The Journey of James Weston

Friday, March 31st, 2023 In the morning Mom followed up with Endocrinology. Our appointment was over a month ago and we were told we would be getting a call from the doctor once she had spoken to our genetic doctor to determine which blood tests James needed to retake. The office staff seemed clueless and did not understand the situation. So of course it was left that we would be waiting for a call back. James had a great day playing with Mom. He spent time painting, reading books, and playing with his wooden activity cube in his nursery. The painting books we got from Amazon and were recommended by the early intervention therapist. It is a brush that holds water and changes the color of the pages. The best part is that once they are dry it can be done over and over again. The wooden activity cube was $70 at Target but Mom found it on Facebook Marketplace for $35 and it is in great condition. In the evening Dad got Mom a hotel for the weekend for her birthday. So once Dad was done with...

Thursday, March 30th, 2023 Thursday morning James and Mom made a drive to a local women's shelter to donate some baby things. Somehow we ended up with three bathtubs which are completely unnecessary and we have quite a few toys that James just doesn't like because they make noise and light up. 😂 🤖 Afterwards we got to stop at Starbucks and just sit in the parking lot for a minute to catch up on things while James took a nap. Today is National Doctor's Day and Mom sent a text to James' favorite NICU doctor with an updated picture of James and also to let her know that he would be to decannulated soon! She said it brought tears to her eyes seeing how much progress he has made. 🥹 If you noticed in the photos James was on his HME today. He was not tolerating the cap and was just breathing too fast. We don't have to suction his nose as much but he has lung retractions. Everyday is different. It just seems like he really is working hard to breathe. His work of breathin...

Wednesday, March 29th, 2023 The morning started off with phone calls and text messages from the wheelchair company. They said they had the medical bath lounger we ordered was ready to be delivered. Mom let them know we did not order a bath chair and we did not have a need for it. James sits up perfectly fine and has good core strength. This guy was very confused because the order was put in by the Motion Analysis department at the hospital. Supposedly she had taken it upon herself to order this for us even though it was not something ever discussed. She even went as far to add a note saying that "we bathe James in a small tub and he falls forward a lot while in the tub so this equipment was necessary". That is not true and never was true. It's really disturbing how pushy the hospital is to charge insurance for equipment. Not only would it be something we don't even need but also insurance only covers 1 item every 7 years. We don't want to limit ourselves with some...

Tuesday, March 28th, 2023 James had another great night on the HME last, with saturations at 99! 💯 Physical therapy was in the morning and our therapist was really impressed with James' vocabulary. The book called "First Words" was what we were using. James literally pointed to everything correctly when we asked. Some of these things we swear he has never even seen. 📚 📞 Today after a few phone calls back and forth we finally got James scheduled for a GI appointment at USF with a doctor that is hard to get in with. The only problem is that it's scheduled for July. We only have a few more refills of his lansoprazole (prevacid). We wouldn't be able to get it refilled from the GI doctor we are leaving because we already transferred our records. After doing the math Mom figured out it will be a really close call. It looks like we will run out of the medication just 2 days after the appointment. 🤞🏻  As Grandpa Don was leaving back to the Orlando airport in the afte...

Monday, March 27th, 2023 📆 Today after James' early intervention therapy, Mom called the ENT office and talked to someone in surgery scheduling about rescheduling James' airway evaluation in the OR. She asked if we were available on the 13th, but Mom felt like that was a little too soon since James was still recovering and he needed to handle getting capped all waking hours for weeks prior. We just started capping him again today. We scheduled for April 27th! Cross your fingers 🤞🏻 that James will be decannulated this time! Mom clarified with them that we would only be staying the one night. We would come in during the day for the airway evaluation in the OR with our ENT Doctor. They would do an in-depth bronchoscopy under anesthesia with the trach out looking to see if he has a good airway. This means no issues or concerns with tonsils, adenoids, or need for reconstructive surgery of his trachea. During our last ENT office visit the Doctor had done a short scope and said she...