Weight: 19.6 lbs
I’ve been in the hospital for 274 days now. If you see me holding my two hands together at midline, it’s because I am scheming my escape. I fake cry to get the upright humans to sit me up so I can analyze the room for various escape routes. While scheming, there’s a few things that I’ve started to develop a reaction to:
- loud noises that startle me = cry face
- sudden surprises (e.g. upright human suddenly shows up from nowhere) = cry face with real tears
- too many people crowding me / too much excitement leading to loudness = boo boo sad lip that transitions to beet red crying face
- neck roll stuffed under my neck = immediate fake cry face even before any human touches my stoma area
- hearing different pitches like animal noises (mommy makes silly meow cat noises) = turn head towards human and grin/smile
- high pitched voices = very active, excited kicks + smiles so big I open my mouth at the same time
What’s new:
- chewing on my fingers like crazy since those two bottom teeth feel like they are going to sprout out any moment now
- exploring my voice from the leak in my trach – I overheard mommy tell the nurses that it sounds like I am making weird chipmunk duck noises. I also make kazoo sounding snore noises when I’m really tired.
- PEEP air pressure level: the pulmonologist here really wanted to challenge me from the moment I arrived to CHLA. They decreased my PEEP level from 12 to 10 😱 I’m not gonna lie but it’s been a bit harder to breathe. My respiratory rate has been higher when I’m awake along with sweating much more and getting tired more easily. Breathing is hard work for me!
- Occupational and Physical Therapy fun: In the last few weeks, I got to ride on a big swing, a whale looking see-saw, and the Spin ‘N Saucer wagon. I also had fun banging on drums and other musical instruments. My head control and ability to sit up more steadily have improved but I’ve got to work on my tummy time. I don’t like working out those muscles and the darned trach tubes are always awkwardly in the way. Just yesterday PT re-introduced being carried upright and leaning against a shoulder to get those tummy time muscles working. It takes an army to get in the right position with the tubes. I like my snuggle time with mommy against her chest and shoulder though 😍
