The Journey of James Weston

Saturday, April 8th, 2023 Kind of a random decision but Dad had received a listing for a house that looked like our dream home, so we decided to drive out and go check it out even though we knew that an offer was already made and it was under contract. We figured we would drive out to check out the neighborhood because maybe there were others like it. Right now we are renting a town home in Tampa, very close to the Bucs stadium. Our goal is to eventually buy a home and try and get the biggest bang for our buck. We really don't care about the location so we are open to living in a more rural area to get more house and land. It turns out that this neighborhood was literally in the middle of nowhere. It was a little too outside of our comfort zone. It seemed like the closest store was 30 minutes away and it was a Dollar General. That's it, just a bunch of dirt roads.  So we were looking on Zillow north of Orlando and just driving around aimlessly. Looked at a house that just didn...

Friday, April 7th, 2023 🥚Transfer day! This morning Dad and James came with Mom to the fertility clinic and waited in the parking lot. Today we transferred our baby girl who has been on ice for 4 years. She was created the same exact moment as James in April of 2019. 🤯 It is crazy to think about! We were really concerned if the embryo would survive the thaw. For those that have never gone through IVF they just have no idea what is all involved. There are just so many steps to the process. Even though you've been doing injections for weeks and your scheduled for a procedure at a certain time, you may be told right before the procedure that the embryo did not survive the thaw and then everything is cancelled. Everything would have been for nothing. We got lucky because the embryo did great! The procedure was success and now we just get to wait to see if the embryo sticks. ⏳ We were told that this embryo was an expanded blast which was one stage further along than the other embryos ...

Thursday, April 6th, 2023 Today James had physical therapy and since it was at 11am it lined up perfectly to his feeding schedule. Below is his current continuous feeding schedule. James has his Farrell bag connected 24/7 to his G except when he receives water in his G, then it is disconnected for that hour and a half. 11:00pm-8am: Formula/Water with ice packs overnight (Rate: 45ml Dose: 405ml) 8:00am-10:30am: Water in his J (Rate: 45ml Dose: 100ml) 10:30-12:00pm: Water in his G (Rate: 50ml Dose: 75ml) 12:00pm-8:00pm: Formula/Water with ice packs (Rate: 45ml Dose: 360ml) 8:00pm-11:00pm: Formula/Water no ice packs (Rate: 45ml Dose: 135ml) Overall his calorie breakdown is 40ml formula + 5ml water/ hour for 20 hours. Then 175ml of additional water. 🎒 During the time James is fed in his G, it's a great time to allow him to scoot around with his backpack on, since he is also disconnected from his Farrell bag. This way we only have to worry about the feeding pump. It's also lighter ...

Wednesday, April 5th, 2023 Juju, Aunt Robin, and Tommy left last night. Today James got to try out Mom's electric heating pad. 🔥 He loved that he pressed a couple of buttons are it turned warm. Learning cause and effect as well as sensory play exploring different textures like how soft it was. James not only loves the TV remote but loves the remote to our bed. 🎛️ He knows how to lift up the mattress and make it vibrate. A couple of the GIFs below are James dancing to the dinosaur name song with Miss Rachel. It was also almost full moon outside. 🌕 "Mom, you're blocking the TV" P.S. You can email James your love and support as often as you’d like. Mom and Dad read these email to James as they come in. We all love them! JamesWestonAbramowitz@gmail.com

Tuesday, April 4th, 2023 Today we received the refill for James' Tobramycin. Although the original plan was to not start the antibiotic until the 9th James had been having some green thicker secretions after just finishing the Cipro. We thought it was a good idea to get him on the medicine sooner than later, especially since he did have a slight trach infection with Stenotrophomonas Maltophilia. We decided to start Toby in the evening. We may stop it a few days early before decannulation depending on his symptoms. It is definitely a catch 22 because James typically needs more suctioning while he is on Toby.  James loves playing on his Baby Einstein piano but even more than that he loves showing people what he can do. Yep he is a show off! After he took a nap on Mom's bed Juju carried him around the house and showed him the art. He pointed directly to the Seattle space needle when asked even though he's never seen it before. James loves wearing glasses now (for short periods...