The Journey of James Weston

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...

Thursday, May 26th, 2022 James started off the morning taking off his pulse ox. This is his newest trick! He just pulls and pulls until the tape comes right off; he loves looking at the bright red light. Then he had math class learning to count his coins. Mom was happy just getting them in the box. James knew the coins went in and slide out the bottom. He didn't understand why we couldn't just slide the top off to save time. 🤣 He is all about working smarter not harder.  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

Wednesday, May 25th, 2022 Mom had an outpatient procedure early in the morning and Dad needed drive her home so James and Dad chilled for a few hours in the parking lot. More to come on this at a later date. In the late morning a new part-time respiratory therapist from our DME stopped by with another newer ventilator to replace our backup with a broken turbine. He also did a vent check and managed to lower the sensitivity on the LOW PEEP alarm. This would go off constantly because James has a leak around his trach. Then we had physical therapy focusing on rolling and scooting. Unfortunately we also found out that our speech  therapist assigned to us with Early Steps decided that a baby with a trach was beyond her scope and declined working with us. This was just going to be in addition to the speech therapy we get at the hospital, so not a huge deal. But it just shows you there is a need for more therapists experienced with trach/vent patients! P.S. You can email James your love a...

Tuesday, May 24th, 2022 Mom had ordered James three new developmental toys from Amazon courtesy of all of the lovely Amazon registry donations. ❤️ There is a very expensive monthly subscription that gets advertised to every new mom on every social media platform. They play off of mom guilt that you need to have this $120 monthly subscription to have the perfect toys in order for your baby to develop. "Lovevery" is outrageously priced, but the good news is that there are very similar toys on Amazon! The important part is understanding what is the toy trying to get accomplished and then you can get any toy that does that same task! James is currently inspecting, exploring, and destroying! He is practicing nesting and stacking, learning about object permanence, learning fun lessons in cause and effect, building his fine motor skills, practicing two-handed coordination, building finger strength and dexterity. The idea is that we are promoting speech development and laying the fou...