The Journey of James Weston

Friday, September 30th, 2022 In the morning Mom completed a 1 hour interview with Early Steps for the annual re-evaluation. Seemed pretty unorganized, since 2 out of the 4 people did not show up and everyone was given different times. It really was so much fun answering questions that are not relevant at all to a trach/vent toddler who was born 3½ months early and spent 8½ months in the hospital. 🙄 The coordinator didn't even bother to take 2 seconds to look at his chart before making stupid comments while also sharing her lack of basic anatomy. You question how people made it this far in life. 🤯 James watched Hoosiers and played with his new basketball. 🏀 He was obsessed! He also got in some phone time and booked some demos. More importantly, James got some up close and personal time with both dogs at the same time! Puppy heaven! 🐶 🐕 🐾 We decided to start back on the 30 minute vent trials since the hurricane has now passed Jacksonville. P.S. You can email James your love and...

Thursday, September 29th, 2022 As the rain and wind continued, we had a movie marathon. James experienced the "Dark Side of the Rainbow" 🌈 when you watch the Wizard of Oz with Pink Floyd's Dark Side of the Moon Album.  James tried bell peppers 🫑 for the first time. Just licking, not biting. It was good for him to get a sense of different textures. 🌀 The storm hasn't reached Jacksonville yet and may just go out to sea. 🤞 So far just a lot of rain, severe wind, and flooding. Preparing for power to go out soon. Yesterday it was on and off throughout the day. We do have a back-up generator for James' ventilator. 🙏🏻 Praying for all of those in the SW Florida area with nothing to return to. 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

Wednesday, September 28th, 2022 Unfortunately we had to cancel plans to meet up with some friends because we needed to get James' equipment fixed. On top of that the hurricane was now headed this way. 🌬️🌀⛈️ The rain started early this morning and it says it won't stop for a few days. 😲 We waited until 9am when the other DMEs opened and hadn't heard anything from our sale rep guy. Mom reached out directly to the two places he recommended. The first place just rang and rang with no way to leave a message. It sounded like they had already closed early because of the storm. The second DME called All About Pediatrics had picked up but was very rude. They were very short with Mom saying, "We don't rent, you're out of luck". Mom let them know that our DME could give them a referral because we have a ventilator dependent baby with a hurricane coming but they enjoyed telling Mom "No". It's so sad when people choose not to do the right thing. We are...

Tuesday, September 27th, 2022 Can you spot how many outfit changes James had today? 👕 🩳 His G-tube was leaking pretty bad. Today we decided to give James a haircut which was more like a trim. We took him outside and had him sit on Mom's lap while Aunt Robin trimmed him up. At first he was fine but then tried to grab the scissors ✂️ and cried the rest of the time. We think it was just too much all at once because it happened so quickly.  During the time outside on the patio lanai we noticed that his pulse ox machine was not working. Of course, the one piece of equipment we did not bring a back-up of broke! This monitors his oxygen and heart rate. It showed an error "Replace Sensor". We did all the things...wiping the sensor with alcohol, changing the pulse ox probe, turning it on and off. We have a new RAD-G pulse oximeter and it is not our favorite. Since it was after hours and our DME would be closed we decided to text our sales rep for Masimo who we were connected wit...