The Journey of James Weston

Tuesday, April 4th, 2023 Today we received the refill for James' Tobramycin. Although the original plan was to not start the antibiotic until the 9th James had been having some green thicker secretions after just finishing the Cipro. We thought it was a good idea to get him on the medicine sooner than later, especially since he did have a slight trach infection with Stenotrophomonas Maltophilia. We decided to start Toby in the evening. We may stop it a few days early before decannulation depending on his symptoms. It is definitely a catch 22 because James typically needs more suctioning while he is on Toby.  James loves playing on his Baby Einstein piano but even more than that he loves showing people what he can do. Yep he is a show off! After he took a nap on Mom's bed Juju carried him around the house and showed him the art. He pointed directly to the Seattle space needle when asked even though he's never seen it before. James loves wearing glasses now (for short periods...

Monday, April 3rd ,2023 Today was Mom's birthday and the day it was revealed that James had his GJ replaced in Jacksonville yesterday. Juju had been working hard to help with reorganizing our upstairs loft. We moved some furniture around to make room for James' playpen. Now there was so much room for activities! 🤸🏻‍♂️ James played with some Thai noodles for dinner. He will taste it by bringing it to his mouth to lick but he won't actually eat the noodles because of the texture. He enjoys making a mess though! 🍜 James was obsessed with the yellow birthday balloon!🎈 [Video below] 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, April 2nd, 2023 Mom and Aunt Robin had a fun day in St. Pete. They went to see the Tall Ship festival, however they never actually never found it. 🤷🏻‍♀️ There was still plenty of other things to do there. While we were in the hotel that morning before we left, Aunt Robin got a call and she said, "Yeah it's right there when you come in on the right". Mom asked her if everything was okay, because it sounded like either Juju or Dad was asking where we were parked at the hotel. Aunt Robin assured Mom that everything was fine. It turns out that James' GJ came out but Dad didn't want to involve Mom! Dad explains in the video below what had happened. There was a lot of stress and tears. After Dad got in the backup G-tube in Juju had to come by the hotel to grab the car seat and stroller. Mom had no idea this happened. Not only was it hard to find the hotel but Juju was not familiar with how to get the car seat out of the car and ended up getting help from stran...

Saturday, April 1st, 2023 James spent the day with Dad while Mom scheduled some appointments for herself. James loved exploring the house and found the stack of astrology books. 📚 He was very interested in Linda Goodman. 😂 Did you know that James is a Capricorn 🐐, with a Gemini 👬🏻 Rising, and Leo 🦁 Moon?! Of course James is more interested in things that aren't toys. Juju and Aunt Robin arrived around 4pm and then Mom stopped by to pick up Aunt Robin to chill at the hotel. Juju and Dad would watch James for the rest of the weekend. Start tuned tomorrow for their adventure! 🎥 Video below shows Dad trying to get James to say Mama. His first word was actually Mama back in December. Since then there was been some regression. James says Dada with no problem now. He is also starting to say Blue 🔵 and Green 💚! 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....