The Journey of James Weston

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...

Sunday, December 5th, 2021 James started off the morning relaxing in Mom's bed and eventually took his morning nap. Then he watched some Cocomelon while he sat in his boppy. He loves to put everything in his mouth. Dad ran some errands while Mom was the nurse. Overall, James had a good day. Tomorrow we have a Pulmonology appointment.

Saturday, December 4th, 2021 Today we had a friend of a friend come and take some photos. Really hoping we get some good ones! Unfortunately James was not his smiley self because our nurse had worked with him so much in the early morning that he was exhausted. He spent time sitting up in his boppy and jamming on his piano. It was really bad timing. James had a really good nap afterwards! That's when Mom & Dad went out to have a meal at a diner. It was the first time they were both out of the house together. We normally would never have a nurse on the weekend but she wanted some extra hours and we'll they are open! So she worked until 3pm. We also put up a 2nd window bird feeder and we now have a scurry and murder on the deck. That would be squirrels and crows. Crazy pictures below! This photo is just a sneak peek!