Guest guest Posted September 29, 2008 Report Share Posted September 29, 2008 Welcome new family - I have a daughter with MDS who is almost 10 - what is your daughter's name and where are you located? Darlene - Mom to (11) and (9) > Hi everyone! > We have another new family joining us today. Here is what they had to > say... > > I have a daughter who is almost 11 who has MDS and I want to connect with > others who have kids with MDS > > Welcome to our family! I am so glad you have joined us! Please tell us all > about you and your daughter. What are your names? Please feel free to ask > any questions and join in our conversations. I look forward to getting to > know more about you and your family! > > Kristy > Mom to Arron 26, 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.mosaicmoments.today.com > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2008 Report Share Posted November 29, 2008 Hi Everyone! We have a new family joining us today! Here is what they had to say... I have an almost 3 yr old daughter who was diagnosed with MDS and I would like to be able to talk to other parents whose children have MDS. Welcome to our family! I am so glad you have joined us! Please tell us all about you and your little girl! Please feel free to ask any questions you have here. We will all be very happy to share our experiences with you! 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.mosaicmoments.today.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2008 Report Share Posted November 29, 2008 Hi Lindsae Glad that you are here! Congratulations on your upcoming baby! Does Maegan receive any OT, PT or ST? Is she having any delays in speech? Where do you live? We may have families in your area. 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 Subject: Re: Welcome new family! To: MosaicDS Date: Saturday, November 29, 2008, 12:38 PM Hi All! I guess I could've done a better job of introducing myself and my family. My name is Lindsae and I've been married to my husband for 10 yrs now. We have 2 daughters, Kayleigh, 7 and Maegan who will be 3 next month. We're also expecting our 3rd in May. Maegan was diagnosed with MDS via an amnio. So far she exhibits no physical or mental effects but we are always on the lookout so that we can address any thing that may come up at a later date. Thanks for the big welcome! Lindsae Kayleigh 7 and Maegan 2 (mds) > > Hi Everyone! > We have a new family joining us today! Here is what they had to say... > > I have an almost 3 yr old daughter who was diagnosed with MDS and I > would like to be able to talk to other parents whose children have MDS. > > > Welcome to our family! I am so glad you have joined us! Please tell us all about you and your little girl! Please feel free to ask any questions you have here. We will all be very happy to share our experiences with you! > > 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.mosaicmo ments.today. com > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2009 Report Share Posted January 9, 2009 Hi Kristi, I have a daughter who has MDS (age 26) and we live in Durham, NC. Just thought since we must live close to each other, I'd offer my support in any way you may need it. K. > Thank you for the welcome. We live in NC & are beginning the > process to determine if our 9 month old daughter, nna, has > MDS. nna has had digestive issues since birth and is being > treated by a GI doctor. Since her birth, my husband and are have > had doubts if this is nna's only health issue. We recently > went to a new pediatrician for a second opinion. She recognized > some dysmorphic facial features & has refered us to a geneticist at > UNC. We have our first appointment this Tuesday. We don't know > what to expect or if MDS will be the ultimate diagnosis. I'm hoping > to get information from others about when/how their children were > diagnosed & what symptoms led to that diagnosis. Thanks again for > the welcome! > Kristi > > > > > Hi Everyone > > We have a new family joining us today. Here is what they had to > say.... > > > > We are in the preliminary stages of determining if our 9 month old > daughter has mDs. > > > > Welcome to our family! I am so glad you have joined us! Please > tell us all about your daughter and feel free to ask any questions > that you may have. We will all be very happy to share our > experiences with you. > > > > 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.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...
