The Journey of James Weston

Tuesday, February 15th, 2022 Mom spent the day (and yesterday too) on the phone with Medicaid and DCF trying to file for an appeal for something insurance won't approve.  The automated phone call starts out.. "Thank you for calling...Press 1 if you're a Member, Press 2...yada yada". Finally reaching someone typically after a 2 hour wait they need to confirm who you are. They want your name, the patient's name, DOB, SSN, street address, hospital street address, phone number, email address. Once that it's confirmed you say who you say you are, they want to know how to help you. You explain you just need to be transferred to the Appeals Department, then they transfer you..."Thank you for calling. We are closed. Our hours are between 8am and 6pm. (It's not even 5:15pm yet)...To leave a message, press 1". You press 1  Click!  Disconnected. 😑 Time to try again..."Thank you for calling...Press 1 if you're a Member, Press 2..." After anoth...

Monday, February 14th, 2022 Crazy to think that this is James' 2nd Valentine's day! Last year on this day was the first time Mom was able to hold James at 48 days old on a pillow! To this day, we have not come across anyone that has had to wait that long! It's the one thing we regret not pushing the Doctors on. At the time he was still so fragile and things were up and down daily. As new parents, we had just assumed the Doctors would have wanted us to do "skin to skin" as soon as possible. We didn't push until friends of ours who also had a micro preemie a few years prior told us to speak up. Because we didn't get that close bonding time being in the hospital so long, James doesn't always like to be held.  First photo and video show just how small James was this time last year. This year Mom and Dad just spent their Valentine's Day with James. As Dad would say, it's just a Hallmark holiday! In the morning James' omniflex broke on his circui...

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...