The Journey of James Weston

Wednesday, September 14, 2022 James had Early Intervention therapy and James again cried the whole time. He kept turning around to look at Mom and just wanted to be held. as soon as Mom put James back in his bed he grabbed his pacifier put it in his mouth and grabbed a bean bag and threw it over his eyes. He was tired! 😩 😴 While he was taking a short nap Mom starting packing up to leave for our pulmonology appointment.  When we arrived at the office we waited for a while in the lobby and James was doing fine. However as soon as we got back to the room James became emotional and started crying. It's almost like he knew he would have his 2 synagis shots and end tidal C02 reading. We spoke to the doctor and let him know we wanted to be on the same page with starting trials off the vent and that James was doing great! So put off the shots until the end of the appointment. Then we received excellent news at our appointment! The pulmonologist wanted to decrease James' PEEP to 5! He...

Tuesday, September 13th, 2022 Today we had physical therapy and James got to try out his new "nugget". We got the knock off version from Sam's Club, which is identical and half the price. Essentially it's an infinitely configurable play couch made up of four foam pieces (base, cushion, and two triangle pillows), covered in a microsuede fabric cover. Later on James will be able to use this for making forts!  James was not a fan because he is going through the stage where he is just scared of everything. It's going to take some time for him to get used to it. So unfortunately physical therapy was James just crying. Not hysterically but enough where it interrupted therapy. This couch will be beneficial to get James into crawling. 1:30am - Light from the lamp These 2 photos were taken within 30 seconds of each other. New "Nugget" for climbing 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 ...

Monday, September 12th, 2022 James made it through the weekend and was feeling better. Mom decided to hold off on calling the pediatrician. Maybe James' immune system could fight whatever he had going on. James played with his new car toy and inspected the wheels thoroughly. Recently we purchased a new circuit cover on Etsy. Our first one which was blue was from Amazon worked great at preventing rainout but was really meant for an Adult CPAP machine. It weighed 4.9oz and it pulled the trach and James' stoma. Mom had reached out the other trach Mom's on FB for recommendations. This new one weighs only 1.8oz and doesn't add any unnecessary weight while still preventing circuit rainout.  Etsy Store: RedRabbitGoods The GIF shows how James was able to move from the W position (almost kneeling) to sitting. Super important! Mom trying to help James do tummy time. James refuses to use his arms to hold himself up.  P.S. You can email James your love and support as often as you’d...

Sunday, September 11th, 2022 We took James to his first trip to Target and buybuy BABY. Our goal was to buy James a hat (a cap), since we didn't get him the first one he tried on. 🧢 First was buybuy BABY and we walked out spending less than $100. Yay! 👏 After finding a blue baseball cap we ended up walking out with a new huge bathtub, wipeable bibs, baby lotion for eczema! At Target, we got him his first Lovevery Toy which was a little car 🚗 and a stick figure driver! This is the only Target in the area that carries the Lovevery brand. Hoping to get James more! The GIF is when we tell James to "hold on tight" when getting him in and out of the car.  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

It has been one year since we have been discharged from the hospital on September 10th! 😁 What's so interesting is that two of my closest trach mom friends had babies with extremely long NICU stays who were also discharged around the same time! ❤️ 🎶 Do you remember...When we were discharged in September? We would soon get a DME vendor.. While chasin' the clouds away. 🎶 😆 Here is an official update on James! He is 20 months (16½ months adjusted) and 20 lb. Technically once he reaches two we're not allowed to say adjusted anymore. 🤣 I believe the last update on Facebook was in February. Well since then a lot has happened! First off, we let go of all of our nursing in March. To make a long story short, it came down to incompetence, laziness, and James' safety. It was pointless in having them because I was doing everything, and they were simply charting what I was doing. Training and retraining nurses who have over 10 and 20 years of experience was ridiculous. We are ...