Guest guest Posted March 31, 2008 Report Share Posted March 31, 2008 Welcome to our group. Tell us more about your daughter. What made them suspect Mosaic Down Syndrome? Sue Isabella mds 15 months Welcome new family! Hi Everyone We have a new family joining us. Here is what they had to say... Our pediatrician and another specialist believe that our soon to be adopted daughter needs to be tested for Mosaic Down syndrome. I'm trying to find as much info as I can. Welcome to our family! I am so glad you have joined us! Congratulations on your new daughter! Please feel free to ask any questions you have here. We will all be very happy to share our experience with you. Kristy Colvin IMDSA President ____________ _________ _________ _________ _________ ____ International Mosaic Down Syndrome Association PH: 1- Toll Free: 1-888-MDS-LINK www.imdsa.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2008 Report Share Posted July 4, 2008 >her name is Tawana Hannah Chirusa and i'm Faith Chirusa.i'm 26 years and Tawana is my first child.i'm proud to be her mom.we live Portland downtown just by the PSU campus. > Hi Everyone > We have a new family joining us today! Here is what " mom " had to say... > > I AM A MOM OF A 1 MONTH OLD GIRL WITH MDS.OUR BOTH FAMILIES ARE IN AFRICA SO I NEED SUPPORT FROM OTHER GROUP MEMBERS.SHE A DOING WELL AND I LOVE HER SO MUCH. > > Welcome to our family! I am so glad you have joined us!! Please tell us all about you and your baby girl! What is yours and her name? Where do you live? I am sure it is difficult for you without your family near you. Don't worry! We are a very LARGE extended family here and welcome all of your questions! Feel free to ask anything and we will be happy to share our experiences. > > 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 July 4, 2008 Report Share Posted July 4, 2008 --- i have added Tawana's photos to the album In MosaicDS , " faith.sithole " wrote: > > > >her name is Tawana Hannah Chirusa and i'm Faith Chirusa.i'm 26 years > and Tawana is my first child.i'm proud to be her mom.we live Portland > downtown just by the PSU campus. > > Hi Everyone > > We have a new family joining us today! Here is what " mom " had to > say... > > > > I AM A MOM OF A 1 MONTH OLD GIRL WITH MDS.OUR BOTH FAMILIES ARE > IN AFRICA SO I NEED SUPPORT FROM OTHER GROUP MEMBERS.SHE A DOING WELL > AND I LOVE HER SO MUCH. > > > > Welcome to our family! I am so glad you have joined us!! Please > tell us all about you and your baby girl! What is yours and her name? > Where do you live? I am sure it is difficult for you without your > family near you. Don't worry! We are a very LARGE extended family > here and welcome all of your questions! Feel free to ask anything and > we will be happy to share our experiences. > > > > 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 July 6, 2008 Report Share Posted July 6, 2008 Tawana is so adorable. What is your name? I also live in the portland area, so we should chat sometime. I want to get involved with the NWDSA and once I get more information on when the next meeting is Ill let you know. Hey, maybe Ill see you there! I live in washougal, its about 30 miles northeast of portland. My son is named Gideon and he is now 13 months old. Take care! Marriah > > > >her name is Tawana Hannah Chirusa and i'm Faith Chirusa.i'm 26 years > and Tawana is my first child.i'm proud to be her mom.we live Portland > downtown just by the PSU campus. > > Hi Everyone > > We have a new family joining us today! Here is what " mom " had to > say... > > > > I AM A MOM OF A 1 MONTH OLD GIRL WITH MDS.OUR BOTH FAMILIES ARE > IN AFRICA SO I NEED SUPPORT FROM OTHER GROUP MEMBERS.SHE A DOING WELL > AND I LOVE HER SO MUCH. > > > > Welcome to our family! I am so glad you have joined us!! Please > tell us all about you and your baby girl! What is yours and her name? > Where do you live? I am sure it is difficult for you without your > family near you. Don't worry! We are a very LARGE extended family > here and welcome all of your questions! Feel free to ask anything and > we will be happy to share our experiences. > > > > 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.mosaicmo ments.today. com > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2008 Report Share Posted August 29, 2008 Hi Everyone This has been a busy week with new families joining us! We have another new family joining us today, here is what they had to say.... I've had a baby 8 wks ago who we have found out has mds. I am having a very hard time coming to terms with this and would love some support Welcome to our family! I am so glad you have joined us! Please tell us all about your baby! What is his/her name? Feel free to ask any questions you have here. We will all be happy to share our experiences. I know you are feeling quite overwhelmed right now with this new information, but don't worry, we are all here for you and with all of us, you are never alone! 