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

You know you're a mom when your phone rings, and you recognize the number as the one for the school nurse, and promptly hold your breath, imagining the worst.  Usually they say right away "Evie's ok," and then continue on.  Today they didn't say that, and I was having a minor heart attack with every second that passed when someone who WASN'T the school nurse was calling me FOR the school nurse.   Apparently there was a substitute nurse today (and for the next 2 weeks), and she was having trouble getting Evie's g-tube extension connected to her stomach port.  Somehow the whole g-tube button came out of her stomach, and the one other time this happened at school, the school nurse knew exactly how to get it back in and didn't even call me until it was back in.  Not today.  The person calling me said that she was calling for the nurse, and that Evie's g-tube button fell out, and would I like to come and put it in?  I said, well, I'...

How many optometrists does it take to find Evie's glasses prescription?  Today I found out the answer is 3. Over the last several months, I thought I noticed Evie squinting.  I at first brushed it off because her last retinoscopy (the process of determining one's glasses prescription by watching the direction of the light reflex on the retina) had shown a mild myopic/near-sighted prescription.  But I got to thinking that it had been a couple years since this anesthetized exam (aka Exam Under Anesthesia (EUA)), and decided to take her to a pediatric ophthalmologist known for her touch with kids with special needs. It was a battle zone.  We tried it the nice way, but Evie kept saying Bye Bye and trying to open the exam room door.  I held Evie down while my husband kept her legs from flailing, and the ophthalmologist pried her tight lids open while trying to take 1-second swipes with her retinoscope to see the retinal reflex.  After we were all a sweaty me...

Hi Evie fans!  I see some favorite things being featured on Amazon Prime Day (July 15-16), so I thought I'd share them. I'll keep adding as deals get released the next couple days! EVIE's RECS: Tegu Blocks: Evie got these when she was quite young, and as she ages, she appreciates the Tegu Blocks more and more.  They have a satisfying magnetic click, come in different shapes and sizes and colors, and they build fine motor skills! Anything Peppa.  Enough said. This isn't exactly on super sale, but we love it so much, that I wanted to share it anyway. Peppa's house has lights and sounds as well. You can turn off the sounds once you get annoyed (it took me about a week to get annoyed). I just bought Connect 4 for Evie today because she has shown so much interest in this game after watching Blippi play it on Youtube.  If you want to be the most awesome house there is, you can buy the lawn version of Connect 4 and we will spend all day with you! Th...

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...

Dear Daughter: I guess the easy answer for saying what I want for Mother’s Day is that I would love a big fat nap. But beyond that, from the depths of my heart, what I want for Mother’s Day and any other day, is knowing that I have helped you be your best self. I want to know that you are enjoying life to the fullest, and showing this world that you are so capable, even if you have an extra copy of a chromosome. It doesn’t bother me that you took a while longer to learn to walk. I am mostly proud of the ways that you have learned to enjoy the small things, like making a duck out of Play-Doh, and playing flashcards with mommy. I want you to know that although the world says that you can’t do many things, that the smaller microcosm of the community around you is cheering for you so hard.  When I post things on social media, our friends notice the little things about you like how you roll up your sleeves before you set yourself to a task, or how you fold your little hands i...

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...

For those of you who don't already know, Evie has an augmentative communication device called a NOVA Chat.  While Evie's oral motor skills are getting stronger, she still is not able to express herself verbally, and needs a way to communicate, especially in the school setting with people who do not know her sign language motions. When we were first presented with our options at Boston Children's Hospital in the augmentative communication clinic, we had to decide between the iPad and the NOVA Chat.  We chose the NOVA chat because Evie is already way too attached to the iPad and we want her to see the NOVA Chat as a communication device and not a potential Youtube playing device.  But the iPad is a perfectly good choice for other kids! Evie's preschool team has fully embraced the NOVA Chat.  We attended a half day training with a Saltillo rep, which was helpful, but the training was oriented more towards the therapist than the parents. The NOVA Chat has a home pa...