According to the National Institute of Health, there are many other common conditions to keep an eye on with people with Down Syndrome. Some of these include a higher chance of blood disorders and leukemia as well as hypothyroidism.

Down Syndrome

January 9, 2020

Monitoring & Managing: Bloodwork for Children with Down syndrome and What We’re Looking For

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The first thing you hear about when you receive a Down syndrome diagnosis or do any research into it usually has to do with heart problems and concerns. In fact, according to the National Down Syndrome Society, “People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory […]

Down Syndrome

December 17, 2019

Straight to the heart: Heart Concerns in Down syndrome

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I first met Diany in 2017 through the National Down Syndrome Society. Diany and I have many things in common and among those things happens to be one extra chromosome in each of our family’s. Diany and Robbie are the parents of sweet Lili, now 3 (almost 4!). Lili is adorable, funny, spunky and smart. […]

Down Syndrome

November 21, 2019

Friendship by LiliZach: A Charity of Support and Love for Families with Children with Special Needs

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One of the most special things in our journey of advocacy, inclusion, awareness and everyday life with Zach is seeing the abundance of “real”, natural, easy friendships he has been gaining with kids who do not have special needs. At first, it was merely family friends or neighbors or friends of his little sister. But […]

Advocacy, Down Syndrome

October 22, 2019

The Balance & Beauty of Friendship: The Importance of “Typical” Friends for a Child with Special Needs

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I believe so strongly in the power of talking about and educating others on Down syndrome. You can’t fully understand something if you don’t get your questions answered about that subject. And while I love taking in questions about Zach and Down syndrome in general, I also know that there are a lot of things […]

Advocacy, Down Syndrome

October 15, 2019

Talking Truths About Down Syndrome: Addressing FAQ’s (Frequently AVOIDED Questions)

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We talk about Down syndrome quite often in our house. It pops up in interesting and the most random ways and we embrace it and go with the flow. It’s all about reading the audience, reading the room and being honest, in my opinion. This is especially true with kids. We don’t hide Down syndrome […]

Down Syndrome

October 8, 2019

Let’s Be Real: Talking to Children about Down Syndrome

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I am the luckiest mom in the world. Even on the hardest days, I believe that sentence with 100 percent of my being. Being the mother to Zachary and Addison is such an incredible experience that I treasure every day. I always wanted a house full of children; I always wanted a Christmas dinner with […]

Down Syndrome, The Z Family

September 24, 2019

Zach & Addie: A Sibling Relationship of Love, Pride, Support and Joy

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When your child is born with special needs, you imagine a lot of worst-case scenarios and hypotheticals. Health concerns, academic battles, fitting in, toilet training and improved speech. Sometimes, you don’t realize a worst-case scenario until you come THIS close to it happening. I’ll fast forward by saying Zachary is OK and we’ve made a […]

Down Syndrome

November 7, 2018

Barefoot in the Frost {Elopement & Down syndrome}

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Summer 2016, Photo courtesy of Dani T Photography Zack’s got some moves.  Swinging arms? CHECK. Hip shaking? Oh, yeah. Can he get down and breakdance? Yup.  And does he do it all with a smile? You know it! Music has always been huge for Zack. We’ve used it in therapies; we’ve even added music therapy to his […]

Down Syndrome, The Z Family, Zachary

November 17, 2017

Fridays are for Dance Parties

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Zack got this awesome superhero cape from our cousins Matt & Jacquie, who asked him to be their Ring Bearer this past summer. ADORABLE! We LOVE how many new words we can understand from Zack each week. Some days, he comes home from a day of school, therapies, bus rides and playing outside and sits […]

Down Syndrome, Speech / Funny Words, Zachary

November 15, 2017

“Guess What?”

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