The Journey of James Weston

Sunday, March 5th, 2023 In the morning James got tickled and cuddled by Dad. For family day we wanted to protect James as much as possible with the decannulation coming up this week, but still wanted to do something out of the house. So we took James to the nearby park. This was his second time on a swing. He loved it! Dad really wanted to have him sit in the grass, so he placed him on a small patch. Unfortunately James has a grass allergy which causes increased secretions so Mom had to stop that to prevent any respiratory issues. Afterwards we went to an early dinner for sushi 🍣 and James enjoyed more soup 🍲! He was capped the whole day. In the evening at home, James started gagging and choking on mucus out of nowhere. He threw up a little. Mom put him on the HME because he was having a hard time handling the secretions. Then we gave him a bath putting him back on the cap (because the HME cannot get that wet), except this time he threw up a ton in the tub. Like a ½ cup of mucus. It ...

Saturday, March 4th, 2023 Dad watched James in the afternoon while Mom ran errands. Mom needed to get out thank you cards for James' birthday. Yes it's been 2 months but we've also had 4 hospital trips so far this year, so we are giving ourselves grace. Finally found a Walgreens to print the photo cards. 💌 Mom picked them up and create a workstation in the car stuffing, addressing and stamping the cards. 📇 As she was sitting in the parking lot a man came up to her driver's side door and opened it. Even though this could have been a carjacking Mom's response was, "Oh hello!". He realized he had the wrong car. Then a whole minute later Mom's heart started racing. 🫀 That was a crazy delay! And good to know that's how a car jacking is going to go down. 🤣 In the evening, James pointed to a banana 🍌 so Mom gave him one. Within a minute he had mashed it open. So we let him explore it with a new spoon. It ended up being a huge mess. Chunks of banana f...

Friday, March 3rd, 2023 James had PT at the hospital in the early morning. While James was at PT, Mom had the chance to talk to another trach mom in the waiting area whose kid had been decannulated. Being that she was up the same hospital there was a good chance she had all the same doctors. And she did! It was so nice to talk to another medical parent about the same specialists. It was especially nice to hear that her son was not required to sleep capped! So maybe there was just some confusion with our ENT group. Of course every child is different. Her son did not have BPD; he had a trach due to a tracheomalacia and a heart issue. We will see! 🤷🏻‍♀️  After PT Mom took James to run some errands. We ordered some photo cards to be printed at Walgreens. They say they have a same day service. 🤣 However, most of their photo machines don't work. So the trick is you have to put your order in at several different locations and call around to ask if your order is ready. That's only i...

Thursday, March 2nd, 2023 Today we had PT at the house and James showed the therapist how he can climb stairs now. Mom has been practicing with James the last few days. Starting at the top of the stairs. We have a very long staircase and when James was starting at the bottom he could not find the motivation to get started. Whereas when we were at the top of the stairs and Mom only moved him down three or four steps he could see the end in sight! It is a huge milestone, since he has never crawled on a flat surface. James does however like to climb over people when they are in the way, but just so he can continue skooting. James skooted into Dad's office and found Dad's Tibetan singing bowl. It was a huge hit. In the evening Mom helped two medical mom's that had questions about equipment and setup. One was regarding how to connect a three-tiered car to a ventilator stand. That one is easy, you just need zip ties and bungee cords. The other was asking if anyone used a steriliz...

Wednesday, March 1st, 2023 We did eye patching in the morning since his eyes have been drifting lately. James tolerated it for several hours. 👁️ Today we had an early intervention at 12:45pm and unfortunately James was already asleep. He woke up right at the end of the hour of course. That hour was the only hour Mom had to get anything done. Maybe tomorrow... ⌛ James ran some errands with Mom and made his first trip to the post office. In the early evening James had a haircut scheduled. We wanted to make sure he looked fresh for his decannulation photos! This was at the salon that Mom had gone to a few times. The hair stylist was super nice knew a lot about James, since hair stylists are actually therapists. James did okay! 😂 He just really wanted to grab the scissors ✂️ James has a lot of hair! 🛁🫧🧼 We ended the night with a bath and trach change. We recorded the trach change since we were thinking it could be his last one. James always thinks we are going to tickle him when we ge...