The Journey of James Weston

Friday, March 4th, 2022 We started off the morning with physical therapy at 8am, when that was over Mom started getting James down for his morning nap. Mom looked at the online portal and saw the results had come in for the bloodwork. James numbers all looked great, all within range, even on the higher end. Mom let the nurse know the numbers looked great and that we would be hearing from the Doctor soon. Mom reminded the nurse not to give him the Sodium Chloride, but then out of nowhere the nurse blew a gasket! 😤 She just went off about how she was going to give him the med because there was not an order to "discontinue". There may be a language barrier here because Mom already explained that "holding" is "refraining from" for a period of time and that we would hear from the Doctor on whether or not we would start again. She did not understand the order and instead got really rude with Mom repeatedly saying her name in a condescending tone. Mom let her kn...

Thursday, March 3rd, 2022 We had a Speech Therapy appointment in the morning and then we did labs afterwards.  🗣️ At the Speech Therapy appointment we got an order that it was okay to increase his trials to 2x a day for 3 minutes. We did a trial in the office and James cried again. 😭 This was the first time our nurse was able to hear him. She didn't really have anything to say about it. 🙄 We left the appointment with the understanding that we would be scheduling a swallow study. Yay! 🎉 🥼 Afterwards, we went upstairs in the same building to the lobby waiting. There is a kiosk for walk-in lab appointments. We signed James in and waited a long time. Finally someone came out to call James and Mom double checked to if the IV team had been requested (this had automatically happened the 3 times prior). The lady said that they were dealing with new staff and no one knew to request them and if we really wanted them it would be another hour. OR she said we could just try and get a finge...

Wednesday, March 2nd, 2022 Our day started out with our nurse giving James Sodium Chloride even though the order was to hold for one week and then get labs to evaluate. We are going for labs tomorrow. Mom tried explaining this to this nurse but it was very confusing to her. 🤦🏻‍♀️ The nurse just kept repeating herself saying, "we don't have an order to discontinue". No, not yet but the word "hold" means "refrain from". Well the nurse had already put the medicine into his feeding bag, so we had to dump the entire bag. We didn't know how much actually got to him, which could mess up his labs tomorrow. Of course none of this was charted in the nursing book. No apology, no ownership, just blaming the other nurse for "miscommunication". 😂 We had a pulmonology appointment in the afternoon. Originally they wanted to cancel this appointment because James was no longer getting synagis shots. Our insurance was only going to cover 5 injections, si...

Tuesday, March 1st, 2022 Before we left we had an amazing brunch🍴made by Aunt Robin. Juju had a Bucs photoshoot 📸 with James. And Tommy wanted to let everyone know he's still #1 🥇! Juju sent us home with a lot of homemade chili and snacks! 🍲  Still playing phone tag with our Baycare DME. 🤳 We never got our GI supplies for February! They are so unorganized and mismanaged. Pretty sure all DMEs are awful. Haven't heard of one someone liked. Can you imagine working for a company that is supposed to supply things to medically fragile children and your job is to find ways to cut costs and deny families? Now imagine you've worked there for 10 years... Yup, you've sold your soul. 👿 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...

Monday, February 28th, 2022 Lots of visitors! Vicky, Vicki, Debbie, and Natalie stopped by to meet James! He loves seeing new faces and is very social. He received so many cute outfits, stuffed animals, toys, and books that will be great for his development. James appreciates it very much! ❤️ James refused to take a nap all day. He had bad FOMO (fear of missing out)! James eventually napped at 4:15pm and it was only for an hour. Then we put him to bed at 9pm. Dad's flight got in around midnight and like typical Dad fashion he wanted to see if James was awake. Well James peeked opened his eyes when hearing his voice. He was now awake! With Dad off to bed upstairs Mom had the amazing opportunity to try and get James back to sleep until 2am. 🤣 Tomorrow we head back to Tampa! 🚗 *These posted have been delayed a week to not advertise an empty home. 😆 We'll catch up. P.S. Do you follow James' journey? James would love to read an email from you. His email is JamesWestonAbramowi...

Sunday, February 27th, 2022 Today is the 9 year anniversary of Pop-pop's passing (Mom's Dad).🌙 Aunt Robin held James for a 2 hour long nap. Afterwards Tommy tried to make James jealous by getting close to Aunt Robin. Sneaky dog! In the afternoon, James met Beverly who was nice enough to stop by to say Hello 👋 and bring James some fun things.  Juju and James wore their matching Rolling Stone tees and had a photoshoot. James loved the tickles! In one of the videos below, Champ made a new friend. James was obsessed with the dogs. In the other video, James had another speaking valve (PMV) trial. Juju bought James a new bouncer at Buy Buy Baby, so that he could get practice standing. It is amazing! Tommy avoided eye contact as usual. 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...