The Journey of James Weston

Friday, August 26th, 2022 Dad left in the afternoon to take a mini staycation and would return on Monday. We did an early bath and trach care before he left. We have to take turns getting breaks, but someday soon we would like to try and vacay somewhere as a family. The tricky thing is without a way to transport the 3 tiered cart in the car there isn't a way to setup his equipment (easily). You may be thinking well if you guys go to the mall and the zoo then how does that work? Well that is because James is in the stroller and he would be restricted to staying in the stroller (in a hotel room for example) AND ALSO he is on temporary humidification called an HME while out of the house. He should not be on this for a long time which is why when he is home he is switched over to a humidification chamber which requires us to set up the ventilator differently then when we are traveling. We are thinking possibly about getting an attachment to our stroller, a glider board for toddler'...

Thursday, August 25th, 2022 In the late morning, the King 👑 stopped over to meet James for the first time! Today Mom got out of the house for a few hours and Dad watched James, since he would be busy for the next few weekends coming up. Dad worked with the physical therapist and we finally got a video recording of him standing up on his own. As long as he is really interested in something he will go and reach for it. This time it was a massage gun! 😂 Mom was in Clearwater getting her hair cut and was on her way back with dinner. Unfortunately she got a flat tire on the bridge, got stuck in a torrential downpour, and waited 2½ hours for AAA. Not to mention needing to turn off the A/C because there was barely anything left in the gas tank. During that time on the side of the highway, the power was going off and on back at home due to the storm. At one point the power wasn't coming back on and Dad had to start switching James off of all equipment that did not have a battery. The ite...

Wednesday, August 24th, 2022 James' morning playtime was focus on the Rock N' Roller Xylophone. The video below shows him trying to flip it over without any luck and then realizing what he needed to do. So smart! In the afternoon we had our first official EI therapy. She sang songs with him and we discussed alternative signs for James to learn. He didn't take his typical morning nap so by 1:30pm he was ready to go down. However we were in the middle of therapy. James started getting really cranky and literally grabbed his pacifier and a bean bag (for his weighted eye mask 😂) and laid himself down.  James had some carrot 🥕 puree for dinner with a side of Pediatric Compleat in his J-tube. Unfortunately this is still coming out through his GJ button so we don't really know how much James is actually getting into his intestine. We can't wait to transition back to a G-tube. P.S. You can email James your love and support as often as you’d like. Mom and Dad read these em...

Tuesday, August 23rd, 2022 James had physical therapy in the morning and today we focused mainly on him sitting up by himself and crossbody weight bearing through his arms. Currently when James tries to get up he would prefer to use his stomach muscles over his arms which really isn't going to work. He needs to learn to roll to his side and to use both arms to get up, instead he only wants to use one arm while keeping his other arm out. Then he typically gets frustrated lays back down and slams his legs on the ground. When he does do it successfully (with the help of someone giving him a hand) he immediately gives himself a clap 👏 and looks around for recognition. It's so cute! In the last GIF you'll see that he uses the crib railings as monkey bars, moving around quickly. In the first video, James is up close and personal eventually taking the phone from Mom and playing with the popsocket which is his favorite. The second video is James signing for "more" banana...

Monday, August 22nd, 2022 Early this morning was out long awaited genetics appointment. We scheduled this appointment in January and August was the first available. This appointment was one of nine that was a required follow-up after we were discharged.  Mom met with the Doctor of Genetics back on April 22nd, 2021. James was just past his full term due date (April 8th) and was in the NICU having BPD episodes frequently. We'll post a comparison photo below. He looks like a completely different baby.  So we knew going into the appointment that is would be kinda pointless for us, meaning there wasn't going to be any testing or any new answers for us. We had whole exome sequencing testing done back in the NICU and the results were negative. This means that Mom and Dad does NOT have recessive genes for osteogenesis imperfecta. However James carries a part of a recessive gene on his 4th chromosome for osteogenesis imperfecta Type II. This genetics team is trying to get done to the b...