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Your weekly Down Syndrome Awareness Month Digest

I'm having some trouble posting to so many places, so here is a summary of Days 7-14!  Thanks for all of your encouraging comments on this month of DS facts!  It makes it worth the effort! 💙💛

Day 7 DS Awareness: Embarking on the DS journey can be a roller coaster. It is our “framily” who keep us going when life throws some unexpected side trips, and who cheer with us during the many small victories. Thank you to everyone who has supported Evie for the Buddy Walk this year! We love you and appreciate you!  


Starting out the Buddy Walk! Evie was overwhelmed by the loud cheering at the start line. 


Day 8: An estimated 90% of moms with a prenatal DS diagnosis will choose to terminate their pregnancies. When I first found out our diagnosis, I had to search hard in general literature to find anything positive about having a child with Down Syndrome. Increased availability of non-invasive blood tests that can identify chromosomal defects could potentially eliminate people with DS in certain countries. For me and Evie, our goal is to raise awareness and show the joy in being a homie with an extra chromie! 





 Day 9 DS Awareness: Since the 1970’s, public schools have had to by law provide a free and appropriate education to individuals with Down Syndrome. We already see the benefits of this, and evie is only in preschool! And apparently she likes chess! Thanks for supporting public school education. They are pivotal for our children and our future,no matter who they are or where they are.




DS Awareness Day 10: Being included is priceless. Evie is fully included in her preschool class with appropriate assistance so that she can participate. These include an aide for safety, a special chair for support, and an electronic communication device (NOVA Chat). Evie loves being included, and just blossoms when she goes to school! Scroll for your daily evie pic!





DS Awareness Day 11: Babies with DS often spend some time in the NICU for various reasons. Evie was admitted for heart defects, pulmonary hypertension, and failure to gain weight. Our NICU nurses were lifesaving in so many ways. Massachusetts is currently voting to restrict nurse to patient ratios. While I strongly support having quality care and safe boundaries (Evie’s nurses in the NICU had two patients each), the way that #1 is written would likely be more costly and impact healthcare access in a negative way. Imagine going to the ER and being told to wait or to try another hospital because they have reached capacity. I don’t know about you, but when I go to the ER for help, I like to be seen! Safe limits are important, but with such a sweeping change that gives only 37 days to enact, they need to write the regulation with more care for consequences.  Evie says, Vote No on #1!



Evie's first bath

DS Awareness Day 12: People with Down Syndrome are not always happy, contrary to popular belief. They have the same emotions as everyone else. And sometimes they are sad that Mommy is testing out Halloween outfits and the skirt is so poufy that it’s scary.



DS Awareness Day 13: Some kids with DS take longer to speak verbally. It takes a lot of coordination to move the tongue and oral muscles correctly, and their tongues tend to be bigger for their smaller facial structure. Evie can say a few words, but gets frustrated when we don’t understand her utterances or signs. She started an augmentative communication device called a NOVA chat this week. So far she is very pleased with it. We are getting used to carrying it around everywhere, but so far so good.




DS Awareness Day 14: People with Down syndrome attend school, work, participate in decisions that affect them, have meaningful relationships, vote and contribute to society in many wonderful ways. The book that Evie is reading in the photo is called “I Love You for You.” It teaches various animals that they all have their own unique traits, and each one is special. This message is especially important for Evie, but I believe all children (and adults) need to know that each person has their own unique abilities and contributions to the world. When we set apart others because they are different, we ALL lose out. 


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