Guest guest Posted May 25, 2011 Report Share Posted May 25, 2011 Thanks! Our family is from Montgomery, Alabama, and I have two living children- Isabella Grace (Gracie) who is 2 years old, and Tristan Caede (we just call him Caede), who just turned a year old. Our oldest son Chase would have been three years old right now, but he died at the age of 3 months from SIDS. Caede's pregnancy was a hard one- I had a threatened miscarriage at 14 weeks and spent the rest of the pregnancy on bedrest and labor prevention medications. At 32 weeks gestation, the medication stopped working and my water broke and my little guy was born- May 17, 2010. He was surprisingly much bigger than they had suspected- over 5 pounds! He was still a scrawny little guy though, and they took him straight to the NICU. He was breathing room air by his second day there, and they took his nasal feeding tube out on the 4th day. He spent his first two weeks in the NICU with minor feeding complications, because he just didn't want to suck on a bottle. After they finally let me nurse him and realized that he ate just fine that way, they let me take him home. He was a beautiful baby from the beginning, but there was always something just a little different about his features. I just attributed it to being premature, and I thought the same thing about his developmental delays. He didn't roll over or sit up until he was 8 months old. He had surgery to put tubes in his ears at 9 months of age. Prior to that, he was constantly having ear infections, respiratory infections, and he had the most awful asthma that required three daily breathing treatments with pulmicort and albuterol. The ear infections got better after the surgery, and the asthma improved a little when we moved from an old house in the country to a newer house in the city. We have been getting asked by others (sometimes strangers) more often lately if he has down syndrome. At first I was horrified- of course my baby doesn't have that! I would have known and so would the doctors! But when I told my mother, she was quiet for a moment and then told me that she had noticed the same thing, but hadn't wanted to say anything to upset me. I looked back at some recent pictures and saw what people were talking about. I started looking around online & found information  on MDS, and was shocked by looking at some of the images & realizing how much some of those kids looked very similar to my son. So I started the process of asking questions and getting my pediatrician (who thought i was a crazy mother obsessing over nothing) to refer him to a genecist. This is new territory & we are treating him as we always have, but waiting to see what happens. I started working with him on sign language at 10 months because he was still not saying any words, and he is starting to show signs of comprehension and will occasional make his own version of a sign we've been working on when he wants something (which is usually food!) We are just waiting on the doctors to tell us exactly what it is that's going on, and what course of action they recommend. Any tips from parents who have been there would be amazing though. I'm so glad to have found this site! Most people have never heard of MDS, and there aren't many resources on the internet either. I found IMDSA & this group though, and have found all the information provided to be very helpful. I've attached a few pictures of Caede- two from when he was a newborn & two of them from his recent birthday party. He's grown so much in a year! He's also exhibiting more DS physical characteristics as he gets older. I wish I could have gotten a picture of him smiling- he usually is, and it's the cutest thing!  ________________________________ To: imdsa <mosaicds > Sent: Wednesday, May 25, 2011 9:41 AM Subject: Welcome New Family!  Hi everyone! We have a new family joining us today, here is what they had to say... My name is and I have a one year old with mosaic down syndrome. Would like a chance to contact others who are experiencing this. Welcome ! Please tell us more about you and your one year old! What is your child's name? Where are you from? I'm sure you will find this group to be very supportive and helpful!  Hellard President International Mosaic Down syndrome Association (IMDSA) P.0. Box 354~ Trenton ~ OH ~ 45067 1-888-MDS-LINK ~ 1- ~ (FAX) 1- http://imdsa.org Come Join us in Orlando, FL. during July 8-10th at our Research and Awareness Conference! http://imdsa.org/overview Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2011 Report Share Posted May 25, 2011 Hello - It took up 4 weeks to get the results back from the blood test - but that was because my pediatrician was diagnosed with breast cancer and left her practice right after she took the test - so I don't know how long it should have taken, only the amount of time it did take. Just love him and treat him like your other children and he will grow up just fine. Darlene - Mom to (14) and (12) On Wed, May 25, 2011 at 12:29 PM, Whisnand < stephaniewhisnand@...