm enjoying reading about everyone and look forward to more. A note to say hi to the Aussies. I grew up in Guam and Aussieland was my favorite place for traveling (then had to move to South America and then the USA, but hope to take my family over for a visit soon). 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2008 Report Share Posted January 29, 2008 Hi . I live on the north shor of Massachusetts. I too had all the tests during pregnancy and they came out normal. Sydney was born on March 17 2003 at Brigham and Womens Hospital in Boston. She happened to be the best feeder in the nursery!..however, the pediatrician told me she had " bad news " that she was showing " some " signs of Down syndrome. I was like " some? " how can you have some?..this was 6 hours after birth. The gentics team came in and said..oh we are talking Mosaicism..again..Huh?..and then the DS person came over and said..oh she has that..well that is a whole differetn thing and she left! Ok..noiw feeling like we were from the planet Quiggyball, I coul dnot wait to get home and start researching and stimulating that little brain. She too has an ASD/Mitral valve tear..but is completely asympmtomatic. Good thing..cuz..she was due for her surgery back in Sept. of 2005 and instead was diagnosed with Leukemia..which we have justed fininshed the treatment for with good results back in October of " 07. She will need surgery, but we have to wait for the chemo to work out of her body a bit more and make sure her immunity is strong. She too will ahv eher surgery at Children's...DR. Del Nedo (sp?).. is hte surgeon. There is a chance the surgery will be in August of this year. Well we are nearly neighbors! I cannot imagine my life without my Sydney to fill up my days! Kindest regards, mom to Syd (mds), almost 5, Zach 19 and Kerry 21 > > 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 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2008 Report Share Posted February 7, 2008 Im not sure I really understood how much I was really attempting to take on it has been exhausting!!! I just keep telling myself that it will be so worth it when I am done. Bryce is such a cool kid he tries to help me with my homework all of the time I guess its good that he thinks anatomy is cool and he makes me snacks while I work (usually a container of jelly squeezed into the jar of peanut butter with pretzel sticks) very creative he always tries so hard to take care of me Kristy Colvin wrote: So glad to hear from you! I am also glad to hear you are in school! I know how hard that is when you have mommy duties as well! (been there; done that lol) It is great to hear that Bryce is enjoying his school too! Don't be such a stranger! Kristy Lowe wrote: Ok so I know this is sooooo late but there has been so much going on including crashing of the computer while attempting to finish a 20 page paper for a final exam so not the best start to a new year Anyway to get to it. My name is I am the mother of a wonderful 5 year old little boy with MDS and mosaic Klinefelters. We are a quirky little family but we work. Bryces father and I seperated when he was only 9 months old when I came home one day to find he had changed the locks to the doors in our home. This was 6 weeks before Bryce was scheduled to have open heart surgery. We did not know about Bryces diagnosis before he was born, we found out two weeks to the day after he was born about the genetic issues and the heart defect. It was a huge shock that is not something you expect to hear as a 21 year old new mom. We have made a good life for ourselves, just the two of us (his dad has had no contact with him in like 3 or 4 years). We live in a kind of country little town literally a block away from my family. They are a huge help to us and I have no clue where we would be if it were not from them. I am a full time student, a dental assistant and also fill all of the roles that we all do on an everyday basis (driver, chef, friend, mom, maid, nurse.......) Bryce is loving school he is a Big Man on campus when I take him back to school after therapy each week there is a series of high 5s and hugs from everyone from staff to children. He is an amazing person sometimes I cant believe how in touch with others he is. He makes me want to be a better me and I am so proud everyday to call him my son, I just hope that someday he is as proud to call me his mom. Well that is us in a nutshell. Good luck to everyone this year. -------------- Original message -------------- From: Kristy Colvin 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2008 Report Share Posted February 8, 2008 Hi I'm late with this but our house has been a little crazy. I'm Jo Ann mom to ,2, who has MDS and ,5, who has autism, and mom oops I mean wife to Chuck. We live in Kansas in a very rural area. had av cannal repair at 3 months and had her g-tube removed at 13 months. She has been progressing well and other than the ocassional sinus infection and some tear duct problems she has been healthy. She has some physical delays but our main delay is with speech. We have been working on potty training and have had sucess twice, now if we could just get interested. I know I don't contribute a lot but I do read and enjoy this group, hopefully things will start to fall together so I can become more involved soon. Jo Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2008 Report Share Posted February 8, 2008 Hi Everyone...I have so enjoyed reading the " Roll Call " stories from the group and realized I never did one myself...so here goes... I am Ross . I have 3 son 10, 6, MDS, and Kirk 4...and my husband Ken..