Evie the Extraordinary and Her Mommy: The Journey As We Go

Hi Evie fans!  Our first post-pandemic trip was to the  Storyland amusement park in Glen, New Hampshire !  Evie did well with the 2.5 hour drive--there was a lot of sing-shouting to Laurie Berkner songs on the way there.   About halfway to New Hampshire, I had the sickening feeling of realizing that I had forgotten all of Evie's carefully calculated and labeled blended food. :(   Mom of the year right here!  Thankfully, she isn't on formula anymore, and there was a super Walmart in North Conway, so we made a stop to buy a hand blender and some prepared foods for me to blend!  We stayed the night in Comfort Inn at North Conway . It was packed full of families, and had a mini-golf adventure right next to the hotel.  As soon as we settled in, I painstakingly microwaved a turkey dinner in the kitchenette, threw in some heavy cream, spinach, and cranberry sauce, and blended it all in a plastic Rubbermaid bowl.  Thankfully, Evie agreed to eat thi...

This Youtube video was at first made to showcase Evie's first real jump on a trampoline. Then it became a video with a message about making new friends, because I was just so impressed with how Qole gave Evie the space she needed to feel comfortable enough to say yes to getting on the trampoline.   And then as we were making a paper craft about friendship, and we were pulling out different pieces of color, I was struck with how it became a teaching moment for my daughter that people of all colors can hold hands and can look out for each other. May it be so. The world needs it now more than ever. 

My first memory of really recognizing I was different was in 4th grade in a mostly white town.  I was riding a different school bus with my friend to go to her house.  A boy (whose name I will always remember) started chanting "Ching chong, wah wah..." over and over again throughout the bus ride.  I ignored him. I had no power on this bus . I was stunned that a boy I didn't know would tease me like that. I went home and told my parents, and my dad joked about it, saying next time I should tell him he speaks "Gobble Gobble." We all laughed, and laughing was what I needed that night.   I tucked it away in my memory, but I knew that the incident had bothered me.  My mom found out another time that I was being teased, and she took action and initiated what became a cultural immersion day in my elementary school.  In middle school, a girl in my class made sure I understood I didn't belong at her table, motioning to all the other girls at the table and announci...

We are up to 121 subscribers in 2 months!  Please click Like and also Subscribe so that we can reach the 1000 subscriber requirement to be on Kids YouTube (right now we are on regular YouTube, in a vast sea of home videos. :)   We would love to have representation of kids with Down Syndrome on YouTube, so that other kids see that differences can be special!  Thanks for subscribing and spreading the word! 

During the pandemic, Evie and Mommy have ventured into the art of making videos.  Once we became better at it, we started a Kids' Youtube channel, called Evie the Extraordinary !  My goal in these videos is to show our audience that Evie is more alike other kids than different. Sure, her expressive verbal skills are slower to develop, but her receptive skills are all very much in tune, and it's so fun to show everyone how smart she is!  I mean, the kid taught herself to read!  Evie's favorite movies we've made so far are the Ice Cream truck episode and the Juice making episode.  Today, we released a movie about alphabet foam tiles, because that's Evie's current favorite toy!  https://youtu.be/-axg_FGjwz4 We'd love it if you'd like our videos and click to subscribe!  When we reach a certain number of subscribers and watched hours, then we can be included in Kids Youtube.  Think about how many kids will be able to see how Down Syndrome is just somet...

Hi friends, Evie is 6 years old and has had a feeding tube all her life. Yesterday was the first day ever that she had no formula put through her g-tube.   At 5 weeks old, we broke out of the NICU (finally!) after getting a g-tube placed in her stomach so that she could gain weight at home. We started from using an overnight feeding pump and feeds every 3 hours on Pediasure formula, and praying she wouldn't spit up or set off her pump alarm overnight.   We then figured out how to space out the feeds to transition from a NICU schedule to a real-life schedule.   We then dealt with feeding aversion, with Evie turning away or crying when offered the bottle. As she got older, she accepted a little food by mouth, but not enough to sustain her.  I furiously searched Facebook groups and read articles, trying to figure out how to help her leave the tubie life.   We switched from Pediasure to Real Food Blends to let her body get used to less milkshakes and more real foo...

 Hi all!  This is Evie, and I want to share with you about my favorite masks. Mommy tried a few different types, and this is the one that I don't whip off right away.  Why is this type my favorite? I think because the ear loops fit me well and don't make my glasses fall off.  Mommy likes that they are made of cotton muslin and the ear loops are adjustable with a plastic adjuster.  Mommy asked the Etsy shop owner if she would share a promo code with me and my friends, and she said yes!  If you search for BeWellGroup in Etsy, you can use the promo code "EVIE20" and get 20% off!!  Mommy has bought at least 6 of these for me in preparation for school.   She likes the adult version too, because they have nose wires and filter pockets.  Hope you enjoy then as much as we do!  (Mommy's note: This is an honest review and we received nothing for posting this.  We honestly really love these masks and wanted to share them with you!) I start sch...