Guest guest Posted May 6, 2005 Report Share Posted May 6, 2005 Welcome Cherie! I'm Gail from New Jersey, and I also have 4 children. Bobby is 11, Jillian is 8 1/2, and my b/g twins, and Tara are 6, Tara was born with Down syndrome. It was also a shock to me, I am a X-Ray technologist in a big hospital, and I had many ultrasounds done by " friends " so I knew I was having a boy & girl, the twins were always " neck n' neck " with their measurements, weight & due dates.............nothing ever showed on the scans. Tara did not have any heart anomolies, so, it too was a total shock to us at birth as well............the whole Radiology department, plus the Radiologists who I work for & friendly with, were also shocked................no one knew what to say to us.............I felt the same way you just described, at the begining, But that was 6 years ago......................Tara is great, my oldest too has a special bond with Tara, they seem to have the same temperment, where Jillian & are two crazy-nuts............ My oldest (tough football player)has even told his friends to knock off making fun of another boy at lunch-time in school....................... All I can say is you will need to journey through your pain & feelings, ......it will get better...............get some rest & sleep, things are always better when you are rested!!!! Good-luck & welcome! Gail Hello - new here and introducing myself > My name is Cherie Swaby. > I am thinking that my yahoo ID was not a great choice (Cayman mom of > twins) > since I actually have 4 children, not just twins, and we may not be living > in Grand Cayman forever! We are transplanted Floridians, and lived in > ville, Florida for 15 years before moving to Grand Cayman 3 years > ago. > My children are: > Ian - age 11 > Grace - age 8 > Kate and (DS) - age 1 (born 4-24-04) > It has been a very traumatic year for us, with twins arriving last April, > then Hurricane Ivan in September. Our lives are just beginning to feel > settled again, post-hurricane. The damage here was catastrophic, and there > are still many buildings in disrepair and stores that have not yet > re-opened. But that's another story! > I opted out of pre-natal testing, so it was a huge shock to me to find out > that had DS. Their birthday just seemed like a nightmare, instead of > the joyful day we had anticipated. I thought I would never stop crying. My > sister called me at the hospital and when I told her the news about , > my first words about her were " I don't want her. " I bonded with Kate > instantly, just held her and looked into her eyes and fell in love. I did > not want to hold at first, and had a hard time naming her - I just > didn't want to accept that she was mine. But, a year has gone by, and > although I still feel bitter, as if we were all cheated somehow, I do love > her so very much and just want her to have all the best life has to offer. > My two older kids have been a great source of inspiration to me - they had > no pre-conceived notions about DS and simply accepted and loved her > completely from day 1. As my son Ian said to me on one of my bad days, > " Mom, > is fine. She is a healthy baby with just a small chromosome > problem. " > (Ian and have a very special bond.) has a healthy heart, so I > know we are fortunate in some ways, as 2 of the DS children I met on the > island had heart surgery during their first year. > All for now. I am glad to find this board (thanks to Irene who told my > sister who told me - thank you, Irene). > Cherie Swaby > > > > > > Multiples-DS > http://groups.yahoo.com/group/Multiples-DS > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2005 Report Share Posted May 6, 2005 Hi Cherie, Glad you found your way here, you will really enjoy it. You know my whole story already! Zack DS has in 7 short years changed more hearts and opened more eyes than most well meaning grown-ups. Hang in there, little steps at a time. Irene Jake almost 9 (5/21) Zack DS, , almost 7 (5/18) Hello - new here and introducing myselfMy name is Cherie Swaby.I am thinking that my yahoo ID was not a great choice (Cayman mom of twins)since I actually have 4 children, not just twins, and we may not be livingin Grand Cayman forever! We are transplanted Floridians, and lived inville, Florida for 15 years before moving to Grand Cayman 3 yearsago. My children are:Ian - age 11 Grace - age 8Kate and (DS) - age 1 (born 4-24-04)It has been a very traumatic year for us, with twins arriving last April,then Hurricane Ivan in September. Our lives are just beginning to feelsettled again, post-hurricane. The