Guest guest Posted January 20, 2008 Report Share Posted January 20, 2008 Hi Emma and welcome. Congrats on the new addition to your family. As everyone here can tell you we have all been through all of the emotions in one way or another that your family is going through. It is very overwhelming to hear a diagnosis like this. You really have turned to the right place. I have found everyone here to be very helpful, knowledgeable and supportive. I am pretty new to this also and I have found that by having people to discuss my feelings and concerns with it has helped me so much. I find myself asking questions all of the time and the advise I get here is so valuable. I am sure you and your family will feel the same way. I hope that when your sister and her husband get over the intial shock she will also join. Sue Isabella 1 --- Kristy Colvin wrote: > Hi Everyone > We have a new family joining us! Here is what Emma > had to say... > > > My sister gave birth to a beautiful baby girl 5 days > ago, she has been > diagnosed with mosaic downs syndrome, we are waiting > for test results on Wednesday so we will have all > the facts then. > For the moment we are suffering from a lack of > knowledge and experience. The initial thoughts were > of shock, anger and sadness but now the whole family > believe that the baby (Moya) is one of the luckiest > children alive, she has been born to the best > possible parents who will love and nurture her. > > > 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. Where do you live? We may have families > in your area! > > Also, please visit our website www.imdsa.com for > the most up-to-date information on mosaic Down > syndrome. > > I look forward to hearing more from you and your > family! > > Kristy Colvin > IMDSA President > Mom to Arron 26, 22, Tim 21 MDS, Stevan 20 > and Garrett 11 > WEAR YOUR JEANS ON GENES DAY! > www.imdsa.com/genesday.htm > > > > > > > > > > [Non-text portions of this message have been > removed] > > ________________________________________________________________________________\ ____ Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2008 Report Share Posted January 20, 2008 Welcome Emma, My name is Sylvia Wormley and I am the IMDSA Family Connect Coordinator. I live in Arizona and my youngest son has MDS. He is 8 years old and has an older brother who is 14. is in a regular classroom setting with an aide and is in the 2nd grade. I would like to invite you and your sister to join the Family Connect Program. I can then put you in contact with other families in your area. You can sign up by clicking on the following link. (https://imdsa.dabbledb.com/page/imdsa/0cf18f89-a719-43fd-b262-304294f36bb1) .. If you have any questions feel free to contact me at worms62@.... Sylvia Wormley Family Connect Coordinator Mom to - 8 (MDS) and - 14 _____ From: MosaicDS [mailto:MosaicDS ] On Behalf Of Kristy Colvin Sent: Sunday, January 20, 2008 7:56 AM To: mosaicds Subject: Welcome Aunt Emma! Hi Everyone We have a new family joining us! Here is what Emma had to say... My sister gave birth to a beautiful baby girl 5 days ago, she has been diagnosed with mosaic downs syndrome, we are waiting for test results on Wednesday so we will have all the facts then. For the moment we are suffering from a lack of knowledge and experience. The initial thoughts were of shock, anger and sadness but now the whole family believe that the baby (Moya) is one of the luckiest children alive, she has been born to the best possible parents who will love and nurture her. 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. Where do you live? We may have families in your area! Also, please visit our website www.imdsa.com for the most up-to-date information on mosaic Down syndrome. I look forward to hearing more from you and your family! Kristy Colvin IMDSA President Mom to Arron 26, 22, Tim 21 MDS, Stevan 20 and Garrett 11 WEAR YOUR JEANS ON GENES DAY! www.imdsa.com/genesday.htm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2008 Report Share Posted January 23, 2008 Hi Emma, Congratulations on the birth of your new niece. You are right, Moya is so fortuate to have been born into such a wonderful family! Moya will bring so much joy and love to your lives. Give your sister a big hug from us and let us know how she and Moya are doing! Sandy Mom to , , , and Kaylee (MDS 25 months old) --- Kristy Colvin wrote: > Hi Everyone > We have a new family joining us! Here is what Emma > had to say... > > > My sister gave birth to a beautiful baby girl 5 days > ago, she has been > diagnosed with mosaic downs syndrome, we are waiting > for test results on Wednesday so we will have all > the facts then. > For the moment we are suffering from a lack of > knowledge and experience. The initial thoughts were > of shock, anger and sadness but now the whole family > believe that the baby (Moya) is one of the luckiest > children alive, she has been born to the best > possible parents who will love and nurture her. > > > 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. Where do you live? We may have families > in your area! > > Also, please visit our website www.imdsa.com for > the most up-to-date information on mosaic Down > syndrome. > > I look forward to hearing more from you and your > family! > > Kristy Colvin > IMDSA President > Mom to Arron 26, 22, Tim 21 MDS, Stevan 20 > and Garrett 11 > WEAR YOUR JEANS ON GENES DAY! > www.imdsa.com/genesday.htm > > > > > > > > > > [Non-text portions of this message have been > removed] > > ________________________________________________________________________________\ ____ Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2008 Report Share Posted January 23, 2008 Hi Sandy, We got the test results today and it turns out that Moya has full downs – I am still not sure what the implications of this are. At the moment I feel hollow, it is harder as my sister is in Australia and we live in Spain. Everyone I have spoken to say that Down Syndrome children are the best thing that has happened to their family. It has brought everyone together and they are always the happiest children. I know it is not the end of the world and I am still happy that we have such a gorgeous little baby in the family but this new feeling I am experiencing has completely thrown me, it is not grief or pity more just ‘what now?’. I hope you know what I mean. I would love to hear your opinion and also some thoughts on what we can expect. The hospital were sure she was MDS as she has great muscle tone in her legs and does not have the crease across the palm of her hand. I look forward to hearing from you Thanks Emma Emma Haller emma@... 618627034 Re: Welcome Aunt Emma! Hi Emma, Congratulations on the birth of your new niece. You are right, Moya is so fortuate to have been born into such a wonderful family! Moya will bring so much joy and love to your lives. Give your sister a big hug from us and let us know how she and Moya are doing! Sandy Mom to , , , and Kaylee (MDS 25 months old) --- Kristy Colvin <HYPERLINK " mailto:imdsapresident%40imdsa.com " imdsapresident@-imdsa.com> wrote: > Hi Everyone > We have a new family joining us! Here is what Emma > had to say... > > > My sister gave birth to a beautiful baby girl 5 days > ago, she has been > diagnosed with mosaic downs syndrome, we are waiting > for test results on Wednesday so we will have all > the facts then. > For the moment we are suffering from a lack of > knowledge and experience. The initial thoughts were > of shock, anger and sadness but now the whole family > believe that the baby (Moya) is one of the luckiest > children alive, she has been born to the best > possible parents who will love and nurture her. > > > 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. Where do you live? We may have families > in your area! > > Also, please visit our website www.imdsa.com for > the most up-to-date information on mosaic Down > syndrome. > > I look forward to hearing more from you and your > family! > > Kristy Colvin > IMDSA President > Mom to Arron 26, 22, Tim 21 MDS, Stevan 20 > and Garrett 11 > WEAR YOUR JEANS ON GENES DAY! > www.imdsa.com/-genesday.-htm > > > > > > > > > > [Non-text portions of this message have been > removed] > > ____________-_________-_________-_________-_________-_________-_ Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. HYPERLINK " http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ " http://mobil e.-yahoo.com/-;_ylt=Ahu06i62sR-8HDtDypao8Wcj9tA-cJ Internal Virus Database is out-of-date. Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.19.5/1228 - Release Date: 16/01/2008 09:01 Internal Virus Database is out-of-date. Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.19.5/1228 - Release Date: 16/01/2008 09:01 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2008 Report Share Posted January 23, 2008 Emma, I think that I know exactly what you mean when you day, " what now? " . After Kaylee was born I did not believe that our lives would ever be the same. I did not know who we were anymore, how we fit into other people's lives. I felt very cold, like a shell of a person. I dont know if I can accurately describe the kind of shock that I was in but I can tell you that I have never experienced anything like that before. My family changed all of that for me. I know that your sister lives far away but your phone calls and your love will be one of the biggest helps to her. My sister, brother and parents jumped into action immediatly, just as you have by searching out help online. They laughed, they constantly told me how beautiful Kaylee was. They acknowledged that our medical situation was different from a typical newborn experience but their focus was on how much they loved me and how much they loved Kaylee. Because they acted so " normal " it made me feel " normal " again. Emma, thier love was exactly what I needed. Their focus on Kaylee as a baby instead of Kaylee's diagnosis helped me to focus on what was important and snapped me out of my state of shock. Emma, you are a wonderful sister, look at all that you have done for her so far. For now, only consider the diagnosis when it is medically necessary to do so, otherwise put that information on a shelf and focus purely on Moya as a baby. I would love to hear more about her, I am sure that she is such a wonderful child. Sandy--- Emma Haller wrote: > Hi Sandy, > > We got the test results today and it turns out that > Moya has full downs > – I am still not sure what the implications of this > are. > At the moment I feel hollow, it is harder as my > sister is in Australia > and we live in Spain. > Everyone I have spoken to say that Down Syndrome > children are the best > thing that has happened to their family. It has > brought everyone > together and they are always the happiest children. > I know it is not the end of the world and I am still > happy that we have > such a gorgeous little baby in the family but this > new feeling I am > experiencing has completely thrown me, it is not > grief or pity more just > ‘what now?’. > I hope you know what I mean. I would love to hear > your opinion and also > some thoughts on what we can expect. > > The hospital were sure she was MDS as she has great > muscle tone in her > legs and does not have the crease across the palm of > her hand. > > I look forward to hearing from you > > Thanks > > Emma > > Emma Haller > emma@... > 618627034 > > Re: Welcome Aunt Emma! > > Hi Emma, > > Congratulations on the birth of your new niece. You > are right, Moya is so fortuate to have been born > into > such a wonderful family! > > Moya will bring so much joy and love to your lives. > Give your sister a big hug from us and let us know > how > she and Moya are doing! > > Sandy > Mom to , , , and Kaylee (MDS 25 > months old) > --- Kristy Colvin <HYPERLINK > " mailto:imdsapresident%40imdsa.com " imdsapresident@-imdsa.com> > wrote: > > > Hi Everyone > > We have a new family joining us! Here is what Emma > > had to say... > > > > > > My sister gave birth to a beautiful baby girl 5 > days > > ago, she has been > > diagnosed with mosaic downs syndrome, we are > waiting > > for test results on Wednesday so we will have all > > the facts then. > > For the moment we are suffering from a lack of > > knowledge and experience. The initial thoughts > were > > of shock, anger and sadness but now the whole > family > > believe that the baby (Moya) is one of the > luckiest > > children alive, she has been born to the best > > possible parents who will love and nurture her. > > > > > > 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. Where do you live? We may have > families > > in your area! > > > > Also, please visit our website www.imdsa.com for > > the most up-to-date information on mosaic Down > > syndrome. > > > > I look forward to hearing more from you and your > > family! > > > > Kristy Colvin > > IMDSA President > > Mom to Arron 26, 22, Tim 21 MDS, Stevan 20 > > and Garrett 11 > > WEAR YOUR JEANS ON GENES DAY! > > www.imdsa.com/-genesday.-htm > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have been > > removed] > > > > > > ____________-_________-_________-_________-_________-_________-_ > Be a better friend, newshound, and > know-it-all with Yahoo! Mobile. Try it now. > HYPERLINK > " http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ " http://mobil > e.-yahoo.com/-;_ylt=Ahu06i62sR-8HDtDypao8Wcj9tA-cJ > > > Internal Virus Database is out-of-date. > Checked by AVG Free Edition. > Version: 7.5.516 / Virus Database: 269.19.5/1228 - > Release Date: > 16/01/2008 09:01 > > > Internal Virus Database is out-of-date. > Checked by AVG Free Edition. > Version: 7.5.516 / Virus Database: 269.19.5/1228 - > Release Date: > 16/01/2008 09:01 > > > > [Non-text portions of this message have been > removed] > > > > Become a member of IMDSA today at > http://www.imdsa.com > ******************************************************* > Purchase your MDS awareness bracelet today! > http://www.imdsa.com/bracelets > ************************************************************************** > 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 > ********************************************************* > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2008 Report Share Posted January 23, 2008 Hi Emma It is more than likely that Moya DOES have MDS. When doctors do the typical testing for Down syndrome, they only test 20 cells and of those cells they only look at 2-5. When a person has mosaic Down syndrome, they have only a percentage of the extra 21st chromosome. So...testing of MORE cells is OFTEN necessary in order to find the unaffected chromosomes. IMDSA polled our parents last year and out of 70 parents who responded, 15% had the first blood test that showed full Down syndrome. Then, after another more accurate test, results showed that their child had mosaic Down syndrome. We are going to work more on this study this year, to get more details. With all that said...even if she has Trisomy 21 Down syndrome, that doesn't mean she will not be able to do fantastic things! Many people with Down syndrome grow up to hold jobs, go to college, get married and lead a typical life. You should visit this website www.sujeet.com to read about a remarkable young man with Down syndrome! Stay with us Emma. We are here for you and your family! Kristy Emma Haller wrote: Hi Sandy, We got the test results today and it turns out that Moya has full downs – I am still not sure what the implications of this are. At the moment I feel hollow, it is harder as my sister is in Australia and we live in Spain. Everyone I have spoken to say that Down Syndrome children are the best thing that has happened to their family. It has brought everyone together and they are always the happiest children. I know it is not the end of the world and I am still happy that we have such a gorgeous little baby in the family but this new feeling I am experiencing has completely thrown me, it is not grief or pity more just ‘what now?’. I hope you know what I mean. I would love to hear your opinion and also some thoughts on what we can expect. The hospital were sure she was MDS as she has great muscle tone in her legs and does not have the crease across the palm of her hand. I look forward to hearing from you Thanks Emma Emma Haller emma@... 