The Journey of James Weston

Thursday, February 16th, 2023 🗣️ Today we had Speech Therapy on Zoom. Our Physical Therapist used her time slot for the consultation since Speech needs to accompany another therapist. Didn't get much out of it. Doing any therapy via Zoom is super hard. Hoping to get started again with Speech at the Hospital. Mom also bought an online course. 👩🏻‍💻 Tonight was Family Dinner Night so we decided to go to get sushi 🍣. Although we didn't get to see James' friend, we ended up having a new waitress who remembered James and couldn't believe how big he was getting. The best thing you can do as a server to compliment their children, hello! James loves miso soup! 🥣 🛠️🧰 Afterwards we went to Lowe's to see if we could find a cap that would fit on James' trach. This was James' first time in a hardware store and it was like he was at Disney! Mom brought an extra trach and we headed to the plumbing section. 🪠 The part we needed looks like the item pictured below. Un...

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