The Journey of James Weston

Wednesday, January 18th, 2023 We arrived in Orlando around 2pm. We got a late start because James needed an extra treatment this morning and spent some extra time on the ventilator. Dad also had some additional work calls. James got to meet his cousins from Levittown, PA who were in town celebrating cousin Levey's 3rd birthday at Disney World! 🎈 They rented an amazing AirBNB with 7 bedrooms! These were a lot of Mom's first cousins and 1st cousins once removed. James met cousins; Alec, Levey, Kali, Cailyn, Anna, Henry, and his Grand Godmother Aunt Lori. 😂 There was also another family with two little ones that James played with as well. Everyone stayed at the AirBNB for the day and took a break from the parks. 🎢  For clarification... When the cousins are not in the same generation then they are "removed." First cousins once removed" declares that either one of you is one generation away from being first cousins. For example, if your first cousin has children, t...

Tuesday, January 17th, 2023 Today Mom spent the day organizing supplies and packing for Orlando tomorrow. We are going to visit cousins that are in town from Philadelphia who are spending the week at Disney.  We almost missed another day without photos but Mom remembered while doing James' care. James was eye patching today. He actually does really well with it now and leaves it completely alone! He wore it for 2 hours before his bath. Mom noticed that his left eye which is normally his strong eye was wandering. You always want to patch the stronger eye, so that the weaker one can take focus. 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

Monday, January 16th, 2023 James slept in pretty late. Dad was finally able to pick up some prescriptions for Mom after a lot of help from our friend and pharmacist, Uncle DP. We tried to keep today a pretty lazy day with James just practicing his music. We cancelled PT for tomorrow. Mom had to follow up on James' prevacid order. She submitted it on Thursday by calling the Orlando compounding Pharmacy and submittting the refill through their automated system. Turns out that when she followed up that they had never received the order. We were pretty much out of the medication at this point. They were nice enough to next day the order and we would receive it tomorrow. Normally it takes a full day to make because it is compounded. So when ordered on a Thursday you would expect it to arrive on Monday. We are thankful that James is only on a few medications that need to be ordered. Even when we had nurses they weren't involved at all and reordering medications or letting mom know wh...

Sunday, January 15th, 2023 We've been working with James on learning new body parts. All we had to do was show James once and he added "Arms" to his vocab list. Mom ended up going to Urgent Care to see if she could get an antibiotic. She was there for hours even with an appointment and then spent the whole night dealing with insurance issues and pharmacy prescription transfers. Good news is that Mom was negative for COVID and the flu. There is no time to be sick when you are your son's nurse. Unfortunately the combination of 2 months of exhaustion plus the cruise; it had taken it's toll. Dad had James help him in the kitchen while James danced to Mary Poppins. Oh and there were more movies again! Transitioning from cruise life is hard. 😂  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

Saturday, January 14th, 2023 Today was a lazy Saturday. We watched a lot of movies! Like more than we should have but Mom wasn't feeling well. James had snuggles, tickles, and tummy time with Dad. Oh and there were giant grapes too. 🍇 Giant grape! 🍇 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, January 13th, 2023 It was a chill day. Mom took James upstairs to nap in our bedroom because we have blackout curtains. 😴 We wanted to continue the naps like we had on the ship. James then had a early dinner snack of  Avocado Smash. 🥑 It was a huge mess, but Mom just wanted James to get comfortable enough to feed himself, which he tried! In the evening Dad played the guitar for James and he was hitting every beat! 🎶 Video below. When both Mom and Dad are next to him, his new thing is to point to both of us. GIF below. 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