618627034 Re: Welcome Aunt Emma! Hi Emma, Congratulations on the birth of your new niece. You are right, Moya is so fortuate to have been born into such a wonderful family! Moya will bring so much joy and love to your lives. Give your sister a big hug from us and let us know how she and Moya are doing! Sandy Mom to , , , and Kaylee (MDS 25 months old) --- Kristy Colvin " mailto:imdsapresident%40imdsa.com " imdsapresident@-imdsa.com> wrote: > Hi Everyone > We have a new family joining us! Here is what Emma > had to say... > > > My sister gave birth to a beautiful baby girl 5 days > ago, she has been > diagnosed with mosaic downs syndrome, we are waiting > for test results on Wednesday so we will have all > the facts then. > For the moment we are suffering from a lack of > knowledge and experience. The initial thoughts were > of shock, anger and sadness but now the whole family > believe that the baby (Moya) is one of the luckiest > children alive, she has been born to the best > possible parents who will love and nurture her. > > > 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. Where do you live? We may have families > in your area! > > Also, please visit our website www.imdsa.com for > the most up-to-date information on mosaic Down > syndrome. > > I look forward to hearing more from you and your > family! > > Kristy Colvin > IMDSA President > Mom to Arron 26, 22, Tim 21 MDS, Stevan 20 > and Garrett 11 > WEAR YOUR JEANS ON GENES DAY! > www.imdsa.com/-genesday.-htm > > > > > > > > > > [Non-text portions of this message have been > removed] > > ____________-_________-_________-_________-_________-_________-_ Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. HYPERLINK " http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ " http://mobil e.-yahoo.com/-;_ylt=Ahu06i62sR-8HDtDypao8Wcj9tA-cJ Internal Virus Database is out-of-date. Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.19.5/1228 - Release Date: 16/01/2008 09:01 Internal Virus Database is out-of-date. Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.19.5/1228 - Release Date: 16/01/2008 09:01 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2008 Report Share Posted January 23, 2008 Thanks for your support, Moya is really beautiful, she was born with a mop of long blonde hair and much to my sister’s disbelief she is ruling the roost already at one week old (as a mum of three this is music to my ears and definitely how things are meant to progress). When I am on skype with her, my sister gets so annoyed as I don’t want to talk and instead just want to watch Moya carrying on. Before a feed she flails her arms and legs around before finally settling down and having a great feed. i think the whole thing was more of a shock as my sister had all the tests during pregnancy and only 1 doctor said there was a chance she had DS. I only heard of MDS for the first time when she was born. My sister really just wants life to go on as normal and not discuss it but I unfortunately need more questions answered so I can feel involved and hopefully help her out. I am not sure if she is going to get any more tests for the moment, my sister was too emotional to talk today after receiving the test results. That website of Sujeet is fantastic, his life is fuller than most people I know with ‘normal’ abilities. Thanks again Emma Emma Haller emma@... 618627034 Re: Welcome Aunt Emma! Hi Emma, Congratulations on the birth of your new niece. You are right, Moya is so fortuate to have been born into such a wonderful family! Moya will bring so much joy and love to your lives. Give your sister a big hug from us and let us know how she and Moya are doing! Sandy Mom to , , , and Kaylee (MDS 25 months old) --- Kristy Colvin " mailto:imdsapresid-ent%40imdsa.-com " imdsapreside-nt@-imdsa.-com> wrote: > Hi Everyone > We have a new family joining us! Here is what Emma > had to say... > > > My sister gave birth to a beautiful baby girl 5 days > ago, she has been > diagnosed with mosaic downs syndrome, we are waiting > for test results on Wednesday so we will have all > the facts then. > For the moment we are suffering from a lack of > knowledge and experience. The initial thoughts were > of shock, anger and sadness but now the whole family > believe that the baby (Moya) is one of the luckiest > children alive, she has been born to the best > possible parents who will love and nurture her. > > > 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. Where do you live? We may have families > in your area! > > Also, please visit our website www.imdsa.com for > the most up-to-date information on mosaic Down > syndrome. > > I look forward to hearing more from you and your > family! > > Kristy Colvin > IMDSA President > Mom to Arron 26, 22, Tim 21 MDS, Stevan 20 > and Garrett 11 > WEAR YOUR JEANS ON GENES DAY! > www.imdsa.com/--genesday.--htm > > > > > > > > > > [Non-text portions of this message have been > removed] > > ____________--_______________-__-______-___-_____-____-____-_____-_ Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. HYPERLINK " HYPERLINK " http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ " http://mobil e.-yahoo.com/-;_ylt=Ahu06i62sR-8HDtDypao8Wcj9tA-cJ " HYPERLINK " http://mobil " http://mobil e.-yahoo.com/--;_ylt=Ahu06i62s-R-8HDtDypao8Wcj9-tA-cJ Internal Virus Database is out-of-date. Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.19.5/1228 - Release Date: 16/01/2008 09:01 Internal Virus Database is out-of-date. Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.19.5/1228 - Release Date: 16/01/2008 09:01 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2008 Report Share Posted January 23, 2008 Emma I am sure right now it is difficult for your sister to talk about everything. This is a lot of information to process in her mind, but with time she will be more open to discuss matters. It is important that she treats Moya just like she would any other child. This will help with her growth and development and eventually with her adulthood. Sujeet is a remarkable young man and you are right! He has accomplished more than most of the average person does in a life time! Kristy Emma Haller wrote: Thanks for your support, Moya is really beautiful, she was born with a mop of long blonde hair and much to my sister’s disbelief she is ruling the roost already at one week old (as a mum of three this is music to my ears and definitely how things are meant to progress). When I am on skype with her, my sister gets so annoyed as I don’t want to talk and instead just want to watch Moya carrying on. Before a feed she flails her arms and legs around before finally settling down and having a great feed. i think the whole thing was more of a shock as my sister had all the tests during pregnancy and only 1 doctor said there was a chance she had DS. I only heard of MDS for the first time when she was born. My sister really just wants life to go on as normal and not discuss it but I unfortunately need more questions answered so I can feel involved and hopefully help her out. I am not sure if she is going to get any more tests for the moment, my sister was too emotional to talk today after receiving the test results. That website of Sujeet is fantastic, his life is fuller than most people I know with ‘normal’ abilities. Thanks again Emma Emma Haller emma@... 618627034 Re: Welcome Aunt Emma! Hi Emma, Congratulations on the birth of your new niece. You are right, Moya is so fortuate to have been born into such a wonderful family! Moya will bring so much joy and love to your lives. Give your sister a big hug from us and let us know how she and Moya are doing! Sandy Mom to , , , and Kaylee (MDS 25 months old) --- Kristy Colvin " mailto:imdsapresid-ent%40imdsa.-com " imdsapreside-nt@-imdsa.-com> wrote: > Hi Everyone > We have a new family joining us! Here is what Emma > had to say... > > > My sister gave birth to a beautiful baby girl 5 days > ago, she has been > diagnosed with mosaic downs syndrome, we are waiting > for test results on Wednesday so we will have all > the facts then. > For the moment we are suffering from a lack of > knowledge and experience. The initial thoughts were > of shock, anger and sadness but now the whole family > believe that the baby (Moya) is one of the luckiest > children alive, she has been born to the best > possible parents who will love and nurture her. > > > 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. Where do you live? We may have families > in your area! > > Also, please visit our website www.imdsa.com for > the most up-to-date information on mosaic Down > syndrome. > > I look forward to hearing more from you and your > family! > > Kristy Colvin > IMDSA President > Mom to Arron 26, 22, Tim 21 MDS, Stevan 20 > and Garrett 11 > WEAR YOUR JEANS ON GENES DAY! > www.imdsa.com/--genesday.--htm > > > > > > > > > > [Non-text portions of this message have been > removed] > > ____________--_______________-__-______-___-_____-____-____-_____-_ Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. HYPERLINK " HYPERLINK " http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ " http://mobil e.-yahoo.com/-;_ylt=Ahu06i62sR-8HDtDypao8Wcj9tA-cJ " HYPERLINK " http://mobil " http://mobil e.