The Journey of James Weston

This Thursday, Oct 12th, James will have surgery and an overnight stay at St. Joe's in Tampa to get his trach stoma stitched closed. He was decannulated (trach removed) in April but his stoma never closed. Most never do on their own without surgery. Kinda like getting your ear pierced, after a while it's not going to close up. Since it's been open James has been breathing out of it (using his nose and mouth too). We've been keeping it occluded with gauze and trach ties as well as a waterproof bandaid during bathtime, but he still pushes air through it. James continues to sleep with oxygen at night, something that started right after decannulation. We are hoping everything will go smoothly but I have heard about experiences where these kiddos ended up intubated and back on the ventilator after getting it closed. Please send him all your positive thoughts and prayers this Thursday! 🤞🏻🙏🏻 *Photo of James standing in his new kitchen step stool! He crawls up all by himsel...

James' first time at Disney World! 🛎️ Friday night we arrived at the hotel. We stayed at a Home2suites simply because they have a full size fridge with a freezer. It was our go-to hotel on our road trip and having that freezer instead of going to the front desk makes it so much easier when prepping his feeding pump. Explanation, of photo below, James thought it was hysterical when Dad would do push-ups! 😂 🌛 We knew that these would be late nights ahead so we rearranged his feeding schedule to be continuous overnight from 11pm ending around 1pm the next day. That way the majority of the day he only needed to get water. Unfortunately James was now having really bad constipation because of the formula change. This also came along with a painful diaper rash. 😖 James has never really had one before. We ended up at Walgreens buying water wipes, diaper cream, corn starch, and baking soda. We tried everything and what really helped was the baking soda in the bath and only using the cor...