> wrote: > > > Thanks! Our family is from Montgomery, Alabama, and I have two living > children- Isabella Grace (Gracie) who is 2 years old, and Tristan Caede (we > just call him Caede), who just turned a year old. Our oldest son Chase would > have been three years old right now, but he died at the age of 3 months from > SIDS. Caede's pregnancy was a hard one- I had a threatened miscarriage at 14 > weeks and spent the rest of the pregnancy on bedrest and labor prevention > medications. At 32 weeks gestation, the medication stopped working and my > water broke and my little guy was born- May 17, 2010. He was surprisingly > much bigger than they had suspected- over 5 pounds! He was still a scrawny > little guy though, and they took him straight to the NICU. He was breathing > room air by his second day there, and they took his nasal feeding tube out > on the 4th day. He spent his first two weeks in the NICU with minor feeding > complications, because he just didn't want to suck on a bottle. > After they finally let me nurse him and realized that he ate just fine that > way, they let me take him home. He was a beautiful baby from the beginning, > but there was always something just a little different about his features. I > just attributed it to being premature, and I thought the same thing about > his developmental delays. He didn't roll over or sit up until he was 8 > months old. He had surgery to put tubes in his ears at 9 months of age. > Prior to that, he was constantly having ear > infections, respiratory infections, and he had the most awful asthma that > required three daily breathing treatments with pulmicort and albuterol. The > ear infections got better after the surgery, and the asthma improved a > little when we moved from an old house in the country to a newer house in > the city. We have been getting asked by others (sometimes strangers) more > often lately if he has down syndrome. At first I was horrified- of course my > baby doesn't have that! I > would have known and so would the doctors! But when I told my mother, she > was quiet for a moment and then told me that she had noticed the same thing, > but hadn't wanted to say anything to upset me. I looked back at some recent > pictures and saw what people were talking about. I started looking around > online & found information on MDS, and was shocked by looking at some of the > images & realizing how much some of those kids looked very similar to my > son. So I started the process of asking questions and getting my > pediatrician (who thought i was a crazy mother obsessing over nothing) to > refer him to a genecist. This is new territory & we are treating him as we > always have, but waiting to see what happens. I started working with him on > sign language at 10 months because he was still not saying any words, and he > is starting to show signs of comprehension and will occasional make his own > version of a sign we've been working on when he wants something (which > is usually food!) We are just waiting on the doctors to tell us exactly > what it is that's going on, and what course of action they recommend. Any > tips from parents who have been there would be amazing though. I'm so glad > to have found this site! Most people have never heard of MDS, and there > aren't many resources on the internet either. I found IMDSA & this group > though, and have found all the information provided to be very helpful. I've > attached a few pictures of Caede- two from when he was a newborn & two of > them from his recent birthday party. He's grown so much in a year! He's > also exhibiting more DS physical characteristics as he gets older. I wish I > could have gotten a picture of him smiling- he usually is, and it's the > cutest thing! > > ________________________________ > > To: imdsa <mosaicds > > Sent: Wednesday, May 25, 2011 9:41 AM > Subject: Welcome New Family! > > > Hi everyone! We have a new family joining us today, here is what they had > to say... > My name is and I have a one year old with mosaic down > syndrome. Would like a chance to contact others who are experiencing > this. > > Welcome ! Please tell us more about you and your one year old! > What is your child's name? Where are you from? I'm sure you will find this > group to be very supportive and helpful! > > Hellard > President > International Mosaic Down syndrome Association (IMDSA) > P.0. Box 354~ Trenton ~ OH ~ 45067 > 1-888-MDS-LINK ~ 1- ~ (FAX) 1- > http://imdsa.org > > Come Join us in Orlando, FL. during July 8-10th at our Research and > Awareness Conference! > http://imdsa.org/overview > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2011 Report Share Posted October 26, 2011 Hi everyone! We have a new family joining us today here is what they had to say.... Our son was diagnosed with MDS one week after birth. He is now about to be 4 months old. I have joined my local DS groups but I would love to hear from others with MDS. Welcome please tell us more about you. Where are you, and your family from? What are your names? You have come to to right place, there are so many great people within this group to give you advice. You will find that this group has self advocates with mDs, genetic councilors, and most important parents like you and I who have been on this journey. Welcome! Hellard President International Mosaic Down syndrome Association (IMDSA) P.0. Box 354~ Trenton ~ OH ~ 45067 1-888-MDS-LINK ~ 1- ~ (FAX) 1- http://imdsa.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2011 Report Share Posted November 2, 2011 My name is Iran and my husband's name is Marco. We have an almost 3 year old boy named Diego and our 3 month old is Viggo. We live in central Texas, in the Austin area. Approximately one week after birth, we were informed that Viggo had down syndrome. It was not until about 1 month ago that we found out that he actually had Mosaic Down Syndrome. We thank God for our beautiful healthy boys. So far we have not had any major issues associated with ds. Viggo is very healthy and growing appropriately. I think that soon we will be finding out more about any developmental delays now that he will start getting to those milestones as he is still very young. We are both thankful and nervous about what the future will bring and are ready to embrace any challenges. Iran r Quote Link to comment Share on other sites More sharing options...
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