The Journey of James Weston

Tuesday, April 25th, 2023 We ended up getting a call back from ENT and they gave us the good news that James did not need to come in tomorrow for a capped sleep study. So we would just be waiting for the hospital to call us tomorrow to confirm check-in time. James had PT in the morning and in the afternoon we worked on how to get down from standing. James was stuck and was scared to bend his leg. [Video below.] We napped upstairs and James' new thing is playing with the suction tubing while it's on. He put it against his leg and thought it was hilarious! During the nap of course the pulse ox machine would not work. We kept getting the alarm "Sensor Off Patient" and after trying all the things Mom decided it was the cord connected to the machine. This is our 3rd one that has broken. The Rad-G pulse ox wasn't designed well. We even heard this from another RT. Thank goodness we had a back-up from the pulse ox sales guy.  Mom received a call from her nurse saying that...

Monday, April 24th, 2023 So late last night Dad's business partner, Uncle Andrew, came into town and would be staying with us for a few days.  Monday is always a busy day for phone calls! The morning started off with Mom going in for more blood work. 🤞🏻 Before early intervention therapy Mom had an introduction call with someone that will be having Mom on her podcast next week to discuss being a medical mom and IVF.  📞 We got a call from James' ENT office. It was one of the nurse practitioners. She said she was calling to get James set up for a capped sleep study. After some discussion with Mom letting her know that there has been quite the confusion with this. The last time he was scheduled for his airway evaluation we were told that he would be coming in for a capped sleep study the night before, making it a two night ordeal. But no one from the hospital ever called us that Tuesday to come in Wednesday. Instead they only called us on Wednesday to come in on that Thursday. ...

Sunday, April 23rd, 2023 James has a new favorite song Dad plays on the guitar, Dave Matthew's Band - "Crash Into Me"! He goes crazy, dancing really fast! 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

Saturday, April 22nd, 2023 Today was actually family day for us because Dad had an appointment in Clearwater so we went with him. Afterwards we brought James to one of our favorite restaurants when we used to live in the area called Pho. James loved the Vietnamese flavors. Mom was feeding him some of the broth from the pho and Dad was feeding him some of the peanut sauce from the wraps. James decided that he left the peanut sauce more! He is always been very quick to make a decision. We walked around the shopping center in James got to experience some stores for the first time. 🛒🛍️ He is at the age where he is trying to pull at anything near him so you have to be careful in some of these stores. We tried to find ways to play games with him even at DSW. "James can you point to the brown shoes?". Anything to keep him distracted from screaming. Because that's all he wants to do now is practice using his voice! In the evening we had movie night at home. 🍿 🎥 P.S. You can e...

Friday, April 21st, 2023 After a morning of physical therapy 🤸🏻‍♂️with Mom, we all headed to the International Mall so Dad could run some errands. This was James' first experience seeing an escalator and he was really impressed! 😲 James is standing up in his stroller now and screaming all the time! He played peekaboo at Lululemon and ate lunch at The Cheesecake Factory. James was very open with trying all of our food but his favorite was different types of bread. 🍞 If you give him just a little piece of anything he will inspect it, taste it, and focus on it for a good while. 🥣 He did excellent at the restaurant.  Juju and Aunt Robin video chatted with James. After discussing the upcoming decannulation on Thursday Mom decided that we should go ahead and reschedule our vision therapy appointment on Tuesday. It's just not worth it to be in a doctor's office where there are just typically germs. When Mom called to reschedule unfortunately the next day open is over a month ...