-yahoo.com/--;_ylt=Ahu06i62s-R-8HDtDypao8Wcj9-tA-cJ Internal Virus Database is out-of-date. Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.19.5/1228 - Release Date: 16/01/2008 09:01 Internal Virus Database is out-of-date. Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.19.5/1228 - Release Date: 16/01/2008 09:01 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2008 Report Share Posted January 23, 2008 Hi Emma Congratulations to your sister and the family on the birth of Moya. I'm sure she is a little treasure. I live in Melbourne Australia and I just wanted to let you know that each state here has a DS Association which you can contact and get an information pack sent out to you or your sister. I have done this here in as well has joining IMDSA. If you let me know what state she lives in I'll be able to give you the website details for that state. Fiona Mum to Hunter mds 3mths Re: Welcome Aunt Emma! > > Hi Emma, > > Congratulations on the birth of your new niece. You > are right, Moya is so fortuate to have been born into > such a wonderful family! > > Moya will bring so much joy and love to your lives. > Give your sister a big hug from us and let us know how > she and Moya are doing! > > Sandy > Mom to , , , and Kaylee (MDS 25 > months old) > --- Kristy Colvin <HYPERLINK > " mailto:imdsapresident%40imdsa.com " imdsapresident@-imdsa.com> wrote: > >> Hi Everyone >> We have a new family joining us! Here is what Emma >> had to say... >> >> >> My sister gave birth to a beautiful baby girl 5 days >> ago, she has been >> diagnosed with mosaic downs syndrome, we are waiting >> for test results on Wednesday so we will have all >> the facts then. >> For the moment we are suffering from a lack of >> knowledge and experience. The initial thoughts were >> of shock, anger and sadness but now the whole family >> believe that the baby (Moya) is one of the luckiest >> children alive, she has been born to the best >> possible parents who will love and nurture her. >> >> >> 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. Where do you live? We may have families >> in your area! >> >> Also, please visit our website www.imdsa.com for >> the most up-to-date information on mosaic Down >> syndrome. >> >> I look forward to hearing more from you and your >> family! >> >> Kristy Colvin >> IMDSA President >> Mom to Arron 26, 22, Tim 21 MDS, Stevan 20 >> and Garrett 11 >> WEAR YOUR JEANS ON GENES DAY! >> www.imdsa.com/-genesday.-htm >> >> >> >> >> >> >> >> >> >> [Non-text portions of this message have been >> removed] >> >> > > ____________-_________-_________-_________-_________-_________-_ > Be a better friend, newshound, and > know-it-all with Yahoo! Mobile. Try it now. HYPERLINK > " http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ " http://mobil > e.-yahoo.com/-;_ylt=Ahu06i62sR-8HDtDypao8Wcj9tA-cJ > > > Internal Virus Database is out-of-date. > Checked by AVG Free Edition. > Version: 7.5.516 / Virus Database: 269.19.5/1228 - Release Date: > 16/01/2008 09:01 > > > Internal Virus Database is out-of-date. > Checked by AVG Free Edition. > Version: 7.5.516 / Virus Database: 269.19.5/1228 - Release Date: > 16/01/2008 09:01 > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2008 Report Share Posted January 24, 2008 Hi Fiona, That is amazing. She lives in Brisbane, in the city itself. Did you know in advance that Hunter would be MDS? What advice can you give me to help my sister without dwelling on the fact that Baby Moya is MDS? I bought the books recommended by the MDS website – did you read these? Thanks for the help Emma Proud Aunt to Baby Moya (1 week old) Emma Haller emma@... 618627034 Re: Welcome Aunt Emma! Hi Emma Congratulations to your sister and the family on the birth of Moya. I'm sure she is a little treasure. I live in Melbourne Australia and I just wanted to let you know that each state here has a DS Association which you can contact and get an information pack sent out to you or your sister. I have done this here in as well has joining IMDSA. If you let me know what state she lives in I'll be able to give you the website details for that state. Fiona Mum to Hunter mds 3mths Re: Welcome Aunt Emma! > > Hi Emma, > > Congratulations on the birth of your new niece. You > are right, Moya is so fortuate to have been born into > such a wonderful family! > > Moya will bring so much joy and love to your lives. > Give your sister a big hug from us and let us know how > she and Moya are doing! > > Sandy > Mom to , , , and Kaylee (MDS 25 > months old) > --- Kristy Colvin <HYPERLINK > " mailto:imdsapresid-ent%40imdsa.-com " imdsapreside-nt@-imdsa.-com> wrote: > >> Hi Everyone >> We have a new family joining us! Here is what Emma >> had to say... >> >> >> My sister gave birth to a beautiful baby girl 5 days >> ago, she has been >> diagnosed with mosaic downs syndrome, we are waiting >> for test results on Wednesday so we will have all >> the facts then. >> For the moment we are suffering from a lack of >> knowledge and experience. The initial thoughts were >> of shock, anger and sadness but now the whole family >> believe that the baby (Moya) is one of the luckiest >> children alive, she has been born to the best >> possible parents who will love and nurture her. >> >> >> 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. Where do you live? We may have families >> in your area! >> >> Also, please visit our website www.imdsa.com for >> the most up-to-date information on mosaic Down >> syndrome. >> >> I look forward to hearing more from you and your >> family! >> >> Kristy Colvin >> IMDSA President >> Mom to Arron 26, 22, Tim 21 MDS, Stevan 20 >> and Garrett 11 >> WEAR YOUR JEANS ON GENES DAY! >> www.imdsa.com/--genesday.--htm >> >> >> >> >> >> >> >> >> >> [Non-text portions of this message have been >> removed] >> >> > > ____________--_______________-__-______-___-_____-____-____-_____-_ > Be a better friend, newshound, and > know-it-all with Yahoo! Mobile. Try it now. HYPERLINK > " HYPERLINK " http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ " http://mobil e.-yahoo.com/-;_ylt=Ahu06i62sR-8HDtDypao8Wcj9tA-cJ " HYPERLINK " http://mobil " http://mobil > e.-yahoo.com/--;_ylt=Ahu06i62s-R-8HDtDypao8Wcj9-tA-cJ > > > Internal Virus Database is out-of-date. > Checked by AVG Free Edition. > Version: 7.5.516 / Virus Database: 269.19.5/1228 - Release Date: > 16/01/2008 09:01 > > > Internal Virus Database is out-of-date. > Checked by AVG Free Edition. > Version: 7.5.516 / Virus Database: 269.19.5/1228 - Release Date: > 16/01/2008 09:01 > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2008 Report Share Posted January 24, 2008 Hi Emma The Down Syndrome Association of Queensland is www.dsaq.org.au I know the one in sends out a welcome pack to new families so I presume the one in QLD does as well. No we didn't know Hunter had MDS until he was born. We were told about 5 mins after he was born but we had to wait a week for the blood test to come back. It was a MASSIVE shock and I cried every day for at least 2 weeks but then one day I just woke up and accepted the fact and decided to move forward with everything. Everyone will be different and some may take more time and some less. Acceptance is the hardest part, I think once you accept the fact that your beautiful little child has MDS and life will be a little different to what you expected than you can move forward and get on with it. Give your sister time. She will get there. I know there were days when I would cry in the shower and pray that it was a bad dream and I was going to wake up soon and everything was going to be ok. I realise now that everything is still going to be ok, my son is still the love of my life and I'm going to give him the best chance possible to do everything he is going to want to do. I haven't read any of the books on the IMDSA website but I have read Down Syndrome: the Facts by Mark Selikowitz and Tuesday's Child by Kathy . Just give your sister time Emma, this early stage is the worse. I remember thinking after Hunter's diagnosis " I just wish it was 3 months down the track and I was ok with everything " . I didn't want to go through the grieving process as I knew how hard it was going to be. I had no doubt I would get there in the end but I also knew it was going to be the hardest part. I realise now you need to go through the grief in order to heal. I hope the website helps Emma. Let me know if you or your sister have any further questions. Cheers Fiona Mum to Hunter mds 3 mths Re: Welcome Aunt Emma! >> >> Hi Emma, >> >> Congratulations on the birth of your new niece. You >> are right, Moya is so fortuate to have been born into >> such a wonderful family! >> >> Moya will bring so much joy and love to your lives. >> Give your sister a big hug from us and let us know how >> she and Moya are doing! >> >> Sandy >> Mom to , , , and Kaylee (MDS 25 >> months old) >> --- Kristy Colvin <HYPERLINK >> " mailto:imdsapresid-ent%40imdsa.