The Journey of James Weston

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...

Monday, May 23rd, 2022 We finally had our GI appointment in the afternoon. James had his GJ replaced on April 23rd, one month ago in Jacksonville. Mom had called the GI office back in Tampa several times but could never get a hold of the doctor. Every single time we would call the office they would say that they left a message for the doctor and he would call back. The point of having the doctor call us back was because we needed a follow-up appointment after having the wrong sized button placed. We have been adding more water to his balloon up to 6 ml as well as two 4x4 gauzes to prevent leaking. Unfortunately the stoma that we have worked so hard at keeping perfect condition is now red and sore from gastric juice leaking as well as James pulling at it. Overall the GI doctor and his office could not explain for the lack of communication and nonresponse. The doctor decided to leave the 1.5cm tract length button in and not to go through with another procedure for a 1.2cm button. When we...

Sunday, May 22nd, 2022 James had a chill Sunday with Dad in the morning and then Mom took over in the afternoon. He loves music and we try and give him a taste of everything. Today we had him listen to Dad's Harley Road Trip Playlist. Mom asked, "Alexa play Thunderstruck by ACDC". Alexa responded, "Playing the Itsy Bitsy Spider by Cocomelon". 🤣 So close! Either way James loved it! 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

Saturday, May 21st, 2022 James spent the majority of the day with Dad, while Mom got out of the house. 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 20th, 2022 We are currently working on a schedule to incorporate more food tastes and Passy Muir valve trials. Trying to do purees tastes on a bath day because it's a mess! Moving James into the kitchen even though it's only a few feet away isn't the easiest maneuver. Everything on the cart is plugged into the power supply strip, so we only have to replug that cord into the new outlet. Everything has an internal backup battery except for the humidification chamber. So when the cart is not plugged in his circuit is not heated, which could lead to mucus plugs. This week we've found he loves lemon but doesn't like the taste of banana or almond milk.  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

Thursday, May 19th, 2022 Not baby bottles! James loves water bottles and plastic bottles! He is still teething even with 8 teeth in the front. James has 4 on the top and 4 on the bottom! 🦷 He loves using them as teethers! Mom had the chance to speak with the Director of the Children's National Hospital to answer their questions regarding caring for a trach baby at home. Pretty neat opportunity to provide feedback and give suggestions on developing new prototypes that would be helpful in the future! P.S. Do you follow James' journey? James would love to read an email from you. His email is JamesWestonAbramowitz@gmail.com. How heartwarming for him to receive these and fun for you to get a response from him in like 10 years...