DS Awareness Day 3: Why Walking is so Hard

DS Awareness #3: Evie’s getting so good in her walker, that she surprised everyone in gym class by taking off to go tag her classmate during a game! Here’s a #tbt to the spring when Ms. Sassy Pants took off when I told her it was time to go home. She’s overcoming her hypotonia (low muscle tone) every day! With low muscle tone, walking or standing for long periods of time is hard work! #evietheextraordinary

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Repost with a giveaway! From Straitjacket to Starfish: A Shark Tank win

Update: Hi all, I am doing my first giveaway! If you read my blog post the other day on the miraculous Zipadee Zip, then you know how this thing has changed our lives as parents. The makers of Zipadee Zip liked my review so much, that they offered to help me do a giveaway. All you have to do is 1) "Like" their Zipadee Zip Facebook page and 2) leave a comment about why you could use a free Zipadee Zip on this post! The contest begins Wednesday, May 27 at 12:00 AM and ends on Sunday, May 31 at 12:00 AM. Good luck! a Rafflecopter giveaway ------------------------------------------------------------ Original post: There was a point in time when I was just proud I could swaddle teeny tiny Evie with a hospital blanket. Then she came home and started busting out of the blankets, and woke herself up all the time. Her arms flailed and her legs kicked while she was sleeping, which of course woke her up. But then she got bigger and craftier, and I needed to fin

It's Official! The Polka-Dotted Penguin book has launched!

It's official! My new children's book, "The Polka-Dotted Penguin" has launched today! How fitting that my labor of love launches on Labor Day. The writing of the book and putting all the parts together took about a year. It was definitely a pandemic-worthy project. I wrote this book because I wanted more books available for sharing with Evie's class for World Down Syndrome Day on 3-21 and for Down Syndrome Awareness Month in October. I'm happy to release my new book just in time for October! My hope is that this book will be used as a tool to start conversations with children about how to treat others who may look or act differently than they do. It's all about inclusion and celebrating differences. This book is perfect for ages 4-9, or any ages who love penguins, or really anyone who loves Evie! Here's how to order: Barnes and Noble (Hardcover): https://www.barnesandnoble.com/.../the-polka.../1140115530 Amazon (Hardcover, Paperback, Kindle) :

Things I never thought about with food

We got the go-ahead from our GI doc to cut down the amount of formula by g-tube to try to make Evie a little hungrier. There is a whole world out there about different philosophies of weaning kids off g-tubes, and I won't go into it here, but it's truly making my head spin. I am just going to give this plan a chance (of reducing 20%*) and give Evie a few weeks to figure out that food is even more fun than she thought. We expect she will lose a few ounces here and there, and our goal is to use some food strategies to keep her from losing too much weight while she expands her food horizons. The most important lesson for the summer is: FOOD IS FUN, EVIE! So you need your kid to gain weight. She doesn't even eat food with too much texture yet. She can eat purees and yogurt, and that's about it. How do you expand her palette and avoid food aversions at the same time? I haven't come across a comprehensive list of food tips, so I'm going to write down what

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

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