The Journey of James Weston

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...

Monday, October 25th, 2021 Today our nurse called out, so Mom had James take a morning nap with her on her cot. Then James gave his stuffed animals a talking to. In the evening, James wanted to sleep with the bean bag on his face. Don't worry he has a trach. 😂 Then he got a bath with his trach care. Mom shared a post on Facebook describing what it's like having to fight the insurance companies. Mom could have written this word for word. In our case we are dealing with Cigna. Same exact situation though. Post below. 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! 😭

Sunday, October 24th, 2021 James has been giving us all sorts of look now. He is reaching for the cell phone already. James will grab things quickly so when we are doing meds or a diaper change he will make things disappear in an instant. We are definitely at a stage where he needs more stimulation with toys that would help him with development. We are open to suggestions that have worked for all of you. Currently he is just sticking everything in his mouth versus playing with it, even including fabric. He is almost 10 months (6.5 months adjusted). James is definitely closer to his adjusted age, but is changing daily. 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! 😭