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

 It's been 5 days since Evie's day surgery at Boston Children's, and I am writing about our experiences in case it helps someone else.  The surgery:  Baby teeth extractions and 3rd strabismus (eye turn) surgery.  Evie's teeth were coming in all crooked and she literally had 3 rows of front teeth in some places.  With strabismus surgery, it was always possible that Evie would need a touch up.   So here we were, getting ready for her to go in as a 10 year old for surgery, when her last one was 5 years ago.   Things I was worried about: preparing Evie for the procedure, recovery from anesthesia, and nausea Preparation Social Story: I took the social stories on the Boston Children's Hospital page  and found the day surgery story. I then converted it to an editable Word document so that I could customize it for Evie. I waited until 3 days before the surgery to introduce the story so she could have enough time to process it, but not too much time to be ...

Hi all! It's been awhile!  If you've been wondering what we're up to, try our Facebook page and Instagram account @evietheextraordinary to stay up with the latest.  It's hard for me to keep up with more than a few sentences on a regular basis.  I wrote this post 1 year ago and never posted it, so here it is!  When we were planning our vacation to Grand Cayman, I tried looking up other blogs or videos about traveling there with kids with special needs. I didn't see anything out there. I'm hoping I can help other parents with our experience. It was such a fun trip!  1.  Airline: Right now, only JetBlue is the only airline that flies from Boston to Grand Cayman directly.  It was also very expensive and only flew on Saturdays.  We chose American Airlines, stopping through Charlotte, and it was perfect. 2-3 hours for each leg of the flight.  Our luggage was checked through to our destination.   This was our first time flying internationally a...

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) : ...

 Dear Evie Fans, I am so excited to share with you that my new children's book, "The Polka-Dotted Penguin," is coming out soon!  I've been setting up the hardcover, paperback, and electronic versions, and I'm close to the finish line!  Evie has read it and insisted on reading it to ME instead of the other way around. I'm very ok with that.  Here's a sneak peek at one of my favorite page spreads!  The reason I started writing this book was because I didn't feel there were enough books to choose from to read to Evie's class for World Down Syndrome Day.  I also wanted a book that was an enjoyable story that featured my favorite animal, the penguin.  Making the penguin a little different from the other penguins was the start of my book.   I can't wait to share my first book with you all!  I just need to figure out how to have a penguin launch party, and then I will post further details! Hope you all have a wonderful long weekend!

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...

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...

It's funny how Evie turning 5 just crept up on me, without too much fanfare.  Turning 3 was a big deal because she graduated from Early Intervention support, and turning 4 was heralded with a big birthday party.  This year, I wanted to give Evie a good mix of fun and celebration, but with consideration for her fear of large groups.  We ended up picking one of Evie's favorite indoor playgrounds and inviting close "framily."  It was overall a huge hit, except for when we all attempted to sing Jingle Bells instead of Happy Birthday (she hates happy birthday), and she freaked out.  Turns out she just doesn't want attention all on her.  Mama gets it now, Evie. This past year was full of firsts: 1.  Walking independently (goodbye, walker!) 2.  Putting solid foods in her mouth without gagging or crying 3. Licking an ice cream cone voluntarily and repeatedly 4. Saying more words verbally 5. Graduating to bigger ankle braces 6. Playing dress up ...

I had an unexpected opportunity to have a deep conversation with a 6 year old a few weeks ago.  She came in while I was feeding Evie lunch in a quiet room away from a party.  The chatty girl first asked what Evie was watching, and then did a double take when Evie babbled something in response to the snow she was watching. “Why doesn’t she talk,” she asked. I braced myself and answered that her mouth muscles are not very strong, and she is still learning how to move them to talk.   “Oh. I’m sad that Evie can’t talk.”  My mama heart felt grateful that she felt the same emotions as I do for Evie each day.  I thanked her for wanting good things for Evie, and assured her (and myself) that one day Evie will speak only a way that others can understand.  I asked Evie something where she answered in the affirmative with sign language.  I then told the girl that this is what Evie signed in order to say “yes.”  Our new little friend was ecstatic ...

When we first decided to go to Disney, I started researching how it is having a feeding tube at Disney, and how kids with sensory issues can still enjoy the "most magical place on earth." I found information here and there on various forums, by googling "which resort has freezers," and "ice packs at Disney," and "sensory issues at Disney."   I wanted to share what I learned in hopes that our experiences can help someone else. The technical 411 for fellow tubie parents: Evie is 4 years old, has a g-tube, but eats 3 meals a day of blended foods by mouth. She gets supplemental Real Food Blends 3 times a day. We are at about 30% wean.  We had gone to 50% wean, but she lost too much weight. The technical 411 for fellow sensory parents: Evie is terrified in a closed room environment with a lot of people.  She hates it when people speak on a microphone, and has almost physical pain when people start clapping and cheering.   However, she does fine ...