Tuesday, October 31, 2017

Down syndrome Awareness Month Catchup 3

Down syndrome Awareness Month has been such a fun way for me to share what I have learned over the last 10 months.  Matthew brings so much joy to our family, and I am so happy that I get to share him with so many people.  He is a lucky little guy to have so many people cheering him on through this crazy journey.  Here are the rest of my posts for Down syndrome Awareness Month.  I hope you have learned a thing or two along the way.

October 23


As part of Matthew's genetic testing, after he was born, they took pictures of all of his chromosomes. This is a picture of his karyotype. Those three copies of the 21st chromosome are what gives Matthew Down syndrome, or Trisomy 21. I think they are pretty cute little chromosomes!

October 24




You may see babies, kids or adults with Down syndrome sticking out their tongue. We could even see Matthew's tongue sticking out on ultrasounds. This can be due to a combination of having a small mouth, slightly larger tongue and low oral muscle tone. Therapy will help with tongue protrusion, but for now it can be pretty cute!

October 25



These two. They already have such a special bond. A.J. has loved his "Baby Matt" since before he was born. He has shown us that he is such a caring big brother. I am sure these two will cause lots of mischief together in their future, but I am so happy that they have each other to grow up with. I have no doubt that A.J. will protect and guide Matthew along the way.

October 26



CBS recently did a piece about Down syndrome disappearing from Iceland (link below). They claim close to a 100% termination rate when Down syndrome is detected before birth. In the United States the termination rate is still close to 67%. People with Down syndrome can live long, happy and relatively healthy lives. The fact that so many aren't given a chance breaks my heart. I think the world is a better place with this little guy in it, extra chromosome and all.

https://www.cbsnews.com/news/down-syndrome-iceland/

October 27


Maternal age is the only factor that has been linked to an increased chance of having a baby with Down syndrome resulting from nondisjunction (like Matthew) or mosaicism. However, 80% of babies born with Ds are born to mothers under 35. I was 32 when I got pregnant with Matthew, which gave me approximately a 1 in 720 chance of having a baby with Ds.

October 28


When you focus on the possibilities, and not the limitations, a person is allowed to reach their full potential. Just 50 years ago people who had babies with Down syndrome were encouraged to send them off to a mental institution. We feel very lucky to be in a place in time, and part of a community, where Matthew's potential is limitless.

October 29


Jack is our first born, the leader of our boys. He can't remember a time when he didn't have a little brother. He will be off to college when Matthew is only eight, but I know they will always have a special relationship. Matthew's arrival, and KC birth, turned our family life upside down. Jack never complained about any sacrifices he had to make. He is an amazing big brother, and I know he will always be a better person with Matthew in his life.

October 30


J.P. and I had Jack when I was 22 and he was 24. The plus side of having kids so young is that we would be young empty nesters! We always joked that we would be traveling around the world while our friends were home raising little kids. Having our round 2 babies definitely set those travel plans back a few years. When we found out Matthew had Down syndrome one of the things we discussed was that he may live with us forever. We may never be empty nesters. And we agreed that we were ok with that. However, after learning more and more about the lives of people with Down syndrome today, we may get our empty nest after all. And now I'm a little sad about that! We have no idea what the future holds for Matthew, but people with Ds can have jobs, live independently and even get married. Whatever Matthew does with his life, I know it will be wonderful!

October 31


It's the final day of #downsyndromeawarenessmonth ! If you only take away one thing from all of my posts, I hope it is that we are ALL more alike than different. People with Down syndrome want the same things as you and I: to be treated with respect, love and kindness. Thank you for all of the love shown to this little pumpkin over the last month. We are so grateful to have him in our lives, extra chromosome and all!

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