-com " imdsapreside-nt@-imdsa.-com> > wrote: >> >>> Hi Everyone >>> We have a new family joining us! Here is what Emma >>> had to say... >>> >>> >>> My sister gave birth to a beautiful baby girl 5 days >>> ago, she has been >>> diagnosed with mosaic downs syndrome, we are waiting >>> for test results on Wednesday so we will have all >>> the facts then. >>> For the moment we are suffering from a lack of >>> knowledge and experience. The initial thoughts were >>> of shock, anger and sadness but now the whole family >>> believe that the baby (Moya) is one of the luckiest >>> children alive, she has been born to the best >>> possible parents who will love and nurture her. >>> >>> >>> 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. Where do you live? We may have families >>> in your area! >>> >>> Also, please visit our website www.imdsa.com for >>> the most up-to-date information on mosaic Down >>> syndrome. >>> >>> I look forward to hearing more from you and your >>> family! >>> >>> Kristy Colvin >>> IMDSA President >>> Mom to Arron 26, 22, Tim 21 MDS, Stevan 20 >>> and Garrett 11 >>> WEAR YOUR JEANS ON GENES DAY! >>> www.imdsa.com/--genesday.--htm >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> [Non-text portions of this message have been >>> removed] >>> >>> >> >> ____________--_______________-__-______-___-_____-____-____-_____-_ >> Be a better friend, newshound, and >> know-it-all with Yahoo! Mobile. Try it now. HYPERLINK >> " HYPERLINK > " http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ " http://mobil > e.-yahoo.com/-;_ylt=Ahu06i62sR-8HDtDypao8Wcj9tA-cJ " HYPERLINK > " http://mobil " http://mobil >> e.-yahoo.com/--;_ylt=Ahu06i62s-R-8HDtDypao8Wcj9-tA-cJ >> >> >> Internal Virus Database is out-of-date. >> Checked by AVG Free Edition. >> Version: 7.5.516 / Virus Database: 269.19.5/1228 - Release Date: >> 16/01/2008 09:01 >> >> >> Internal Virus Database is out-of-date. >> Checked by AVG Free Edition. >> Version: 7.5.516 / Virus Database: 269.19.5/1228 - Release Date: >> 16/01/2008 09:01 >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2008 Report Share Posted January 25, 2008 Hi Emma Congratulations on the birth of Moya. My daughter Lily was born on 20 Dec 07 and was diagnosed with MDS 4 days later. Like your sister, her Dr thought she had MDS from the start. Also like your sister I went through a period of being very emotional and not being ready to contact associations etc. Fortunately my sister in law was very proactive, like yourself, and got in touch with Kristy right from the start and she forwarded me emails between the two of them. At the time, like your sister, I was not really ready for this and it did feel a little overwhelming and it upset me a little, but it made me contact IMDSA even though I was probably not quite ready, but as soon as I did it really helped me to start moving forward. So I have to admit that although it felt a little like she was interfering (although I know now that I needed this) it really helped me and 5 weeks down the track I am very appreciative of the little push she gave me. It also meant that the information pack from IMDSA arrived here a lot sooner than if I'd waited for me to get around to requesting this kind of material. Being that it had to come from the US to Oz, by the time it arrived I was well and truly thirsty for information and it was very helpful. So my little piece of encouragement to you is not to be put off by your sister's reaction to the news and her lack of readiness for further info at this stage. I think you are doing the right thing by helping her out because when she does get there, and she will get there, she will appreciate your efforts immensely. Narelle Mother to Lily (5 wks) MDS, Eve (17 mths) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2008 Report Share Posted January 25, 2008 Hi, Thanks for that, I have downloaded the support pack for new parents and sent it to her with the website address. I think she is still in the shock stage. Last night baby Moya slept from 2am until 10.15 – of course at around 9am my sister panicked and brought her to the hospital. She has got herself a lovely sleeper – I am jealous, my 3 (youngest is 2) have just started letting me sleep all night. Thanks again Emma Emma Haller emma@... 618627034 Re: Welcome Aunt Emma! Hi Emma The Down Syndrome Association of Queensland is www.dsaq.org.-au I know the one in sends out a welcome pack to new families so I presume the one in QLD does as well. No we didn't know Hunter had MDS until he was born. We were told about 5 mins after he was born but we had to wait a week for the blood test to come back. It was a MASSIVE shock and I cried every day for at least 2 weeks but then one day I just woke up and accepted the fact and decided to move forward with everything. Everyone will be different and some may take more time and some less. Acceptance is the hardest part, I think once you accept the fact that your beautiful little child has MDS and life will be a little different to what you expected than you can move forward and get on with it. Give your sister time. She will get there. I know there were days when I would cry in the shower and pray that it was a bad dream and I was going to wake up soon and everything was going to be ok. I realise now that everything is still going to be ok, my son is still the love of my life and I'm going to give him the best chance possible to do everything he is going to want to do. I haven't read any of the books on the IMDSA website but I have read Down Syndrome: the Facts by Mark Selikowitz and Tuesday's Child by Kathy . Just give your sister time Emma, this early stage is the worse. I remember thinking after Hunter's diagnosis " I just wish it was 3 months down the track and I was ok with everything " . I didn't want to go through the grieving process as I knew how hard it was going to be. I had no doubt I would get there in the end but I also knew it was going to be the hardest part. I realise now you need to go through the grief in order to heal. I hope the website helps Emma. Let me know if you or your sister have any further questions. Cheers Fiona Mum to Hunter mds 3 mths Re: Welcome Aunt Emma! >> >> Hi Emma, >> >> Congratulations on the birth of your new niece. You >> are right, Moya is so fortuate to have been born into >> such a wonderful family! >> >> Moya will bring so much joy and love to your lives. >> Give your sister a big hug from us and let us know how >> she and Moya are doing! >> >> Sandy >> Mom to , , , and Kaylee (MDS 25 >> months old) >> --- Kristy Colvin <HYPERLINK >> " mailto:imdsapresid--ent%40imdsa.--com " imdsapresid-e-nt@-imdsa.--com> > wrote: >> >>> Hi Everyone >>> We have a new family joining us! Here is what Emma >>> had to say... >>> >>> >>> My sister gave birth to a beautiful baby girl 5 days >>> ago, she has been >>> diagnosed with mosaic downs syndrome, we are waiting >>> for test results on Wednesday so we will have all >>> the facts then. >>> For the moment we are suffering from a lack of >>> knowledge and experience. The initial thoughts were >>> of shock, anger and sadness but now the whole family >>> believe that the baby (Moya) is one of the luckiest >>> children alive, she has been born to the best >>> possible parents who will love and nurture her. >>> >>> >>> 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. Where do you live? We may have families >>> in your area! >>> >>> Also, please visit our website www.imdsa.com for >>> the most up-to-date information on mosaic Down >>> syndrome. >>> >>> I look forward to hearing more from you and your >>> family! >>> >>> Kristy Colvin >>> IMDSA President >>> Mom to Arron 26, 22, Tim 21 MDS, Stevan 20 >>> and Garrett 11 >>> WEAR YOUR JEANS ON GENES DAY! >>> www.imdsa.com/---genesday.---htm >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> [Non-text portions of this message have been >>> removed] >>> >>> >> >> ____________---________-_____-__-__-___-___-_______-____--____-___ -__-_ >> Be a better friend, newshound, and >> know-it-all with Yahoo! Mobile. Try it now. HYPERLINK >> " HYPERLINK > " HYPERLINK " http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ " http://mobil e.