So the pulmonology team decided to start sprinting me to see whether I have truly improved in my breathing or not. To do this, I had to go to the miserable hospital where the medical team connected me to the monitors to make sure my oxygen, heart rate, CO2, and respiratory rates were within a comfortable range. Then they disconnected my ventilator completely! My life line 😱 I was able to stay off the vent for 15 mins while maintaining my oxygen levels and other stats. They didn’t want to push me too much for the first time so they shared with us a phased schedule to continue sprinting me at home. Starting at 15 minutes twice a day and then increasing to 30 mins after 2 weeks, and then to 45 mins, 2x a day in May until the next pulmonology appointment in June, as long as I can tolerate it.
This is me with full energy in the morning 🔋Connecting me to the monitorsPlaying with a paper towel while my vent circuit was disconnected
The nurse care manager was very excited for me 😅 I’m not sure why everyone was staring at me 😳 After the sprint, the medical team abadoned us and made us wait for a long time. That’s when daddy kicked it up a notch on the entertainment 🤣🤡There’s a rooster 🐔 in the room
Ok so not sure if that was amusing or straight terrifying 😨Super pooped after the sprint… I’ll just rest my leg however I want toAlrite guys let’s move onto cooler stuff like the beach 😎Redondo Beach along the EsplanadeSand everywhere!Huge tree at the park near the beach More beaching at ManhattanThere’s the nurse pushing me on the bike path while Mommy runs 5.5 miles the other way towards El SegundoPeople watching while waiting for mommy Shopping in the toy aisle Easter accessories anyone?Or maybe this one is better … A naughty looking bunny … This is my innocent “I didn’t do anything sneaky” lookThis is the seat I prefer in the van – right in between the seats outside of my car seat with a great view of the front ☺️Applying for Access (provides accessible van transportation for persons with disabilities).Guess how much that entire set up of stroller plus equipment plus go bag plus cool fan plus me weigh!!! 120 pounds!Now you’ll have more empathy when you see mommy struggling pushing all of this up the hill 💦This is where I would be sitting. Major upgrade in view compared to where I sit in the van now!Getting to meet mommy’s roommate from University!This is me, really pissed, with the medical personnel that replaced my GJ feeding tube. It feels uncomfortable! I was sweating big time and crying for the whole thing. This is me, holding on for dear life when I’m scared of something. The noise from the toy was alarming me 🙉 but I still wanted to look at it!
Good morning! I’m ready to go out!!! Please take this cute face outside 💁🏻♂️Preparing for the Redondo Beach Spring Fest with my noise cancelling ear muffs 🙉Petting zoo. I’ll just watch from here – they stanky 💩 Pony rides. Too bad I’m not tall enough. So many weird spinny rides! 😵🌀Fully loaded chili cheese fries to fit the carnival theme Trail in Palos Verdes to see the Point Vicente LighthousePurdy yellow flowers
pretty coastal views
We’re almost to the lighthouse!
This huge thingie use to be inside the lighthouse until automated equipment and remote control operators took over in 1971Orange poppy flowers at Manhattan Beach Botanical GardenWalking through the Manhattan Heights neighborhood to get to Manhattan Village, 2.5 miles away from home Huge trees!!! You can barely see me in the shade at the bottom Mossy looking ground coveringFinally made it to Ralphs! Some pretty good deals in the ad. Get them avocados mommy! Oh and I’ll have the sweet potato flavor of the baby food you’ve been staring at for so long.
Bubble break with OTMessy feeding time!The OT has been trying the Wilbarger Protocol (Brushing Therapy) on me. It involves brushing the body with a small surgical brush throughout the day using very firm pressure. Brushing starts at the arms and works down to the feet. It’s suppose to decrease sensory defensiveness and anxiety. Meh, I just like the deep pressure massage I get 💆🏻♂️Not sure what’s going on here but it’s like a secret clubhouse under hereBackyard water activities I’m not sure why I was dunked into the tub with my clothes on but I don’t feel as scared as I usually do during bath time. Maybe the uprights are trying to get me use to this bath nonsense.
Working hard on my sit to stand exercises! 💪🏻
Representin’ Daddy’s company
Oh dear, maybe it is time to lower the crib 😱Weeeeeeeeeeeeeeeeeeeee
