The Journey of James Weston

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...

Tuesday, February 28th, 2023 Today James had some early morning PT at home where we continued working on standing as well as shifting his weight from one leg to another. We would pick up one of his legs and then switch. James was totally fine with it and kept his balance the entire time. 👍 Mom attempted to play ball with James, but he ended up being a ball hog and had a few violations for traveling. 🏀 🤣  Video below. James even scooted out the back patio door. Mom was showing James how to put on the grill cover and he figured he would just come down the step to go outside too. He had no hesitation about skooting on the wood but Mom didn't let that happen. 🪵 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

Monday, February 27th, 2023 It started out that any other morning. Mom was doing his morning care getting him ready for PT at the hospital. Then it turned into a morning Mom will never forget.  Below is the post mom shared with the Trach Mom community to help others be more aware... ----- I almost accidentally killed my son this morning. I was hesitant about posting this for several reasons but I know that posts like these have helped me become more aware of how a situation can happen and overall more on alert. This morning I had put my son on the ventilator quickly to do his nebulizer treatments because that is the only way that we are able to do them. He is off the ventilator otherwise and is very stable. When we were finished I took him off of the ventilator and put on his red cap. He was still fully cuffed! I completely skipped the step to deflate his cuff (and we have been doing this for a while). I proceeded to put away the ventilator circuit, still standing right there. He w...