damage here was catastrophic, and thereare still many buildings in disrepair and stores that have not yetre-opened. But that's another story!I opted out of pre-natal testing, so it was a huge shock to me to find outthat had DS. Their birthday just seemed like a nightmare, instead ofthe joyful day we had anticipated. I thought I would never stop crying. Mysister called me at the hospital and when I told her the news about ,my first words about her were "I don't want her." I bonded with Kateinstantly, just held her and looked into her eyes and fell in love. I didnot want to hold at first, and had a hard time naming her - I justdidn't want to accept that she was mine. But, a year has gone by, andalthough I still feel bitter, as if we were all cheated somehow, I do loveher so very much and just want her to have all the best life has to offer. My two older kids have been a great source of inspiration to me - they hadno pre-conceived notions about DS and simply accepted and loved hercompletely from day 1. As my son Ian said to me on one of my bad days, "Mom, is fine. She is a healthy baby with just a small chromosome problem."(Ian and have a very special bond.) has a healthy heart, so Iknow we are fortunate in some ways, as 2 of the DS children I met on theisland had heart surgery during their first year.All for now. I am glad to find this board (thanks to Irene who told mysister who told me - thank you, Irene).Cherie SwabyMultiples-DShttp://groups.yahoo.com/group/Multiples-DS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2005 Report Share Posted May 7, 2005 HI Cherie, Welcome to the group. You have been through alot in the last year. I hope things get better for you all. My name is Pam and I live in Tennessee. I have 4 children. Josh 24, 18 and identical twin girls Hannah and . I was in shock too when I found out the twins had DS. It took me a few months to bond with them. I didn't want to hold them or feed them in the hospital. The nurse had to encourage me to do so. That was a long time ago. I couldn't image my life without my little girls now. We have been through a lot and still have more to go through. I just take it one day at a time. Again welcome. If you ever have any questions ask away. We would be more then happy to help. PamSara Greenberg wrote: From: dcswaby Sent: Thursday, May 05, 2005 1:49 PMTo: 'MultiplesDS@...'Subject: Hello - new here and introducing myselfMy name is Cherie Swaby.I am thinking that my yahoo ID was not a great choice (Cayman mom of twins)since I actually have 4 children, not just twins, and we may not be livingin Grand Cayman forever! We are transplanted Floridians, and lived inville, Florida for 15 years before moving to Grand Cayman 3 yearsago. My children are:Ian - age 11 Grace - age 8Kate and (DS) - age 1 (born 4-24-04)It has been a very traumatic year for us, with twins arriving last April,then Hurricane Ivan in September. Our lives are just beginning to feelsettled again, post-hurricane. The damage here was catastrophic, and thereare still many buildings in disrepair and stores that have not yetre-opened. But that's another story!I opted out of pre-natal testing, so it was a huge shock to me to find outthat had DS. Their birthday just seemed like a nightmare, instead ofthe joyful day we had anticipated. I thought I would never stop crying. Mysister called me at the hospital and when I told her the news about ,my first words about her were "I don't want her." I bonded with Kateinstantly, just held her and looked into her eyes and fell in love. I didnot want to hold at first, and had a hard time naming her - I justdidn't want to accept that she was mine. But, a year has gone by, andalthough I still feel bitter, as if we were all cheated somehow, I do loveher so very much and just want her to have all the best life has to offer. My two older kids have been a great source of inspiration to me - they hadno pre-conceived notions about DS and simply accepted and loved hercompletely from day 1. As my son Ian said to me on one of my bad days, "Mom, is fine. She is a healthy baby with just a small chromosome problem."(Ian and have a very special bond.) has a healthy heart, so Iknow we are fortunate in some ways, as 2 of the DS children I met on theisland had heart surgery during their first year.All for now. I am glad to find this board (thanks to Irene who told mysister who told me - thank you, Irene).Cherie Swaby Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2005 Report Share Posted May 31, 2005 Welcome to the group! Mom to Amy, Kelsey, Davey (DS), and Will New Member Hi - I'm new here and wanted to introduce myself and my family. 