The Journey of James Weston

Saturday, October 8th, 2022 Dad spent the day with James. During his 30 minute morning trial sprinting off the ventilator, Dad took him outside on the back deck to experience the outdoors. They built a fort, played with puzzles, and anything else James requested. 😆 James is on the move and when he gets a chance he is going to try and scoot around to unknown territories like underneath and behind furniture! Scary time for parents. 😲 Time to start child proofing! 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, October 7th, 2022 Mom and James played hard on Friday. 💪🏻🏋🏻‍♂️🦵🏻🤸🏻‍♂️ We started with his 30 minute trial off the ventilator and took advantage running around the house so James could experience as much as possible. 🏃🏻‍♀️ Mom disconnected his pulse ox 😲, clipped his Farrell bag to the "flying squirrel", then hooked that to her legging pockets (Pockets are Life!). First we went outside the front door and took a quick walk down the sidewalk. This probably looked insane as Mom was carrying a toddler with equipment hanging off the side of her pants and cords draped around her neck. After realizing she didn't even have shoes on we went back inside and walked out on the back deck. We were hoping to see some squirrels but they were upset with us for not feeding them recently. 🐿️ 🥜 James loved feeling the warm 🌬️ Fall breeze 🍃 and looking at the trees 🌳 and clouds ☁️.  Lastly, Mom took him upstairs to his nursery and James just cried. We think it was just ...

Thursday, October 6th, 2022 James had fun playing with his airplane. He had the pilot take a nap in the back. 😲 He also enjoyed his farm animal puzzles. We are focusing on animal names and sounds. James will point to certain animals if you ask!  After PT, we had family dinner night and went to the Olive Garden. They were nice enough to get us a table with room for his stroller to be nearby. James ordered games on the checkout machine that showed up on the bill. 😂 While we were there, we bumped into one of Mom's friends she used to work with when she was in staffing (SRG). We probably stick out with having the baby on a ventilator. 😆 👋 Video below shows the repetitive scissoring leg movements that James does with his legs.  He did not want any bean bags on his legs and moved them all to his head. 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, October 5th, 2022 Yesterday we had to cancel 2 appointments: 1) Our first face to face with our new Medicaid Case Manager 2) Physical Therapy. We didn't know what time the air conditioning unit would be fixed so we had to reschedule both. Today had physical therapy and early intervention therapy. During physical therapy we finished some paperwork regarding our annual re-evaluation. Our physical therapist knows James' abilities as just as well as Mom but before she completed it she wanted to verify a couple of things. So we asked James to perform like a monkey just to make sure that everything was accurate. She also wanted to let Mom know that she was concerned for his posture because he has a very rounded lower back and in combination with what is called a sacral dimple could be a cause of concern for a tethered cord. She suggested that we get checked out by osteo because this would need to get fixed sooner than later and could affect his growth. We are not a huge fa...

Tuesday, October 4th, 2022 So last night was pretty bad! 😩 Three of us were in a king sized bed but we also needed to keep a pillow on the other side of James so he didn't roll off making it feel like four people in the bed. James' pulse ox alarmed all night. He wasn't even on oxygen all day but then as soon as he got into a deep sleep, and he wasn't even moving his O2 would drop. Mom and Dad were up all night trying everything... 🥱 suctioning, replacing the pulse ox, repositioning the trach, making sure there wasn't any water in the circuit, but nothing was working Mom turned on the oxygen tank . It just didn't make sense why all of a sudden he would need it but be fine during the day. James was sleeping soundly while our hotel neighbors were probably like 🤬 because of the peeping! For this very short hotel stay we only brought two oxygen tanks versus the huge oxygen concentrator. The first tank we started with was only about 80% full. Mom started on 1/16, i...