Day 334 - How Many Outfit Changes in One Day?

Monday, November 29th, 2021

We noticed that James has had more gas recently and had needed to be vented more. Maybe this is because he is on straight formula now? 🤷🏻‍♀️ If he isn't vented with a 60cc syringe enough OR if his Farrell bag is hung too high this will cause leakage from his stoma GTube site.

Today Mom put lights up on the outside window. We also got the lights on the tree. And everything is on a timer or Alexa! #winning

Dad played some guitar which James dances to in the video below. The other video is of James just being curious about his crib.

This was the first night in a while where James' bed and clothes needed to be changed in the middle of the night. Mom was up from 2:55am until 5:30am with James.

First he had a dirty diaper, then he didn't settle. Mom realized his G-tube had leaked all over the bed and his onesie was soaked up the back. Mom had to change his clothes but also put a blanket down on the wet bed because it's pretty hard to hold James in one hand and strip the crib. Not to mention keep the trach in and manage the 5 constant tangled cords (pulse ox, feeding tube, Farrell bag, circuit, and suction tubing). When all finished James had another dirty diaper! Mom then vented his G-tube with a syringe because there was a lot of air sitting in the Farrell bag tubing. 






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. ❤️

P.P.S. Thank you so much for the lullaby submissions so far! It's so exciting to have all of you be a part of something so special! 😭


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