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...
Saturday, August 21st, 2021 Mom and Dad finished up their Room-In on Saturday. Everything went really well! The hardest part is going to be preparing his feeds and making sure that those are given on time along with the meds. As soon as you think you have a break from giving him a med you realize that you now need to prepare fortified breastmilk. Preparing fortified breast milk includes thawing out frozen breast milk moving it to the fridge then taking the thawed breast milk mixing it with measured out Similac Advance powder (180ml of breastmilk to a teaspoon of formula). He only needs 130ml though for 4 hours because the CDC regulation is that breast milk can only be out for 4 hours at a time. Currently his continuous feeding schedule is 32 ml an hour so that is 32 x 4 = 128ml (rounded to 130ml). But because we have to fortify 180 ML at a time there is roughly 50 ml left in a bottle we put back in the fridge until the next feeding. Mom and Dad gave James a bath and his teeny little tu...
Today was Day 7 out of 15 of James' Intensive PT/OT at Wolfson's! Taking his first independent steps! ðŸ˜ðŸ˜ðŸ˜ Thank you everyone for the love and support! This summer has been INTENSE between learning how to walk and weaning off the feeding tube! Huge progress though!
Wednesday, August 25, 2021 Early Morning: After getting James settled for the night, Mom posted up on a mattress on the floor next to James’ crib in our living room and Dad slept upstairs. They agreed that Mom will take the first few nights and Dad will take the first few mornings until things get routined. James decided to continue his late night/early morning routine of fighting sleep, which means Mom didn’t get to sleep much at all. She gave him his Clonidine and other meds at 2am and unfortunately the home vent setup creates a ton of water in the circuit which flowed all the way up to James’ trach and nearly water-boarded him. Mom was able to navigate through this and eventually get James to sleep around 4:30am. Dad came downstairs to give James his meds at 5:45am to find Mom just getting to bed. Since James was fighting sleep, Dad held James for a little while to begin the day. With Mom’s coaching, we found a position that worked real...
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