The Journey of James Weston

Monday, March 27th, 2023 📆 Today after James' early intervention therapy, Mom called the ENT office and talked to someone in surgery scheduling about rescheduling James' airway evaluation in the OR. She asked if we were available on the 13th, but Mom felt like that was a little too soon since James was still recovering and he needed to handle getting capped all waking hours for weeks prior. We just started capping him again today. We scheduled for April 27th! Cross your fingers 🤞🏻 that James will be decannulated this time! Mom clarified with them that we would only be staying the one night. We would come in during the day for the airway evaluation in the OR with our ENT Doctor. They would do an in-depth bronchoscopy under anesthesia with the trach out looking to see if he has a good airway. This means no issues or concerns with tonsils, adenoids, or need for reconstructive surgery of his trachea. During our last ENT office visit the Doctor had done a short scope and said she...

Sunday, March 26th, 2023 Today Grandpa Don drove in from Orlando. 🚗 We took James out to brunch at Lenny's diner in Clearwater. James did great! He got his first balloon animal and it was Mickey Mouse. 🎈The balloon artist asked us if James had a tracheostomy. We were pretty impressed with his knowledge. Once inside we used our travel highchair that fit in the booth. It really comes in handy when we go to a small restaurant and there isn't room for a regular wooden highchair. James played with an empty bowl and spoon. 🥣 Afterwards we continued on to St. Pete to check out the Pier. We got a new bath toy for James and he chilled next to the water dancing to the music. 🌊 For dinner, James went to his second restaurant in the same day! 😯 We went to his favorite sushi restaurant. 🍣 🥢 At night, we took James off the vent and he slept on his HME.  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 ...

Saturday, March 25th, 2023 Today Mom stepped out to run a few errands like picking up a prescription but most of the "stuff to get done" was at the house. Back at the house we got James to play with his Mr. Potato Head. He finally was open to it and not scared. We think that James seeing Blippi and Miss Rachel play with a Mr. Potato Head helped.  We still have James on the ventilator at night and the HME during the day. The suctioning has been a little better. Tomorrow Grandpa Don comes to visit! James dancing to music 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

Friday, March 24th, 2023 We started off the morning with our early steps re-evaluation zoom call. 💻 James will only have early steps until he is 3 years old. The early steps coordinator, our physical therapist, and our early intervention therapist was on the call. James was showing off for them! Overall everything went well but the Early Steps coordinator really talked down to the therapists. This is the 2nd time Mom had experienced this and it is especially concerning since it is done in front of the parent and patient. After we are finished with the program Mom will address this concern with an higher up. Today James showed Mom that he know his vehicles like school bus, fire truck, motorcycle, police car, and boat. 🚒🚓🏍️🛳️ He also matched up two similar but different puzzles, which is kind of advanced!  📞 Mom made a few quick phone calls before we headed out. It had been two weeks since we had transferred our GI records to the new doctor and we had not heard anything yet. Wh...

Only posting this 2½ months after we received them 😂...but better late than never!  This year has been crazy busy with all of the hospital stays 🏥, the Disney cruise 🛳️ and then the corona virus 🤧, the emergency GJ replacements and last minute drives across the state 🛣️, the cancelled decannulation and RSV 🤒.  In February, Champ crossed the rainbow bridge 😥 and just last week Taylor and Mark tied the knot. 🍾 We think it's important to capture memories 📸, so for James' 2nd birthday 🎈 this past New Year's Eve we had a photographer come to Juju's house. We were so glad that the family could be involved. Emily did an excellent job and was very sweet and flexible with us! 😊 If you're looking for a photographer in the Jacksonville area definitely reach out to her! Some favorites below. Click the link to see the rest! Photoshoot 12/31/2022 📷  Emily Morris