The Journey of James Weston

Monday, June 6th, 2022 We had James' pulmonology appointment in the afternoon and we received great news! We were able to make a wean to the ventilator settings. We decreased the pressure support by 2 from 20 to 18. We asked about how far the pressure support and the peep has to go down and he said 15 is pretty low for the PS and as far as the PEEP he isn't concerned about lowering it. The pulmonologist said that in 2 months we could start trials off the vent and work up to see where we are in December! These would only be for a few minutes a day to start. 🫁 So our next appointment in in August! Dad: "Doc, so can you tell me what time line you're thinking of for him getting off the vent?". Mom: "It's all been guessing game, right? It's like asking when you're going to be discharged from the NICU" Doc: "She's right". Because he can't promise a timeline. He is just guessing based on previous cases he's seen in the past. ...

*Please note if you are reading this update in your email as a subscription to "The Journey of James Weston" blog it does not show the videos uploaded to YouTube. Please click here ( bit.ly/JamesWestonBlog ) to go to the blog directly. Sunday, June 5th, 2022 James' day with Mom involved lots of playing and naps on Mom's bed. He has been trying to wiggle off of locations that are too high for him like his crib, mom's cot, and his big boy chair. We recently figure out a schedule that works for our family which allows Mom and Dad a 24 hour break each week. Between Friday, Saturday, and Sunday we each get a day to ourselves and the 3rd day is a Family day. Tomorrow James has an appointment, which automatically makes that Family day. This is his long awaited Pulmonary appointment! *Last week we suspected James might be sick so we submitted a sputum culture to the hospital lab. The good news is that it came back as normal and shouldn't prohibit us making weans to th...

Saturday, June 4th, 2022 Today James spent the majority of the day with Dad and sat in his comfy chair for the first time! Thanks Janet, James' 1st cousin once removed! 😂 Since he has total control of sitting up now he will be able to use this regularly. 😁 Yes you'll see in the photos that Dad put the chair in the medical crib. He was testing to make sure James would sit in it before moving all of the tubes and cords to get him on the floor, but he ensured that he was watching him the whole time. 👀 James is very active now wanting to move around, wiggle, almost crawl, now more than ever we have to have all eyes on him! 🤸🏻‍♂️ 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

*Please note if you are reading this update in your email as a subscription to "The Journey of James Weston" blog it does not show the videos uploaded to YouTube. Please click here ( bit.ly/JamesWestonBlog ) to go to the blog directly. Friday, June 3rd, 2022 When James isn't playing with Nemo and Dory in the bath you can find him using them as teethers. Thanks Beverly for these! 🐠 🐟 James had successful food tastes of green beans for "dinner" and really enjoys when Dad plays airplane with him. ✈️ He is a Daddy's boy! On a side note, we are waiting for a plumber and AC guy to come out. Yes, our AC and a toilet broke. 👨‍🔧🧰🔧 But man, it's nice to be in a rental! 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

*Please note if you are reading this update in your email as a subscription to "The Journey of James Weston" blog it does not show the videos uploaded to YouTube. Please click here ( bit.ly/JamesWestonBlog ) to go to the blog directly. Thursday, June 2nd, 2022 James had from row seats to his first thunderstorm. ⛈️ Now he had his fair share of summer storms while he was in the hospital but he was also on morphine! This is his first rainy summer at home! This storm started right around his bath and trach care time in the evening. Mom was going to be doing trach ties by herself since Dad was at a staff night out. So for James' safety we waited until after the storm passed by which consequently was when Dad came home, so it all worked out.  Other fun things that happened today was that James is very obsessed with Mom's hair ties. Honestly anyone who is wearing a hair tie on their wrist whether it be our physical therapist or a friend visiting he is going to try and take i...

*Please note if you are reading this update in your email as a subscription to "The Journey of James Weston" blog it does not show the videos uploaded to YouTube. Please click here ( bit.ly/JamesWestonBlog ) to go to the blog directly. Wednesday, June 1st, 2022 In the morning, James woke up with beautiful curls while the helmet was being cleaned.  In the afternoon after physical therapy, James helped Mom organize her files. Everything eventually turns into a teething toy! Well he tries! Since today was a bath and trach change day, we decided to get messy prior with some avocado and greek yogurt. James was a huge fan! We may need to invest in a bib! 😂 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