Guest guest Posted October 9, 2007 Report Share Posted October 9, 2007 Welcome to our group. What is your son's name? Is he your first child? I am the mother of 3, Shyanna is 11, she was born in April of 96, diagnosed with mds when she was 6 days old, the day we left the hospital. Shayla is 8, her and her sister are best friends. I wish my sister and I were that close growing up. = ) We just recently had a new addition to our family as well. Wyatt is 4 1/2 months old. He's starting to teeth already. (ugh!) The thing I like most about the group is when you are experiencing something and would like to get info or share with someone, this is the place to do it. I've gotten wonderful information and advice to help me along the way. Again, welcome to the group and tell us all about your bundle of joy! Bobbie New Parents! Hi Everyone We have a new family joining us today. Here is what they had to say... My son was diagnosed with MDS 4 days ago. He is only 2 weeks old. We are looking for information and support from other parents. Welcome to our family! Congratulations on your new baby boy!!!! Please tell us all about him. What is his name? Where do you live? We may have families in your area. Please feel free to ask any questions you may have concerning MDS. No question is a dumb question and we will all be very happy to share our experiences with you! I look forward to hearing more about you and your new baby! Kristy Colvin IMDSA President Mom to Arron 25, 22, Tim 21 MDS, Stevan 20 and Garrett 11 www.imdsa.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2007 Report Share Posted October 9, 2007 Welcome to the group! We hope you find the information or just support that you're looking for. I know it was overwhelming for me when we first found out and couldn't find any information. There have been many posts over the years about things you can't find in any books. Things that parents share and I find myself saying, " hey, me too! " It has been such a blessing to have this group so when you have questions, ask away! There's always someone who has been in the same boat before. To introduce myself a little bit, I'm the Newsletter Editor for IMDSA and I have 3 kids - 1 boy and 2 girls. Our online newsletter, available to paid members of IMDSA, is full of information, tips, articles from professionals and more. Just look on our website for more information, www.imdsa.com. So, welcome to our group and tell us all about your little boy! We even like it when you just want to brag! ;o) IMDSA Newsletter Editor Mom to Aidan (mds) 5, a 3, 20 months Kristy Colvin wrote: Hi Everyone We have a new family joining us today. Here is what they had to say... My son was diagnosed with MDS 4 days ago. He is only 2 weeks old. We are looking for information and support from other parents. Welcome to our family! Congratulations on your new baby boy!!!! Please tell us all about him. What is his name? Where do you live? We may have families in your area. Please feel free to ask any questions you may have concerning MDS. No question is a dumb question and we will all be very happy to share our experiences with you! I look forward to hearing more about you and your new baby! Kristy Colvin IMDSA President Mom to Arron 25, 22, Tim 21 MDS, Stevan 20 and Garrett 11 www.imdsa.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2007 Report Share Posted October 9, 2007 Welcome to our group. I am so glad you found us. First of all, congratulations on the birth of you new son. Is he your only child? I can't wait to hear all about him. My name is Donna and I am grandmother to Adam who is 5 years old and has mds. I also have two granddaughters - Skylar 5 and Mia 11 months. Donna - gram to Adam 5 mds and the girls Membership Chairperson Kristy Colvin wrote: Hi Everyone We have a new family joining us today. Here is what they had to say... My son was diagnosed with MDS 4 days ago. He is only 2 weeks old. We are looking for information and support from other parents. Welcome to our family! Congratulations on your new baby boy!!!! Please tell us all about him. What is his name? Where do you live? We may have families in your area. Please feel free to ask any questions you may have concerning MDS. No question is a dumb question and we will all be very happy to share our experiences with you! I look forward to hearing more about you and your new baby! Kristy Colvin IMDSA President Mom to Arron 25, 22, Tim 21 MDS, Stevan 20 and Garrett 11 www.imdsa.