The Journey of James Weston

Sunday, November 27th, 2022 Happy Birthday Great Aunt Kay! 🎉🎂🥳 Today we got back on the road, but got a super late start. We started off the day by Dad fixing Juju's grill. Who knew he could be so handy? 😆 Then Aunt Robin created some adorable little outfits with her cricut for two trach moms. One of them we were assigned to for Secret Santa and their precious girl has been in and out of the hospital. So we wanted to have something custom made "from the elves at Santa's workshop". Packing up is almost an all-day event. We not only have equipment to double check but since we have a supply stash in Jacksonville Mom needs to take inventory of how many supplies are left so we know what we need to bring next time and how much of it.  We decided to do James' bath and trach care before we left since we would be getting home so late. Last night we ended up skipping trach care because James was already asleep from the car ride back from St Augustine. That is definitely...

Saturday, November 26th, 2022 James spent the morning at on the patio with Dad while Mom ran errands at Target with Aunt Robin. In the evening, we all went down to St. Augustine to see the Christmas lights. "Nights of Lights" has been listed among the top ten holiday light displays in the world by National Geographic. We ate at Blackfly The Restaurant which is owed by one of Pop-pop's old friends. Highly Recommened! James was off the ventilator and did great. We did however forget to bring enough formula so we continued his feed with just water at the very end of the night.  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

Friday, November 25th, 2022 T James played catch with Tommy. Tommy likes to play a game where he brings you the ball but then if you try and grab it he will beat you to it. You know, normal dog stuff. James also got to see Uncle Mark who came to visit. James has been taking just one afternoon nap around 1pm instead of his normal two at 11am and 3pm. He never misses a good dance party though. Check out the video below.  Mom & Dad also gave him his Friday night bath which is done right in the TV room on top of a massage table. We put down a waterproof mat since James likes to splash a lot now. The size of the portable tub makes it impossible to use at the kitchen sink. We also need to be careful of his trach that water does not go down and drown him. Now that James is off the vent for several hours a day we may be able to get one of those bathtub baby seats for a real bathtub. Previously the ventilator cart was prohibiting us from getting into a bathroom. In our home, our only ba...

Thursday, November 24th, 2022 James had 3 outfit changes today. Unfortunately his G-tube has been leaking pretty bad. We have been trying to transition feeds into his G from his J.  His feeds are currently: 40ml/hr of feed + 5ml/hr of water = Rate of 45ml/hr This is over 20 hours adding feed every 4 hours during the day and once for nightshift (8 hours) overnight with ice packs.  Then we do 100ml at 45ml/hr (2½ hours).  Recently we've switched from a 1½ hour break to giving him water/feed into his G instead. We started at a rate of 30/ml and have increased to 50/ml.  For Thanksgiving dinner James sat in the family's vintage wooden highchair🪑. He got to visit with his Aunt Taylor, cousin Makenzie, her boyfriend, and "Aunt" Lauren. It was a late night for James so we rolled his Pack 'N Play into the dining room for him to sleep. However he gets big FOMO and cannot be away from the party. P.S. You can email James your love and support as often as you’d like. Mom and...