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 August 30, 2008 Report Share Posted August 30, 2008 Dear New Parent, Just want to tell you our story. I had a high triple screen when I was pregnant but had a level 2 ultra sound instead of a amnio due to risk of losing the baby. The Level2 did not find anything wrong. And when my daughter was born in 1999, I asked if she had Down Syndrome as I had the high triple screen - they " the doctors " told me know she is a beautiful baby girl - well they were right about that part she is gorgeous (if I do say so myself ;-) At 4 months I saw another pediatrician in the practice who was not my regular one. She asked me if my husband was Asian. I said no - French/American Indian. She said had low tone in her trunk and " Asian " eyes which could be a sign of down syndrome - we would wait and see if any delays developed. Well, I am a type A personality and I am not about to " wait and see " anything. I immediately went to my ped. and asked her to confirm or deny it. She looked at and said - " I can't, we have to do the blood work. " We did the blood work, which took almost 2 months. At 6 months she received the diagnosis of MDS. Shortly thereafter she got very sick and ended up at Children's Hospital in Philadelphia. As I lay with her in the room, I was thinking " It is OK if this child dies, my husband and I would have another girl, and she would be perfect " But I began to think, what if we couldn't have another child? What if we did and there was something else " wrong " ? What if she did not have a limb? Would she be as loving as ? Would she be as good a baby - was the PERFECT baby! I came to terms with the MDS which was very beneficial to me especially since not 2 years later my " PERFECT " son would be diagnosed on the Autism Spectrum. teaches more and more every day - how NOT to be a type A - how life does not live on MY schedule - how patience is a VIRTUE (I NEVER had). She is a blessing and she confounds her doctors more than she knows. She is a trooper and has multiple surgeries without a complaint - but complains LOUDLY for a sliver. I love her so much and she is the light of my life - I could not imagine life without her - it could be easier but not any better. I am back in school now to earn my teacher's certification in Secondary Math Regular Education and Special Education so I can better teach my son and daughter life. Darlene - Mom to (11) and (9) > Hi Everyone > This has been a busy week with new families joining us! We have another new > family joining us today, here is what they had to say.... > > I've had a baby 8 wks ago who we have > found out has mds. I am having a very hard time coming to terms with this > and would love some support > > Welcome to our family! I am so glad you have joined us! Please tell us all > about your baby! What is his/her name? Feel free to ask any questions you > have here. We will all be happy to share our experiences. I know you are > feeling quite overwhelmed right now with this new information, but don't > worry, we are all here for you and with all of us, you are never alone! > > 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 September 10, 2008 Report Share Posted September 10, 2008 Hi folks! My name is Helga and I have a daughter named Saga that will turn 9 years old in october. This is my first time in a forum for mosaic down syndrome children. Usually I don't tell people that it's mosaic since I don't feel that it matters that much. She has down syndrome and that's that! We are family of 4 that lives in Norway, close to Oslo. Saga goes to a mainstream school and there is another girl with DS in her class so she has a best friend at school. Priceless. She can read and write (startet to read this year) and is doing well in school for a child with DS. Her speach is delayed but she speaks OK. She is bilingual since I'm icelandic and she speaks more norwegean than icelandic but is getting better every year. She have never had big problems with her motoric skills. She's a fast runner and I am to, since she has always been running a lot! She's very active. She skies, skates,jumps robe, rides a bike and do more or less the same as a child does in that age. Never any health issues apart from wearing glasses. Except from beeing very very active there has never been any problems with her. Healthy, happy and beautiful. Photos of her is at this place <http://www.flickr.com/photos/eggala/sets/72157603975076974/with/9294752\ 06/> Well that was a lot of bragging! Have a nice day. > > > Hi Everyone > > We have a new family! Here is what they had to say... > > > > I have a little girl almost 9 years old with mds > > > > Welcome to our family! I am so glad you joined us! Please tell us all about > > you and your little girl. Feel free to ask any questions. We will all be > > happy to share our experiences. > > > > Kristy > > Mom to Arron 26, 23, Tim 22 MDS, Stevan 21 and Garrett 12 > > > > > > Kristy Colvin > > IMDSA President Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2008 Report Share Posted September 10, 2008 Helga, You have a lot to be thankful for!! God is so good. To: MosaicDS@...: helgadis@...: Wed, 10 Sep 2008 07:31:02 +0000Subject: Re: Welcome new family! Hi folks!My name is Helga and I have a daughter named Saga that will turn 9 yearsold in october. This is my first time in a forum for mosaic downsyndrome children. Usually I don't tell people that it's mosaic since Idon't