The Journey of James Weston

Sunday, February 13th, 2022 We went back to the Zoo but this time Mom held James in a baby carrier. We managed to balance the weight of the ventilator with the weight of the oxygen tank, suction machine, and the to-go/diaper/emergency bag. Mom then held the circuit, Feed tubing, and Farrell bag tubing in her left hand so it wouldn't hang on the ground. We did disconnect his pulse ox cord to eliminate one cord! Dad pushed the stroller with the equipment so Mom stayed tethered. At first James was not a fan because he typically does not like to be held so close, being face to face. But then he fell asleep. James now weighs 20lbs but the carrier was very comfortable and Mom wore him the entire time as we walked around the Zoo.  We had a cool experience with the o rangutans  🐒🐵. We just happen to be in the front when they began feeding them heads of lettuce. Check out the video! James also got to experience two rhinoceros 🦏 🦏 playing with each other head butting and running aro...

Saturday, February 12th, 2022 Dad was able to handle morning duty while Mom ran some errands. He is always making sure James is getting his physical therapy in, 2 hours of eye patching, and a Disney movie. Tomorrow we are going to make another trip to the zoo! 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, February 11th, 2022 Last day of nursing for the week. We have a free weekend! Typical Friday of 8am physical therapy and then Mom on the phone waiting to talk to someone who can give her answers either with insurance, a doctor's office, medicaid managed care, children's medical services, or department of children and families. Hours upon hours of waiting to talk to someone only to reach someone who doesn't have a clue and was just recently hired. James is still in his oral phase where he puts everything in his mouth. He is learning to reach and point for things he wants. We are working with him on giving things back. Dad stepped out in the evening to meet up with his sales team. Mom held down the fort with cuddles and a Disney movie. Then we tackled a late night trach care routine and put James to bed. But not before Dad tickled James so much he be was cracking up! We can't wait to hear his belly xlaugh soon! P.S. Do you follow James' journey? James would lo...

Thursday, February 10th, 2022 We called our Opthalmologist to give her a monthly update. We've been doing 2 hours of eye patching a day. Mom told the office that he is following things back and forth will no wandering. The only new issue is that sometimes James closes his right eye when he doesn't want to use it. At first we thought something was in his eye but then we noticed if we put our hand on his left eye (good eye) he would open his right eye with no problem. 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, February 9th, 2022 Today was a busy day. In the morning our Medicaid Case Manager stopped by. This is usually a monthly call with Mom, but this was the first time she could come in-person. We went over all of the upcoming appointments, changes to medications, and any issues with the home health staffing. Not really possible to do with the nurse in the room. James was charming as usual. Then we received a visit from Uncle Doctor David. He came bearing Christmas gifts, bringing us giant tubs of baby formula which we can always use! James lit up to see a new face. He is very social! Shortly after we had physical therapy appointment and James had a workout on the floor. Embarrassing enough the PT ended up just spending a lot of time helping James release gas. He was in a lot of pain.  In the evening Dad played guitar after trach care and then we enjoyed our new Disney+ subscription. Can you guess which movie we watched? Hint: "The ocean is calling". P.S. Do you follow ...