The Journey of James Weston

Tuesday, February 21st, 2023 Today was a busy day with physical therapy and then an afternoon appointment across town. 🚗 👩🏻‍💻 Mom had an early morning virtual appointment with the new fertility doctor to discuss a new protocol for the next cycle. 🧍🏻‍♂️Then James had PT at home where he worked really hard on standing and shifting his weight. Our therapist accommodated us by coming early so that we could leave on time to make our afternoon appointment. We needed to drive about an hour east to see our new endocrinologist.  👩‍⚕️We were referred to this new endocrinologist at USF by our new orthopedic doctor. He said that she specialized in bone density and with James' history of prematurity along with his partial recessive gene of osteogenesis imperfecta, it was good to have someone who was familiar with it. Like all doctor's appointments it seems like you wait a very long time to actually speak to the doctor. You go over all of the medical history and current medications. Y...

Monday, February 20th, 2023 Mom called the pulmonologist's office to let them know how our ENT appointment went last week see if we needed to move up our pulmonology appointment. We aren't scheduled to see them till the end of March but we have this airway evaluation on March 9th. 🤷🏻‍♀️ The admin there who is super nice told us she believed that pulmonology should be included on the procedure on March 9th, so she was going to reach out to our ENT doctor for the office notes from last week and get details. We had physical therapy at the hospital and this was the first time that Mom would stay in the lobby and not go back with James. He cried and screamed as the therapist walked away with him. Took him a few minutes to calm down but he eventually did. The therapy is only 30 minutes anyways. The therapist said James ended up playing with another kid. He was a former trachie and G-tube kid who was a year older than him. James supposedly took his toy from him, so we need to work w...

Sunday, February 19th, 2023 We started feeding James formula again through his G-tube. We are starting slow and doing it over a longer time period, meaning 15ml/hr over 1½ hours for 4 days. Instead of increasing by 1ml everyday, we decided to increase to 1ml for 4 days. Hopefully that will give his stomach enough time to learn to tolerate. He has been doing great with capping. Even time he gets really agitated or sleepy we will switch out for the HME. In the morning Dad gave James eggs and sweet potatoes to try. He didn't eat it as much as played with it. Today we went to Busch Gardens. It was probably the busiest day of the year to go. There was absolutely no parking, not even handicap. So Dad had to park the car about a mile away. James saw the Sesame Street show and this was the first time that he did not get upset or cry when hearing people cheering and clapping. He wasn't really super excited or dancing just staring because he could not believe that Elmo and Cookie Monster...

Saturday, February 18th, 2023 James spent the day with Dad and watched a lot of Sunny Bunnies. Since James is now more active it is very exhausting chasing after him when he is getting around on the floor. We do not have nursing since Home Health nursing has lost our trust. Only Mom and Dad can watch James. We're still trying to get used to this life. Not only having a child but a medically complex child who needs 24 hour supervision. That means not being able to just leave them in a crib and go take a shower while they nap. No, someone must be watching at all times. Even when you are alone watching him going to the restroom is a quick event usually with the door open. So if Mom can get one day to herself out of the house she will take it because she knows that James is safe with Dad.  🪣 Once Mom fills her bucket she can defeat the physical, mental, emotional exhaustion to handle another 6 days in a row. Only having a 24-hour period to ourselves versus having the whole weekend and...

Friday, February 17th, 2023 In the morning, Mom and James worked on standing. We will be using whatever distraction keeps James standing. Right now he is loving the Mickey Mouse club and puzzles. Great news! The caps came in from Mom's online order this afternoon! Much earlier than expected! So this evening we tried James fully capped! He lasted from 5:45pm to 7:45pm. Our ENT doctor let us know what to look for when he needed a break from it, because he would instantly get upset. At 7:45pm, it was time to put him on the ventilator anyways because we needed to do his nebulizer treatments. For some kids it's easier to tolerate the cap than the passy muir valve. James had no issue switching from the HME. Over the next week we will be keeping the cap on for as long as he'll tolerate but switching it out for the HME during naps. Currently we are still keeping him on the ventilator at night until Mom discusses the sleep study with the Pulmonologist. She will follow up with them o...