The Journey of James Weston

Monday, January 31st, 2022 In the morning, we went to James' Helmet Appointment where he was evaluated for a helmet to help with his flat spot, which is called plagiocephaly. They did a 3D scan and determined that he was definitely a candidate for it but we are coming in on the late side. Honestly it's such a shame that we are just getting started with this now. His flat spot started after he got his tracheostomy at 3 months; however, he was not stable in the NICU and was having several BPD episodes every day. At 6 months, James could have received a helmet in the PICU because he was stable and not having BPD episodes. Several babies get their helmet before they even get discharged. Even after discharge the pediatrician never brought up the possibility of getting a helmet. After 8½ months in the hospital it should be a standard suggestion knowing that almost all babies will have a flat spot. This should not fall on the parents to have to research and bring these things up! So t...

Sunday, January 30th, 2022 First thing's first, forgot to update on Friday our pediatrician called to let us know that we could wean James' sodium chloride. She discussed with the endocrinologist and because of his labs they made the decision to wean from 4ml 2x/day to 2ml 2x/day. He was within range but on the high end. They would like us to repeat labs and 7 to 10 days. 💉 This is great news! 📰 We called the Aquarium and found out that it's only the 1st Sunday of the month! So we decided to go to the Lowry Park Zoo instead. Once you pay you're allowed to go the rest of the year for free, so Dad's plan is to do this every weekend. 😂 Mom made strawberry and banana pancakes 🥞 and sausage for breakfast while Dad did some morning eye patch and bouncer time with James. Grandpa Don also had a morning Facetime with James. 🤳  Side note: James had recently been pulling at his GTube. He is super fast and strong. We have to keep our eye on him 24/7. The other night he tr...

Saturday, January 29th, 2022 Nurse worked today for a few hours, because she wanted an extra shift. Dad had his end of the year awards ceremony over Zoom. You can check out the part when they talked about James and our journey here ➡️  Dad's Cutco Awards Ceremony In the afternoon, James watched the penguin 🐧 movie Happy Feet while Dad held him. Mom worked on her emergency travel spreadsheet for medical supplies. After some research Mom found that if you are a Bank of America card holder you get to go to the Florida Aquarium 🐳🐠🦈 🐋🐟 for free on Sundays (well that's according to the BOA website). But on Facebook most people were saying it's really only the first Sunday of the month. I guess we'll see! So tomorrow we decided that we would have James' first really outing.  In the evening James took a late nap in Mom's arms. Dad teaching James to wave. James loves tags. P.S. Do you follow James' journey? James would love to read an email from you. His email ...

Friday, January 28th, 2022 We have now switched over from Cocomelon to Songs for Littles. Trying to limit screentime overall but sometimes it's necessary when we are needing him to stay still while he's being vented. Several Moms have said that their toddler's speech increased from watching Songs for Littles with Miss Rachel. She is a music education school teacher and her husband is the musical director for Aladdin on Broadway so it's pretty well done. There is a photo of James sitting up and leaning on his leg using his hand. This is a first! P.S. Do you follow James' journey? James would love to read an email from you. His email is JamesWestonAbramowitz@gmail.com. How heartwarming for him to receive these and fun for you to get a response from him in like 10 years...