The Journey of James Weston

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!

Ella at 4, 5, and 6 months (and some extras)! Wow time is flying by because in 2 weeks she'll already be 7 months! 😱 She is such an easy baby! I don't mean because there isn't medical stuff because James was soo good too. Ella is just so chill. She can hang. Always smiley and content. Currently she has been making James laugh so hard! It is the best thing ever and one of these days I'll get it on video. James continues to be so sweet with her and I'd love for this to last forever!🤞🏻🤣 Soo much to update! Life has been great! If I ever find some time I would love to! ✌🏻❤️

Yesterday was James's first full day of Pre-K! For the past 2 months, James has only been able to do half days because of nap time; he required oxygen while sleeping. The great news is that James is now officially off oxygen completely! Also, we have worked with our GI team and the school nurses for them to be able to administer G-tube feeds at school, so he can stay a full day! It's so important to take the time to celebrate the wins because with a medically complex kid, there is always something to be working on! 👍🏻 From ventilator weaning to stopping the ventilator completely, to scheduling decannulation, to getting the trach stoma closed, to graduating from a GJ to a G-tube, to getting off of oxygen... It feels never-ending! That is just the medical side of it. There are also those normal things like walking, talking, eating... James has done great with those as well and cognitively he is acing everything! I recently saw a post from John Israel talking about perpetual dis...

Today Ella Jade is 3 months old! These are photos of her first 3 months. She is the sweetest little thing and about 12lbs! 🩷 Her little coos and smiles bring us to tears, absolutely adorable! 🥹 Everyone who meets her says, "She's like a doll". Sometimes it feels like this isn't real. Ella is always looking around the room, especially at whatever James is doing, just taking it all in. She is so strong, trying to stand, and holding up her head on her own. James continues to be such a sweet and gentle big brother. He is so excited about teaching her things, mainly about the difference between an oboe and a clarinet, or a mandolin and a banjo, but he's also really into circles and pentagons. 😂 Ya know normal toddler things. Time is going by too fast! These first three months have been a little crazy with the newborn stage, exclusively breastfeeding around the clock, and cluster feedings in the middle of the night. Although there were definitely days of no sleep, it...

Exciting things are happening! James just finished his first week of school!!! 📚 He is thriving in Pre-Pre-K at an undisclosed location. 😂 His social nature will flourish, and we can't wait to witness his incredible progress with each passing day. Every Valentine's Day I think about how it's the anniversary of the first time I was able to hold James in the NICU. 🥹 Today, he's a three-year-old student learning new things in the classroom, enjoying recess outside, having snack time, and going to music, art, and PE class on a regular basis! Who would have imagined it?! 🤯 Next week is picture day! 😍

Who would have thought all this would unfold in the past year? Our 2023 was jam-packed and turned out to be the grandest one yet! We had our fair share of ER visits in the spring, but nothing could stop James from pulling off some jaw-dropping feats! By February, he had completely bid farewell to the ventilator, got decannulated in April after a sleep study, and had his trach stoma stitched closed in October! We even swapped James' tube feedings from a GJ to a G-tube over the summer. Big wins! James embarked on his maiden Disney voyage, featuring both a cruise and a Disney World expedition. He even made a star-studded appearance at his first Cutco awards banquet. And just when we thought things couldn't get better, Mike unveiled a shiny new car, right after a routine oil change. We crisscrossed the nation on a 3-week road odyssey, giving James the chance to meet a platoon of family and friends. Once we returned, we decided to make the move to historic St. Augustine!  Throughout...