-yahoo.com/-;_ylt=Ahu06i62sR-8HDtDypao8Wcj9tA-cJ " HYPERLINK " http://mobil " http://mobil > e.-yahoo.com/--;_ylt=Ahu06i62s-R-8HDtDypao8Wcj9-tA-cJ " HYPERLINK > " HYPERLINK " http://mobil " http://mobil " HYPERLINK " http://mobil " http://mobil >> e.-yahoo.com/---;_ylt=Ahu06i62-s-R-8HDtDypao8Wc-j9-tA-cJ >> >> >> Internal Virus Database is out-of-date. >> Checked by AVG Free Edition. >> Version: 7.5.516 / Virus Database: 269.19.5/1228 - Release Date: >> 16/01/2008 09:01 >> >> >> Internal Virus Database is out-of-date. >> Checked by AVG Free Edition. >> Version: 7.5.516 / Virus Database: 269.19.5/1228 - Release Date: >> 16/01/2008 09:01 >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2008 Report Share Posted January 25, 2008 LOL I am still waiting on my youngest to sleep through the night and he is 11 !!! I can just imagine your sister panicking over the baby sleeping too long. Babies tend to make us big worriers! Glad to hear Moya is fine and just wanting to sleep good! lol Kristy Emma Haller wrote: Hi, Thanks for that, I have downloaded the support pack for new parents and sent it to her with the website address. I think she is still in the shock stage. Last night baby Moya slept from 2am until 10.15 – of course at around 9am my sister panicked and brought her to the hospital. She has got herself a lovely sleeper – I am jealous, my 3 (youngest is 2) have just started letting me sleep all night. Thanks again Emma Emma Haller emma@... 618627034 Re: Welcome Aunt Emma! Hi Emma The Down Syndrome Association of Queensland is www.dsaq.org.-au I know the one in sends out a welcome pack to new families so I presume the one in QLD does as well. No we didn't know Hunter had MDS until he was born. We were told about 5 mins after he was born but we had to wait a week for the blood test to come back. It was a MASSIVE shock and I cried every day for at least 2 weeks but then one day I just woke up and accepted the fact and decided to move forward with everything. Everyone will be different and some may take more time and some less. Acceptance is the hardest part, I think once you accept the fact that your beautiful little child has MDS and life will be a little different to what you expected than you can move forward and get on with it. Give your sister time. She will get there. I know there were days when I would cry in the shower and pray that it was a bad dream and I was going to wake up soon and everything was going to be ok. I realise now that everything is still going to be ok, my son is still the love of my life and I'm going to give him the best chance possible to do everything he is going to want to do. I haven't read any of the books on the IMDSA website but I have read Down Syndrome: the Facts by Mark Selikowitz and Tuesday's Child by Kathy . Just give your sister time Emma, this early stage is the worse. I remember thinking after Hunter's diagnosis " I just wish it was 3 months down the track and I was ok with everything " . I didn't want to go through the grieving process as I knew how hard it was going to be. I had no doubt I would get there in the end but I also knew it was going to be the hardest part. I realise now you need to go through the grief in order to heal. I hope the website helps Emma. Let me know if you or your sister have any further questions. Cheers Fiona Mum to Hunter mds 3 mths Re: Welcome Aunt Emma! >> >> Hi Emma, >> >> Congratulations on the birth of your new niece. You >> are right, Moya is so fortuate to have been born into >> such a wonderful family! >> >> Moya will bring so much joy and love to your lives. >> Give your sister a big hug from us and let us know how >> she and Moya are doing! >> >> Sandy >> Mom to , , , and Kaylee (MDS 25 >> months old) >> --- Kristy Colvin >> " mailto:imdsapresid--ent%40imdsa.--com " imdsapresid-e-nt@-imdsa.--com> > wrote: >> >>> Hi Everyone >>> We have a new family joining us! Here is what Emma >>> had to say... >>> >>> >>> My sister gave birth to a beautiful baby girl 5 days >>> ago, she has been >>> diagnosed with mosaic downs syndrome, we are waiting >>> for test results on Wednesday so we will have all >>> the facts then. >>> For the moment we are suffering from a lack of >>> knowledge and experience. The initial thoughts were >>> of shock, anger and sadness but now the whole family >>> believe that the baby (Moya) is one of the luckiest >>> children alive, she has been born to the best >>> possible parents who will love and nurture her. >>> >>> >>> 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. Where do you live? We may have families >>> in your area! >>> >>> Also, please visit our website www.imdsa.com for >>> the most up-to-date information on mosaic Down >>> syndrome. >>> >>> I look forward to hearing more from you and your >>> family! >>> >>> Kristy Colvin >>> IMDSA President >>> Mom to Arron 26, 22, Tim 21 MDS, Stevan 20 >>> and Garrett 11 >>> WEAR YOUR JEANS ON GENES DAY! >>> www.imdsa.com/---genesday.---htm >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> [Non-text portions of this message have been >>> removed] >>> >>> >> >> ____________---________-_____-__-__-___-___-_______-____--____-___ -__-_ >> Be a better friend, newshound, and >> know-it-all with Yahoo! Mobile. Try it now. HYPERLINK >> " HYPERLINK > " HYPERLINK " http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ " http://mobil e.-yahoo.com/-;_ylt=Ahu06i62sR-8HDtDypao8Wcj9tA-cJ " HYPERLINK " http://mobil " http://mobil > e.-yahoo.com/--;_ylt=Ahu06i62s-R-8HDtDypao8Wcj9-tA-cJ " HYPERLINK > " HYPERLINK " http://mobil " http://mobil " HYPERLINK " http://mobil " http://mobil >> e.-yahoo.com/---;_ylt=Ahu06i62-s-R-8HDtDypao8Wc-j9-tA-cJ >> >> >> Internal Virus Database is out-of-date. >> Checked by AVG Free Edition. >> Version: 7.5.516 / Virus Database: 269.19.5/1228 - Release Date: >> 16/01/2008 09:01 >> >> >> Internal Virus Database is out-of-date. >> Checked by AVG Free Edition. >> Version: 7.5.516 / Virus Database: 269.19.5/1228 - Release Date: >> 16/01/2008 09:01 >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2008 Report Share Posted January 25, 2008 I did the same thing. When my daughter was less than a month I could not wake her up. I called the paramedic and ran across the street at midnight banging on my neighbors door. My neighbor is a pediatric nurse, she came running over in her nightgown. My neighbor and the paramedics assessed my daughter and she was fine. We had put water and everything on the baby and the baby was just sleeping soundly. It scared the hell out of me. My daughter is now 1 and she is still a sound sleeper. She goes to sleep around 9:30 and does not get up until 7:30 when we hear, " I'm Up " . We use to have to wake her up to feed her during the night. Now it is so nice that she sleeps through the night. Sue Re: Welcome Aunt Emma! >> >> Hi Emma, >> >> Congratulations on the birth of your new niece. You >> are right, Moya is so fortuate to have been born into >> such a wonderful family! >> >> Moya will bring so much joy and love to your lives. >> Give your sister a big hug from us and let us know how >> she and Moya are doing! >> >> Sandy >> Mom to , , , and Kaylee (MDS 25 >> months old) >> --- Kristy Colvin >> " mailto:imdsapresid --ent%40imdsa. --com " imdsapresi d-e-nt@-imdsa. --com> > wrote: >> >>> Hi Everyone >>> We have a new family joining us! Here is what Emma >>> had to say... >>> >>> >>> My sister gave birth to a beautiful baby girl 5 days >>> ago, she has been >>> diagnosed with mosaic downs syndrome, we are waiting >>> for test results on Wednesday so we will have all >>> the facts then. >>> For the moment we are suffering from a lack of >>> knowledge and experience. The initial thoughts were >>> of shock, anger and sadness but now the whole family >>> believe that the baby (Moya) is one of the luckiest >>> children alive, she has been born to the best >>> possible parents who will love and nurture her. >>> >>> >>> 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. Where do you live? We may have families >>> in your area! >>> >>> Also, please visit our website www.imdsa.com for >>> the most up-to-date information on mosaic Down >>> syndrome. >>> >>> I look forward to hearing more from you and your >>> family! >>> >>> Kristy Colvin >>> IMDSA President >>> Mom to Arron 26, 22, Tim 21 MDS, Stevan 20 >>> and Garrett 11 >>> WEAR YOUR JEANS ON GENES DAY! >>> www.imdsa.com/ ---genesday. ---htm >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> [Non-text portions of this message have been >>> removed] >>> >>> >> >> ____________ ---______ __-___ __-__-__- ___-___-_ ______ -____--__ __-___ -__-_ >> Be a better friend, newshound, and >> know-it-all with Yahoo! Mobile. Try it now. HYPERLINK >> " HYPERLINK > " HYPERLINK " http://mobile. yahoo.com/ ;_ylt=Ahu06i62sR 8HDtDypao8Wcj9tA cJ " http://mobil e.