Guest guest Posted December 10, 2008 Report Share Posted December 10, 2008 Welcome!! So glad you found us! The internet is SUCH a great resource now! Bombard us with questions...we love them! Angel Mom to 15, MDS/Hirschsprung's and 5 siblings In a message dated 12/10/2008 3:56:37 A.M. Mountain Standard Time, mosaicdownsyndrome@... writes: Hi Everyone! We have a new family joining us today! Here is what they had to say... i am currently 27 weeks preggo with a son who has been diagnosed with mosaic trisomy 21. it has been characterized on 24 of 27 cells during an amnio and genetic testing. Welcome to our family! I am so glad you have joined us! Please feel free to ask any questions you have here. We will all be very happy to share our experiences with you! Twomey IMDSA Secretary & Website Admin Mum to 10mds and 8 http://www.imdsa.org http://www.twomeycontracting.com/reunion.htm [Non-text portions of this message have been removed] ------------------------------------ Become a member of IMDSA today at http://www.imdsa.org ******************************************************* Purchase your MDS awareness bracelet today!http://www.imdsa.org/Awareness/aware.htm ************************************************************************** Contact IMDSA Today at: IMDSA~PO Box 1052~lin,TX~77856~USA~1-~1-888-MDS-LINK ********************************************************************* Share your story today! http://www.mosaicdownsyndrome.com ********************************************************* To unsubscribe from this list, send e-mail to: MosaicDS-unsubscribeegroups ************************************************* To visit the e-group website go to: http://groups.yahoo.com/group/MosaicDS/ *************************************************Yahoo! Groups Links **************Make your life easier with all your friends, email, and favorite sites in one place. Try it now. (http://www.aol.com/?optin=new-dp & icid=aolcom40vanity & ncid=emlcntaolcom00000010) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2008 Report Share Posted December 10, 2008 Hi Everyone! We have a new family joining us today! Here is what they had to say... i am currently 27 weeks preggo with a son who has been diagnosed with mosaic trisomy 21. it has been characterized on 24 of 27 cells during an amnio and genetic testing. Welcome to our family! I am so glad you have joined us! Please feel free to ask any questions you have here. We will all be very happy to share our experiences with you! Twomey IMDSA Secretary & Website Admin Mum to 10mds and 8 http://www.imdsa.org http://www.twomeycontracting.com/reunion.htm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2008 Report Share Posted December 10, 2008 Hi and welcome to the group. I know right now you are probably in shock, confused and devastate at the news of mosaic down syndrome. I did not find out my little girl had mosaic down syndrome and triple x until she was 10 months old and it was only by a fluke I found out. Isabella will be two years old next week and she does the same things every other child with or without mds does. This group is wonderful and helped me through my most difficult times. This group was able to answer questions for me that doctors could not. Just try to enjoy the rest of your pregnancy, everything will all work out. Sue Isabella mds and triple x almost 2 Subject: Welcome new Family To: MosaicDS Date: Wednesday, December 10, 2008, 2:56 AM Hi Everyone! We have a new family joining us today! Here is what they had to say... i am currently 27 weeks preggo with a son who has been diagnosed with mosaic trisomy 21. it has been characterized on 24 of 27 cells during an amnio and genetic testing. Welcome to our family! I am so glad you have joined us! Please feel free to ask any questions you have here. We will all be very happy to share our experiences with you! Twomey IMDSA Secretary & Website Admin Mum to 10mds and 8 http://www.imdsa. org http://www.twomeyco ntracting. com/reunion. htm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2008 Report Share Posted December 11, 2008 HI , My name is Marriah and my 18 month old son Gideon was diagnosed with Mosaic Down's Syndrome at birth. He too had a heart defect and needed surgery at 4 months old, and another at 15 months. Im not sure why they told you it has to be done at birth, there may be a reason. But I just want you to know that you are not alone, I know exactly how you feel right now. The Doctors can do so much now its amazing, and Im sure your child will go through with the surgery just fine, if he needs it (some holes can close up on their own). If you have any questions on a personal manner about this situation feel free to talk to me and ask me anything you want. Just try and enjoy the pregnancy and