The Journey of James Weston

Wednesday, October 12th, 2022 The day started of by Mom bringing James outside for his morning sprint off the vent and upstairs so James could lay on carpet for the first time. The feeling of  brand new fluffy carpet! 😍  In the afternoon we had our appointment for the sacral dimple/tethered cord consult. We first met with a nurse (a new nurse because there has been high turnover) and she needed to go over every single detail of James history and medical background. It was a good thing though because they didn't even have it correctly listed that James has a GJ. They had it down that James only had a G-tube. 🤦🏻‍♀️ James was discharged from the hospital with the GJ, so this wasn't a new thing. We needed to get a new weight and height. James weighed in at 20 lbs (9.15 kg) and measured 28 ½ inches (72.5 cm) in length at 21 months. Unfortunately we couldn't meet with the doctor and we met with another NP who has never seen James. However we have spoken on the phone several ti...

Tuesday, October 11th, 2022 Since we were still waiting for James' sprinting schedule, yesterday Mom reached out to a lot of other trach moms on Facebook to see what others had done and what worked for their baby. Unfortunately a lot of these schedules were all over the place. Ranging from people only increasing trials off the vent by 10 minutes a week to those just taking their babies off the vent until they struggled. Mom wasn't thinking of something in between.   So Mom started the morning by calling the pulmonologist's office around 9:30am. She spoke with a receptionist and let them know that we were waiting to hear back from the nurse practitioner on several things (see yesterday's blog post). Four hours later we heard back from the NP. She said that we will be increasing our event trials from 30 minutes 2x/day to 45 minutes 2x/day. We will do 45 minutes for 2 weeks and then increase to 1 hour for 2 weeks. Then we will be back in the pulmonologist office for more s...

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