The Journey of James Weston

Thursday, July 7th, 2022 James had a helmet appointment in the morning. At this appointment it was time to do another head scan. Although we don't have any photos of the scan or print outs like other offices typically give she did bring both mom and dad back one at a time to look at the images on her computer. She told us random numbers like "95" and "improved from a 12 to an 8.5". So what we can tell you is that James' head shape is still improving although his fontanelle (soft spot) at the top has now closed. This is expected around 18 months of age, and around 2 years old his head should reach about 90% of its adult size. These are the numbers we were told: CR: 95 CVAI: 8.5  [See Image Below] Cephalic ratio is used more so for brachycephaly and involves higher numbers between 75-105. Cranial vault asymmetry (and CVAI) is used more for plagiocephaly and involves lower numbers, between 0 and 20 usually. 8.5 is the degree of severity of plagiocephaly (CVAI) ...

Wednesday, July 6th, 2022 James played with some new things today... A paper box, a plastic container, a woven bin, an organizer tray, and a lid to a box! 🎁📦 He is very curious, always trying to figure out what it can do, and checking out every surface. He definitely turned around on his own, using his legs to scoot to a 180°. Mom made Keto Calzones and was able to make dinner every night this week so far. We posted a video of James in the evening before trach care of him throwing his legs and showing us how strong he is. 🦵 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, July 5th, 2022 James had two firsts today! In the morning, Mom noticed that James had redness in front of his ears, no fever, and only on one side. Aunt Robin Googled that this was more teeth coming in for James! 🦷 He was very irritable. He played with his Mega Bloks and more importantly his new favorite plastic box. See Video below. 😂 In the evening, we put James in the high chair, deflated his cuff, and gave him his first tastes of carrots. 🥕 We are still trying Gerber 1st Stages so it's a little thinner. He absolutely loved it. See video below.  Unfortunately when doing his nightly care we found that his G-tube stoma was leaking. The gauze was completely orange with carrots. This just proves that James needs a smaller GJ button. It is not supposed to be leaking this much! 😢 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

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...