The Journey of James Weston

Tuesday, July 12th, 2022 Today James had his 18-month follow-up appointment. We were expecting James to have a few vaccines but luckily he did not have to have any. Of course our pediatrician's office is still heavily trying to push for the flu shot, and this time trying to push for the covid vaccine on an 18 month old. Nope! Anywho, our pediatric appointments always take the longest. Between going over every single update on medications, update on other specialists we are seeing, update on all appointments that are scheduled over the next few months, update on his development. One of the things that takes the longest is having two different people ask the same set of questions regarding his development. Questions regarding how he plays and how he responds as an 18 month old that is 14½ months adjusted. We spoke with a nurse, a developmental specialist, a social worker, a care coordinator, a doctor (and the doctor was also having a resident shadow her).  Overall it was a good appoi...

Monday, July 11th, 2022 We had a 3rd A/C guy this morning who found the crack where the water leak is coming from. He said he wouldn't get the part he needs until later in the week. Then the landlord came by with a Shop-Vac and some towels to soak up what they could. What a mess! James was very curious who was all here and what they were doing. 🤔👨‍🔧 We got a response from our GI doctor that they will not switch his GJ button unless it pops so now we will be looking for a new GI doctor. Mom contacted our Pediatrician and told them that we're looking for a new GI doctor and they said they would have referrals for us for tomorrow at his 18 month check-up appointment. Mom setup new games for James using a sock organizer and scarfs (men's pocket squares). You able to keep things new and interesting with what Dad calls a "baby toddler". While Mom stepped out for the dentist, Dad watched James choose to play with his storage box over his Legos.  In the evening we gave...

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 ...