The Journey of James Weston

Monday, July 4th, 2022    Today Mom setup the Pediatric FlowMeter with help from Facebook Trach Moms and YouTube. This showed us that James really only needs to be at .4 liters when he originally was at .6. Now we are on able to dial in to the 1/16th.  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, July 3rd, 2022 Mom managed to find some Meg Bloks on FB Marketplace yesterday, so today we washed and sterilized them all. Today we went to the MOSI museum James was able to see his first dinosaurs and experience a planetarium. This was Dad's first time in a planetarium too! The planetarium was kind of tricky cuz it was a small room with a lot of people and we had a long double stroller packed to the brim, but everyone gave us room and made it work. It started out pretty interesting but then James fell asleep as the room got darker and they showed us more and more stars with unpronounceable names. 😂 Although there wasn't a lot he could do, just being able to get out of the house and push James around a new environment is so good for him (and for Mom & Dad). MOSI used to have a deal with Bank of America that the first full weekend of the month would be free for Bank of America customers but it seems like they removed themselves from the list of museums last month. E...

Saturday, July 2nd, 2022 Dad watched James for the day while Mom got a break. He still had a little fever so we continued the medicine. 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, July 1st, 2022 We moved out physical therapy appointment from the morning to the afternoon because there was an opening. This will be great moving forward. We worked on standing today and enticed him with Mega Bloks (big Legos) that the PT brought. James absolutely loved them. We used his big comfy chair as something to climb as well as had him sit on a plastic container to get into a seated position to be able to get flat footed. James has not crawled yet because he hates being on his tummy. His GJ button not only leaks horribly but it sticks out way too far still. Even though we are skipping an important developmental stage all babies need to learn to stand by a certain age to form their hip bones. The long bone in the thigh has a smooth round end that attaches to the hip like a ball in a socket. Standing and taking weight through the feet help this joint to form normally. Children who do not spend enough time standing on their feet can develop hip problems as they grow older...

*Please note if you are reading this update in your email as a subscription to "The Journey of James Weston" blog it does not show the videos uploaded to YouTube. Please click here ( bit.ly/JamesWestonBlog ) to go to the blog directly. Thursday, June 30th, 2022 Today James is 18 months (14 ½ adjusted). It's crazy to think that a year ago we were leaving the NICU for good and moving to the PICU. That was such a hard transition and the longest 2 ½ months. In the afternoon, Dad gave James a guitar lesson. James is really improving. Video below. 😁 He also sported his bib as a visor and took a nap on Mom's bed. His new favorite toy is the pulse ox. He is determined to get it open and apart. Luckily this is even tricky for adults so we don't have to worry for a while. 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, June 29th, 2022 James   started doing something new, kinda like a Jazz move moving his body with his head up and down in a jerky motion. We think he is just figuring out all the ways he can move versus trying to tell us "Yes". He now repeats when Mom does this, so it has become a game. You may have noticed that in previous photos the sun has been in James' eyes in the morning. Well there is a half moon window above his crib in the living room and not only does it shine a bright light in the morning it also makes the room super hot. Mom installed a fabric shade that can easily be opened and shut when needed.  Today we finally had Physical Therapy after not having it for 2 weeks because of Covid and being out of town. We are focusing on increasing weight bearing in both his arms and feet. 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