know that your little boy will be just fine! My son is doing great now. He says 3-4 words and can sign language 15 words, he loves to swing and play with bubbles, he can feed himself with a spoon, he loves to dance and make people laugh all the time. His new favorite game is peekaboo. He is on target or just a little behind in milestones, but unfortunantly he did have the heart defects. But as far as those go, he pulled through great and now is doing wonderful health wise. Good luck, and congrats on your new coming boy! Marriah Buhman email- athena3330@... you can see his pics on the mosaicmoments website. Take care, and yes share more if youd like! From: Twomey <mosaicdownsyndrome@ yahoo.com> Subject: Welcome new Family To: MosaicDS@yahoogroup s.com Date: Wednesday, December 10, 2008, 4:56 AM Hi Everyone! We have a new family joining us today! Here is what they had to say... i am currently 27 weeks preggo with a son who has been diagnosed with mosaic trisomy 21. it has been characterized on 24 of 27 cells during an amnio and genetic testing. Welcome to our family! I am so glad you have joined us! Please feel free to ask any questions you have here. We will all be very happy to share our experiences with you! Twomey IMDSA Secretary & Website Admin Mum to 10mds and 8 http://www.imdsa. org http://www.twomeyco ntracting. com/reunion. htm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2008 Report Share Posted December 11, 2008 Hi , Welcome to the group! Congratulations on your new son! I felt all through my pregnancy that my son would have Ds, even though I did no testing other than a level two ultra sound which showed nothing. It was confirmed at birth the he had Ds but the next day it took 5 doctors to look at him to decide, and then they were not sure until a karyotype was done that confirmed Ds, However, I did not find out that he had mDs until he was 14 months old. You have joined a wonderful family here! I have learned so much here, and you will two!! mom to 13, 11, 8 and 6 mDs From: MosaicDS [mailto:MosaicDS ] On Behalf Of Kristy Colvin Sent: Wednesday, December 10, 2008 9:30 AM To: MosaicDS Subject: Re: Welcome new Family Welcome ! I am glad you have joined us! Please feel free to ask any questions you have here! We will all be very happy to share our experiences! Here is some more information from : Hi, My name is . I am in Pensacola, florida...I am a 30 yr old mom to 2 beautiful little girls arianna almost 3, kaylin 18 months, and soon to be daniel sebastian, (due march 7th 2009)....oh yeah, and married to my best friend clint.... i was never supposed to be able to have kids, and well um, 2 now 3...... was diagnosed at 12 weeks gest. to have a severe cystic hygroma that was very apparent behind his neck in the ultrasound. i was given an 80-90% chance the pregnancy was going to terminate b/c of the size of it. I disconnected from my pregnancy at about 8 weeks, b/c i knew something wasnt right. I was sick sick sick, and kept having dreams that my baby had DS. i know weird, noone believed me they just told me i was crazy and it was just me being a worrier.... well we had the u/s that found the hygroma, so they scheduled an amnio. 4 pokes to the belly later, we got fluid. 2 days later they called to tell me it was indeed a boy...yay....finally, that he had also had 27 cells tested and 24 of them were positive for down syndrome so that made it mosaic...i have been torn from my children a lot lately for drs appts, much needed sleep, and researching the internet trying to just find as much info as i can on it. sometimes i feel like i am working on a graduate degree in medicine or something. there is now something else in the factor......open heart surgery at birth.... he has an atrioventricular canal defect. i have been on a waiting list for a peds cardiologist here in town for 11 weeks now, well i got a call yesterday that my appt is now friday the 12th b/c she is leaving the country for 6 weeks.... my ob is positive i will be lucky if they get me to 34 weeks b/c he is already in position for birth and has been there 2 weeks....with 2 prior csections and all, we are now having to get 2nd and 3rd opinions on a local delivery or if i need to get the steriod shots and just go to shands hospital 8 hours from here so they can perform the surgery. so anyhow, thats basically my story for now, and ill share more as i get more or if you are interested.... thanks for letting me open up and join your group Kristy Colvin IMDSA President ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ International Mosaic Down Syndrome Association PH: Toll Free: 1-888-MDS-LINK http://www.imdsa.org http://www.mosaicmoments.today.com From: Twomey <mosaicdownsyndrome@... <mailto:mosaicdownsyndrome%40yahoo.com> > Subject: