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

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...

Sometimes when I'm hooking up Evie's g-tube in the food court in the mall, I look around to see if anyone is watching.  I still brace myself when someone shows interest in what we're doing.  I have no idea what they will say or conclude, but I do my best to explain why she has a feeding tube in a practical way. The Feeding Tube Association just released a brochure that tells our friends and family how to be helpful to us.  I love their list of what is helpful and what is not so much, that I had to post it.  Here is the full brochure: http:// www.feedingtubeawareness.or g/ Family_and_Friend_Guide_to_ Tube_Feeding.pdf Evie's mommy's commentary in italics below ( my original g-tube entry is here ): What is Helpful. Listening. Parents who are just starting on this process have a lot on their mind. They have concerns and they may not know all the answers yet. When Evie just got her g-tube, we were having trouble figuring things out post-NICU stay, and answer...

I've had this post ready for awhile now, but haven't published it because I thought it was a little bit of a downer. But I think it's important to bring up, because if Evie didn't have special needs, I probably wouldn't have paid as much attention to this. The other day, I read this article by a mom (and Facebook friend) who has an older child with Down Syndrome.  She has already traveled much of the road that we are just embarking on. When Your Child With Special Needs Doesn't Receive Any Invitations. By Sharon Randall As I read this article, I grew more and more sad. Oh, please, please--don't let this happen to Evie!  I hurt for her.  I can't shield her from peers who won't know any better and perhaps see something different about her when she's older.  All I can do is hope and pray that she makes friends who love her and look out for her. It's so great to see all the neat blogs and articles in honor of Down Syndrome Awareness m...