1. What is your name? My name is Suzanne and my husband's name is Chase 2. What are the first names of your children and how old are they? I have a son, Connor, 2 and we are expecting again in July (a girl, Sloane) 3. Which child/children has Down syndrome? Connor has Ds and my amnio results indicate that Sloane also will have Ds. 4. Which state or country do you live in? We live in Northern Virginia. 5. Anything else you want to tell us? This board is so active! I'm really impressed. I'm still just trying to get to know everyone, but will try to post when I have something to share. Looking forward to " meeting " you all. More pictures of our kids: http://www.pbase.com/urriegrl/multiplesds Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2005 Report Share Posted May 31, 2005 Suzanne, Welcome to you and your family!! This group is such a great resource. I hope you ask lots of questions and share lots of knowledge. Casey, mom to (DS) and , 5 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2005 Report Share Posted June 1, 2005 HI Suzanne and welcome to the group. I am Pam. My husbands name is . between us we have 5 children. 3 boys and identical twin girls with DS. We live in Tennessee. We look forward to hearing more about you and your family. Pam mom to identical twin girls Hannah (DS) and (DS-AUTISM) almost 10Suzanne wrote: Hi - I'm new here and wanted to introduce myself and my family.1. What is your name?My name is Suzanne and my husband's name is Chase2. What are the first names of your children and how old are they?I have a son, Connor, 2 and we are expecting again in July (a girl, Sloane)3. Which child/children has Down syndrome?Connor has Ds and my amnio results indicate that Sloane also will have Ds.4. Which state or country do you live in?We live in Northern Virginia.5. Anything else you want to tell us?This board is so active! I'm really impressed. I'm still just trying to get to know everyone, but will try to post when I have something to share. Looking forward to "meeting" you all. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2005 Report Share Posted June 6, 2005 Hello and Welcome! I'm Gayla, mother to 4. My first child is actually a step child I have raised as my own . is 21, he has ADHD. My first two bio born children, have translocation trisomy 21. Mercede is almost 15 and Ce Ce is almost 13. My youngest will be 1 year old in a week. She is a translocation carrier like I am. Gayla > 1. What is your name? > > and , together for 21 years, married 15 > years in October 2005 > > 2. What are the first names of your children and how > old are they? > > & Sloan Isis, 7 years on May 6th > > 3. Which child/children has Down syndrome? > > Vinnie has DS & Alopecia Universal (he is totally bald > on his head & body) > > 4. Which state or country do you live in? > > Virginia Beach, VA > > 5. Anything else you want to tell us? > > I thought that I was all ALONE in this world until I > found someone else JUST like me (which was H. > with Landon & Ashton, her twins are actually a month > younger than mine) and then this list began... > > I have NEVER been alone again! > > ~, Moma to Vinnie (DS) & Sloan { 7 years old} > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2005 Report Share Posted June 7, 2005 Welcome , I am Irene, hubby we live in DeLand Florida with our 4 children. Jake is 9, Zachary DS, , and are 7. My son Jake has alapecia also, the only hair on his entire body are his eyelashes and eyebrows that are half of what they should be. This is his 2nd outbreak and this time we doubt it will return. My son Zack started to lose his hair in Jan of this year, he lost about 25%, but he responded to treatment and it all grew back by May. What if any treatment have you done? The 1st time we did Drithromax cream for 1 year. This time we did womens Rogaine and Elidel 2X a day. I am sure you already know that it is an autoimmune disease? We had Zack checked by an Endocrinologist to rule out other autoimmune problems (I have Rheumatoid Arithritis). You will love this group, they have so much knowledge. Irene Re: New Member 1. What is your name? and , together for 21 years, married 15years in October 20052. What are the first names of your children and howold are they? & Sloan Isis, 7 years on May 6th3. Which child/children has Down syndrome?Vinnie has DS & Alopecia Universal (he is totally baldon his head & body)4. Which state or country do you live in?Virginia Beach, VA5. Anything else you want to tell us?I thought that I was all ALONE in this world until Ifound someone else JUST like me (which was H.with Landon & Ashton, her twins are actually a monthyounger than mine) and then this list began...I have NEVER been alone again!