The Journey of James Weston

Tuesday, March 29th, 2022 Early in the morning, the RT from our DME showed up with another ventilator but unfortunately this one sounded worse. 🤯 She even made a comment about how another family she was seeing did not have a back-up ventilator so we were lucky that a 2nd one got approved. Like we should be grateful we have one working ventilator. Really? It took 6 months to get the back-up ventilator approved by insurance. The blood, sweat and tears of Mom, the Pulmonologist and several others. But we shouldn't complain about that back-up ventilator not even working...? The whole point of having a backup ventilator is that when these ventilators die (which clearly they do quite often since we are in the situation) James has a second chance. If his ventilator were just to stop working we would need to bag him with an ambu bag and call 911. We would be bagging all the way to the hospital with an increased chance for brain damage or death. So yes we went to the trouble of having insu...

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...