The Journey of James Weston

Sunday, June 12th, 2022 James spent the afternoon with Dad while Mom got out of the house for a few hours. We finally received our feeding pump cover from Etsy which allowed us to hang James' feed for 8 hours overnight. The bag has two pockets for ice packs which keeps his formula cold all night. By the time the feed runs down the 20ml tubing the formula isn't that cold going into him. It's also running really slow at only 32ml/hr. James is till waking in the middle of the night between 1am-3am and needs to be suctioned, or lost his pacifier, or just doesn't want to be covered with a blanket anymore. So we're still getting up most nights to assess him and make sure he is okay. No alarms are going off when he is agitated,we just have to listen for an increase in respiratory rate which we can hear because the LTV allows us to hear each breath. 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. ...

*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. Saturday, June 11th, 2022 Family day started out with us on our way to the Zoo even though it looked like rain. Dad thought that we could make it into the park fast enough to the indoor air conditioned manatee exhibit. Once we pulled into the parking lot, we watched groups of people leaving. Dad got the stroller out and then the thunder rolled in. Mom thought it wouldn't be worth it to be stuck in a torrential downpour and have James' ventilator die on us. So we headed to the International Mall again instead. There is so much to see, it's like Disney World for James. 😉 We browsed Nordstrom's for some reasonable priced grey shorts for James. 🤣 Then we grabbed an early dinner at the Grand Opening of a Greek Restaurant inside the...

Friday, June 10th, 2022 James has a new favorite expression. He sticks his tongue over his top lip. Sometimes it's when he is about to laugh and other times he's just really focusing on something. After our morning physical therapy, Mom made banana bread for the first time because we had a few overly ripened bananas🍌. Unfortunately the calorie count per slice did Dad in for the day. 🫢 Today we started James on his new G-tube formula called Pediatric Compleat. It only took several months for us to get this from our supplier. We ended up just switching James cold turkey from Baby formula because my GI Doctor did not give us any instruction to do things differently. He seemed to tolerate it well! 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, June 9th, 2022 The day started with our new aerogen nebulizer not working properly. It wasn't clearing out after the treatment. Mom wanted to reach out to the Trach FB Group but FB would not let her post, so fortunately other Trach Mom she is friends with posted on her behalf to get answers. It turns out that sometimes you just need to run a saline treatment after the meds to clear it out. Simple fix! We've been using this nebulizer for the past 5 days and it has been worth every out of pocket penny. At first we purchased what we thought would have been the complete Aerogen Pro Nebulizer from a medical equipment website on April 20th who sells refurbished items. Once received we realized it was missing the control cable. They apologized for false advertising and offered a refund, but we were on a mission to find this control cable. Mom found it on one website that ended up being a scam (they don't actually carry anything, fake website to just take your money); Pay...

Wednesday, June 8th, 2022 You may or may not have noticed that the numbered day had recently changed. Well that's because one day we accidentally added 10 to the number. Mom had to go back through each post to figure out where it started. Only had to renumber a few months. 🤦🏻‍♀️ Today James had physical therapy where we focused on strengthening the muscles in his neck. Due to the torticollis James prefers leaning to one side over the other. One exercise we do is to have him sit on a bouncy ball and lean him side to side, allowing him to bring himself back to center. He does fine to his left but has a hard time coming back into center when leaning to his right. Another exercise is having James lay on your thighs went they are bent and by grabbing his wrists pulling him up straight. He is supposed to use his neck muscles for this as well. It's really important that when pulling him up that his wrists are turned out to activate his biceps, and so his shoulders don't dislocat...

Tuesday, June 7th, 2022 The morning started with changing James' outfit and the sheets. Unfortunately the overnight diapers, even with changing it in the middle of the night at 3am isn't making it through to the morning. Little boys find a way to get pee everywhere but in the diaper. Then James enjoyed some time in the ball pit! He is still tolerating his new vent settings! 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