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2007 Report Share Posted October 10, 2007 I'm not sure if being premature is common or not. Shyanna was a week overdue, I was induced. I had a 12 hour labor with her. I think that's just me though, my other two children were both about 12 hours as well. We didn't know before hand. Shyanna was born at 7 pm and the doctor suspected that she had DS by some of her features. Her oxygen level was also low so he suspected a heart defect. He came into our room at 4 am and told us about both of these suspisions. She was taken to Marshfield to the NICU where we stayed for 6 days. They found out she had an AV canal defect. We took this very hard, knowing that our little baby would have to have open heart surgery to repair the defect. We learned of the MDS the day we left the hospital. We were more concerned about the heart defect at the time. As for what the future held, we lived in the here and now until after her first heart surgery. What do you do at Shriners hospital? Bobbie Re: New Parents! Thanks for the warm welcome! Just knowing that this support group exists has made accepting my son's diagnosis easier. His name is Miles and he was born 4 weeks prematurely on 9/19. He is our first and probably only child. I hear that being born prematurely is common with MDS, as is having a short labor. I labored for only 6 hours. I'm wondering what everyone else's experience was with that. I haven't been too sad or scared by the diagnosis. I work at Shriners Hospital here in Portland, OR where we view disability differently. We also kind of learned about Miles' diagnosis gently. There were some minor signs on the first ultrasound and then some clues while he was in the NICU. It was the chromosome test that made it definitive. I hear that the percent of cells affected does not determine development or physical manifestations. Does anyone have any more information about this? We haven't even met with a genetic counselor yet, so I'm sure I'll get some answers then. I'm also sure that I have a lot of the same questions that many of you had in the first few weeks after receiving the diagnosis. I know that I have to stop looking for clues of what the future will bring. In the mean time I'm just loving and caring for my beautiful and perfect son. My husband and I would love to meet a family or two in the Portland, OR area, maybe not right away, but eventually. I'm still settling in at home after our week in the NICU, not to mention all of the upcoming appointments. Thanks, a > Hi Everyone > We have a new family joining us today. Here is what they had to say... > > My son was diagnosed with MDS 4 days ago. He is only 2 weeks old. We are looking for information and support from other parents. > > Welcome to our family! Congratulations on your new baby boy!!!! Please tell us all about him. What is his name? Where do you live? We may have families in your area. Please feel free to ask any questions you may have concerning MDS. No question is a dumb question and we will all be very happy to share our experiences with you! > > I look forward to hearing more about you and your new baby! > > Kristy Colvin > IMDSA President > Mom to Arron 25, 22, Tim 21 MDS, Stevan 20 and Garrett 11 > www.imdsa.com > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2007 Report Share Posted October 11, 2007 Hello a!! We are so glad that you found us!! I am Lipscomb Sund, the research chairperson for the IMDSA. We are doing all that we can to recruit families and researchers for studies on Down syndrome/ mosaic Down syndrome. I realize that it may be too soon to even think about getting your child and your family involved in a research project but I wanted to let you know that I am here if you have any questions, thoughts, or ideas on mosaic Ds research Sincerely, Lipscomb Sund IMDSA Research Chairperson Graduate Student Genetic Counseling Molecular and Developmental Biology Cincinnati Children's Hospital Medical Center University of Cincinnati > > I'm not sure if being premature is common or not. Shyanna was a week > overdue, I was induced. I had a 12 hour labor with her. I think that's just > me though, my other two children were both about 12 hours as well. > > We didn't know before hand. Shyanna was born at 7 pm and the doctor > suspected that she had DS by some of her features. Her oxygen level was also > low so he suspected a heart defect. He came into our room at 4 am and told > us about both of these suspisions. She was taken to Marshfield to the NICU > where we stayed for 6 days. They found out she had an AV canal defect. We > took this very hard, knowing that our little baby would have to have open > heart surgery to repair the defect. We learned of the MDS the day we left > the hospital. We were more concerned about the heart defect at the time. As > for what the future held, we lived in the here and now until after her first > heart surgery. > > What do you do at Shriners hospital? > > Bobbie > > Re: New Parents! > > Thanks for the warm welcome! Just knowing that this support group > exists has made accepting my son's diagnosis easier. His > name is Miles and he was born 4 weeks prematurely on 9/19. He is our > first and probably only child. I hear that being born prematurely is > common with MDS, as is having a short labor. I labored for only 6 > hours. I'm wondering what everyone else's experience was with that. > > I haven't been too sad or scared by the diagnosis. I work at Shriners > Hospital here in Portland, OR where we view disability differently. We > also kind of learned about Miles' diagnosis gently. There were some > minor signs on the first ultrasound and then some clues while he was > in the NICU. It was the chromosome test that made it definitive. > > I hear that the percent of cells affected does not determine > development or physical manifestations. Does anyone have any more > information