The Journey of James Weston

Monday, March 28th, 2022 James passed his swallow study at the hospital! This means he is able to swallow! There were 5 people in the room and James needed to swallow Barium which did not taste good. We had a few different versions of the barium ranging from thin and watery to thicker apple sauce. It was a mess because Mom needed to hold his arms down, while feeding him, and wiping his face. Now that he passed the goal is to have James get introduced to more food. We are going to try to have him at the kitchen table with us as much as possible for meals.  Later in the evening once at home we gave James his first tastes of avocado 🥑. Letting him make a mess because we were going to give him a bath anyways.  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

Sunday, March 27th, 2022 Not much to say other than that Mom and Dad's backs both went out on the same day. 😂 Dad had a physical therapist come to the house and stretch us out. But they got worse and we both ended up with back braces and ice packs! 🤣 At least we managed to get a photo of James today! Tomorrow is James Swallow Study! 🙏🏻 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, March 26th, 2022 We had an easy Saturday! James got to try on his adorable Burt's bees pajamas. Mom and Dad moved James into Dad's home office so he could watch us finish up hanging and organizing some things. The office makeover looks amazing. This was the first time that James was able to feel carpet on his feet as he stood in his new walker from Juju. In the late afternoon Mom ran errands (a break just to leave the house for a few hours once a week) and Dad watched Mulan with James for the first time. P.S. Do you follow James' journey? James would love to read an email from you. His email is JamesWestonAbramowitz@gmail.com. How heartwarming for him to receive these and fun for you to get a response from him in like 10 years...

Friday, March 25th, 2022 In the morning we had James's official helmet scan for sizing. It has been 2 months since our first helmet appointment. Honestly it is been quite a ridiculous process, considering that this is a time-sensitive issue. But within those two months James has made some improvement on his own by just sitting up more. When we got home from the appointment we went to transfer him to the replacement ventilator come to find out is making the same exact noise as the one that we just sent off for repair. Video below. It is a high pitch noise which kind of sounds like a laptop with a broken fan that is overheating. Supposedly it is the turbine in the ventilator. Mom called the DME company to ask for them to send another one. She said she would try and come out on Tuesday.  P.S. Do you follow James' journey? James would love to read an email from you. His email is JamesWestonAbramowitz@gmail.com. How heartwarming for him to receive these and fun for you to get a resp...

Thursday, March 24th, 2022 Today the bolus feed gave Mom some trouble. James wasn't really tolerating the rate that fast. It's a fine balance between hanging the Farrell Bag to high and gravity feeding him or hanging it too low and draining his stomach contents. If it's hung at just the right level then he will get fed and still be able to push back air if he needed to into the Farrell Bag. We are still figuring that out. For now, lots of outfit changes, soaked crib sheets, and laundry for Mom. 🧺 P.S. Do you follow James' journey? James would love to read an email from you. His email is JamesWestonAbramowitz@gmail.com. How heartwarming for him to receive these and fun for you to get a response from him in like 10 years...

Wednesday, March 23rd, 2022 Today Mom put together an Ikea shelf to extend James' room. Since we relocated the large bookshelf to Dad's home office we could open up this space for James. Imagine taking your living room and removing half of the items so you could turn it into an ICU nursery. This is where Mom and James spend their day. It's a small space so it has to be organized and accessible.  We also started James' bolus feed in the morning. Mom made sure to vent his G-tube before given him his prevacid through his G and then his 2 hour bolus which we are doing at 95ml/hr for 2 hours for a dose of 190. Then James got a 2 hour break. So far so good! We were able to get this all done before PT in the afternoon. In the evening we had James practice with his Passy Muir valve getting ready for the big day on Monday for his swallow study. P.S. Do you follow James' journey? James would love to read an email from you. His email is JamesWestonAbramowitz@gmail.com. How hea...