The Journey of James Weston

Wednesday, September 7th, 2022 Tomorrow we are scheduled for another pulmonology appointment. But just to be sure we would see the Doctor, Mom called the office. Sure enough they said he would not be in and we would be scheduled with the Nurse Practitioner. We decided it would be best to just reschedule since we would really like to move James forward with trials off the ventilator. It would be great if everyone was on the same page, but that is not the case. It's a shame that Doctor's offices do this nowadays... They meet with you and then transition you to see an NP instead. We would like consistency. Considering this is one of the only Doctors we really like, we would love to actually meet with him. So we rescheduled for next week! But it's better than waiting another month! Our EI therapist came over and we discussed what some of the appropriate play would be at his age. So we are working on things like James acting out a nursery rhyme using his hands and playing consec...

Tuesday, September 6th, 2022 Today James had physical therapy. Our focus was to get James on his hands, bearing weight through his shoulders. However he wanted to show us how fast and far he could go. His preferred method of travel is to lay on his side and push on the ground with his feet. He can go pretty fast! While James took his morning nap Mom posted in several Facebook groups supplies for donation, because honestly it's taking up a lot of room. We have an excessive amount of suction catheters. At first we thought we would need these but we ended up not using open suction. Maybe once James has trials off the vent but we honestly have thousands and could donate several boxes. Mom reached out to local special needs daycares, charities, and hospice but either received no responses or they were not interested. You wouldn't think it would be hard to give away free medical supplies. 😵‍💫 There ended up being a few caregivers who were interested in a few boxes. So Mom shipped t...

Monday, September 5th, 2022 Nothing new really for today. James spent some time in his walker/bouncer. Mom raised the seat to Level 2 since at Level 1 he was almost kneeling. However Level 2 was too high and James could only tiptoe. After speaking with our physical therapist about it she said he would do better at a Level 1 so that he could work on pushing himself into standing position. He explored more of the kitchen. Mom tricked him by giving him a picture of a wooden spoon; not an actual wooden spoon. He was confused. 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

Sunday, September 4th, 2022 Mom and James read lots of books and worked on scooting onto hands and knees. Once Dad got home from being out at sea, James was invited to join the the boys for sushi. We quickly gave him a bath 🧼 and did his trach care because we knew it would be a late night and his schedule would be off. James gave us all sorts of faces during his bath. 🫧 🛁 We brought his chair to the restaurant that connects to the end of the table. When Mom picked him up out of the car seat to transfer him to the chair he started crying. Just like at Friday's helmet appointment (well not totally, this was short lived) and we did not understand where this was coming from. Mom tried to console him and eventually he trusted us that he we weren't going to do any scans at the restaurant.  All James wanted was for his favorite waitress to say hello, but she was very busy. When we were leaving she gave James some attention and he immediately lit up.  Dad creeping with his camera f...

Saturday, September 3rd, 2022 Today was the start of Uncle Patrick's bachelor weekend for Dad. In the evening he stopped home between festivities to change and play James a song on the guitar. Mom and James took a ton of photos today. James is in need of another haircut! 💇🏻‍♂️ It's been 2 months! A new random house hold item became a new toy, a bungee cord, which is what we use to hold the cot together during the day. James thought it was fascinating that there were hooks on the ends. [Video] Just woke up from a nap! 💁‍♂️ Watch the video to see what this is about! James yawning 🥱 Playing with a bungee cord  He got it unhooked! Gym class! Mom tangled it around his foot to see if he could figure it out! Matter of seconds! Model Baby What James thinks about Ohio State Always goofy after bath Most active at night! View from his crib Selfies with Mom James making trach care difficult for Mom to do solo! (He needs to remove his bean bag that he is holding over his trach) P.S. You...