The Journey of James Weston

Sunday, November 21st, 2021 James has a new trick and there is a GIF you can check out below. He switches his hands back and forth. May not seem like a big deal but every new thing is a big deal to us! What is nice about taking care of James not only as his parent but his nurse you notice every little new thing everyday! James is sportin' a custom onesie handcrafted by one of Dad's sales reps. We need to put James in the same outfit and in the high chair swearing this one.  In the evening Mom noticed that the full moon was shining a moonbeam on James' crib.  Moon Beam lights up his crib. Zoomed in on phone. P.S. If you read the blog and are supporting James through his journey we would love you to participate in our video montage of everyone singing his lullaby. Please see the James Weston lullaby post for more details. ❤️

Saturday, November 20th, 2021 Today is Aunt Robin's Birthday! 🎂🥳🍰🎁🎈🎉 The family got on the road to Jax around noon. James got his snuggles in on a lazy Saturday. The boys dressed up in their matching bandanas. Today in the mail we received some awesome custom onesies from "Aunt" Megan. Look out for those in the days to come! We let the staffing agency know that we did not want to continue with the nurse we had on Tuesday. She was a danger to James and more work for Mom! They completely understood. So that is 3 nurses in 2.5 months that we've had to let go! Now we are down to one and she is good. She's currently working M,W, F but there is a possiblity she may be picking up a few hours on Tu and Th which would be ideal. You may be thinking, well you don't have anyone to back up if she calls out! That is correct! Instead of having the staff agency send us some random person for one day that Mom would spend the whole day training it is easier just to handle...

Friday, November 19th, 2021 Aunt Taylor had her first hold while James took a nap. Dad came home in the afternoon and James caught him up on the week's events! James received so many new 12 month outfits from Juju, Aunt Robin, Aunt Taylor and a huge box from "Cousin" Mary and the girls in Indiana. He is so set! 👕🩳 The temperature has dropped in Florida and James wore his first sweatshirt to bed from Uncle DP. ⛄🌴 P.S. If you read the blog and are supporting James through his journey we would love you to participate in our video montage of everyone singing his lullaby. Please see the James Weston lullaby post for more details. ❤️

Thursday, November 18th, 2021 Mom started off the day with having James lay on her bed so she could change the sheets in his bed. Don't mind the mess! This is a fold away twin bed on wheels and works much better than an air mattress. In the afternoon, Juju, Aunt Robin, Aunt Taylor, Champ, and Tommy came for a short visit from Jacksonville. This is the first time Aunt Taylor met James! Juju assisted Mom with James' bath that he surely needed after the hospital fiasco! Mom did a solo trach tie change again with no issues. 

Wednesday, November 17th, 2021 1:00am James fell asleep for the short car ride home. When we got home Mom carried James in his car seat with the ventilator over her shoulder. This was the first time she tried this, to avoid getting out the stroller. She walked quickly into the house so that she could reconnect him to the oxygen concentrator. Jess looked up an Uber back to the hospital to get her car. With James sitting in the car seat on the floor Mom switched James back to the home ventilator which involves some fast thinking and very loud alarms. Then she picked him up from the car seat to put him in his bed and noticed that the floor was all wet. His entire GJ button was completely out! Mom was staring at James' empty stoma. His stomach contents had poured out like a waterfall all over the car seat and floor. The balloon was popped and deflated. Mom grabbed the rubber catheter taped to the the side of the bed and stuck it in his stoma to prevent it from closing. It was hard to k...