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

Evie's world has changed for the better.  She got SMO's, or AFO's. I've heard a lot of acronyms, and this was just another set of them until I realized what they really meant.  Supramellar orthotics or ankle-foot orthotics help a child to feel more stable so that they can learn to walk.  In Evie's case, her ankles were so weak that she would try to keep her legs stiff so that she didn't feel so unstable.  She was really afraid of falling over, and I don't blame her.  Meet the cutest little SMO's you've ever seen.   When you go to the orthotics place (we went to NOPCO, which is a veritable empire of orthotics centers all across the region), they will take measurements of your child's foot with a measuring tape (hopefully not necessary to make a cast of their foot).  We waited a month for this appointment, so I would advise not waiting to make that appointment. You need a note of medical necessity from the doctor to got here.    ...

This past week, I noticed that a woman in the waiting room had a teenage son with Down Syndrome. When I later spoke with her, I told her about my 2 year old daughter with DS.  Her eyes lit up, and we proceeded to speak in Spanish (very badly, on my part) about our kids. We had an instant kinship. A few days later, her husband came in and proudly showed us pictures of his son on his cell phone.  He wanted to show me that his son could ride the T with his friends.  He then showed me a video of his son dancing Latino style (very well, I must say), and we shared a "I-have-a-kid-with-DS-and-I'm-so-proud" moment. Later that afternoon, I met a man in his 60's who has DS.  He came with a caretaker, and was in a wheelchair.  He kept falling asleep while we were trying to talk to him.  He was nonverbal and pretty out of it. While they were 2 very different individuals, the contrast was completely obvious to me, right there in front of my eyes.  Growing up no...

I got the idea for this post because of a comment made by Evie's fairy godmother, joyosity.   But first, this post begins with a clear plastic box. Entertaining Evie is getting tougher. I have mom guilt whenever I turn to the iPad, so this week when we went out, I put some items in a clear plastic box for Evie.  We brought this to joyosity's house today and she commented that it looked like a Babysitters' Club kit.   For those of you who are not familiar with the Babysitters' Club, this was the best book series ever for a young middle school girl, right up there with Sweet Valley High. The girls in the Babysitters club put together personalized kits to take with them to entertain the kids when they babysat. I was thrilled that my voracious reading of the Babysitters Club had paid off and that I had subconsciously followed my early tutelage by the esteemed Babysitters.  So here is what my Evie-sitting kit had inside today:  1. Dr. Seuss' T...

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...