The Journey of James Weston

Wednesday, February 15th, 2023 Mom was able to move up our ENT appointment to early this morning. For the past couple days Mom had been on the phone between ENT and the pulmonologist to make sure that the sleep study results were sent over to ENT in time for this appointment. The doctor said the sleep study results hadn't been sent over yet but that it didn't really matter because James was doing great. We discussed the next steps on scheduling an airway evaluation in the OR. Our options were to schedule for either end of April or beginning of March. Mom opted for beginning of March. She said that we could start capping James at home and start weaning his nap times to capped by letting him fall asleep with a cap on for a little bit, switching to an HME, and continue extending the length of time on the cap. Unfortunately she said she did not have any caps in the office and would need one of the physician assistants to pick some up at the hospital across the street. Getting them ...

Tuesday, February 14th, 2023 Early in the morning our Medicaid Case Manager came to the house for a 1-on-1 visit. James is currently a Tier 3 so he gets visits quarterly and monthly calls. We had our PT right afterwards where we continued working on standing for longer periods of time. Lots of selfies today including some with a few tears (simply because he wanted to watch something on the phone and not take pictures). Dad bought James a drum. 🥁 Please pray for Mom's sanity. 🙉 Video below of James dancing. 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, February 13th, 2023 👨🏻‍🦽 We started off the morning at the hospital for an appointment with "Motion Analysis" to discuss a stander and or medical stroller. These were recommended by the PT at St. Joe's. Mom wasn't a big fan of either because 1) James is already standing 2) We have done just fine accommodating our Baby Jogger to hold his equipment 3) We will soon be eliminating the ventilator and oxygen all together. So all in all it was a lot of back and forth of "research studies show" or "research studies do not show"...blah blah. Mom pointed out that the number one thing that is actually a problem right now is the fact that when James wants to scoot around on his butt he is still connected to a feeding pump and Farrell bag which Mom or Dad has to hold. Immediately after stating this the recommendation was to get James a wheelchair. She stated, "No one knows 100% if James will ever walk". 🙄 It's kind of like saying, ...

Sunday, February 12th, 2023 A somber morning as we packed up equipment into the car. It was a good thing that we had backup supplies at Juju's because Mom had forgotten major items in her rush to get out the door in 10 minutes on Thursday. We forgot things like trach ties, 2x2 split gauze, and HMEs! But we had enough stashed to be saved! Guess what else? We forgot the Tobramycin that had just arrived at the house on Tuesday. James was supposed to start this on Thursday night. His schedule is 28 days on and 28 days off. We ended up starting this on Sunday night instead. On our way home we stopped for dinner in Orlando looking for a good spot. We found a Pho restaurant that was on Triple D called Saigon Noodle & Grill, so we had to check it out. James was again groovin' to the music. Video below. This time is was current pop music remixed into lounge versions. Our waiter was playing peek-a-boo with James and he was cracking up. In the dark photos below on our drive home, Jame...