The Journey of James Weston

Monday, January 2nd, 2023 We had PT at the hospital scheduled for 10am. Unfortunately the therapist never wrote the time down and we waited for over 40 minutes before anyone acknowledged that we were waiting. These sessions are only 30 minutes as it is. It takes almost 30 minutes just to get out the door with everything, so we don't know how many more we will do. Some Moms just drop off their child like it's a daycare. 😳 The whole point of any therapy is to show the caregiver what to do so they can help practice daily at home. However with the therapy we're getting at the hospital there are no exercises or instructions of what to do at home.  James had a guitar lesson once we got back home after running a few errands. We will be shocked if James doesn't play the guitar when he's older. 🎸 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, January 1st, 2023 We got to the hospital around 1:20am. At this point, we only continued water in his G-tube at a rate of 40ml/hr to help with dehydration. The Children's ER was completely empty. All of the medical staff was super friendly being that they were working on the weekend and on New Year's. We got into a room immediately. James was weighed and Mom went over all of the medical history. He had to get an IV for admission. It was great that she got it on the first try but we weren't sure it was going to work because it took a very long time. James cried and had to be held down by Mom, Dad, and another nurse. She put the IV in his hand so she needed to tie restraint boards to his arms to prevent him from pulling it out. We were told we would get admitted into the PICU soon but it ended up taking until 5am. Mom and James tried to sleep on the ER bed while it was very cold. While Dad was busy getting work done because he had eaten an energy bar that just kicked ...

Saturday, December 31st, 2022 Today was James' Birthday and what a busy day it was. It started off with a professional photoshoot that came over to the house to take pictures of the entire family. 📸  We also celebrated James' New Year's Eve Birthday. 🥳🎂🎉 He opened presents and loved all of his new outfits and toys! James was not a fan of singing Happy Birthday and cried really tears! So Dad played the guitar and sang his lullaby instead. James got a Mickey Mouse birthday cake from Publix which looked pretty cool; however, it was filled with so many sprinkles inside that there was barely any cake. Also the red icing stained his hands really bad. We don't recommend it. In the evening around on 10:15pm, Mom put James to sleep in the Pack N Play, way passed his bed time, when his G-tubes got caught on the edge and his entire GJet Button came out! As Mom placed him down she saw the open stoma in his stomach with nothing in it and screamed for Dad. They were all the way u...