-yahoo.com/ -;_ylt=Ahu06i62s R-8HDtDypao8Wcj9 tA-cJ " HYPERLINK " http://mobil " http://mobil > e.-yahoo.com/ --;_ylt=Ahu06i62 s-R-8HDtDypao8Wc j9-tA-cJ " HYPERLINK > " HYPERLINK " http://mobil " http://mobil " HYPERLINK " http://mobil " http://mobil >> e.-yahoo.com/ ---;_ylt= Ahu06i62- s-R-8HDtDypao8Wc -j9-tA-cJ >> >> >> Internal Virus Database is out-of-date. >> Checked by AVG Free Edition. >> Version: 7.5.516 / Virus Database: 269.19.5/1228 - Release Date: >> 16/01/2008 09:01 >> >> >> Internal Virus Database is out-of-date. >> Checked by AVG Free Edition. >> Version: 7.5.516 / Virus Database: 269.19.5/1228 - Release Date: >> 16/01/2008 09:01 >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2008 Report Share Posted January 25, 2008 My daughter, Zephany, is now 19 months old. When she was born she was a sound sleeper and come home with her oxygen monitor and beli bed. She had 4 holes in her heart and leakage for the valves. It was scary for us when we couldn't get her to wake up. Her heart is now corrected but still has small leakage but no meds for it. I put her to bed at 8:30 and she will sleep until 10am. When she wakes up she just waits for me to come get her. She does not call for me to come get her yet tho she night sign mommy but I can't hear her do that. LOL Re: Welcome Aunt Emma! >> >> Hi Emma, >> >> Congratulations on the birth of your new niece. You >> are right, Moya is so fortuate to have been born into >> such a wonderful family! >> >> Moya will bring so much joy and love to your lives. >> Give your sister a big hug from us and let us know how >> she and Moya are doing! >> >> Sandy >> Mom to , , , and Kaylee (MDS 25 >> months old) >> --- Kristy Colvin >> " mailto:imdsapresid --ent%40imdsa. --com " imdsapresi >> d-e-nt@-imdsa. --com> > wrote: >> >>> Hi Everyone >>> We have a new family joining us! Here is what Emma >>> had to say... >>> >>> >>> My sister gave birth to a beautiful baby girl 5 days >>> ago, she has been >>> diagnosed with mosaic downs syndrome, we are waiting >>> for test results on Wednesday so we will have all >>> the facts then. >>> For the moment we are suffering from a lack of >>> knowledge and experience. The initial thoughts were >>> of shock, anger and sadness but now the whole family >>> believe that the baby (Moya) is one of the luckiest >>> children alive, she has been born to the best >>> possible parents who will love and nurture her. >>> >>> >>> 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. Where do you live? We may have families >>> in your area! >>> >>> Also, please visit our website www.imdsa.com for >>> the most up-to-date information on mosaic Down >>> syndrome. >>> >>> I look forward to hearing more from you and your >>> family! >>> >>> Kristy Colvin >>> IMDSA President >>> Mom to Arron 26, 22, Tim 21 MDS, Stevan 20 >>> and Garrett 11 >>> WEAR YOUR JEANS ON GENES DAY! >>> www.imdsa.com/ ---genesday. ---htm >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> [Non-text portions of this message have been >>> removed] >>> >>> >> >> ____________ ---______ __-___ __-__-__- ___-___-_ ______ -____--__ __-___ -__-_ >> Be a better friend, newshound, and >> know-it-all with Yahoo! Mobile. Try it now. HYPERLINK >> " HYPERLINK > " HYPERLINK " http://mobile. yahoo.com/ ;_ylt=Ahu06i62sR 8HDtDypao8Wcj9tA cJ " http://mobil e.-yahoo.com/ -;_ylt=Ahu06i62s R-8HDtDypao8Wcj9 tA-cJ " HYPERLINK " http://mobil " http://mobil > e.-yahoo.com/ --;_ylt=Ahu06i62 s-R-8HDtDypao8Wc j9-tA-cJ " HYPERLINK > " HYPERLINK " http://mobil " http://mobil " HYPERLINK " http://mobil " http://mobil >> e.-yahoo.com/ ---;_ylt= Ahu06i62- s-R-8HDtDypao8Wc -j9-tA-cJ >> >> >> Internal Virus Database is out-of-date. >> Checked by AVG Free Edition. >> Version: 7.5.516 / Virus Database: 269.19.5/1228 - Release Date: >> 16/01/2008 09:01 >> >> >> Internal Virus Database is out-of-date. >> Checked by AVG Free Edition. >> Version: 7.5.516 / Virus Database: 269.19.5/1228 - Release Date: >> 16/01/2008 09:01 >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2008 Report Share Posted January 25, 2008 Hi , I heard heart problems are common with DS children, was Zephany born with the holes in her heart? If so, were they diagnosed during pregnancy or after birth and when? I think you can guess where this concern is coming from.. I look forward to hearing from you Thanks Emma Emma Haller emma@... 618627034 Re: Welcome Aunt Emma! My daughter, Zephany, is now 19 months old. When she was born she was a sound sleeper and come home with her oxygen monitor and beli bed. She had 4 holes in her heart and leakage for the valves. It was scary for us when we couldn't get her to wake up. Her heart is now corrected but still has small leakage but no meds for it. I put her to bed at 8:30 and she will sleep until 10am. When she wakes up she just waits for me to come get her. She does not call for me to come get her yet tho she night sign mommy but I can't hear her do that. LOL Re: Welcome Aunt Emma! >> >> Hi Emma, >> >> Congratulations on the birth of your new niece. You >> are right, Moya is so fortuate to have been born into >> such a wonderful family! >> >> Moya will bring so much joy and love to your lives. >> Give your sister a big hug from us and let us know how >> she and Moya are doing! >> >> Sandy >> Mom to , , , and Kaylee (MDS 25 >> months old) >> --- Kristy Colvin >> " mailto:imdsapresid --ent%40imdsa. --com " imdsapresi >> d-e-nt@-imdsa. --com> > wrote: >> >>> Hi Everyone >>> We have a new family joining us! Here is what Emma >>> had to say... >>> >>> >>> My sister gave birth to a beautiful baby girl 5 days >>> ago, she has been >>> diagnosed with mosaic downs syndrome, we are waiting >>> for test results on Wednesday so we will have all >>> the facts then. >>> For the moment we are suffering from a lack of >>> knowledge and experience. The initial thoughts were >>> of shock, anger and sadness but now the whole family >>> believe that the baby (Moya) is one of the luckiest >>> children alive, she has been born to the best >>> possible parents who will love and nurture her. >>> >>> >>> 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. Where do you live? We may have families >>> in your area! >>> >>> Also, please visit our website www.imdsa.com for >>> the most up-to-date information on mosaic Down >>> syndrome. >>> >>> I look forward to hearing more from you and your >>> family! >>> >>> Kristy Colvin >>> IMDSA President >>> Mom to Arron 26, 22, Tim 21 MDS, Stevan 20 >>> and Garrett 11 >>> WEAR YOUR JEANS ON GENES DAY! >>> www.imdsa.com/ ---genesday. ---htm >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> [Non-text portions of this message have been >>> removed] >>> >>> >> >> ____________ ---______ __-___ __-__-__- ___-___-_ ______ -____--__ __-___ -__-_ >> Be a better friend, newshound, and >> know-it-all with Yahoo! Mobile. Try it now. HYPERLINK >> " HYPERLINK > " HYPERLINK " HYPERLINK " http://mobile. " http://mobile. yahoo.com/ ;_ylt=Ahu06i62sR 8HDtDypao8Wcj9tA cJ " HYPERLINK " http://mobil " http://mobil e.-yahoo.com/ -;_ylt=Ahu06i62s R-8HDtDypao8Wcj9 tA-cJ " HYPERLINK " HYPERLINK " http://mobil " http://mobil " HYPERLINK " http://mobil " http://mobil > e.-yahoo.com/ --;_ylt=Ahu06i62 s-R-8HDtDypao8Wc j9-tA-cJ " HYPERLINK > " HYPERLINK " HYPERLINK " http://mobil " http://mobil " HYPERLINK " http://mobil " http://mobil " HYPERLINK " HYPERLINK " http://mobil " http://mobil " HYPERLINK " http://mobil " http://mobil >> e.