The Journey of James Weston

Saturday, February 25th, 2023 James explored his new 360 drink cup. We're not quite sure how the water comes out yet. 💦🤷🏻‍♀️ Dad watched James as Mom stepped out for a few hours to run errands and then vacuumed and mopped the floors at home. Video below showing James on this day 2 years ago and James today. It was our first skin to skin on Day 56.  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, February 24th, 2023 Mom thought we had physical therapy at the hospital 🏥 at 9am, but it turned out that doesn't start until next Friday. However the therapist said that it would actually work out today because the other person had just called to switch to 9:30am. 😅 That was good because it was such a hassle just to get there! Moving forward we will have confirmed times for Monday and Friday mornings for PT at the hospital. James also has therapy Tuesday Wednesday Thursday. So there's therapy 5 days a week! It took James a while to calm down, since Mom again needed to stay in the lobby while the therapist took him back. You could hear him screaming throughout the entire place.  Afterwards, Mom took James to the dollar store mainly to get new pool noodles. We needed to redo the bed railing covers since they were ripping. James picked out blue ones! Well James was pretty tired from PT and wanted to take an early nap. It was pretty obvious since he had a meltdown at the ...

Thursday, February 23rd, 2023 Most of the photos explain themselves. James scooted all around today. He is pushing furniture out of the way and climbing over us if we're in the way! Today his new mini infinity bookbag arrived. It's actually made by Moog which is the brand of the feeding pump, so it's adaptable. It's also extra tiny because it's meant for little ones and only to hold their pump and feeding bag. We are going to start with with James wearing it while it's empty. The next step would be to just put the pump in by itself. That is going to be a little tricky considering James is on a continuous feed and we don't have a backup pump. 🎒 ☎️🤳🏻 In the afternoon Mom took a nap with James for maybe 20 minutes. Of course during this time this is when the pulmonologist left a voicemail asking her to call back. When Mom did call back the office let her know that he would be unavailable for the rest of the day because he was at the hospital. 🏥 Mom told the...

Wednesday, February 22nd, 2023 No therapy today with a therapist, but of course Mom works with him daily on his strength training. James played with dice for the first time. 🎲 He actually put them on his lips, blew, and then threw them. Who taught him this?! He continued to throw the dice and then scoot over to throw again. This continued for a while! (Video below) James did great standing up on his own and is really using his imagination when mixing all of the toys together. (Video below) He is also starting to say the first letter of the colors he knows!  Today we had a new Respiratory Therapist from our DME to check the ventilators. He is replacing our last guy who we really liked. We let the new guy know that James has only been on the ventilator at night and we never use the back-up one now. He congratulated us on the progress!  The pulmonologist's office called Mom back to let her know she still hadn't heard from the ENT office yet. A photo below shows Mom's DIY Feed...

Tuesday, February 21st, 2023 Today was a busy day with physical therapy and then an afternoon appointment across town. 🚗 👩🏻‍💻 Mom had an early morning virtual appointment with the new fertility doctor to discuss a new protocol for the next cycle. 🧍🏻‍♂️Then James had PT at home where he worked really hard on standing and shifting his weight. Our therapist accommodated us by coming early so that we could leave on time to make our afternoon appointment. We needed to drive about an hour east to see our new endocrinologist.  👩‍⚕️We were referred to this new endocrinologist at USF by our new orthopedic doctor. He said that she specialized in bone density and with James' history of prematurity along with his partial recessive gene of osteogenesis imperfecta, it was good to have someone who was familiar with it. Like all doctor's appointments it seems like you wait a very long time to actually speak to the doctor. You go over all of the medical history and current medications. Y...

Monday, February 20th, 2023 Mom called the pulmonologist's office to let them know how our ENT appointment went last week see if we needed to move up our pulmonology appointment. We aren't scheduled to see them till the end of March but we have this airway evaluation on March 9th. 🤷🏻‍♀️ The admin there who is super nice told us she believed that pulmonology should be included on the procedure on March 9th, so she was going to reach out to our ENT doctor for the office notes from last week and get details. We had physical therapy at the hospital and this was the first time that Mom would stay in the lobby and not go back with James. He cried and screamed as the therapist walked away with him. Took him a few minutes to calm down but he eventually did. The therapy is only 30 minutes anyways. The therapist said James ended up playing with another kid. He was a former trachie and G-tube kid who was a year older than him. James supposedly took his toy from him, so we need to work w...