The Journey of James Weston

Wednesday, April 6th, 2022 Today James' helmet was delivered to the helmet office and we went in to get fitted and pick it up. Every helmet is shaped for a perfectly round shaped head. The idea is that the helmet will allow the flat parts of the head to grow, and restrict the other parts. Heads grow about ½ inch each month while they still have a soft spot. As a 15 ½ monther (1 year adjusted) James is coming in late to the game. Most are getting helmets between 3-6 months, which is exactly when we first noticed James' plagiocephaly and torticollis. This just wasn't a priority at that time. James did great! We have instructions on how to care and wash for the helmet and James. We also have James on a "weaning onto" schedule, where he wears it for a few hours and then has a break. We will come back for a follow up appointment ina week to see how its fitting and if needs to be readjusted some more. P.S. You can email James your love and support as often as you’d like...

Tuesday, April 5th, 2022 James had his 15 month check-up where they did his 12 month developmental assessment. They said he improved from the last assessment. He was supposed to get vaccines as well but they decided to hold off since he was still.on the antibiotics. We rescheduled the vaccines for a week from now. We asked the pediatrician if she knew of any other places we could take a medically complex baby and she let us know of the Glazer Children's Museum. It just so happened to be free on the first Tuesday of the month, so we stopped by! James wasnt really able to enjoy it since he's still tethered to the stroller but definitely after he gets off the ventilator he'll love it! It's like an educational Chuck E Cheese. Dad was ready to play! James cracking up at this dog! James sets himself up like this! 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...

Monday, April 4th, 2022 Megan ended up getting another flight back to Dallas in the morning. In the afternoon Uncle Doug stopped by while he was in town. James' battle wound for Friday Night in the PICU. 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, April 3rd, 2022 Today Dad watched James while Mom and Megan went out for Brunch! In the afternoon, Megan got to meet James and see our nightly trach care routine. She was supposed to fly out in the early morning tomorrow but in the evening the airline just cancelled her flight. Did you know this was a common thing now? You're just out of luck. ✈️ Crazy. After dinner, Uncle Doc brought over a flame safe birthday cake to celebrate while James slept! 🎂 Dad is an expert eye patcher! 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

Saturday, April 2nd, 2022 Since Mom slept at home, Dad had the shift at the hospital. This was the best sleep Mom has had in a long time. Texts from Dad to Mom (our charting 😂): 9:00am  "Overall a good night.  We both slept from 9:30p-1a. Then the LOW PEEP alarm was nonstop. I redid the circuit setup - put him through the railing, lowered that hanging water bottle, lowered the table, and got a massive amount of water out the line. (I had RT in here with me while I did it).  Then vented him for a bit from 7:45a-8:45a and diaper change since he wasn’t settling. Lowered the Farrell bag. Got done around 3am and just woke up now.  He’s still in and out of sleep.   Around 8:20a, the nurse, gave him the 7mL of Bactrin way too fast and he spit up more then I’ve seen.  They’re doing rounds now." Mom found out the day nurse is someone we had in the NICU. Nice but very incompetent. Definitely not our pick. We had several incidences in the past where she blew Mom's m...