about this? We haven't even met with a genetic counselor > yet, so I'm sure I'll get some answers then. I'm also sure that I > have a lot of the same questions that many of you had in the first few > weeks after receiving the diagnosis. I know that I have to stop > looking for clues of what the future will bring. In the mean time I'm > just loving and caring for my beautiful and perfect son. > > My husband and I would love to meet a family or two in the Portland, > OR area, maybe not right away, but eventually. I'm still settling in > at home after our week in the NICU, not to mention all of the upcoming > appointments. > > Thanks, a > > > > Hi Everyone > > We have a new family joining us today. Here is what they had to say... > > > > My son was diagnosed with MDS 4 days ago. He is only 2 weeks old. We > are looking for information and support from other parents. > > > > Welcome to our family! Congratulations on your new baby boy!!!! > Please tell us all about him. What is his name? Where do you live? We > may have families in your area. Please feel free to ask any questions > you may have concerning MDS. No question is a dumb question and we > will all be very happy to share our experiences with you! > > > > I look forward to hearing more about you and your new baby! > > > > Kristy Colvin > > IMDSA President > > Mom to Arron 25, 22, Tim 21 MDS, Stevan 20 and Garrett 11 > > www.imdsa.com > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2007 Report Share Posted October 11, 2007 Hello a, Welcome to the group, and congratulations on your bundle of joy. I am the father Isabelle (3 1/2 year- MDS) and Katelyn (11 months) , additionally I am the International Vice President for IMDSA, and on top of assisting in spreading awareness internationally, I am also responsible to recruiting and directing the Family Connect Representatives, who volunteer to assist spread awarness of MDS and contact new families like yourself. Unfortunately we do not have a Family Connect Representative in the Portland area, but we do have a few families in Oregon that, when you are ready, I will be glad to contact to see if they are willing to be a point of contact for you. However, in the mean time ,myself and the other member are here to share our stories, listen to your joys, and answer your question. Again, welcome to the group, and I look forward to getting to know you and your family. Welch IMDSA International Vice President. > > Hi Everyone > > We have a new family joining us today. Here is what they had to say... > > > > My son was diagnosed with MDS 4 days ago. He is only 2 weeks old. We > are looking for information and support from other parents. > > > > Welcome to our family! Congratulations on your new baby boy!!!! > Please tell us all about him. What is his name? Where do you live? We > may have families in your area. Please feel free to ask any questions > you may have concerning MDS. No question is a dumb question and we > will all be very happy to share our experiences with you! > > > > I look forward to hearing more about you and your new baby! > > > > Kristy Colvin > > IMDSA President > > Mom to Arron 25, 22, Tim 21 MDS, Stevan 20 and Garrett 11 > > www.imdsa.com > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2007 Report Share Posted October 11, 2007 Hi and congratulations on your new baby! Our daughter Mahrya was only 2 weeks early, but she did come fast. She was my #6 child and none of my labors was long, although she took the cake. Mahrya came so quickly my husband delivered her in our van on the way to the hospital. We had no idea she had mds at this time, ultra sounds were all normal, and we chose not to do the triple screen. Luckily she has no medical problems at all. she was 7 and a half pounds and was 20.5 inches at birth. She just went in to the dr. for her yearly check up (11 years old) and she is on the 50 percentile in height and about the 35 for weight all on normal growth charts. Again congradualations on your son's birth! Luanne mom to Mahrya 11 mds, Ben 12, Alan 19, Sandy 21, Steve 23, Dan 24 Bobbie Mayfield wrote: I'm not sure if being premature is common or not. Shyanna was a week overdue, I was induced. I had a 12 hour labor with her. I think that's just me though, my other two children were both about 12 hours as well. We didn't know before hand. Shyanna was born at 7 pm and the doctor suspected that she had DS by some of her features. Her oxygen level was also low so he suspected a heart defect. He came into our room at 4 am and told us about both of these suspisions. She was taken to Marshfield to the NICU where we stayed for 6 days. They found out she had an AV canal defect. We took this very hard, knowing that our little baby would have to have open heart surgery to repair the defect. We learned of the MDS the day we left the hospital. We were more concerned about the heart defect at the time. As for what the future held, we lived in the here and now until after her first heart surgery. What do you do at Shriners hospital? Bobbie Re: New Parents! Thanks for the warm welcome! Just knowing that this support group exists has made accepting my son's diagnosis easier. His name is Miles and