The Journey of James Weston

Tuesday, November 30th, 2021 New nurse today! A Leo 🦁! She will just be working Tuesdays. She jumped right in, actually taught Mom something about the feeding pump and was very interactive with James. It's still a very exhausting day for Mom because she has to get her up to speed and train the new nurse on everything... medication, med scheduling, feeding, and feeding scheduling, suctioning, the ventilator, and James' medical history (😂 this takes a while)! With this nurse only working 1 day a week it may take a few weeks to get comfortable. However she is great so far!  James had another night of outfit changes and wet sheets! At 4:30am he had a dirty diaper, then 2 wet diapers (all over the bed and his outfit), then a 4th dirty diaper again. 4 diapers between 4:30am and 6:00am. So Mom changed the bed sheets and his onesie and then vented him with a syringe since his Farrell bag was full sitting at 100ml! It was hung way to low. Should be more like 35ml.

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 i...

Do you want to help us in making an amazing memory for James?! We had this lullaby written for Baby James with the help of a very talented artist. We are looking to create a beautiful montage of James' friends, family, and followers singing his sweet lullaby. This is open to anyone who wants to participate, the more the merrier! 😁 ❤️ *What to do & How to do it* Video 🤳🏻 yourself singing parts or the whole thing, by yourself or with others, whether you can't sing or you're a world renowned acapella singer... 🎙️ We will be putting together a video montage of everyone's recordings! James wants to see you! You can email your video to JamesWestonAbramowitz@gmail.com. Please submit these by the end of August. 🥰 For files that are too large to email you can use Dropbox or Google drive. If you have any questions or need any help, you can also contact Mom and Dad through that same email. 📧 If you're still unsure what we're trying to accomplish, here is an examp...

Sunday, November 28th, 2021 James got in his exercise today with tummy time and floor stretches. It was also a way for Mom to change the sheets in his crib! Dad & Mom put up the mini Christmas Tree 🎄 since the one we put up last year was about 8 feet tall and the only place it fits is where James is currently set-up in the living room. It's beginning to look a lot like Christmas! And Hanukkah! (once we find our menorah...) 

Saturday, November 27th, 2021 Happy Birthday to Great Aunt Kay! 🎈🥳🎂 Today we started talking about decorating for Christmas 🎄/Hanukkah 🕎. 😂 Maybe tomorrow... James is becoming more and more active. He likes to bang his toys. He is definitely getting better with his fine motor skills. James is starting to pinch, such a fun stage. He always wants to know what is going on. If you're near him doing something, you have his attention. We try to make sure he is doing his PT exercises daily. In the early evening, we started with the Christmas movies! We will have James watch all the classics. We watched National Lampoon's Christmas Vacation. After James went to sleep, Mom and Dad drew up his meds for the week.

Friday, November 26th, 2021 We tried to get James to wear his eye patch glasses. They suggested putting them on him when he is asleep so when he wakes up he just keeps his eye closed. Well that doesn't work! He still had his eye open under the patch looking around, which defeated the purpose. We will have to wait until the bandaids comes get delivered from Amazon to see if that will work. Our nurse left early today because she was bored. Tomorrow we have a Nurse Interview with someone interested in working Day Shift on Tuesdays. We will see! --- Mom had the day off today (Friday, because every store was closed on Thanksgiving) to go buy all the parts to make James another 3 tiered cart. That involved trips to Ikea for the cart, Lowe's for the surge protector power strip, and an Amazon purchase for the heavy duty wheels. We already have a few of the ginormous zip ties used in attic duct installation, because of work that we did on our home in Clearwater. This is so James will b...

Thursday, November 25th, 2021 Mom held James as he slept through "The Guilty". We ended up watching three movies today on our wall projector. We did not have a Thanksgiving feast but managed to eat some leftover pumpkin pie from Dad's potluck the other night. Mom did take a picture of James watching but it was too dark and she deleted it. 😭😭😭 Today is the first day we do not have a photo of James! 😞

Wednesday, November 24th, 2021 In the morning, James was sportin' a Buc-ee onesie with a cute button down waffle sweater with ears. James was not fond of a hooded sweater. It was so cold today so we needed to bundle him up. We worked on another slow cooker recipe for pulled pork that turned out great. James took a nap with his bean bag on his face. That is his new thing. Some people like weighted blankets.. James like weighted face masks. #ThingsOnlyATrachBabyCanDo In the evening, James got a bath and into his comfy Burt's Bees Thanksgiving Pajamas. We think "Off-White/Cream" is his color! James must be a "Spring". 😆 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. ❤️

Tuesday, November 23rd, 2021 James played on his piano while Mom held him sitting up. He loved it! Much better than kicking at the piano while lying down. James heard his first Christmas and Hanukkah songs. Mom styled James' hair because it's getting so long (in the front). Some he was not a fan of. 😂 Trying to get compounding prescriptions filled... Mom went to the local Publix pharmacy early in the morning. She let the pharmacist know the situation and that they were supposed to call the Publix pharmacy located inside the hospital for direction. They were very nice but very confused as to why this is being handled like this. After a bunch of back and forth conversations between Mom, the local Publix pharmacist, and the pharmacist at the hospital they came to resolution. The local Publix pharmacist would enter in the prescription information and put the order on "pause". 🤷🏻‍♀️ The hospital Publix pharmacy would contact the Orlando compounding pharmacy to place an ...