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

A little overdue, but Evie is 2! I don't know where the time went. I have to say that I much prefer Year 2 over Year 1. Year 1 was filled with anxiety about her health, oxygen tanks and feeding tubes, and going to numerous doctors' appointments. Year 2 was more about watching her grow in so many ways, and getting to enjoy her more. I swore I wasn't going to do anything for her birthday after last year's wedding birthday party, but Uno's did a great fundraiser that weekend for the Massachusetts Down Syndrome Congress, and donated 20% of the bill to the MDSC.  So we invited our friends to eat there with us! As she turns 2, here are some FAQ's about Evie that you may have:  Is Evie walking yet? No. But we just picked up Evie's ankle-foot orthotics, which we hope to ease her into as soon as I can get her bigger shoes to accommodate them. New purple sparkly hippo shoes are on their way! Hopefully with a more stable ankle support, she will feel more ...

The title of this post is a salute to the Sound of Music, which is one of my favorite musicals.  But mostly it is a list of Evie's favorite things.  Scroll to the end to see how Evie climbs mountains.  I'm always on the lookout for the coolest toys that will help Evie's development, so hopefully this will help someone else. The #1 favorite is Violet.  Since she was a baby, Evie has loved this toy. First for the light on the dog collar, then for the music, and now for the ability to press buttons and change the music like any independent toddler would want to do.  She likes the sound of music for sure! One of Evie's favorite books is Click Clack Moo.  This book makes it's own reference to the Sound of Mooosic, and it's awesome!  Other favorite books are Guess How Much I Love You and the Pout-Pout Fish.  Lift-the-Flap books are irresistible to Miss Evie. Here's a trio of books that she loves: Chicka Chicka Boom Boom, Dear Zoo, and Click Cla...

...and I meant this as an adjective and not a verb.  Evie is eating!!! I haven't blogged in awhile, mostly because of being busy, but also because I have been focusing my energies on getting Evie to eat.  Since I last blogged, Evie has transitioned to a new nanny and also gone through a developmental leap (which I never knew about until I had a baby!).  In the midst of all of that, Evie decided she had zero interest in eating food by mouth. Zip, zero, zilch.  She would turn her head away, and if we begged her too many times, she started to cry.  My biggest fear was a food aversion, so we just backed off... ...and silently freaked out that Evie would never eat.  Well, I freaked out.  My husband almost never freaks out.  I like to think that my freaking out/intensive planning sometimes gets this family to bigger and better places.   My husband may have a differing opinion. Over the past couple of months, Evie had gained enough weight for ...

I wouldn't trade Evie for the world. But the other day, I felt a sudden sadness that this world expects certain things and she is not on its timeline.  We celebrate the same victories with her...just a lot later. And I see the gap of time growing bigger from her peers.  I recognize that we are now entering the time I dreaded a bit--the time where she's not a teeny tiny baby whose job is only to look cute. Now she's expected to walk and talk (insert where someone tells me their child didn't walk until age 2, which I do appreciate).   At 20 months (Happy 20 months, Evie!), Evie is able to stand with assistance or lean on something for longer and longer periods of time. But I don't know if she will walk this year or next year or even by age 3. Here's a nifty chart that shows the typical range for certain skills for a typical child vs a child with DS.   (from "Down Syndrome Awareness Month."  http://blog.epichealthservices.com/down-syndrome-awarene...

I started motherhood determined not to let Evie have too much screen time.  I would say that still applies for TV, but I am now convinced that the iPad is a great tool for Evie's learning.  She is, after all, a child of the future!   As technology gets used more and more, especially with assisted learning, I see it as an advantage for Evie to already know how to use an iPad. Here are our favorite apps! Peekaboo Farm: When Evie first started looking at this app, she didn't understand that she should hit the screen to see the animals.  Now she understands Cause and Effect, and gets rewarded by a cow appearing and mooing at her.  This is not to be confused with Peekaboo Kids (instead of Farm), which isn't bad, but shows certain animals answering nature's call and then cackling, if you're offended by that. Peekaboo Fridge:  A variant of Peekaboo Farm, but just as good.  If we are teaching her about food, then why not?  They also have Peekaboo...

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...

One year ago, we were already in the hospital with Evie, who was prepped for her big day.  It's not every day that your child goes in for open heart surgery. I felt terrified, excited, anxious, and confident all at the same time.   Terrified because of all the risks of heart surgery. Excited because finally my baby wouldn't be too tired from the 3 holes in her heart to do anything.  Anxious because Evie's life was in someone else's hands. Confident because Evie was already a miracle from God, and He had already shown us that she had things to do in her lifetime!  When Evie was picked up by a nurse and the nurse walked away from us to the OR, she looked over her shoulder at us and my arms felt empty.  The hours of waiting went in segments of phone calls of updates from the nurse. We wandered around the hospital, just waiting for the next call.  The hardest segment was after the call that Evie was on the bypass machine, which essentially meant that her heart ...