The Journey of James Weston

Friday, December 2nd, 2022 Dad flew out in the early morning for a Dad Conference. It's called Front Row Dad's and it is for Family Men With Businesses, Not Businessmen With Families . He would be gone for a few days so Mom and James had the weekend. The goal was to see Santa tomorrow at the hospital and see if Mom can do 2 baths by herself. Our respiratory DME supplies arrived. What's crazy is that we used to receive these on the 12th every month! But over the course of the last year they have been pushed back and back and back and at this point we've definitely lost a month of supplies. It takes a little while to put away all of the supplies, restock things, and always contact the DME afterwards letting them know what supplies were missed. In this particular order we did not receive our double swivels. This allows James to move around when he is on the vent. The good news is that he's not on the vent very much at all during the day anymore.  Mom took James to chec...

Thursday, December 1st, 2022 Physical Therapy was in the morning today. She informed Mom that we needed to give James strict rules allowing him to scoot around on his back but only after he completed some PT exercises first. So the idea is is that we tell him FIRST he needs to do this, and THEN he can "explore". Right now James does not understand and just cries when he is not able to scoot around on his back immediately when he is on the floor. Mom is not sure that this is going to help him make any progress, but we'll follow the direction of the therapist. James really loves pulling the tablet down, but what is funny is that as soon as he pulls it down he tries to put it back up.  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

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...