The Journey of James Weston

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 ...

Monday, November 22nd, 2021 Our first appointment was at 9am but was an hour away, so we started packing up at 7:30am! There are only two pediatric ophthalmologists in the area both are about an hour away. James needs to get his eyes checked out due to his strabismus. For this appointment, Mom, Dad, and the nurse went along. Unfortunately when we arrived it was pouring right outside. This was the first time we have been in the situation and James got pretty soaked even with a blanket lying over him. There is no handicap parking so we tried to park in a spot and that was The consensus after our appointment was that James will need to wear an eye patch. The doctor could not determine which eye was leading. The result is James will wear an eye patch for 1 hour a day and switch eyes everyday for 6 weeks. Then we will come back for a follow-up. Mom ordered James both glasses that have a cover and sticky Band-Aids for the eye. We will need to distract him for the hour so he does not pull it ...