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

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 ...

At Evie's graduation ceremony from her pre-K class today (she's going to the older pre-K class in the fall), she covered her eyes.  BUT she then got up and walked over to the teacher when her name was called, and then snuck a peek to see where I was, and then walked to me with her head down and threw herself in my arms.  She WALKED to me and knew what she was supposed to do!  I call that a victory!  3 months ago, she may not have done either of those things.  Evie was prepped by her teachers that this was the last day of school. She was not a happy girl when we pulled out of the parking lot and waved goodbye to the school building.  We are so thankful that she loves school that much.  Why does she love school so much?  Because she gets to do things like play dress up!  I am now scrambling to collect dress up necklaces, dresses, scarves, gloves, etc to accommodate her love for girly accessories!  We went to IKEA this weekend and bo...

I have to admit that I love fast results and efficient progress.  Evie has challenged that part of me, but has taught me that the waiting makes the victory all the more sweet. While her peers (even the ones with Down Syndrome) went on to walk and run, Evie trucked along in her walker.  I have learned that I need to remember that Evie goes on her own timeline and she will get there, but 3 years of waiting was hard! But she finally reached this huge milestone, and I am so proud!  And not only were her parents cheering her on, her classmates gleefully counted each step that she took, and her friends and family from afar celebrated with us. Here's a quick clip for you to share the excitement with us: I can't wait to give away the wheelchair! Just a couple weeks later, she now walks confidently down the hallway to the couch at home, and is attacking the stairs with gusto.  I feel happy every time I see her walk.  She wears Ikiki shoes indoors to allow he...

Guys. I had a huge breakthrough today. I actually did something the feeding therapist told us to do at home.  She had suggested putting food on Evie's tray to help her feel comfortable with finger foods around her, but to actually remember to do that and implement it is another story (along with all the other therapists' suggestions for various parts of her body). This Labor Day weekend, I found myself with time to focus on her eating with the intent of being creative.  We started lunch time with a canister of star puffs. I told her I was putting 10 stars on her tray, and because she loves counting, she actually watched me do it. Then we proceeded to eat her pureed mac and cheese while singing the Hokey Pokey.  (If you want to know alternative body parts to sing to entertain yourself during the 20th verse, I'm happy to share.)   It doesn't sound like much, but Evie didn't cry or throw her star puffs, and was willing to touch them and put them back in the canister....

Tomorrow is a big day. It's Evie's evaluation for preschool!  Our town has a great integrated preschool program, and once she has her evaluation, we will have an IEP meeting to decide what resources she needs to help her to succeed in school, and then off she goes!  *sniff* my baby *sniff* Evie has had a great 3 months in her new house!  She learned to climb stairs in the first couple of weeks.  We definitely have enough of them (3 flights!)!  Our new physical therapist had a pediatric walker to lend to us, and Evie took to it quite quickly. I couldn't believe my eyes when I took this video!  I didn't want to cheer too loudly, because cheering makes Evie cry.  But I was jumping up and down inside! Evie's eating has slightly increased in texture, and also we are trying the straw juice box again.  She is taking small sips of applesauces-water, but still not sucking on the straw.  She is also scooping up food herself from the bow...

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.    ...

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 ...

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...

Part of having a 1 year old seems to be that I'm bound to be asked if Evie is walking yet.  I cringe inside, because she hasn't even been crawling.  I knew that she would likely not be crawling by 12 months, and I know that every child progresses at their own pace, but it still hurts a little to say no.  It really helps me when people ask "What is Evie working on," instead of "Is she walking yet?"  I want to hug them when they ask the question this way, because I've just been spared having to give an explanation. Usually they are people who have no idea about Evie's medical history, but it still smarts a bit.  At this point, every baby progresses at their own pace, and I know that some kids don't even walk until they are 2 without having Trisomy 21.  So it's still "acceptable" that she's not walking yet. However, Evie is doing pretty awesome.  She is at about a 9 month old's motor skills, and she gets better by the week...