The Journey of James Weston

Friday, November 25th, 2022 T James played catch with Tommy. Tommy likes to play a game where he brings you the ball but then if you try and grab it he will beat you to it. You know, normal dog stuff. James also got to see Uncle Mark who came to visit. James has been taking just one afternoon nap around 1pm instead of his normal two at 11am and 3pm. He never misses a good dance party though. Check out the video below.  Mom & Dad also gave him his Friday night bath which is done right in the TV room on top of a massage table. We put down a waterproof mat since James likes to splash a lot now. The size of the portable tub makes it impossible to use at the kitchen sink. We also need to be careful of his trach that water does not go down and drown him. Now that James is off the vent for several hours a day we may be able to get one of those bathtub baby seats for a real bathtub. Previously the ventilator cart was prohibiting us from getting into a bathroom. In our home, our only ba...

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