The Journey of James Weston

Tuesday, August 23rd, 2022 James had physical therapy in the morning and today we focused mainly on him sitting up by himself and crossbody weight bearing through his arms. Currently when James tries to get up he would prefer to use his stomach muscles over his arms which really isn't going to work. He needs to learn to roll to his side and to use both arms to get up, instead he only wants to use one arm while keeping his other arm out. Then he typically gets frustrated lays back down and slams his legs on the ground. When he does do it successfully (with the help of someone giving him a hand) he immediately gives himself a clap 👏 and looks around for recognition. It's so cute! In the last GIF you'll see that he uses the crib railings as monkey bars, moving around quickly. In the first video, James is up close and personal eventually taking the phone from Mom and playing with the popsocket which is his favorite. The second video is James signing for "more" banana...

Monday, August 22nd, 2022 Early this morning was out long awaited genetics appointment. We scheduled this appointment in January and August was the first available. This appointment was one of nine that was a required follow-up after we were discharged.  Mom met with the Doctor of Genetics back on April 22nd, 2021. James was just past his full term due date (April 8th) and was in the NICU having BPD episodes frequently. We'll post a comparison photo below. He looks like a completely different baby.  So we knew going into the appointment that is would be kinda pointless for us, meaning there wasn't going to be any testing or any new answers for us. We had whole exome sequencing testing done back in the NICU and the results were negative. This means that Mom and Dad does NOT have recessive genes for osteogenesis imperfecta. However James carries a part of a recessive gene on his 4th chromosome for osteogenesis imperfecta Type II. This genetics team is trying to get done to the b...

Sunday, August 21st, 2022 Today Dad watched James as Mom was able to catch up on the cleaning, dishes, and laundry. Mom caught a photo of them napping. It took James a little while to get to sleep but he didn't have a choice because Dad wasn't letting go. 😂 Once he woke up Mom was back on duty and grabbed a quick selfie before moving James off the bed. Dad caught dinner with a friend in town and then we did a late bath night and trach care during a crazy thunderstorm. ⛈️ We are trying to stay on schedule as much as possible! Tomorrow we have a follow-up genetics appointment that we scheduled 6 months ago.  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, August 20th, 2022 James' hair is getting long again. We have a hair routine down for his voluminous curls! ➰ Mom is currently researching on how to cut your own toddler's hair at home. We shall see! Today he went for the James Dean look. 😎 While Dad had another busy day on back to back calls, James played on the floor as Mom prepared dinner. 🍽️ James was focused on exploring the supply closet and then played Peek-A-Boo with Mom around our new Berkey. 🫣 James' Selfies 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, August 19th, 2022 Today we focused a lot on books! 📚 James has been more and more interested lately. The popular books right now are ones with photos of babies, different textures to touch, or his favorite is the Peek-A-Boo book series where we can use his finger to play hide and seek with things on the pages. This one is great for fine motor skills.  In the afternoon, James had his first early invention session with our new therapist. She spent the time asking Mom questions to get a good feel for what James can do and what we are working on. James was a show off. The entire hour he was talking, showing her how he plays, and looking for responses from us. It was adorable and very age appropriate! It is very exciting to have therapy 3x a week and moving forward we abve her coming on Wednesdays. So Tues, Wed, Thurs James will have therapys in the home! After trach care Mom was settling James down and played his James Weston Lullaby which is on his giraffe 🦒. When it finishe...

Thursday, August 18th, 2022 Mom worked out James pretty hard in the morning so in the afternoon James was napping when PT was supposed to start. He ended up waking once he heard our voices talking. Our physical therapist was very impressed at how well James was doing with standing up and wanting to pull himself up.  Mom also got a call from another therapist who would be joining our Early Steps team. She will be coming by tomorrow just to get a feel for how James is doing. She falls under Early Intervention through Early Steps and would come once a week. The focus would be on communication skills (signing, babbling and working with our speech therapist), social/emotional skills (playing and interacting), fine motor skills (picking up small objects, drawing, holding a spoon). This way our physical therapist who comes twice a week can focus on gross motor skills (crawling walking, independently sitting, standing). James twisted himself up in his circuit. 😲 P.S. You can email James y...