The Journey of James Weston

Friday, December 10th, 2021 James had PT at 8am, but when she arrived at 8:15am James was not about it. We worked with him in his bed. Teaching him how to sit up and lie down on his own by rolling on his side and leaning on his arms.  Around 12:30am, Mom jumped up to the sound of the vent being disconnected. The loud train whistle started before the ventilator alarm even started beeping. She immediately grabbed his trach and started feeling each section until she felt something disconnected. There it was, she could feel the air swishing out at the end of the blue Tee adapter after the Y (you can see in the pictures). But the tubing was not there to reconnect. It had happened again. This time Mom was again in the dark and could not find the new mobile light. It's great because it holds a charge but it's also always in a different place because you can put it anywhere. Unfortunately Mom could not find it had to make a quick decision to not continue looking for it and to walk arou...

Thursday, December 9th, 2021 No nurse Thursday, is kinda a break for Mom. Kinda. Mom held James a lot, didn't have to worry about giving report, or keeping someone else entertained besides James. Although there's not much else you can do with no nurse because you're busy with feeds, meds, venting, therapy, eye patching. Once in awhile you're able to grab something to eat and maybe use the restroom (with the door open because you need to hear alarms). Oh yes. 🚨 🔊 Dad was able to step in a help during eye patching with a a few songs while he had a 20 minute break. If there is anyone good with guitar that knows the trick to playing nursery rhyme songs with the same chords please let us know. The woman at the hospital who did music therapy was really good at it. Mom put on a quick YouTube tutorial of silent Night basic guitar. Dad is a quick learner although trying to play new chords while reading lyrics is a little tricky! James is a great audience! 🎸 🎵 🎶 Mom confirme...

Wednesday, December 8th, 2021 It is hard to really appreciate how tiny micro-preemies are. If you are one of the 11+ Million families who have adopted an elf on the shelf, take a closer look at them tonight. Your elf is bigger than many micro-preemies. Your elf is about 11.42" long. With the hat the elf measures about 14" long. James was just 11.22" long. A couple of photos below show perspective. ❤ P.S. Dad is running a free 5-day virtual workshop next week for those that want to make 2022 their best year ever!  Mon, Dec 13th - Fri, Dec 17th 6:30pm-7:30pm EST You can check it out here: https://mikeabramowitz.com/yourbesty earever/

Tuesday, December 7th, 2021 As we picked out his nightly outfit, we hadn't noticed that the blanket laying on his crib was also the same pattern from the GAP. 😂 James did great with his new Tuesday nurse. She gets on the floor and plays with him. Even held him in her arms while sitting on the floor as he took a mid-day nap. We are continuing to eye patch for 1 hour a day. James is getting used to it and is tolerating it without a whole lot of bribery. What has been working is Dad playing guitar and singing his songs, frozen teething toys, Cocomelon, watching videos of himself, and sometimes Mom just holding his hands. P.S. Dad is running a free 5-day virtual workshop next week for those that want to make 2022 their best year ever!  Mon, Dec 13th - Fri, Dec 17th 6:30pm-7:30pm EST You can check it out here: https://mikeabramowitz.com/yourbestyearever/

Monday, December 6th, 2021 Today we had our monthly pulmonology appointment for James' 2 synagis shots. Mom, Dad, and our Nurse went along for the trip out. While we were there we asked about making adjustments to his vent settings since he seems to be tolerating everything so well. The doctor decided to decrease his pressure support from 22 to 20, which is great! Mom gave the Doctor the list of things the Speech Therapy office required faxed to them in order to schedule a PO Evaluation appointment. As they were taking care of that, our Pulmonologist asked us if we received the custom length trach yet. 😂 We let him know that we had been getting the run around from our DME and insurance regarding who was responsible for the next step which is a Peer to Peer evaluation. Mom thinks they are both liars. And no one in the Facebook is of any help on this topic. 😫 He let us know that by now James probably needs another scope done by ENT. He is growing and so is the length of his trachea...