The Journey of James Weston

Wednesday, April 12th, 2023 Today Mom took James to run some errands. While out our Medicaid case manager called for the monthly checkup. Mom let her know that currently we are in transition to seeing a new GI doctor. She also let the case manager know that her biggest concern is not getting his formula on time. It gets later and later from our supplier every month and at this point we are missing a whole month's worth of formula. The Medicaid case manager informed mom that she saw the appeal for the insurance denial is still being processed. We did receive a letter in the mail last week saying that our appeal was denied, but she said it was still being processed so we are going to go with that. James took a much-needed nap in the car while Mom took this call. 😴 We were scheduled to have a 4pm meeting with our physical therapist and a man who was coming to measure James for the gait trainer. Due to our physical therapist feeling ill we figured it was better for her to do a telehea...

Tuesday, April 11th, 2023 We did not have physical therapy today since that was rescheduled for tomorrow when we also get measured for James' gait trainer. James scooted around the house with his backpack during his time getting fed into his G. He played with Mr. Potato Head, which is becoming a daily ritual!  We ended up not getting the house because an offer was put in today and it went under contract. The realtor that we were dealing with was horrible at communication and lost the whole thing. It was such a waste of time going back and forth with pool companies and doing the research to find out that are realtor never relayed the message to the seller that we were doing all this. She also had 10 hours to let us know an offer was submitted. In the end, we think this worked out for the better since we have a lot going on these next few months and moving would just have been insane. Also we are hoping for a housing bubble burst! 🤞🏻   P.S. You can email James your love and su...

Monday, April 10th, 2023 Today we did not have early intervention therapy because our therapist was sick. Mom worked with James on standing, organizing the medical supplies, and sorting the balls. 😂 It is hard for him to stand with the backpack because there is quite a bit of weight wanting to pull him backwards. The best part of today was when James was playing with a box of random toys and he pulls out his sunglasses and just starts dancing to the music. Mom managed to catch the last of it on video. [Video below] Today Dad worked hard on getting information about the pool at the new house. He called the city and talked to several different pool companies to see if it was possible to build pool. Meanwhile our realtor continued to send us emails and emails of homes that were not remotely close to what we're looking for. 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! JamesWestonAbramowi...

Sunday, April 9th, 2023 The hotel was very accommodating with our ice pack situation. They actually kept our entire lunch box and all of our ice packs in their employee freezer. 🧊 It was definitely a small town feel! A guy that worked at the hotel counter suggested that we not moved to the area because it's too expensive. It's funny because most people will tell you not to move where they live. 🤷🏻‍♀️ James' treatments took another hour in the morning. When he is using a trach mask he has to lay down and be very still. This works great in the evenings when he falls asleep, but in the morning he is ready to go. James would like to sit up and he would like the TV on since there is a huge one right in front of his face. He wanted to know where the remote control was so he could get started on his morning cartoons. 📺 Last night at the hotel Mom found a few houses online that seemed to check our boxes. We ended up scheduling 3 showings with a Realtor that was assigned to us t...

Saturday, April 8th, 2023 Kind of a random decision but Dad had received a listing for a house that looked like our dream home, so we decided to drive out and go check it out even though we knew that an offer was already made and it was under contract. We figured we would drive out to check out the neighborhood because maybe there were others like it. Right now we are renting a town home in Tampa, very close to the Bucs stadium. Our goal is to eventually buy a home and try and get the biggest bang for our buck. We really don't care about the location so we are open to living in a more rural area to get more house and land. It turns out that this neighborhood was literally in the middle of nowhere. It was a little too outside of our comfort zone. It seemed like the closest store was 30 minutes away and it was a Dollar General. That's it, just a bunch of dirt roads.  So we were looking on Zillow north of Orlando and just driving around aimlessly. Looked at a house that just didn...