The Journey of James Weston

Saturday, October 22nd, 2022 We started off the morning putting James in flannel plaid because it had been chilly this week, but it was short lived due to Florida not really having a Fall. 🥵  The plan for today was to stop by a pumpkin patch and then visit the Padron family. Unfortunately the pumpkin patch was very underwhelming. Just a parking lot with some pumpkins and hay. Not really accessible with a stroller either. The photos on their Facebook page was false advertising, so after about 30 seconds we decided to leave. 🎃 When we first arrived at Uncle Dr David's parent's home James was overstimulated with the new environment and people and started crying. This time it did not take James very long for him to calm down. James was very fond of David and Abuela Padron! She made us an amazing meal while James took a nap on the couch even while the TV was playing. Then we took a walk outside to see the cows. 🌳 This was James' first time seeing any large animal up close. Co...

Friday, October 21st, 2022 Today is Mom & Dad's 5th anniversary! 🍾🥂 💕 We wouldn't know what would lie ahead but we knew for certain we'd be able to handle anything together. 💗 5 years married 💍 3 moves - Bought, renovated, and sold our first home! 🏡 1 Chihuahua pup (who has been living at Juju's) 🐾 1 miracle baby boy 🥰 4½ years of IVF, 4 surgeries, & 454 fertility injections 💉 2 angel babies 👼🏻 2 frozen embryos in waiting 👶🏻 (🙏🏻 prayers please) 8½ months in a hospital 🏥 81 trach changes 🩺 2 new medical degrees 😂 4 new businesses 💻  We were busy the last 5 years! ❤️ Today James started off by using his time off the vent to explore the plants outside. He really loves the purple orchid 🌸 and wanted to touch everything. Mom made sure that he didn't get his hands on the crown-of-thorns plant. Then Mom and James went inside and sat on the couch where Mom got some great photos of James! Something as simple as a toddler playing with their feet 👣...

Thursday, October 20th, 2022 Thursdays have become PT 🤸🏻‍♂️🏋🏻‍♂️ and Family Dinner 👨‍👩‍👦 🍽️ night. Today in physical therapy we focused on only playing with one toy at a time. James likes to continuously sign for "toy" until he gets more toys. We are really working with him on scooting forward but he now realizes that he can just pretend to cry and reach for Mom if he wants to stop PT. So that's a lot of what is happening during the 1 hour! Thursday is now family dinner night and this evening we decided to try a new place, Longhorn Steakhouse. The thing about bringing a baby in a stroller on a ventilator into a restaurant is that you can't just put the stroller aside. We have to be very methodical about the places we can go. We think about the layout of the restaurant, if they have tables and chairs versus only booths, and how crowded it is. You have to consider if there is room for waiters and waitresses to get by. When we told the hostess that it would be ne...

Wednesday, October 19th, 2022 Today was the first chilly day that we've had in Florida and a long time. Mom had a doctor's appointment in the morning and then James had his GI appointment in the afternoon. This is the first time that Dad would meet the new GI doctor. At his appointment the only change that we really made was to increase his feeding. James' weight and his height had not increased since June so his weight has not been on the growth curve it needs to be. Previously his weight was on a pretty good projectory but his height was below the curve. Now it looks like his weight is on the same path as his height. This means that he will be more proportionate but overall both are below the normal growth curve, which is understandable for his situation. His feed rate went from 35ml/hr to 40ml/hr; still keeping 5ml/hr of water added to each hour. Instead of having an hour and a half break we would use the hour and a half break to do a transition to his G-tube. Dad asked ...