The Journey of James Weston

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!

Friday, December 3rd, 2021 James' is sportin' a cute new onesie from Great Cousin Cati! James has a few hundred cousins on Mom's side. He is part of the Cousin Squad! 🧒👧👦 He can't wait to meet everyone someday!  He is getting very consistent with his naps; happening at 9:30am, 12:30pm, and 5:30pm. This is great so we can plan a better schedule! This morning Physical Therapy showed up at 10:15am which was scheduled. We recently just got approved for PT 2x a week. Mom forgot PT was coming today so James was not ready and was in a deep nap. She decided to just reschedule.  Tomorrow is our first professional photography shoot! Mom is cleaning the house and trying to find the perfect outfit for James. 

Thursday, December 2nd, 2021 Today our M, W, F nurse picked up an extra shift today for a few hours. James had time to reflect on his PT exercises from yesterday. This is a mirror for the car seat so the driver can see the baby. In our case we always have someone in the backseat, so James gets to use this as a toy.  Some of our photos below show how we swaddle James for trach care. It has been a Game Changer! 😉 A trach tie change is to easy now! Also Mom and Dad have been doing his trach care since April. Eventually we will put out some videos to help others with questions. This is how we swaddle James for trach care. He loves it. Working in his core strength!