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

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...

Quarantining with a preschooler (soon to be kindergartner) is both wonderful and terrible.  Mostly wonderful. But sometimes I feel like I'm doing a terrible job as a mom and as a sudden teacher.  And then other times I feel like I deserve an award for working my full-time job and still teaching her things.  I oscillate between these feelings as fast as I find snacks throughout the day, because why not?  Here are some things Evie has learned during this time of quarantine: 1.  How to say I Love You.  As of August, she now says, "I love you SOOOOO much!" 2.  How to dance the Robot Cha Cha, courtesy of her music teacher sending along videos. Robot Cha Cha is a made-up dance, but she actually dances to Apache, by the Sugar Hill Gang .  Every single night.  3.  How to tell Daddy to dance the Robot Cha Cha, and make us all giggle.  Now Evie just points at her Dada and says, "Dada Dance." And then he has to dance. 4.  How to rea...

 Among the many things that the pandemic shut down was Evie's first sleep study. She's a little behind in getting this done, as most kids with Down Syndrome have it done sooner, but since she didn't snore or have other symptoms, we weren't in a rush.  When we finally had it scheduled, it was canceled early in the pandemic.  Now the new date is finally around the corner, and it caught us off guard!  One of the resources I have come to really appreciate is the Social Stories site on the Boston Children's Hospital website .  If your child is due for a procedure at the hospital, it's worth checking out.  My main goal this time is for Evie to have an inkling of understanding about why the heck they are trying to put stickers on her head and wrapping her up like a mummy.  I usually aim high, but I have very low expectations for her cooperation level!  I will just be pleased if we don't have to do this again!  For this sleep study story, I took the...

Hi friends, it has been awhile. Since we last wrote, Evie had a few minor procedures that we had been "collecting" in order to justify putting her under anesthesia. As soon as it was evident that we would be scheduling surgery, the part of my brain that stores away medical info for Evie kicked in, and was ready to unleash the many departments that wanted "in" on an anesthetized Evie, because "awake Evie" is not very cooperative for medical visits (and none of us could blame her!). Evie's collection of minor procedures included: 1.  Strabismus surgery to correct her eye turn (again).  For our eye nerd friends, she had bilateral muscle resection of her lateral recti and also her inferior oblique in the right eye, as well as Exam Under Anesthesia (EUA) and DCR. 2.  Punctal duct clearing/expanding--Evie's punctal duct anatomy is quite interesting and takes her tears on a roller coaster that goes up and then down, which means that her tears just c...