The Journey of James Weston

Saturday, November 12th, 2022 We went to the zoo again because the weather was a little cooler. We planned it so his 2½ hour sprint was in the middle of the day, and we only went for the last 2½ hours before they closed. This was the first time James got to be off the vent and see the animals up close instead of being restrained to his carseat on a stroller! We still had the ventilator with us along with all of his equipment. Although we do now leave the oxygen tank in the car. Mom and Dad took turns carrying him. We also took off his pulse ox because it would constantly alarm if James would move. So his only connections of being tethered were to his feeding pump and his Farrel bag. In conjunction with the flying squirrel (feeding pump holder from Etsy) these items can be easily hung from pants or from a pocket. James also got to experience his first photo booth! Yes, we paid extra for the video below. 😂 After this zoo we went to the Olive Garden and hooked the travel highchair to the...

Friday, November 11th, 2022 Today James tried two things: 1) James tried new textures with a few different Gerber Snacks for Baby 2) James fed himself using his fingers with tastes of applesauce 🍎. We tried Gerber banana puffs, Gerber strawberry yogurt melts, and a Gerber strawberry apple Soothe N Chew Teething Stick. He kept in the yogurt melts the longest but eventually spit it out. The puff honestly did not melt in the mouth that fast, but James did try biting little bits with his teeth. The teething stick almost felt like a dog bone. James licked it but wasn't chewing on it. It'll probably just take him some time to get used to new textures. Also since we have James off the vent while he is doing his feedings in the evening he is deflated and can now taste more than ever. The deflation of his trach cough allows air to move through his vocal cords allowing him to taste. 😋 P.S. You can email James your love and support as often as you’d like. Mom and Dad read these email to...

Thursday, November 10th, 2022 James started the morning off by taking off his pulse ox and trying to put it back on himself. Once he knows that Mom has caught him he attempts to just slap it on his foot! 😂  We spent a lot of time playing on the floor. Unfortunately when James is still on the ventilator he doesn't realize that he is tethered. He thinks he can just scoot around the house. It's so sad that we have to restrain him from being a toddler so that he doesn't decannulate himself. His favorite thing to do is pull himself underneath furniture, specifically our cot. It looks like he is working on a car as a mechanic. 🤣 He is really into anything with wheels, mechanical, or something he can take apart. James really needs a trip to the Home Depot! Mom's favorite store!  Our family dinner night was at Red lobster 🦞. We brought James in off the vent since he would be offered 2½ hours. He sat between Mom and Dad and a wooden high chair and was excellent! James really ...

Wednesday, November 9th, 2022 It was a busy day. We started out with a very early morning pulmonology appointment. These photos are of James around 8:30am before we left. Yes, he is still on Juju time! 🕣 At our appointment, we did not get to meet with the doctor again. The trade off is that although morning appointments don't get to see the doctor they are a lot quicker. So instead we met with the nurse practitioner. During the appointment she mentioned that a new study recently came out stating that the passy muir valve should only be used for short periods of time (30 minutes) when trialing off the vent due to this causing speech delay. 🤷🏻‍♀️ (This makes absolutely no sense and we could find no such study online). She also stated that they do not do sleep studies or capping. (Again, what?!) She said basically the idea is that as long as they have the trach their body will automatically want to use that instead. What is interesting, is that it is completely unheard of to skip t...