The Journey of James Weston

Thursday, November 24th, 2022 James had 3 outfit changes today. Unfortunately his G-tube has been leaking pretty bad. We have been trying to transition feeds into his G from his J.  His feeds are currently: 40ml/hr of feed + 5ml/hr of water = Rate of 45ml/hr This is over 20 hours adding feed every 4 hours during the day and once for nightshift (8 hours) overnight with ice packs.  Then we do 100ml at 45ml/hr (2½ hours).  Recently we've switched from a 1½ hour break to giving him water/feed into his G instead. We started at a rate of 30/ml and have increased to 50/ml.  For Thanksgiving dinner James sat in the family's vintage wooden highchair🪑. He got to visit with his Aunt Taylor, cousin Makenzie, her boyfriend, and "Aunt" Lauren. It was a late night for James so we rolled his Pack 'N Play into the dining room for him to sleep. However he gets big FOMO and cannot be away from the party. P.S. You can email James your love and support as often as you’d like. Mom and...

Wednesday, November 23rd, 2022 In the morning, James took a couch nap while off the vent AND with the passy muir valve. He was satting 98 on his own! James is skipping some steps as most baby toddlers are fully off of day hours before sprinting during naps. Mom watched him closely looking for any signs of distress. James sat the bar and helped Mom chop while we prepped for Thanksgiving. He was digging some country music too. 🎶 🤠 In the afternoon, Mom had her last pregnancy blood test which confirmed a negative HCG level. 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

Tuesday, November 22nd, 2022 Prepping for Thanksgiving! James helped mix things up in a bowl with his spoon. He also worked on the fruit salad. James is now up to 4 hours off the ventilator twice a day! We started it yesterday. So that's sprinting for 8 waking hours. We even have James napping off the vent and he is doing great! Next step is to speak with our pulmonologist over the phone on the 28th to talk about weaning on the nightshift!  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

Monday, November 21st, 2022 Relaxing in Jacksonville waiting for Juju and Aunt Robin to return from Savannah.  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

Sunday, November 20th, 2022 Today is Aunt Robin's Birthday! 🥳🎂🎉 In the afternoon, Dad's family from New Jersey stopped by as they were nearby at Disney World. James got to meet his Aunt Debra, Uncle Frank, Cousin Abigail, Cousin Gabrielle, Cousin John, and Baby Jordyn. Jordyn is technically James' cousin 1st cousin once removed but most people would probably just say 2nd cousin. 😂 James and Jordyn played nicely together sharing toys and even dancing to some music. Cousin Gabrielle gave James a much needed haircut 💇🏻‍♂️ and showed Mom how to use the clippers. ✂️ So cute! Afterwards we went out to dinner and James really needed a nap.  When we got home we still had about an hour of packing up before getting on the road to Jacksonville. Mom noticed that the pulse ox alarm was going off and James sounded and looked like he was having trouble breathing. We noticed that he was pulling at his 2x2 split gauze under his trach and it was bunched up in a ball lifting his trach u...