The Journey of James Weston

Saturday, September 17th, 2022 James had a great night sleep! Mom and Dad took turns going downstairs for breakfast 🥞🍳, since it didn't make sense to pack everything up for that. James experienced watching Saturday morning cartoons sitting in front of a huge flat screen TV. Then we watched the Notre Dame ☘️ game and James took a nap. He played with his new busy book and puzzles 🧩. We had a beautiful rainbow 🌈 show up in our view. James also figured out that the remote control is really important and must be held at all times. 😂 Rigging up a portable medical equipment cart. James doing some physical therapy stretches. 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, September 16th, 2022 Mom spent the day packing. 🧳 This required a new spreadsheet 👩🏻‍💻 since a trip to a local hotel is different than going to visit family in Jacksonville. For one, in Jacksonville we have a stash of back-up supplies that we would not have at the hotel. However, if we did have an emergency we could always just run home for something. There were things deleted off the original travel spreadsheet (like PRN meds, trach change supplies, and addional tubing) and some things added (like feeding bags, funnel for humidification chamber, and cleaning buckets). James has had quite a few changes since our last trip to Jax. For example, we switched from using a nebulizer kit with a tee adapter to using the Aerogen Pro, we stopped using zinc butt paste, and stabilizers for his G-tube. Overall if we already had a back-up in our emergency or diaper bag then we weren't going to bring more than that. The biggest item we didn't bring with us was the oxygen concentra...

Thursday, September 15th, 2022 James had his first 10 minute trial off the ventilator. This was the longest that he has ever been off and he did great! 😁 Check out the video! We recently purchased the Baby Jogger Glider Board for our City Luxe Stroller so that Mom could rig up a mobile device for staying at the hotel. This glider board is for when you have multiple children and one of them can stand while you push the stroller. Mom's idea was to create the "three-tiered cart" (that we have at home) by having all of his equipment on the stroller instead. Mom used two bungee cords and a small basket with a ledge to prevent it from sliding around. This would give us the opportunity to transport James from room to room without having the cart with us. When we go to an appointment or an outing James is on an HME (disconnected from the humidification chamber) and the ventilator is on the stroller. When we are at home James is using the humidification chamber (disconnected from...

Wednesday, September 14, 2022 James had Early Intervention therapy and James again cried the whole time. He kept turning around to look at Mom and just wanted to be held. as soon as Mom put James back in his bed he grabbed his pacifier put it in his mouth and grabbed a bean bag and threw it over his eyes. He was tired! 😩 😴 While he was taking a short nap Mom starting packing up to leave for our pulmonology appointment.  When we arrived at the office we waited for a while in the lobby and James was doing fine. However as soon as we got back to the room James became emotional and started crying. It's almost like he knew he would have his 2 synagis shots and end tidal C02 reading. We spoke to the doctor and let him know we wanted to be on the same page with starting trials off the vent and that James was doing great! So put off the shots until the end of the appointment. Then we received excellent news at our appointment! The pulmonologist wanted to decrease James' PEEP to 5! He...

Tuesday, September 13th, 2022 Today we had physical therapy and James got to try out his new "nugget". We got the knock off version from Sam's Club, which is identical and half the price. Essentially it's an infinitely configurable play couch made up of four foam pieces (base, cushion, and two triangle pillows), covered in a microsuede fabric cover. Later on James will be able to use this for making forts!  James was not a fan because he is going through the stage where he is just scared of everything. It's going to take some time for him to get used to it. So unfortunately physical therapy was James just crying. Not hysterically but enough where it interrupted therapy. This couch will be beneficial to get James into crawling. 1:30am - Light from the lamp These 2 photos were taken within 30 seconds of each other. New "Nugget" for climbing 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 ...