I’M WALKING ON MY OWN. THAT’S ALL YOU NEED TO KNOW!!! I’M FREEEEEEEEEEEEEEEEEEEEEE! 💨 Baiiiiiii

Howdy doody! Jenn here – Ein is being super lazy with the blog and all he wants to do is patrol around to explore his surrounding on foot.

I wanted to take a moment to reflect on Ein’s 2 years of life. As some of you may have heard before, parents of special needs kids tend to celebrate “inchstones,” those tiny little milestones no bigger than an inch but every bit as significant. They are often moments that parents of children who are “typically” developing may take for granted. While seemingly trivial, these daily events show us that Ein is in fact living, surviving, and thriving.

As Ein’s condition has progressed, inchstones have become even more important. These days we celebrate a day when he is able to breathe on his own longer than the day before or a day when he manages to head rock less than usual during the night. Even seeing Ein push a train slowly back and forth is an inchstone to celebrate.

Each little inchstone gives us a chance to celebrate his accomplishments, no matter how small. Inchstones have taught us the power of recognizing the positive in every day, not allowing the day-to-day struggles that we all experience to take over our thoughts. They have helped me to see value and accomplishment in the smallest of movements, the tiniest of steps, or the most miniscule achievements. They act as a positive force carrying me through each day, especially on those days when everything goes completely and utterly wrong and his progress goes 5 steps backwards.

There are definitely days—especially those days spent in the emergency room or seeing the trauma in his eyes the moment he recognizes the operating table —when it is difficult to unearth even a drop of happiness. During these times, the worst of the worst, I force myself to take a moment and remember how far along he has come, inchstone by inchstone, to create a moment of joy in an otherwise bleak day.

Had I not learned to celebrate inchstones, surviving all of the tough times I have experienced as a caregiver would have been immeasurably more challenging. Among all the happiness that Ein has bestowed upon us, seeing him grow through inchstones has granted me the best gift of all: the ability to see hope and joy in the most unexpected places.

When Ein decided to take his own steps on the morning of his birthday, I didn’t cry like I thought I would, but instead I had a rush of adrenaline the entire morning – the same feeling I had at mile 25 of 26 of the marathon or while in the small plane at 13,000 feet before getting dropped out for skydiving. I couldn’t believe it was happening and he just decided to do it on his own (with the encouragement of grandpa of course). The physical therapist tried so hard each session for months, every caregiver including nurses tried all sorts of motivation tactics but Ein insisted on holding onto something to walk. Coupled with the trauma of his GJ feeding tube getting pulled out completely, and those unstable jelly legs, there didn’t seem to be any light at the end of the tunnel with the self-walking. To see Ein muster the courage to overcome his fears, take the leap of faith and walk on his own was far superior than anything I have ever achieved. So many inchstones that became one GIGANTIC milestone. Ein works incredibly hard at everything he does, no matter how long it takes, and we couldn’t be more proud of him.

Ok I don’t know what all that mumble jumble is up there but let’s make this quick, I’ve got a lot to patrol in this house and trashcans to dig into! Chop chop typer!

Sprint progress: from 5 hours off the vent a day to 6 hours off the vent by the end of the month

PT progress: watch me walk on my own! Crawled through a tunnel for the first time at school. Went on a giant tire swing with some pals. Used a toddler treadmill, climbed a ladder, stood on a giant swing, opened all sorts of windows/doors, and stomped away during my physical therapy. My PT also taught me how to do the “I did it” dance!

OT progress: I started putting smaller objects in containers and learning how to functionally play with toys like pushing a train back and forth rather than knock it over or throw it to the ground. Started to pull objects. Licked lollipops, played with jello, sucked on nut butter from a stick, tried my own birthday cake. Still working on stacking items though.

Speech progress: my signing has become more purposeful and intentional. When I want you to push me higher on the swing, I will let you know!!! New signs: my own version of turning “on” stuff like the fan, “shoes”, “pull”, “please”, and an attention grabbing “cheeeeese”. I can point to my ears now when asked! I love doing fistbumps.

My birthday: celebrated 3 times! First at school while everyone sang to me with my birthday crown on and near a tall plastic cake with tons of stacked layers. Second was with my mah-mah and yea-yea grandparents on my actual birthday. I got many specials treats cooked by grandma. Third was with my po po, gung gung and yee ma’s family at my house, the following weekend. I got a brand new double decker water table that I’ve been exploring even at night.

Outings: Broad museum, Angels Flight Railway, Grand Central Market, road my first escalator down from Music Center, South Coast Botanic Garden, International Printing Museum LA Printers Fair, supported my cousin at his tee ball game in Encino, Redondo Beach Farmer’s Market, did my first SKECHERS Pier to Pier Friendship 5K Walk even though I was in the stroller most of the time. Got a sweet medal with all proceeds going back to my school.

Pediatric Therapy Network Leaps & Bounds Program: on 10/29, I started this center-based early intervention program led and run by therapists with one lead teacher. It combines group social language-cognition, occupational, physical and speech therapies. They base their philosophy on Floortime, with plenty opportunities for circle, snack, and share times. I go 3 times a week 8:30am-11:30am.

Halloween: I went to my first pumpkin patch at South Bay Galleria. I was kinda scared but mommy kept making me pose near a bunch of round orange things. I got to trick or treat for the first time on foot in the administrator’s office at my school. The principal and I are real homies. I always look for him when we stop by there. At Leaps and Bounds, I was the lead in the parade with the most amazing space shuttle Eindeavour costume that daddy made from scratch and sits right on top of my stroller. I cruised in the Eindeavour at Del Amo Fashion Mall for the night trick or treating (air quality was terrible outside from all the crazy LA brush fires 🔥)