The Journey of James Weston

Friday, August 5th, 2022 Mom gave James a bucket full of toys so he could explore. He took each one out one by one and inspected them. Which toy was his favorite? A wooden spoon! 🥄 We have been having to vent James even more since the new button probably because air is not able to escape as easily, trapping it in the stomach. Instead of gastric contents only foam is coming out, which just means that excess gas is in the stomach. Mom vented almost 50 mLs. A couple of theories on why James has this excess air 1) ventilator pressures 2) being on continuous J feeds (essentially having a GJ). When the feeds are continuously fed to his small intestine it pushes the gastric contents that was coming through the pyloric valve back up to the stomach causing excess gastric juice and air. The goal is to get him back to a G-tube, which will take several months of slowly increasing G feeds and stretching his stomach. In the evening, Dad watched movies 🎥 with James while Dad sent Mom to a hotel to ...

Thursday, August 4th, 2022 This morning James went through three outfit changes before his appointment around noon. He'll typically make it through the whole night, but then once the morning comes James can go through three diapers in an hour. Little boys sometimes pee out their diapers and today included a lot of laundry. 🧺 In the afternoon we had our appointment with James' Endocrinologist. He measured his arm and leg length which he said was a 1.5. Now we couldn't really tell you exactly what this means because to be honest his explanation was confusing. In summary, he said that babies are normally born around 1.7 and the goal is to get to 1. Right now James should be a 1.3 but that is also comparing James as a full-term baby and not a micro preemie born 3½ months early so once you factor that in everything looks good. But here's a thing about preemies,once they turn 2 years old you're not allowed to say "adjusted age" anymore. Yes this means that they...

Wednesday, August 3rd, 2022 James had physical therapy today focusing on bearing weight on his knees and feet. In the evening, he had tastes of Sweet Potato 🍠 baby food. This was the most food he has ever eaten! He loved it! We also had a successful trach change and will be changing the circuit next week. Teething has gotten to the point where we purchase baby oral gel. James just gets very fussy and normally he is a happy baby (like always!). Tomorrow we have an endocrine appointment.  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