The Journey of James Weston

Friday, October 29th, 2021 Video below of James almost sitting up on his own in his bouncer. He was reaching for the toys and spent a good 2 hours in there with Mom playing. He can also just now touch the floor flat footed.  A photo below shows that James got a pulse ox burn on his foot. 🤕 Mom found a solution in her Trach group by using a soft tape on the sensor. We are now rotating the pulse ox every 4 hours instead of 6 hours. During the day we try to take it off as long as someone is holding him, playing with him, or sitting near him. Every time he kicks or moves it does not read correctly and is fairly inaccurate. He is pretty active during the day. He kicks a ton! At night we leave it on since he is not moving as much. James loves his selfies! Mom tells him, "Say Hi!" and James will smile! 🤳 We wrapped up the evening with family movie night using the projector on the wall. Dad held James while we watched Pocahontas. Did you know that you don't need a Disney Plus s...

Thursday, October 28th, 2021 James is prepping for Halloween by trying out his Batman PJs. He is going to be Batman for Halloween with a cape and all! He hasn't wore pants since his very first onesie and bath in the NICU on Day 63 when he weighed 4lbs. See comparison photo below. We were really bad with not actually putting comparable items in the photos when he was tiny. It's a preemie onesie compared to a 12 month. Tomorrow Mom is going to breakdown BPD to make it easier to understand what James has going on.  P.S. If you read the blog and are supporting James through his journey we would love you to participate in our video montage of everyone singing his lullaby. Please see the James Weston lullaby post for more details. ❤️ P.P.S. Thank you so much for the lullaby submissions so far! It's so exciting to have all of you be a part of something so special! 😭

Wednesday, October 27th, 2021 More custom dyed and designed shirts from Aunt Robin. Every day James gets more and more of a personality.  This morning James had an in-person Early Steps physical therapy evaluation. He did well. She tested him to see how we was tracking toys going across his sight line, as well as tummy time, rolling, leaning forward and putting pressure on his hands. She was also there to determine whether or not James could use more than one day of therapy. In the hospital James had therapy every day...OT, PT, Speech, Music.  Right now, we wait until she submits her paperwork to our pediatrician's office. Then Mom can follow up next week on that. If they haven't received anything she will need to contact this PT back so she can follow up with her office (which can be slow). The physical therapists with early steps are all independent contractors and they would like to start getting paid too, so they have motivation to help get things rolling. It will probably...

Tuesday, October 26th, 2021 Mom has PTSD from the other night. Twice in an 8 hour period James was disconnected from his ventilator. Once was due to the nurse not correctly connecting his circuit from moving it under the railing to over the railing. It was loose and the pressure from the ventilator popped it off. The nurse was in the bathroom, Dad was in his office, Mom was just about to run upstairs for a second because James was calm watching his Blue's clues. Good thing she decided not to run upstairs, because one side of the circuit (blue inhalation tubing) disconnected and fell on the floor. The ventilator immediately alarmed DISC/SERVE which means the ventilator is disconnected somewhere. We only have a few seconds to find out where and reconnect. Besides the sound of the beeping alarm, you hear loud gushes of air and something like a train whistle. It's the most terrifying sound because you know what it means. Mom reconnected him and all was well. What is scary is that b...