The Journey of James Weston

Wednesday, November 30th, 2022 Unfortunately we didn't get a photo of James today! First Time this year! Last year around this time (Thanksgiving to be exact), we also didn't get a photo. Honestly it's just exhausting around this time of year! 😂😩🥱 Not much happened out of the ordinary today. It's pretty non-stop just with the normal things. Mom had an urgent fertility doctor's appointment so we rescheduled James' early intervention therapy to Friday.  James continues to sprint 5 hours 2x a day off the vent. This means he gets a 2 hour period back on the vent. Typically we are doing this between 2pm and 4pm.  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

Tuesday, November 29th, 2022 Today James had physical therapy in the morning. We are trying to get James to want to sit up or stand up while he is on the floor. It is hard to find the right motivation for him out of the crib. In the crib it's very simple he wants to pull down the contraption that holds the tablet. We've removed the tablet and he doesn't want that. He wants arm mount stand holder. James likes bending the arm and it's on a spring so it moves. He is very interested in how it all works. Looks like he's going to be an engineer. 😂 In the late afternoon, Mom sat James in his high chair to work on feeding. He had tastes of Juju's Thanksgiving leftovers specifically stuffing and sweet potato casserole. This was the first time that James was giving himself tastes by using his fingers. This was a huge step! James has really been moving along with his self-care development skills including brushing his hair, wiping his hands, assisting Mom with dressing, w...

Monday, November 28th, 2022 Mom and James spent the whole day together doing his physical therapy exercises, playing with toys, and Montessori-ly exploring the house. We had a phone call scheduled with his pulmonologist in the evening after he was done his rounds. The goal of this phone call was to speak to him about where James is at and to get clarification on the path ahead. Since we have not been able to schedule an appointment to meet with him and have been meeting with his nurse practitioner instead, we just wanted to get on the same page. The correct page! The conversation went great! Mom let him know that we were up to 5 hours twice a day off the vent this week (Mondays being our first day of the week)! He was really excited and wasn't upset at all that Mom decided to just do her own schedule. The pulmonologist trusts Mom because he knows that she has done a ton of research. As an example, very early on while we were still in the NICU and it was her first time meeting him, ...

Sunday, November 27th, 2022 Happy Birthday Great Aunt Kay! 🎉🎂🥳 Today we got back on the road, but got a super late start. We started off the day by Dad fixing Juju's grill. Who knew he could be so handy? 😆 Then Aunt Robin created some adorable little outfits with her cricut for two trach moms. One of them we were assigned to for Secret Santa and their precious girl has been in and out of the hospital. So we wanted to have something custom made "from the elves at Santa's workshop". Packing up is almost an all-day event. We not only have equipment to double check but since we have a supply stash in Jacksonville Mom needs to take inventory of how many supplies are left so we know what we need to bring next time and how much of it.  We decided to do James' bath and trach care before we left since we would be getting home so late. Last night we ended up skipping trach care because James was already asleep from the car ride back from St Augustine. That is definitely...

Saturday, November 26th, 2022 James spent the morning at on the patio with Dad while Mom ran errands at Target with Aunt Robin. In the evening, we all went down to St. Augustine to see the Christmas lights. "Nights of Lights" has been listed among the top ten holiday light displays in the world by National Geographic. We ate at Blackfly The Restaurant which is owed by one of Pop-pop's old friends. Highly Recommened! James was off the ventilator and did great. We did however forget to bring enough formula so we continued his feed with just water at the very end of the night.  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