~, Moma to Vinnie (DS) & Sloan { 7 years old}__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2005 Report Share Posted June 9, 2005 > 1. What is your name? > Stauffer > > 2. What are the first names of your children and how old are they? Quinn-9, Sara and Maggie-6, Teddy 4 > > 3. Which child/children has Down syndrome? > Maggie has Down syndrome. They were born at 36 weeks after 6 weeks of bedrest. Maggie weighed 4.2 lbs and Sara was 5.6 lbs. We didn't know Maggie had Down syndrome until she was 2.5 months old. > > 4. Which state or country do you live in? > Oxford, Massachusetts > > 5. Anything else you want to tell us? > I have been a member of this list since it began. I think only Kay and are the other active " old timers " . It is a great list. I really do think we should all write to Oprah and tell her we want to meet on her show. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2005 Report Share Posted June 9, 2005 RE: Re: New Member > > >> 1. What is your name? > >> Gail Van Houten >> >> 2. What are the first names of your children and how old are they? > Bobby 11 1/2, Jillian 8 1/2, & Tara 6 >> >> 3. Which child/children has Down syndrome? >> > Tara was born with Down sydrome. My twins were born at 39 weeks. My > doctors suspected right away that Tara had DS! > > > >> >> 4. Which state or country do you live in? >> Vernon, New Jersey > > > >> >> 5. Anything else you want to tell us? >> I too have been on this list since started it, along with Pam >> too! And also feel we should start a campaign to get on Oprah, esp. since >> she feels that " Motherhood " is the hardest job!! She should do a show on >> us Mom's with children with special needs!!! > > > > > More pictures of our kids: > http://www.pbase.com/urriegrl/multiplesds > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2005 Report Share Posted June 9, 2005 RE: Re: New Member > > >> >> >>> 1. What is your name? >> >>> Gail Van Houten >>> >>> 2. What are the first names of your children and how old are they? >> Bobby 11 1/2, Jillian 8 1/2, & Tara 6 >>> >>> 3. Which child/children has Down syndrome? >>> >> Tara was born with Down sydrome. My twins were born at 39 weeks. My >> doctors suspected right away that Tara had DS! >> >> >> >>> >>> 4. Which state or country do you live in? >>> Vernon, New Jersey >> >> >> >>> >>> 5. Anything else you want to tell us? >>> I too have been on this list since started it, along with Pam >>> too! And also feel we should start a campaign to get on Oprah, esp. >>> since >>> she feels that " Motherhood " is the hardest job!! She should do a show on >>> us Mom's with children with special needs!!! forgot about Pam & Gail!! >> >> >> >> >> More pictures of our kids: >> http://www.pbase.com/urriegrl/multiplesds >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2005 Report Share Posted June 9, 2005 RE: Re: New Member > > >> >> >>> 1. What is your name? >> >>> Gail Van Houten >>> >>> 2. What are the first names of your children and how old are they? >> Bobby 11 1/2, Jillian 8 1/2, & Tara 6 >>> >>> 3. Which child/children has Down syndrome? >>> >> Tara was born with Down sydrome. My twins were born at 39 weeks. My >> doctors suspected right away that Tara had DS! >> >> >> >>> >>> 4. Which state or country do you live in? >>> Vernon, New Jersey >> >> >> >>> >>> 5. Anything else you want to tell us? >>> I too have been on this list since started it, along with Pam >>> too! And also feel we should start a campaign to get on Oprah, esp. >>> since >>> she feels that " Motherhood " is the hardest job!! She should do a show on >>> us Mom's with children with special needs!!! I do remember her having a show where she fullfilled one Moms dreams of having her son, who has Ds get a job, & he did finally at their own local Walmart, Oprah set that up! GVH >> >> >> >> >> More pictures of our kids: >> http://www.pbase.com/urriegrl/multiplesds >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2005 Report Share Posted June 10, 2005 Oh Gail and Pam...I am sorry! I remember!!!!! I think we should go on Oprah as a listserve who needs to meet. I am sure she could find other groups who have been together as long as we have. It is quite phenomenal that we probably know more about how each other feels than some people we see in person daily and yet some of us have never met face-to-face. Can you imagine if we all met in Chicago. I wonder if we would need to bring