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...
Today was Day 7 out of 15 of James' Intensive PT/OT at Wolfson's! Taking his first independent steps! 😭😭😭 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!
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...
Monday, August 2nd, 2021 Weight : 7140 grams (15lb 11oz) Height: 22.5 inches Couple of upsetting things overnight: Alarms going off and nurse is not coming in to check on him We wasted a ton more breast milk again I just dumping full bottles into the feed bag without measuring. At one point there was 8 hours worth of milk in the bag. Breastmilk isn't supposed to be out more than 4 hours. Trying to do x-rays in the middle of the night even though mom has already communicated that James is a hands off during the night. He actually text said "oh yeah I said the order says 8:00 a.m." 🤦🏻♀️ We had a new nurse today, new to us and new to nursing. She was nice. So James ended up getting an x-ray of both wrist and his lungs during Day Shift. Wrist x-ray results: FINDINGS: Zone of provisional calcification in the distal ulna and radius is less well-defined than 1 months ago and distal radial ulnar metaphysis appears slightly frayed. No cupping or fracture. Slight deformity of...
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