The Journey of James Weston

Sunday, July 10th, 2022 James helped Mom separate the pink saline bullets we use for suctioning (with a little bit of a start). Then he played with the empty box. Mom threw in a couple of different shapes to the empty box. James tried to figure out how to get them in and out. Video below. Outfit change due to his G-tube leaking. James taking a nap on his own after playing. 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, July 9th, 2022 Last night Dad slept downstairs and he did his care in morning. Morning care for James (right now) consists of the following: Suctioning his trach because morning secretions are the thickest Changing his diaper because he's a baby Switching his pulse ox to his other foot to avoid burns Venting his G-tube with a 60cc syringe to release air Wiping and cleaning his helmet and his head Adding water to the humidification chamber Giving him his nebulizer treatment (Pulmicort) Giving him his Prevacid and clamping his G-tube for 45 minutes *Extra Bonus Points for eye patching too Sometimes you'll be venting his G-tube and then need to suction him, and then go back to venting, and then back to suctioning. Sometimes you are unable to stop venting and you'll need to do both at the same time. You just figure out how to do it OR you lay the syringe full of gastric juice on the bed and worry about changing the sheets later and immediately suction him because his ...

Friday, July 8th, 2022 Today Mom found mold upstairs right near our leaky A/C! 🦠 Consequently James wasn't feeling well and held Mom's hand while she vented his G-tube. 🤗 James continues to rip off his pulse ox. Then Dad danced for James and made him crack up laughing. 🤣 Lastly, James prayed. 🙏🏻 😇 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

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) ...