he was born 4 weeks prematurely on 9/19. He is our first and probably only child. I hear that being born prematurely is common with MDS, as is having a short labor. I labored for only 6 hours. I'm wondering what everyone else's experience was with that. I haven't been too sad or scared by the diagnosis. I work at Shriners Hospital here in Portland, OR where we view disability differently. We also kind of learned about Miles' diagnosis gently. There were some minor signs on the first ultrasound and then some clues while he was in the NICU. It was the chromosome test that made it definitive. I hear that the percent of cells affected does not determine development or physical manifestations. Does anyone have any more information about this? We haven't even met with a genetic counselor yet, so I'm sure I'll get some answers then. I'm also sure that I have a lot of the same questions that many of you had in the first few weeks after receiving the diagnosis. I know that I have to stop looking for clues of what the future will bring. In the mean time I'm just loving and caring for my beautiful and perfect son. My husband and I would love to meet a family or two in the Portland, OR area, maybe not right away, but eventually. I'm still settling in at home after our week in the NICU, not to mention all of the upcoming appointments. Thanks, a > Hi Everyone > We have a new family joining us today. Here is what they had to say... > > My son was diagnosed with MDS 4 days ago. He is only 2 weeks old. We are looking for information and support from other parents. > > Welcome to our family! Congratulations on your new baby boy!!!! Please tell us all about him. What is his name? Where do you live? We may have families in your area. Please feel free to ask any questions you may have concerning MDS. No question is a dumb question and we will all be very happy to share our experiences with you! > > I look forward to hearing more about you and your new baby! > > Kristy Colvin > IMDSA President > Mom to Arron 25, 22, Tim 21 MDS, Stevan 20 and Garrett 11 > www.imdsa.com > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2007 Report Share Posted October 12, 2007 Congratulations on the birth of your son! Mom to Mom don’t worry about what the future will bring. No one knows what the future has in store for any of our children. Someone once said that to me and I hold thoughs words to be so true! is my fourth child, and I would have ten more like him! I truly believe all of our children are a blessing and they have a meaning and a purpose and will find their way in this world. Don’t focus so much on the future take it one day at a time and enjoy him! Mom to 12, 10, 7 and 4yrs and 10 months MDS From: MosaicDS [mailto:MosaicDS ] On Behalf Of a Peirson, N.D. Sent: Tuesday, October 09, 2007 6:03 PM To: MosaicDS Subject: Re: New Parents! Thanks for the warm welcome! Just knowing that this support group exists has made accepting my son's diagnosis easier. His name is Miles and he was born 4 weeks prematurely on 9/19. He is our first and probably only child. I hear that being born prematurely is common with MDS, as is having a short labor. I labored for only 6 hours. I'm wondering what everyone else's experience was with that. I haven't been too sad or scared by the diagnosis. I work at Shriners Hospital here in Portland, OR where we view disability differently. We also kind of learned about Miles' diagnosis gently. There were some minor signs on the first ultrasound and then some clues while he was in the NICU. It was the chromosome test that made it definitive. I hear that the percent of cells affected does not determine development or physical manifestations. Does anyone have any more information about this? We haven't even met with a genetic counselor yet, so I'm sure I'll get some answers then. I'm also sure that I have a lot of the same questions that many of you had in the first few weeks after receiving the diagnosis. I know that I have to stop looking for clues of what the future will bring. In the mean time I'm just loving and caring for my beautiful and perfect son. My husband and I would love to meet a family or two in the Portland, OR area, maybe not right away, but eventually. I'm still settling in at home after our week in the NICU, not to mention all of the upcoming appointments. Thanks, a > Hi Everyone > We have a new family joining us today. Here is what they had to say... > > My son was diagnosed with MDS 4 days ago. He is only 2 weeks old. We are looking for information and support from other parents. > > Welcome to our family! Congratulations on your new baby boy!!!! Please tell us all about him. What is his name? Where do you live? We may have families in your area. Please feel free to ask any questions you may have concerning MDS. No question is a dumb question and we will all be very happy to share our experiences with you! > > I look forward to hearing more about you and your new baby! > > Kristy Colvin > IMDSA President > Mom to Arron 25, 22, Tim 21 MDS, Stevan 20 and Garrett 11 > www.imdsa.com > > Quote Link to comment Share on other sites More sharing options...
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