The Journey of James Weston

Tuesday, May 31st, 2022 James wore his first man bun today. It's just so hot not only because it's Florida and James has to wear a helmet, but so because our AC is only working when it wants to. 🥵 Mom helped another trach Mom out with taking photos of our super organized medication station. It's crazy that our syringe organizer doubled in price so we can't really recommend it anymore. He also fell asleep in his high chair for the first time. It was pretty immediate; he had a long day with Mom. There is a cute video recording the sound he is making in his sleep. Lastly, James showed us that he could reach his foot to his mouth! We let him know this is a once in a lifetime thing. 😂 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, May 30th, 2022 Mom spent the day with James since Monday is Dad's day off and he was able to enjoy it with Uncle Andrew who was in town. James took a nap on Mom's bed and we also contemplated cutting his hair. The helmet doesn't help the situation! In an attempt to feed James through his G-tube for an extended amount of time the formula went into his Farrell bag instead. This is because his stomach can't handle the volume and the bag has to be hung at just the right height. Almost 150ml which is 4 hours worth of feed was lost. After so many hours it needs to be tossed sitting at room temperature even when it's mixed with gastric juices. Mom ended up replacing it with 40ml of Pedialyte for the loss of the electrolytes from the stomach. 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, May 29th, 2022 In the morning Dad worked with James on making some moves in his walker. This particular bouncer/walker has very tight tires so it doesn't move as freely which is great when they are just learning. So it doesn't go too fast but that also means that James needs to use some muscle! James was able to move a few feet by taking steps backwards. These aren't necessarily purposeful steps in that he is trying to go a certain direction we think it's just easier for him to push off of his toes to move backwards. In the future we will be trying to guide him to go after something. Any physical therapist will tell you that a walker/bouncer does not actually help babies learn to walk. It is however allowing him to put pressure on his feet and get used to that feeling.  We have had a lot of daily outfit and bed sheet changes due to his G-tube leaking. Have been feeding him in his G-tube for 1 hour a day but he typically can only tolerate about 30 minutes of that...

Saturday, May 28th, 2022 Dad took over for Mom in the afternoon so that Mom could get her 24 hour break for the week . 😴 Uncle Andrew from Arkansas came to visit for the weekend so he and Dad could talk shop. We enjoyed some of his classical masterpieces on the piano! 🎹 🎶 Morning Nap Might need a haircut! 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, May 27th, 2022 James made huge progress today scooting and wiggling himself across the floor. He made it about 6 feet on his own. Mom literally dangled a wooden carrot 🥕 at one point. We eventually made it to the living room couch. Played with a few puzzles and then took a nap. This was the first time James really got to spend in this area of our home. The hardest part is that even though all of his equipment is on the three tiered cart it is connected to a power strip and that cord is only so long. So Mom needed to disconnect the power strip for a period of time when the cart could not reach an outlet, yet James wanted to move forward. All of the equipment runs on a back-up battery except the humidification chamber which will just turn off. When it is only off for a few minutes it is fine. Worst case we could always do an additional nebulizer treatment in case he would to get a mucus plug from being dried out. Power strip cord. Mom's favorite photo! James clapping for him...