Guest guest Posted November 17, 2010 Report Share Posted November 17, 2010 Hello , Congratulations on the birth of your new baby girl!!! My daughter (11) has MDS and she is the light of my life, you will find out so many wonderful things about her as she grows. Treat her as you would treat any child. Love her to death. Doctors will tell you all kinds of scary things but no one knows anything about any child until she becomes the person she is going to be. Just love her and you will be doing great! Congratulations, Darlene > > > > > Hi everyone we have a new family joining us. Please welcome and her > daughter Kira. Here is what she had to say.... > > I have a 2 week old daughter, Kira, who has been diagnosed with Mosaic Down > Syndrome. We are in the early stages of learning about this diagnosis and > would like to connect to other parents. Thanks! > > Hi welcome to the group. We are glad to help and anyway and > answer any questions you have as best we can. Please tell us a little bit > more about your family. > > Thank you > Teri Grubb Mom to Grace and Emma 2yrs mDs > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2010 Report Share Posted November 17, 2010 Hello everyone, and thank you for the warm welcome. My husband and I () welcomed our baby girl Kira on November 4th. We got the diagnosis a week ago. We are busy with specialist appointments right now but also busy enjoying our beautiful baby and being new parents! So far Kira is doing great - she's a fantastic eater and lets us get a good amount of sleep at night! We are looking forward to all the information and support we know we will find here and Baran Kira, 2 weeks old MDS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2010 Report Share Posted November 17, 2010 , And !  This is a great support group for all who are equally involved, and blessed with this diagnosis. My name is Casey Morton, and I wanted to fully let you know that you are very welcome here, and I also needed you to know something as well. Your little girl, Kira, and I have something in common; I have Mosaic Down Syndrome as well. If you have any questions for anyone here, do not hesitate to ask anyone of us. We're here for each other.  Casey Morton: ---------------------------------- IMDSA Self-Advocate/Spokesman www.imdsa.org ----------------------------------------------------  ________________________________ To: MosaicDS Sent: Wed, November 17, 2010 2:00:47 PM Subject: Re: Welcome new family  Hello everyone, and thank you for the warm welcome. My husband and I () welcomed our baby girl Kira on November 4th. We got the diagnosis a week ago. We are busy with specialist appointments right now but also busy enjoying our beautiful baby and being new parents! So far Kira is doing great - she's a fantastic eater and lets us get a good amount of sleep at night! We are looking forward to all the information and support we know we will find here and Baran Kira, 2 weeks old MDS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2010 Report Share Posted November 18, 2010 Hello , , and baby Kira! Welcome to the group! You have come to a very supportive network of good people who have a lot of experience and knowledge to share. My husband and I had Olivia 8 months ago and she was diagnosed with MDS at birth. What a whirlwind, but what a joy she is. We are so happy and she is such a good baby! Like Kira, Olivia slept well as a baby and by 3 months, she was sleeping through the night! She has always been a good eater : ) If you don't mind my asking, what is your cultural background? We are Russian and by the sounds of your names, you might be too!? Take care, Tacia Burton, mom to Olivia, 8 months old Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2010 Report Share Posted November 18, 2010 Hi Tacia, Yes my husband's grandparents came to the US from Russia. I am actually from England, I moved here when I met my husband here about 8 years ago. My family is all still in the UK so Kira is loved all over the world I think the thing I am finding hardest right now is trying not to look so far into the future. I know it is silly and pointless right now to worry about things that are so far away and may never happen, but I can't seem to stop doing that. How do you all deal with this? and Baran Kira, 2 weeks MDS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2010 Report Share Posted November 18, 2010 - Just like any child, you don't know. So plan for the best - expect the most out of your child and she will live up to your expectations - if you expect the worst, she will live down to them. She can do anything she wants to if she wants it bad enough! Darlene > > > Hi Tacia, > > Yes my husband's grandparents came to the US from Russia. I am actually > from England, I moved here when I met my husband here about 8 years ago. My > family is all still in the UK so Kira is loved all over the world > > I think the thing I am finding hardest right now is trying not to look so > far into the future. I know it is silly and pointless right now to worry > about things that are so far away and may never happen, but I can't seem to > stop doing that. How do you all deal with this? > > and Baran > Kira, 2 weeks MDS > > > -- “Knowing is not enough, we must apply. Willing is not enough, we must do.” Johann Wolfgang von Goethe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2010 Report Share Posted November 18, 2010 Welcome ! My son, Ethan is 20 months old and was diagnosed at 13 months. I know the exact feeling you are talking about - the unknown is so hard to deal with. I still struggle with it. It's just not what we had hoped of our kids, but what I have found is that all the unknowns have been secret little blessings that when come to light are moments of joy. During all the appointments and referrals, I kept needing more, wanting answers and wanting to know exactly how this was going to effect him. Bottom line, I will never know. The best message I got was from the geneticist. She told me, " treat the child, not the diagnosis. " I have tried to live each day by that and when I start to feel a bit sad, I remember how far my little man has come in such a short period of time and how much love he gives me each second of the day. > > Hi Tacia, > > Yes my husband's grandparents came to the US from Russia. I am actually from England, I moved here when I met my husband here about 8 years ago. My family is all still in the UK so Kira is loved all over the world > > I think the thing I am finding hardest right now is trying not to look so far into the future. I know it is silly and pointless right now to worry about things that are so far away and may never happen, but I can't seem to stop doing that. How do you all deal with this? > > and Baran > Kira, 2 weeks MDS > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2010 Report Share Posted November 18, 2010 Thank you both for the great advice. When kira's service coordinator came today to start the EI process it just solidified just how proud of her I am, I couldn't stop talking about her. I gave her a kiss and she gave me her best smile yet, I'm sure it was gas - she's only 2weeks - but it totally melted my heart I've never been the type of person to live in the moment, I've always been a planner, so i think having Kira in my life will help me make the most of each day and notice all the small joys there are as well as the big ones. She has already changed me for the better in so many ways. Thank you for your kind words so far Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2010 Report Share Posted November 19, 2010 Well said Jen! I absolutely agree with you. Hope you and the family are doing well Tacia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2011 Report Share Posted February 5, 2011 Hi Everyone Please welcome a new family. Here is what she had to say..... I am a 37 yr old mother who has an 8 yr old son with DS and I am currently expecting our 3rd child in May, who through prenatal testing we have found out has mosaic DS. We are looking for support. Welcome and Congratulations on expecting a new baby! We are a very friendly and supportive group. Please ask any questions you may have and tell us a little more about your family. What are your names? Where do you live? Etc. Teri Grubb Mom to Grace (mDs) and Emma (mDs) 2yrs Quote Link to comment Share on other sites More sharing options...
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