My new Adventures

I’m having so much fun learning new stuff these days! I’m practicing sitting up with just a little help, and Grammie keeps telling me how awesome I’m doing. She, Ms. Dawn, and Grandpa also help me get on my tummy with my knees tucked under, and Grammie says this is going to help me learn to crawl. My arms are getting stronger too—I can almost lift my chest and head off those pillows they use to support me. Go me!

We play so many fun games together. My absolute favorites are peek-a-boo and playing with my toy cars. Oh, and looking in the mirror? That’s a blast! Ms. Dawn even uses the mirror to help me see what I’m doing when everyone moves my arms and hands around into positions I can’t see otherwise because, well, their hands kinda block my view. But with the mirror? Problem solved!

I’m still a bit of a night owl and love to play at night, but I don’t need as many naps during the day anymore, which means more time for fun then, too. I’m also getting better at moving my pelvis—this lets me do a little wiggling down in my bed or chairs. Of course, Grammie and Ms. Dawn tried to outsmart me with pillows in my way, but don’t worry, I’m already working on how to get around them. I’ll figure it out sooner than they think!

Another cool thing—I’m doing great with taking breaks from the ventilator. I’m up to 2–7 hours off it each day! Grammie says I do better without it sometimes and that my coughs are getting super strong. She also says it’s easier to clear out my lungs and tracheostomy since I’ve been using my Volara and shaker vest devices. These gadgets are seriously cool. The Volara feels kinda like a massage for my trachea—it pulses and blows air to make sure all my lung meds get in deep and help thin the gunk in my lungs so coughing it out is way easier. Pretty neat, huh?

Here’s a quick breakdown of the Volara system:

"The Volara System is a medical device designed to provide Oscillation and Lung Expansion (OLE) therapy, which helps move lung secretions, expand the lungs, and prevent or treat lung collapse (atelectasis). It combines three awesome therapies: Continuous Positive Expiratory Pressure (CPEP), Continuous High-Frequency Oscillation (CHFO), and aerosol medication delivery.

And here’s the deal with the shaker vest:

"The shaker vest, or high-frequency chest wall oscillation (HFCWO) vest, helps loosen and clear mucus from airways. It uses quick bursts of air to make vibrations on the chest, shaking mucus loose so it can move from the smaller airways to the bigger ones. This makes it way easier to cough everything up."

I'm getting bigger and stronger every single day! I’m so thankful that Mommy, Daddy, and Grammie fought so hard for me when I was born and had to be medevacked to West Virginia Medical Center, J.W. Ruby Hospital. Back then, a lot of the medical pros thought I didn’t have a chance, but guess what? I’ve been proving them wrong ever since! I’ve shown everyone that I was totally worth fighting for, and giving up on me was never an option. On June 10, 2025, I’ll be turning 1 year old—such a huge milestone for me, and I couldn’t be more excited! Keep following along as I continue to prove to myself and the world what I’m capable of. With my amazing family and support crew backing me up, and my strong willpower, the future’s looking pretty awesome!