the kids? We all sure could have a good time! Re: Re: New Member RE: Re: New Member > > >> >> >>> 1. What is your name? >> >>> Gail Van Houten >>> >>> 2. What are the first names of your children and how old are they? >> Bobby 11 1/2, Jillian 8 1/2, & Tara 6 >>> >>> 3. Which child/children has Down syndrome? >>> >> Tara was born with Down sydrome. My twins were born at 39 weeks. My >> doctors suspected right away that Tara had DS! >> >> >> >>> >>> 4. Which state or country do you live in? >>> Vernon, New Jersey >> >> >> >>> >>> 5. Anything else you want to tell us? >>> I too have been on this list since started it, along with Pam >>> too! And also feel we should start a campaign to get on Oprah, esp. >>> since >>> she feels that " Motherhood " is the hardest job!! She should do a show on >>> us Mom's with children with special needs!!! forgot about Pam & Gail!! >> >> >> >> >> More pictures of our kids: >> http://www.pbase.com/urriegrl/multiplesds >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2005 Report Share Posted June 10, 2005 I think Oprah would be a great place to meet! I belong to a triplet string of families raising triplets all born in the same year and they have been trying to get on Oprah for a few years, w/no luck. Irene RE: Re: New Member>>>>>>>>> 1. What is your name?>>>>> Gail Van Houten>>>>>> 2. What are the first names of your children and how old are they?>> Bobby 11 1/2, Jillian 8 1/2, & Tara 6>>>>>> 3. Which child/children has Down syndrome?>>>>> Tara was born with Down sydrome. My twins were born at 39 weeks. My>> doctors suspected right away that Tara had DS!>>>>>>>>>>>> 4. Which state or country do you live in?>>> Vernon, New Jersey>>>>>>>>>>>> 5. Anything else you want to tell us?>>> I too have been on this list since started it, along with Pam>>> too! And also feel we should start a campaign to get on Oprah, esp. >>> since>>> she feels that "Motherhood" is the hardest job!! She should do a show on>>> us Mom's with children with special needs!!! forgot about Pam & Gail!! >>>>>>>>>> More pictures of our kids:>> http://www.pbase.com/urriegrl/multiplesds>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2005 Report Share Posted June 13, 2005 Hi , That would be a great idea to all meet on Oprah. I would love to see more stories on TV about down syndrome and have the chance to meet all the wonderful people in this group. Mom to 11, Collin 8, Chloe & Casey (DS) 19 months RE: Re: New Member > 1. What is your name?> Stauffer>> 2. What are the first names of your children and how old are they?Quinn-9, Sara and Maggie-6, Teddy 4>> 3. Which child/children has Down syndrome?> Maggie has Down syndrome. They were born at 36 weeks after 6 weeks ofbedrest. Maggie weighed 4.2 lbs and Sara was 5.6 lbs. We didn't knowMaggie had Down syndrome until she was 2.5 months old.>> 4. Which state or country do you live in?> Oxford, Massachusetts>> 5. Anything else you want to tell us?> I have been a member of this list since it began. I think only Kayand are the other active "old timers". It is a great list. I reallydo think we should all write to Oprah and tell her we want to meet on hershow.More pictures of our kids:http://www.pbase.com/urriegrl/multiplesds Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2005 Report Share Posted June 15, 2005 Hello Irene, Vinnie started losing his hair when was 2 1/2 and then eventually lost all of his hair and body hair. We tried creams way back when, but he would cry and complain that it hurt. So, we stopped treatment, until it really bothers him about being bald. The only hair that has ever grown back was his eye brows and eye lashes, but that has since fell out again. When he's asked about what happened to his hair. He just says that it's gone. A little boy asked me once, if I did that to his hair? I said no, God did that to his hair. I'm not new to the list, I have been since it was created. I have found ALOT of advise and support through this list over the years! ~, Mommy to Vinnie and Moma to Sloan {7 years} Vinnie will correct Sloan when she says Moma, by saying " Mommy, Sloan! " --- igercak wrote: > Welcome , > I am Irene, hubby we live in DeLand Florida > with our 4 children. > Jake is 9, Zachary DS, , and are 7. > My son Jake has > alapecia also, the only hair on his entire body are > his eyelashes and > eyebrows that are half of what they should be. This > is his 2nd outbreak > and this time we doubt it will return. My son Zack > started to lose his > hair in Jan of this year, he lost about 25%, but he > responded to treatment > and it all grew back by May. What