Welcome new Family To: MosaicDS <mailto:MosaicDS%40yahoogroups.com> Date: Wednesday, December 10, 2008, 4:56 AM Hi Everyone! We have a new family joining us today! Here is what they had to say... i am currently 27 weeks preggo with a son who has been diagnosed with mosaic trisomy 21. it has been characterized on 24 of 27 cells during an amnio and genetic testing. Welcome to our family! I am so glad you have joined us! Please feel free to ask any questions you have here. We will all be very happy to share our experiences with you! Twomey IMDSA Secretary & Website Admin Mum to 10mds and 8 http://www.imdsa. org http://www.twomeyco ntracting. com/reunion. htm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2008 Report Share Posted December 12, 2008 and Marriah - It is great that you know about the MDS and the heart defects now. When my daughter was born 9+ years ago, I did not know. We found out about the MDS at 6 months and we did not find out about the heart defects until she was 8 years old! She was 9 when she had the surgery to plug one hole (one closed on its own) and the other is still there but very tiny. She is no worse for wear. You will be VERY afraid whenever your child goes into the hospital - and you will not leave their side except when they go into the operating room. No matter how old they are. Darlene - mom to (12) and (9) On Wed, Dec 10, 2008 at 8:58 PM, marriah buhman wrote: > HI , My name is Marriah and my 18 month old son Gideon was > diagnosed with Mosaic Down's Syndrome at birth. He too had a heart defect > and needed surgery at 4 months old, and another at 15 months. Im not sure > why they told you it has to be done at birth, there may be a reason. But I > just want you to know that you are not alone, I know exactly how you feel > right now. The Doctors can do so much now its amazing, and Im sure your > child will go through with the surgery just fine, if he needs it (some holes > can close up on their own). If you have any questions on a personal manner > about this situation feel free to talk to me and ask me anything you want. > Just try and enjoy the pregnancy and know that your little boy will be just > fine! My son is doing great now. He says 3-4 words and can sign language 15 > words, he loves to swing and play with bubbles, he can feed himself with a > spoon, he loves to dance and make people laugh all the time. His new > favorite > game is peekaboo. He is on target or just a little behind in milestones, > but unfortunantly he did have the heart defects. But as far as those go, he > pulled through great and now is doing wonderful health wise. Good luck, and > congrats on your new coming boy! > Marriah Buhman email- athena3330@... <athena3330%40yahoo.com> > you can see his pics on the mosaicmoments website. Take care, and yes share > more if youd like! > > > > From: Twomey <mosaicdownsyndrome@ yahoo.com> > Subject: Welcome new Family > To: MosaicDS@yahoogroup s.com > Date: Wednesday, December 10, 2008, 4:56 AM > > Hi Everyone! > We have a new family joining us today! Here is what they had to say... > > i am currently 27 weeks preggo with a son who has been diagnosed with > mosaic trisomy 21. it has been characterized on 24 of 27 cells during an > amnio and genetic testing. > > Welcome to our family! I am so glad you have joined us! Please feel free to > ask any > questions you have here. We will all be very happy to share our experiences > with you! > > Twomey > IMDSA Secretary & Website Admin > Mum to 10mds and 8 > http://www.imdsa. org > http://www.twomeyco ntracting. com/reunion. htm > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2009 Report Share Posted January 28, 2009 CONGRATULATIONS on your new baby! I am sure he is just PRECIOUS! Tell us all about him! 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: Tue 1/27/2009 5:50 PM To: mosaicds Subject: Welcome New Family Hi Everyone We have a new family joining us today. Here is what they had to say... My 8 month old son was just diagnosed with MDS. Welcome to our family! I am glad you have joined us. Please tell us all about your baby boy. Feel free to ask any questions you may have here. We will all be happy to share our experiences. Kristy Mom to Arron 27, 23, Tim 22 MDS, Stevan 21 and Garrett 12 Kristy Colvin IMDSA President ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ International Mosaic Down Syndrome Association PH: Toll Free: 1-888-MDS-LINK http://www.imdsa.org <http://www.imdsa.org/> http://www.mosaicmoments.today.com <http://www.mosaicmoments.today.com/> SAVE THE DATE! JULY 10-12 Cincinnati, Ohio, USA BUILDING BRIDGES FOR DOWN SYNDROME RESEARCH & AWARENESS CONFERENCE Quote Link to comment Share on other sites More sharing options...
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