(Yes all K's...I never call anyone by the right name LOL). We live in Connecticut. was diagnosed with MDS when he was 2...his only delays were in the area of Speech. He was diagnosed with APRAXIA soon thereafter, this being very severe so much so that we were not sure if he would ever talk. He worked his tail off and had wonderful Speech Therapists and today he is fully included in Kindergarten and TALKING up a storm!! There have been many bumps in the road...lots of hard work has paid off. did have a serious stuttering issue last year. It took all year to get that under control and every so often it rears its ugly head...but pursues. will be leaving elementary school this year and moving on to 6th grade. It is going to be a HUGE change for him. Four of our elementary schools will combine to be the 6th grade at middle school!!!(We have 2 other middle schools as well). a big town. and all his friends have been so helpful, loving and supportive of I am sad to see them go. But thankfully , I have my little spitfire Kirk waiting in the wings. He will start Kindergarten in September and be in school with ...following in his big brother's footsteps. I am glad they have each other...ALWAYS. Ken works in New York City and has brutal hours. He gets home really late and leaves really early...but the weekends are " The K Boys " gone wild. They do everything together...from birthday parties...to sporting events.. and the boys have a ball!!! As for me, I do it all...like we all do...the best that I can. I work part time which is great. A little extra adult conversation...and a little extra $ in my pocket...works out great. Anyway, that's our story. Thanks for letting me share. Hi to all new members and did I mention how GREAT this group is? Thanks to Kristy and the Board for all their hard work and commitment to the group...we all benefit greatly and appreciate all you do. Ross **************Biggest Grammy Award surprises of all time on AOL Music. (http://music.aol.com/grammys/pictures/never-won-a-grammy?NCID=aolcmp00300000002\ 5 48) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2008 Report Share Posted February 8, 2008 Yeah, Kristy, I keep hearing that bribes work for potty training, but Molly was the counterexample to that statement! Good luck, Jo Ann, with the potty training of BOTH your little ones! Molly FINALLY decided to go on the potty as a late five-year-old. She is Deaf with a touch of Autism, as well. Hers was more stubborness than anything, though. She would go in the floor and then sit down on the potty! UGH! A. Special Educator Simon Kenton HS 11132 Madison Pk. Independence, KY 41051 (859)960-0348 cynthia.jones@... ________________________________ From: MosaicDS on behalf of Kristy Colvin Sent: Fri 2/8/2008 12:18 AM To: MosaicDS Subject: Re: Roll Call! Hi Jo Ann It is great to hear from you! I always enjoy hearing about you and your family! Good luck on the potty training! In my humble opinion...bribes work best! LOL Kristy Jo Ann <laurensmom4561@... <mailto:laurensmom4561%40yahoo.com> > wrote: Hi I'm late with this but our house has been a little crazy. I'm Jo Ann mom to ,2, who has MDS and ,5, who has autism, and mom oops I mean wife to Chuck. We live in Kansas in a very rural area. had av cannal repair at 3 months and had her g-tube removed at 13 months. She has been progressing well and other than the ocassional sinus infection and some tear duct problems she has been healthy. She has some physical delays but our main delay is with speech. We have been working on potty training and have had sucess twice, now if we could just get interested. I know I don't contribute a lot but I do read and enjoy this group, hopefully things will start to fall together so I can become more involved soon. Jo Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2008 Report Share Posted February 8, 2008 Thanks , goes beyond stuborn she will wait til you give up put the pull up back on , then come to you five minutes later with a clean one in her hand and say " wet " . responds well to praise so it's just a matter of catching her at the right times enough for her to put it all together. however will require bribes, I mean rewards;) Jo Ann > Hi I'm late with this but our house has been a little crazy. I'm Jo Ann > mom to ,2, who has MDS and ,5, who has autism, and mom oops I > mean wife to Chuck. We live in Kansas in a very rural area. > had av cannal repair at 3 months and had her g-tube removed at 13 > months. She has been progressing well and other than the ocassional > sinus infection and some tear duct problems she has been healthy. She > has some physical delays but our main delay is with speech. We have > been working on potty training and have had sucess twice, now if we > could just get interested. I know I don't contribute a lot but I > do read and enjoy this group, hopefully things will start to fall > together so I can become more involved soon. > Jo Ann > > Quote Link to comment Share on other sites More sharing options...
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