if any treatment > have you done? The 1st > time we did Drithromax cream for 1 year. This time > we did womens > Rogaine and Elidel 2X a day. I am sure you already > know that it is an > autoimmune disease? We had Zack checked by an > Endocrinologist to > rule out other autoimmune problems (I have > Rheumatoid Arithritis). > You will love this group, they have so much > knowledge. > Irene > Re: New Member > > > 1. What is your name? > > and , together for 21 years, married 15 > years in October 2005 > > 2. What are the first names of your children and > how > old are they? > > & Sloan Isis, 7 years on May 6th > > 3. Which child/children has Down syndrome? > > Vinnie has DS & Alopecia Universal (he is totally > bald > on his head & body) > > 4. Which state or country do you live in? > > Virginia Beach, VA > > 5. Anything else you want to tell us? > > I thought that I was all ALONE in this world until > I > found someone else JUST like me (which was > H. > with Landon & Ashton, her twins are actually a > month > younger than mine) and then this list began... > > I have NEVER been alone again! > > ~, Moma to Vinnie (DS) & Sloan { 7 years old} > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2005 Report Share Posted June 19, 2005 Hi All!! I'm going to e-mail Oprah about us also and see where it gets us. I'll keep you posted. Sherrill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2005 Report Share Posted June 30, 2005 , Hello and welcome to you and your family. Wow the group as such a wonderful international flare. You say now that your small ones are 6 and a half you have some time? My triplets are 7 and their brother is 9, I haven't had anytime in 7 years. Hope to hear more about your family. We live in Florida. Irene Jake 9 Zachary DS, , & 7 New member 1. What is your name?My name is Sebek2. What are the first names of your children and how old are they?Zacharina, 6½ years old (girl)Xerxes, 6½ years old (boy)Majken, 2 years old (girl)3. Which child/children has Down syndrome?Xerxes is the one with down syndrome4. Which state or country do you live in?I live in Sweden.5. Anything else you want to tell us?I was a member many years ago and it help a lot. Now I have some extra time and thought it would be nice to be a member again.Yours Sincerely SebekMamma till tvillingarna Xerxes (DS) och Zacharina, födda 990129 och lillasyster Majken född 030513(Mother to the twins Xerxes and Zacharina, born 1999 - 01 - 29 and little Majken born 2003-05-13.)More pictures of our kids:http://www.pbase.com/urriegrl/multiplesds Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2005 Report Share Posted August 31, 2005 Hi Caroline, I am Marcia from Sisters, Oregon. I have twins, Sara, who has Down Syndrome and , who does not. They are somewhat close in age to your boys. They will be 11 in November. Welcome to our group. I know I will also need support as Sara moves into the pre and adolescent years. Already last night, she was acting like a pre-teen (or a spoiled little girl) and ran to her room and told me she "hated" me. (First time doing that). She was helping me cook and I told her she needed to wash her hands with soap. She didn't think she needed to and it escalated into the above. On one hand, it hurt to hear those words, because I know we love each other from the bottom of our hearts, but on the other hand, in so many ways, she is very typical. Again, welcome and we hope to hear more from you, soon. Marcia Mom to Sara (DS) and 10 and Lucas 14 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2005 Report Share Posted August 31, 2005 Hi Caroline, I have already met you. I am Amy Brand from Sarnia, Ontario and have Carly and Calli, identical twins both w/Ds who turned 1 yr. old today. Welcome to this group. It is a wealth of knowledge and very supporting. Talk to you soon. Amy > Hi my name is Caroline Mavridis and I am a single parent raising my sons Neil and who both have Down Syndrome and they are also Identical Twins. Neil and are eleven years old soon to turn 12 at the end of September. We live in British Columbia Canada. We would love to connect with other families who also have Identical twins with DS. Thank Caroline Mavridis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2005 Report Share Posted August 31, 2005 Hi Caroline, Welcome to the group! You are definitely in the right place. Regards, Granata Wife to Joe Mom to Haley & Nikki, almost 3 yr old twin girls, both w/DS, and , almost 17 mos son Leesburg, Virginia, USA > Hi my name is Caroline Mavridis and I am a single parent raising my sons Neil and who