




Weight: 9.19 kg (20.3 lbs)
Height: 68 cm (26.8 inches)
Head circumference: 45.5 cm
What’s new:
- Trialing the go home vent: they have been testing me on the Astral and LTV vents. Still in progress figuring out which one supports my active lifestyle better. Vent setting updates: PEEP went back up from 8 to 12. Peak inspiratory pressure (PIP) went from 36 to 30. Breath Rate (bpm): Vent delivered breaths per min down 30 to 25.
- New helmet as of 7/31. Loving my dance party dinosaur design. Helmet keeps sliding up since I lay in my crib so much. They recently added stoppers to the back of my helmet to keep it from scooching up. Heat rash struggles continue, especially with my sensitive skin.
- Trach size change: custom ordered to a wider 4.5mm diameter, 48mm in length, and cuffless. Changed on 8/1. Still a leak tho, check out my ear-splitting booming whiney snore below.
- Music therapy: loving all the different music I get to listen to that aren’t just blaring hospital or vent alarms. I also get to play with different instruments. Bonus is that I get to stare at a pretty lady with a guitar the whole time. Mommy has also been playing different music for me to listen to including a Chinese playlist (mostly Sam Hui), a sleepy playlist (disney lullaby and studio Ghibli music box), acoustic guitar/piano & soft rock (Jack Johnson, Zee Avi, Norah Jones, Yuna, She & Him, Regina Spektor, Bird and the Bee, Kawehi, Kina Grannis, Pentatonix, Jason Mraz), oldies but goodies (Beatles, Elvis, Chuck Berry, Frankie Valli, Beach Boys), Hawaiian music, and of course rocking to good ol’ Disney Hits
- Puree tastings with speech therapy: carrots, peas, apple sauce, peaches
- Massage therapy: mommy does nice rubs with lavender lotion each night that she learned from the therapist. Each day I also do something called the cross-crawl to enhance my brain coordination and nervous system.
- Current pearly whites count: 4 teeth (2 front bottom and 2 front top teeth)
- Sitting in the Bumbo seat, the “throne” chair that is better for my posture, and jumping in the Exersaucer
- Gastric emptying scan: this was done to see if my extra gagginess and random spit ups were caused by slow digestion of food that sat around too long in my tummy but it ends up that I have accelerated emptying. It shocked all of us because my Buddha belly is usually looking a bit distended and firm/bloated.
- Nutrition: feeds recently started including a mix of Elecare formula with mommy’s brestmilk (only during 2 of the 5 daytime feeds – 50% Elecare 50% breast milk). Even though mommy has been pumping for 10 months, my fatty appetite is sometimes more than mommy can provide.
- New likes: staring at the mirror to see the people behind me, looking out the window near my crib to see what the nurses outside are up to, Peek-a-boo, the fan that cools off my sweaty helmet head, chewing on all my fingers, my banana tooth brush to soothe the teething

