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

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...

For those of you getting excited by my title, no, she is not completely eating by mouth yet.  But she is completely on real food! Evie just switched this past month to a different "formula" because Pediasure Peptide 1.5 density seemed to be causing her to lose weight.  She had been gaining on 1.0 density, but we were trying to help her to cut down on the amount of formula needed to maintain weight and still be interested in food.  Once she started losing weight, the GI doctor theorized that she was having absorption problems with the Pediasure, and suggested that we just switch her to Real Food Blends or Nourish. Both of these blends are real, blenderized food, and I was a big fan of getting her off of formula.  Not only would it be healthier in general, but she might become more regular as well (sorry, TMI, but not sorry). Back in our Pediasure days, we used one can a day and poured some in through the g-tube throughout the day, as you would any liquid with the ...

Gearing up for the holidays was a whirlwind.  The week after Evie's birthday party, her class did some holiday activities, one of which was role-playing Santa and his reindeer, and climbing down the chimney (aka tunnel)!  I absolutely loved the picture they sent me of Evie, aka Santa, being pulled by 2 reindeer classmates.  This is what inclusion is!  Evie was fully included in the activity, and she was given support so she could fully participate!  I hope she understood how lucky she was to be Santa.  At least she kept the hat on.  We went to visit my parents in CA over the break, and it was nice to have warmer weather and a change of scenery.  Evie was an absolute angel on the plane going to CA and coming back.  I am so thankful for the iPad...I mean... for my angel of a daughter. Some fun family activities we found in the Riverside area were the Mission Inn, which was decorated for the holidays , Mt. Rubidoux for a quick hike ...

Throwing a Penguin-themed birthday party for 15 kids in your home is no joke. First you have to decide if you're insane enough to do this.  Then you have to think about whether your sensory-sensitive kid (sight, sound) can handle having so many people in their house. For this rookie mom, I at first didn't make the connection that 15 kids meant that parents and sometimes siblings might show up.  Once I got a grasp of the idea, I still thought it was doable if we had a good structure to prevent chaos.  And before you ask if Evie likes penguins, the answer is: yes, she does, but it's definitely penguin-themed because I like penguins and she lets me get away with it! I asked Evie's favorite local musician if he would be willing to do a music class for 30 minutes.  I was ecstatic when he said yes.  If he could keep the kids busy for 30 minutes, that left 60 minutes to entertain them. 10:00 am Kids arrive and play in playroom in controlled chaos (controlled = p...

I'm having some trouble posting to so many places, so here is a summary of Days 7-14!  Thanks for all of your encouraging comments on this month of DS facts!  It makes it worth the effort! 💙💛 Day 7 DS Awareness: Embarking on the DS journey can be a roller coaster. It is our “framily” who keep us going when life throws some unexpected side trips, and who cheer with us during the many small victories. Thank you to everyone who has supported Evie for the Buddy Walk this year! We love you and appreciate you!   Starting out the Buddy Walk! Evie was overwhelmed by the loud cheering at the start line.  Day 8: An estimated 90% of moms with a prenatal DS diagnosis will choose to terminate their pregnancies. When I first found out our diagnosis, I had to search hard in general literature to find anything positive about having a child with Down Syndrome. Increased availability of non-invasive blood tests that can identify chromosomal defects could potentially elimi...