both have Down Syndrome and they are also Identical Twins. Neil and are eleven years old soon to turn 12 at the end of September. We live in British Columbia Canada. We would love to connect with other families who also have Identical twins with DS. Thank Caroline Mavridis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2005 Report Share Posted September 1, 2005 Hi Caroline, Glad you found this group, I know there are a bunch of identicals w/DS, I am not sure of their ages, you may turn out having the oldest and helping all of us. Irene in FL Jake 9 Zack DS, , & 7 new member Hi my name is Caroline Mavridis and I am a single parent raising my sons Neil and who both have Down Syndrome and they are also Identical Twins. Neil and are eleven years old soon to turn 12 at the end of September. We live in British Columbia Canada. We would love to connect with other families who also have Identical twins with DS. Thank Caroline Mavridis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2005 Report Share Posted September 5, 2005 Welcome to the group Caroline! My name is Joyce and I have 3 Down Syndrome kids ages 22, 12, and 8. There's never a dull moment around my house. I have a wonderful supportive and helpful husband, Mike, for 30 years now. In these past 30 years I've given birth to seven kids. (as I said, three are DS) This is a great group and we try to answer each other's questions and encourage one another. We look forward to hearing more from you. Until then, take care! Joyce-wife to Mike 30 years! Mom to seven--29, Leah-28-, Mikey-25, -22-DS, -20, -12-DS, and last of all...-8-DS/Autistic new member Hi my name is Caroline Mavridis and I am a single parent raising my sons Neil and who both have Down Syndrome and they are also Identical Twins. Neil and are eleven years old soon to turn 12 at the end of September. We live in British Columbia Canada. We would love to connect with other families who also have Identical twins with DS. Thank Caroline Mavridis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2005 Report Share Posted September 6, 2005 Hi, Congratulations on the birth of your twins. Thank you for sharing your story. Wow! By joining this webiste, you have begun to surround yourself with support systems, which is one of the things I recommend. I am Marcia, Mom to twins, Sara and , who will be 11 in November. Sara has Down Syndrome and does not. In addition to finding support systems, books are a huge help. Two books that helped me (and there are probably more almost eleven years, later) are: "Babies With Down Syndrome" by Stray-Gundersen and "Medical & Surgical Care for Children with Down Syndrome", edited by several doctors, one of them being D.C. Van Dyke, M.D. Another helpful thing that we did was contact NDSS (National Down Syndrome Society) and they had a wonderful video that really helped my husband and I understand the journey we were about to undertake. The phone # for NDSS is 1- or their website is www.ndss.org I look forward to hearing more from you and about your family. Marcia Mom to Sara (DS) and 10 and Lucas 14 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2005 Report Share Posted September 6, 2005 hi, i am a new member and am looking for all the help i can get for my son. in short version, my husband and i tried for years to have children and finally went to a fertility clinic here in the Twin Cities, i ended up using donor eggs and after years at the fertility clinic found out i was pregnant with twins...that was the happiest day of both out lives. the pregnancy was uneventful until 29 weeks when one of the boys was found to have a heart problem. after many ultra sounds and specialists we were told that one of our twins was possible DS and with his heart condition was not going to live past a couple days. to say nothing we were divested. so after weeks of being seen 2x a week at the specialists office, the boys were born at 36 weeks. Caleb my twin with the heart problem was born at 6 pds 6 oz and only spent one night in NICU. his brother was born 6 pds. 12 oz. Caleb has been one of the greatest joys, the doctors said his heart is nothing short of a miracle, he will still need open heart surgery but from what it was like earlier on he told us we must have someone on our side. i got the call a week ago that his chromosomes came back with a diagnosis of DS...other than that i have been told nothing. what are my next steps in getting everything Caleb needs. any information would help. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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