feel that it matters that much. She has down syndrome and that'sthat!We are family of 4 that lives in Norway, close to Oslo.Saga goes to a mainstream school and there is another girl with DS inher class so she has a best friend at school. Priceless. She can readand write (startet to read this year) and is doing well in school for achild with DS. Her speach is delayed but she speaks OK. She is bilingualsince I'm icelandic and she speaks more norwegean than icelandic but isgetting better every year.She have never had big problems with her motoric skills. She's a fastrunner and I am to, since she has always been running a lot! She's veryactive. She skies, skates,jumps robe, rides a bike and do more or lessthe same as a child does in that age.Never any health issues apart from wearing glasses. Except from beeingvery very active there has never been any problems with her. Healthy,happy and beautiful.Photos of her is at this place<http://www.flickr.com/photos/eggala/sets/72157603975076974/with/9294752\06\ />Well that was a lot of bragging!Have a nice day.>> > Hi Everyone> > We have a new family! Here is what they had to say...> >> > I have a little girl almost 9 years old with mds> >> > Welcome to our family! I am so glad you joined us! Please tell usall about> > you and your little girl. Feel free to ask any questions. We willall be> > happy to share our experiences.> >> > Kristy> > Mom to Arron 26, 23, Tim 22 MDS, Stevan 21 and Garrett 12> >> >> > Kristy Colvin> > IMDSA President[Non-text portions of this message have been removed] _________________________________________________________________ Stay up to date on your PC, the Web, and your mobile phone with Windows Live. http://clk.atdmt.com/MRT/go/msnnkwxp1020093185mrt/direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2008 Report Share Posted September 10, 2008 Hi Helga My name is Narelle and I live in Australia. I have two daughters, Eve 2 years and Lily 81/2 months who has MDS. I had a look at your photos and I have to agree with you. Saga is truly a beautiful child. Who takes the photos? Whoever it is, I was seriously impressed and I could see how proud they are by the love and beauty that shines through all those photos. Regards Narelle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2008 Report Share Posted September 10, 2008 Hi Narelle Thank you for your kind words. The photos were taken by me and I am my daughters biggest fan so I do my best (and I love taking photos, just need a few more houres in the day to have time for it!). Good luck with the litle Lily. regards Helga p.s my husbands sister lives in Sidney! > > Hi Helga > > My name is Narelle and I live in Australia. I have two daughters, Eve > 2 years and Lily 81/2 months who has MDS. I had a look at your photos > and I have to agree with you. Saga is truly a beautiful child. Who > takes the photos? Whoever it is, I was seriously impressed and I could > see how proud they are by the love and beauty that shines through all > those photos. > > Regards > > Narelle > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2008 Report Share Posted September 10, 2008 I saw your photos and your daughter is beautiful. She has those lovely nordic features. Best of luck Subject: Re: Welcome new family! To: MosaicDS Date: Wednesday, September 10, 2008, 2:31 AM Hi folks! My name is Helga and I have a daughter named Saga that will turn 9 years old in october. This is my first time in a forum for mosaic down syndrome children. Usually I don't tell people that it's mosaic since I don't feel that it matters that much. She has down syndrome and that's that! We are family of 4 that lives in Norway, close to Oslo. Saga goes to a mainstream school and there is another girl with DS in her class so she has a best friend at school. Priceless. She can read and write (startet to read this year) and is doing well in school for a child with DS. Her speach is delayed but she speaks OK. She is bilingual since I'm icelandic and she speaks more norwegean than icelandic but is getting better every year. She have never had big problems with her motoric skills. She's a fast runner and I am to, since she has always been running a lot! She's very active. She skies, skates,jumps robe, rides a bike and do more or less the same as a child does in that age. Never any health issues apart from wearing glasses. Except from beeing very very active there has never been any problems with her. Healthy, happy and beautiful. Photos of her is at this place <http://www.flickr. com/photos/ eggala/sets/ 7215760397507697 4/with/9294752\ 06/> Well that was a lot of bragging! Have a nice day. > > > Hi Everyone > > We have a new family! Here is what they had to say... > > > > I have a little girl almost 9 years old with mds > > > > Welcome to our family! I am so glad you joined us! Please tell us all about > > you and your little girl. Feel free to ask any questions. We will all be > > happy to share our experiences. > > > > Kristy > > Mom to Arron 26, 23, Tim 22 MDS, Stevan 21 and Garrett 12 > > > > > > Kristy Colvin > > IMDSA President Quote Link to comment Share on other sites More sharing options...
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