The Journey of James Weston

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...

Tuesday, November 8th, 2022 Mom drives James back to Tampa solo. The 3½ hour drive home only took 6 hours with 6 stops, 2 diaper changes, James crying the entire time causing secretions, iPad died, suction machine died, ventilator died twice (even after battery replacement), and lastly James continuously ripping off his pulse ox sensor monitoring his stats. But he did sleep for the last 20 minutes. It was rough! 😩 The worst part was that he just wanted someone in the backseat with him. 🥹 Mom wouldn't have done this last year but James is very stable now. It was mainly just really inconvenient. He was super safe and we would always waited to get off an exit instead of on the side of the highway. We definitely have so much respect for all the single moms out there with medically complex kiddos. They don't have a choice but to do this. P.S. You can email James your love and support as often as you’d like. Mom and Dad read these email to James as they come in. We all love them! J...

Monday, November 7th, 2022 We took James off the vent for 2 hours and had him sit with us at the table while we were out. Video Below of James Dancing, Blow Kisses, & Eating an Orange @ Le Petit Paris in Jacksonville, FL James had to pinch himself that we was off the vent! Tasting an Orange 🍊 Dancing P.S. You can email James your love and support as often as you’d like. Mom and Dad read these email to James as they come in. We all love them! JamesWestonAbramowitz@gmail.com

Sunday, November 6th, 2022 In the morning, James play with his toys and the remote control which is his favorite. When the dogs woke up James was so excited to see them! He is getting more and more comfortable being around them. They're also more comfortable with James. Once in a while James will try and sneak in a pet when he thinks that they aren't looking at him. As soon as they turn around James will stop. So he's not one of those toddlers that just squeezes the dog until the dog wants to bite them. James very much is gentle and cautious. We took James on a trip to IKEA! He did really well probably because he was constantly stimulated with so much to see!  In the evening, mom tried a different brand of pregnancy tests and ended up getting a much darker line! Thursday will be the official blood test of the clinic but we are already celebrating over here! 🥳🤰🏻🥰 Off to IKEA Changing feed bag in the bathroom Walking through kitchens and living rooms He thinks he needs th...