The Journey of James Weston

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!

Wednesday, December 1st, 2021 James' Birthday month! James is eye patching because of strabismus, where his eye sometimes goes too far to the side. Only 1 hour a day and we switch eyes everyday. He is doing so good! 👀❤️ Yesterday was his first day lasting a whole hour. Today 45 minutes. He has so many great specialists! The first doctor who really pushed for us to follow up with an ophthalmologist was the Director of the PICU. We absolutely loved him because he really took his time with his patients. The concern he had was that James is currently seeing double and eventually part of his brain will shut off and he'd go blind in one eye. Worst case if the patches do not work he will need surgery. 🙏❤️🙏 Video below shows James teething heavily on some Moonjax and get excited about hearing himself make noise around his trach!

Tuesday, November 30th, 2021 New nurse today! A Leo 🦁! She will just be working Tuesdays. She jumped right in, actually taught Mom something about the feeding pump and was very interactive with James. It's still a very exhausting day for Mom because she has to get her up to speed and train the new nurse on everything... medication, med scheduling, feeding, and feeding scheduling, suctioning, the ventilator, and James' medical history (😂 this takes a while)! With this nurse only working 1 day a week it may take a few weeks to get comfortable. However she is great so far!  James had another night of outfit changes and wet sheets! At 4:30am he had a dirty diaper, then 2 wet diapers (all over the bed and his outfit), then a 4th dirty diaper again. 4 diapers between 4:30am and 6:00am. So Mom changed the bed sheets and his onesie and then vented him with a syringe since his Farrell bag was full sitting at 100ml! It was hung way to low. Should be more like 35ml.

Monday, November 29th, 2021 We noticed that James has had more gas recently and had needed to be vented more. Maybe this is because he is on straight formula now? 🤷🏻‍♀️ If he isn't vented with a 60cc syringe enough OR if his Farrell bag is hung too high this will cause leakage from his stoma GTube site. Today Mom put lights up on the outside window. We also got the lights on the tree. And everything is on a timer or Alexa! #winning Dad played some guitar which James dances to in the video below. The other video is of James just being curious about his crib. This was the first night in a while where James' bed and clothes needed to be changed in the middle of the night. Mom was up from 2:55am until 5:30am with James. First he had a dirty diaper, then he didn't settle. Mom realized his G-tube had leaked all over the bed and his onesie was soaked up the back. Mom had to change his clothes but also put a blanket down on the wet bed because it's pretty hard to hold James i...