Day 892 - G-tube Success, Photoshoot, & Climbing McGee!

Sunday, June 4th, 2023 - Saturday, June 10th, 2023

🐟 On family day we took James to the Florida Aquarium. It is free on the first Sunday of the month for Bank of America members. We only recommend going if you can go for free. The plan was to get photos of James with his "Big Brother" t-shirt on but we just couldn't get a good one where you could read the shirt.

👏🏻 Monday morning we started feeding James in his stomach (G-tube) but connected to a Farrell bag. So the feeding tube was connected at the Y-port. It's important to prime the Farrell bag first and then the extension. As well as hang the Farrell bag higher than the feeding pump and keep the Y-port below or at stomach level. What's does that mean? It just isn't easy to have James move around with so many restrictions. Sometimes it required Mom to use the 3-tiered Ikea cart to hang the Farrell bag from the IV pole. Glad we didn't break it down yet. James did great though! There wasn't a whole lot of leaking. He was tolerating being G-tube feed. We really think the cyproheptadine really helped! Below is a photo showing the difference between a G-tube and a GJ-tube.

📸 Mom ended up getting some cute photos of James at home to use for the "official FB announcement". On Wednesday, he got another haircut. James didn't whine or yell at all! Unfortunately this time it was just way too short in the front. But the worst part was that during his haircut the Farrell bag was hung too low and drained his stomach of formula that we would need to put back slowly. Afterwards, we took James to see The Little Mermaid. He loved it but Mom didn't like how it wasn't like the original. Three new songs making it 40 minutes longer same odd casting choices for some of the supporting roles. However even with the Farrell bag hung higher during the movie it still managed to drain his stomach! The Farrell bag had 150mls which was over 3 hours of feeding. Getting that gravity fed back into him took all night.

🧜‍♀️ James did excellent in physical therapy this week! He climbed the entire staircase! It's the only way we can get him to crawl. James had to take a couple of breaks where he just sat on a step for a second while Mom held him. As soon as he saw the top of the stairs he didn't stop.

📦 Mom was also in the process of change DMEs, transferring medical records, switching pediatricians, packing for the roadtrip, ordering enough supplies, and getting medications refilled. Our DME agreed to ship out formula early but 2 out of the 4 boxes were leaking. One of those boxes were unsalvageable with exploded cartons. It was a huge mess! It was unfortunate they shipped it knowing it was leaking. The leaking boxes were wrapped in a plastic bag and then placed in another box. It's never shipped like that. 

🛝🌳 We wrapped up the week by taking James to a new nearby park. James absolutely loved it! We disconnected from his feed for a few quick minutes. He went down the slides, climbed up a ramp almost by himself, and wanted to explore! Video montage below!

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