-yahoo.com/ ---;_ylt= Ahu06i62- s-R-8HDtDypao8Wc -j9-tA-cJ >> >> >> Internal Virus Database is out-of-date. >> Checked by AVG Free Edition. >> Version: 7.5.516 / Virus Database: 269.19.5/1228 - Release Date: >> 16/01/2008 09:01 >> >> >> Internal Virus Database is out-of-date. >> Checked by AVG Free Edition. >> Version: 7.5.516 / Virus Database: 269.19.5/1228 - Release Date: >> 16/01/2008 09:01 >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2008 Report Share Posted January 25, 2008 Emma - Your sister will need to take Moya for an Echocardiagram (sp?). (almost 9) had an EKG - had GI Surgery, many, many, many doctors visits but no one heard anything. She complained last April about her heart hurting so I took her to a cardiologist - she never complains. Turns out she had 3 holes in her heart (SILENT) - no one would have been able to hear anything, ever. One closed on its own, they could see the scar tissue. It also turned out what was bothering her was heartburn - God works in mysterious ways - if she had not had the heartburn we would not have known of the holes and now they are all closed. There are certain things that you need to do if your baby has MDS or DS - echo is one, test for AI is another - I am sure there a more but I don't remember. Darlene - Mom to (11) and (who will be 9 on 2/8) Darlene > Hi , > > I heard heart problems are common with DS children, was Zephany born > with the holes in her heart? > If so, were they diagnosed during pregnancy or after birth and when? > I think you can guess where this concern is coming from.. > > I look forward to hearing from you > > Thanks > Emma > > Emma Haller > emma@... <emma%40thehallers.com> > 618627034 > > Re: Welcome Aunt Emma! > > My daughter, Zephany, is now 19 months old. When she was born she was a > sound sleeper and come home with her oxygen monitor and beli bed. She > had 4 > holes in her heart and leakage for the valves. It was scary for us when > we > couldn't get her to wake up. Her heart is now corrected but still has > small > leakage but no meds for it. I put her to bed at 8:30 and she will sleep > until 10am. When she wakes up she just waits for me to come get her. She > > does not call for me to come get her yet tho she night sign mommy but I > can't hear her do that. LOL > > > Re: Welcome Aunt Emma! > >> > >> Hi Emma, > >> > >> Congratulations on the birth of your new niece. You > >> are right, Moya is so fortuate to have been born into > >> such a wonderful family! > >> > >> Moya will bring so much joy and love to your lives. > >> Give your sister a big hug from us and let us know how > >> she and Moya are doing! > >> > >> Sandy > >> Mom to , , , and Kaylee (MDS 25 > >> months old) > >> --- Kristy Colvin >> " mailto:imdsapresid --ent%40imdsa. > --com " imdsapresi > >> d-e-nt@-imdsa. --com> > > wrote: > >> > >>> Hi Everyone > >>> We have a new family joining us! Here is what Emma > >>> had to say... > >>> > >>> > >>> My sister gave birth to a beautiful baby girl 5 days > >>> ago, she has been > >>> diagnosed with mosaic downs syndrome, we are waiting > >>> for test results on Wednesday so we will have all > >>> the facts then. > >>> For the moment we are suffering from a lack of > >>> knowledge and experience. The initial thoughts were > >>> of shock, anger and sadness but now the whole family > >>> believe that the baby (Moya) is one of the luckiest > >>> children alive, she has been born to the best > >>> possible parents who will love and nurture her. > >>> > >>> > >>> 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. Where do you live? We may have families > >>> in your area! > >>> > >>> Also, please visit our website www.imdsa.com for > >>> the most up-to-date information on mosaic Down > >>> syndrome. > >>> > >>> I look forward to hearing more from you and your > >>> family! > >>> > >>> Kristy Colvin > >>> IMDSA President > >>> Mom to Arron 26, 22, Tim 21 MDS, Stevan 20 > >>> and Garrett 11 > >>> WEAR YOUR JEANS ON GENES DAY! > >>> www.imdsa.com/ ---genesday. ---htm > >>> > >>> > >>> > >>> > >>> > >>> > >>> > >>> > >>> > >>> [Non-text portions of this message have been > >>> removed] > >>> > >>> > >> > >> > ____________ ---______ __-___ __-__-__- ___-___-_ ______ -____--__ > > __-___ > -__-_ > >> Be a better friend, newshound, and > >> know-it-all with Yahoo! Mobile. Try it now. HYPERLINK > >> " HYPERLINK > > " HYPERLINK > " HYPERLINK " http://mobile. " http://mobile. yahoo.com/ ;_ylt=Ahu06i62sR > 8HDtDypao8Wcj9tA cJ " HYPERLINK " http://mobil " http://mobil > e.-yahoo.com/ -;_ylt=Ahu06i62s R-8HDtDypao8Wcj9 tA-cJ " HYPERLINK > " HYPERLINK " http://mobil " http://mobil " HYPERLINK > " http://mobil " http://mobil > > e.-yahoo.com/ --;_ylt=Ahu06i62 s-R-8HDtDypao8Wc j9-tA-cJ " HYPERLINK > > " HYPERLINK " HYPERLINK " http://mobil " http://mobil " HYPERLINK > " http://mobil " http://mobil " HYPERLINK > " HYPERLINK " http://mobil " http://mobil " HYPERLINK > " http://mobil " http://mobil > >> e.-yahoo.com/ ---;_ylt= Ahu06i62- s-R-8HDtDypao8Wc -j9-tA-cJ > >> > >> > >> Internal Virus Database is out-of-date. > >> Checked by AVG Free Edition. > >> Version: 7.5.516 / Virus Database: 269.19.5/1228 - Release Date: > >> 16/01/2008 09:01 > >> > >> > >> Internal Virus Database is out-of-date. > >> Checked by AVG Free Edition. > >> Version: 7.5.516 / Virus Database: 269.19.5/1228 - Release Date: > >> 16/01/2008 09:01 > >> > >> > >> > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2008 Report Share Posted January 25, 2008 It was all diagnosed during the pregnancy. The heart looked funny so they sent me to the cardiologist for another ultrasound. When she was born it showed 3 holes but during the surgery it turned out to be 4. One was pretty big. She does have a pacemaker but she doesn't use it but 2% now. She will not need it long term and they will take it out. Sometimes we joke because she is so active and into everything that they overcorrected her heart to much. She's a joy to have and I believe her little angel brothers and sisters sent her here to me. Zephany was diagnosed DS but her therapists all think she is MDS. Anymore info just let me know. Re: Welcome Aunt Emma! >> >> Hi Emma, >> >> Congratulations on the birth of your new niece. You >> are right, Moya is so fortuate to have been born into >> such a wonderful family! >> >> Moya will bring so much joy and love to your lives. >> Give your sister a big hug from us and let us know how >> she and Moya are doing! >> >> Sandy >> Mom to , , , and Kaylee (MDS 25 >> months old) >> --- Kristy Colvin >> " mailto:imdsapresid --ent%40imdsa. --com " imdsapresi >> d-e-nt@-imdsa. --com> > wrote: >> >>> Hi Everyone >>> We have a new family joining us! Here is what Emma >>> had to say... >>> >>> >>> My sister gave birth to a beautiful baby girl 5 days >>> ago, she has been >>> diagnosed with mosaic downs syndrome, we are waiting >>> for test results on Wednesday so we will have all >>> the facts then. >>> For the moment we are suffering from a lack of >>> knowledge and experience. The initial thoughts were >>> of shock, anger and sadness but now the whole family >>> believe that the baby (Moya) is one of the luckiest >>> children alive, she has been born to the best >>> possible parents who will love and nurture her. >>> >>> >>> 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. Where do you live? We may have families >>> in your area! >>> >>> Also, please visit our website www.imdsa.com for >>> the most up-to-date information on mosaic Down >>> syndrome. >>> >>> I look forward to hearing more from you and your >>> family! >>> >>> Kristy Colvin >>> IMDSA President >>> Mom to Arron 26, 22, Tim 21 MDS, Stevan 20 >>> and Garrett 11 >>> WEAR YOUR JEANS ON GENES DAY! >>> www.imdsa.com/ ---genesday. ---htm >>> >>> >>> >>> >>> >>> >>> >>> >>> >>> [Non-text portions of this message have been >>> removed] >>> >>> >> >> ____________ ---______ __-___ __-__-__- ___-___-_ ______ -____--__ __-___ -__-_ >> Be a better friend, newshound, and >> know-it-all with Yahoo! Mobile. Try it now. HYPERLINK >> " HYPERLINK > " HYPERLINK " HYPERLINK " http://mobile. " http://mobile. yahoo.com/ ;_ylt=Ahu06i62sR 8HDtDypao8Wcj9tA cJ " HYPERLINK " http://mobil " http://mobil e.-yahoo.com/ -;_ylt=Ahu06i62s R-8HDtDypao8Wcj9 tA-cJ " HYPERLINK " HYPERLINK " http://mobil " http://mobil " HYPERLINK " http://mobil " http://mobil > e.-yahoo.com/ --;_ylt=Ahu06i62 s-R-8HDtDypao8Wc j9-tA-cJ " HYPERLINK > " HYPERLINK " HYPERLINK " http://mobil " http://mobil " HYPERLINK " http://mobil " http://mobil " HYPERLINK " HYPERLINK " http://mobil " http://mobil " HYPERLINK " http://mobil " http://mobil >> e.-yahoo.com/ ---;_ylt= Ahu06i62- s-R-8HDtDypao8Wc -j9-tA-cJ >> >> >> Internal Virus Database is out-of-date. >> Checked by AVG Free Edition. >> Version: 7.5.516 / Virus Database: 269.19.5/1228 - Release Date: >> 16/01/2008 09:01 >> >> >> Internal Virus Database is out-of-date. >> Checked by AVG Free Edition. >> Version: 7.5.516 / Virus Database: 269.19.5/1228 - Release Date: >> 16/01/2008 09:01 >> >> >> >> Quote Link to comment Share on other sites More sharing options...
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