Guest guest Posted January 9, 2009 Report Share Posted January 9, 2009 Hi Kristi, Welcome to the group! Our daughter Eva (8 months) was diagnosed at one week old because the house pediatrician (our pediatrician didn't have privileges at the hospital where we delivered) thought Eva had the dysmorphic facial features. From the moment she left the room, I asked every person who stepped foot in my room...doctor, nurse, janitor, EVERYONE, if they could see the features. They all said no. Two days later, our own pediatrician said he didn't see it, but he would run the bloodwork to " put our minds at ease. " Someone in the group recently mentioned that looking at their child was like looking through a prism; sometimes you see a flash of red, sometimes green. It's the same when I look at Eva, sometimes I really see the features around her eyes, and bridge of her nose, other times, I don't see it at all and think she just looks exactly like my other two kids did as babies. If you do get an MDS diagnosis, it has been my experience that my daughter has been right on track developmentally (so far), and she has actually been ahead of her brother and sister on some things. And at the rate my son is going with still soaking a pull-up at night...Eva may be fully potty trained before he is. I hope everything goes well on Tuesday. Keep us posted. All the best, Kyra Mom to Ethan (6), Ellie (3), and Eva (8 months*MDS) Cleveland, OH Subject: Re: Welcome new family! To: MosaicDS Date: Thursday, January 8, 2009, 9:48 PM Thank you for the welcome. We live in NC & are beginning the process to determine if our 9 month old daughter, nna, has MDS. nna has had digestive issues since birth and is being treated by a GI doctor. Since her birth, my husband and are have had doubts if this is nna's only health issue. We recently went to a new pediatrician for a second opinion. She recognized some dysmorphic facial features & has refered us to a geneticist at UNC. We have our first appointment this Tuesday. We don't know what to expect or if MDS will be the ultimate diagnosis. I'm hoping to get information from others about when/how their children were diagnosed & what symptoms led to that diagnosis. Thanks again for the welcome! Kristi > > Hi Everyone > We have a new family joining us today. Here is what they had to say.... > > We are in the preliminary stages of determining if our 9 month old daughter has mDs. > > Welcome to our family! I am so glad you have joined us! Please tell us all about your daughter and feel free to ask any questions that you may have. We will all be very happy to share our experiences with you. > > 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.mosaicmo ments.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...
Guest guest Posted January 21, 2009 Report Share Posted January 21, 2009 Kristy/ - When you guys get it figured out, let us know because now you have my curiosity peaked is there another type of MDS other than MTDS - Like an MRDS (R for Ring).... Darlene - Mom to (12) and (9) > Hi > I would love to call you on the phone and see if I can help you further > with explaining this. If you can give me your number (my email address is > Kristy@... <Kristy%40imdsa.org> ) Or you are welcome to call us at > the phone numbers below. > > 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 > SAVE THE DATE! JULY 10-12 Cincinnati, Ohio, USA > BUILDING BRIDGES FOR DOWN SYNDROME > RESEARCH & AWARENESS CONFERENCE > > > > From: <lcc92580@... <lcc92580%40yahoo.com>> > Subject: Re: Welcome new family! > To: MosaicDS <MosaicDS%40yahoogroups.com> > Date: Wednesday, January 21, 2009, 8:09 AM > > I am new to learning how this whole message board thing works, so > > forgive me if I am doing it wrong!! My son Owen, is 10 months old and > > was referred to a geneticist for testing mainly due to his tongue > > being out most of the time. He is not significantly delayed, but is > > on the slower range of normal for sure. As far as the partial > > mosaicism, that is what we were told by our geneticist. I am thinking > > that it is because he does not have a full extra chromosome in any of > > the cells that they saw. Instead, he has another condition, called > > Ring 21, which seems even more rare than mosaic down syndrome. In his > > case, this means he has a very tiny ring (where the extra chromosome > > broke at the ends and fused together)instead of the full extra > > chromosome. It is all still very confusing to me though, so that is > > the best I can do to try and explain it!! I do have the papers, but > > am not sure what I am looking for as far as the karyotype??? This is > > all very new information, as we just got our results last Thursday. I > > can't wait to look through the discussions and pictures, and learn > > from everyone more about this. I am sure I will have many questions. > > Thanks so much!!! > > > > > > > > > > Hi Everyone > > > We have another new family joining us today. Here is what they had > > to say.... > > > > > > My son was just diagnosed with " partial " mosaic down syndrome last week, > > > and we are having a very difficult time understanding/ coping with this. > > > We are looking for information and support! > > > Thanks > > > > > > Welcome to our family! I am so glad you have joined us! Please tell > > us all about your son (how old is he?) Can you explain what you mean > > by " partial " mosaic Down syndrome? If you have the karyotype paper > > that the doctor's issued, I can probably help you better understand > > what this means. Please feel free to ask any questions you have here! > > We will all be very happy to share our experiences with you! > > > > > > 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.mosaicmo ments.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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