The Journey of James Weston

Monday, October 10th, 2022 James had an early morning pulmonology appointment. It was scheduled for his monthly synagis shots but we were more concerned with speaking to the doctor to talk about next steps with sprinting off the vent. Unfortunately the doctor was not available and we were meeting with the nurse practitioner. They seemed super overwhelmed and overbooked with patients. The front office receptionist suggested we switch to the other pulmonologist in the office if we wanted to see a doctor. No, how about we stick to the same doctor who has seen James since the NICU since we are so close to the finish line.  Here are the things we discussed: What is the next step in James printing off the vent? We are currently at 30 minutes twice a day. The nurse practitioner said she would speak with the doctor and call Mom in the afternoon. We asked about putting James on a monthly proactive antibiotic nebulizer treatment called "Tobi". The NP was aware that we had discussed thi...

Sunday, October 9th, 2022 When Mom arrived home from her staycation Dad and James were visiting with Aunt Jess. James seemed happy and was playing with Dad but after just a few minutes James started crying out of nowhere. 🤷‍♀️ It's like he just realized that Mom came home. He didn't reach to be held but as soon as Mom picked him up he dug his head into her chest. He is still learning his emotions. 😭 We did James' bath and trach care pretty early before leaving to go out for the evening. We drove to St. Pete to check out a local play that one of Mom's friends was performing in at William's Park. This was James' first theatre experience and first time in St. Pete. First we went down the pier to see what was happening at the Fall Festival. We ran into Uncle Ryan and Conner! Definitely something to checkout next year, we seemed to arrive when everything was closing up. James enjoyed looking at the lights in the trees 🌳and the boats in the pier. ⛵ 🛥️⛴️🚤 🌊 🚣🏻‍...

Saturday, October 8th, 2022 Dad spent the day with James. During his 30 minute morning trial sprinting off the ventilator, Dad took him outside on the back deck to experience the outdoors. They built a fort, played with puzzles, and anything else James requested. 😆 James is on the move and when he gets a chance he is going to try and scoot around to unknown territories like underneath and behind furniture! Scary time for parents. 😲 Time to start child proofing! P.S. You can email James your love and support as often as you’d like. Mom and Dad read these email to James as they come in. We all love them! JamesWestonAbramowitz@gmail.com

Friday, October 7th, 2022 Mom and James played hard on Friday. 💪🏻🏋🏻‍♂️🦵🏻🤸🏻‍♂️ We started with his 30 minute trial off the ventilator and took advantage running around the house so James could experience as much as possible. 🏃🏻‍♀️ Mom disconnected his pulse ox 😲, clipped his Farrell bag to the "flying squirrel", then hooked that to her legging pockets (Pockets are Life!). First we went outside the front door and took a quick walk down the sidewalk. This probably looked insane as Mom was carrying a toddler with equipment hanging off the side of her pants and cords draped around her neck. After realizing she didn't even have shoes on we went back inside and walked out on the back deck. We were hoping to see some squirrels but they were upset with us for not feeding them recently. 🐿️ 🥜 James loved feeling the warm 🌬️ Fall breeze 🍃 and looking at the trees 🌳 and clouds ☁️.  Lastly, Mom took him upstairs to his nursery and James just cried. We think it was just ...

Thursday, October 6th, 2022 James had fun playing with his airplane. He had the pilot take a nap in the back. 😲 He also enjoyed his farm animal puzzles. We are focusing on animal names and sounds. James will point to certain animals if you ask!  After PT, we had family dinner night and went to the Olive Garden. They were nice enough to get us a table with room for his stroller to be nearby. James ordered games on the checkout machine that showed up on the bill. 😂 While we were there, we bumped into one of Mom's friends she used to work with when she was in staffing (SRG). We probably stick out with having the baby on a ventilator. 😆 👋 Video below shows the repetitive scissoring leg movements that James does with his legs.  He did not want any bean bags on his legs and moved them all to his head. P.S. You can email James your love and support as often as you’d like. Mom and Dad read these email to James as they come in. We all love them! JamesWestonAbramowitz@gmail.com