The Journey of James Weston

Monday, February 13th, 2023 👨🏻‍🦽 We started off the morning at the hospital for an appointment with "Motion Analysis" to discuss a stander and or medical stroller. These were recommended by the PT at St. Joe's. Mom wasn't a big fan of either because 1) James is already standing 2) We have done just fine accommodating our Baby Jogger to hold his equipment 3) We will soon be eliminating the ventilator and oxygen all together. So all in all it was a lot of back and forth of "research studies show" or "research studies do not show"...blah blah. Mom pointed out that the number one thing that is actually a problem right now is the fact that when James wants to scoot around on his butt he is still connected to a feeding pump and Farrell bag which Mom or Dad has to hold. Immediately after stating this the recommendation was to get James a wheelchair. She stated, "No one knows 100% if James will ever walk". 🙄 It's kind of like saying, ...

Sunday, February 12th, 2023 A somber morning as we packed up equipment into the car. It was a good thing that we had backup supplies at Juju's because Mom had forgotten major items in her rush to get out the door in 10 minutes on Thursday. We forgot things like trach ties, 2x2 split gauze, and HMEs! But we had enough stashed to be saved! Guess what else? We forgot the Tobramycin that had just arrived at the house on Tuesday. James was supposed to start this on Thursday night. His schedule is 28 days on and 28 days off. We ended up starting this on Sunday night instead. On our way home we stopped for dinner in Orlando looking for a good spot. We found a Pho restaurant that was on Triple D called Saigon Noodle & Grill, so we had to check it out. James was again groovin' to the music. Video below. This time is was current pop music remixed into lounge versions. Our waiter was playing peek-a-boo with James and he was cracking up. In the dark photos below on our drive home, Jame...

Saturday, February 11th, 2023 Today Dad watched James as we tried to continue our normal routine with Mom getting out of the house on Saturdays.  In the morning Juju and Aunt Robin took Champ to the vet. He still had his IV in from a few days ago. Champ was not doing well and had had a very bad night and morning. He had passed away at the vet. 😭 Champ would no longer suffer in pain. We were blessed with a loyal pup on March 12th, 2015. Ironically it was also Champ Week for men's college basketball. This is the day the lady from the rescue facility brought Champ all the way from Valdosta, GA to Jacksonville to meet Mom's family. Initially we were supposed to adopt a female dog but since she had others interested we decided Champ needed a home too. He was rescued at 8 years old and was previously crated the majority of his life. 😥 Champ came to us with a buzz cut but only a short time later his Maltipoo coat grew out. Early on in his life with us he was mistreated by a veterina...

Friday, February 10th, 2023 Today James got a new guitar from Juju! This way he has one wherever he goes. James was very happy to see everyone especially Tommy and Champ. James had no hesitation to pet Champ, however with Tommy he's still a little cautious. We think it's because Tommy also gives off a hesitant energy. Every time James sees the dogs though he gets more and more comfortable. We didn't do much today since yesterday took most of our energy. Mom just confirmed James' appointments for the upcoming week. James has first dentist appointment and an appointment at the hospital with motion analysis for possible PT equipment. James joined us for dinner while he stacked colorful cups. He is obsessed with stacking and lining up everything now! In the late evening Champ wasn't feeling well and had to been giving seizure medicine a few times. He has been struggling with his health. 😥 P.S. You can email James your love and support as often as you’d like. Mom and Da...

Thursday, February 9th, 2023 🤕 Again, James had 25 sensors attached to his head, face, and chest. They monitored his brain waves, oxygen levels, heart rate and breathing as well as eye and leg movements while he slept off the ventilator. We have no idea what these results will show. On one hand, Mom had to suction him throughout the night from 10pm until 5am, which we normally don't have to do. (Mom did not sleep, but James was able to sleep through everything.) On the other hand, he did not need any oxygen last night. 🤷🏻‍♀️ This is the longest he has been off the ventilator and just on an HME; a whole day and a half! Both our pulmonologist and our ENT let us know that they don't rely on the sleep studies to provide very accurate information. These two doctors have always been up on the latest research and studies have found that sometimes the results will come back saying there's a sleep obstruction, which ironically sometimes is just the trach itself. 😂 We won't h...