The Journey of James Weston

Friday, May 20th, 2022 We are currently working on a schedule to incorporate more food tastes and Passy Muir valve trials. Trying to do purees tastes on a bath day because it's a mess! Moving James into the kitchen even though it's only a few feet away isn't the easiest maneuver. Everything on the cart is plugged into the power supply strip, so we only have to replug that cord into the new outlet. Everything has an internal backup battery except for the humidification chamber. So when the cart is not plugged in his circuit is not heated, which could lead to mucus plugs. This week we've found he loves lemon but doesn't like the taste of banana or almond milk.  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, May 19th, 2022 Not baby bottles! James loves water bottles and plastic bottles! He is still teething even with 8 teeth in the front. James has 4 on the top and 4 on the bottom! 🦷 He loves using them as teethers! Mom had the chance to speak with the Director of the Children's National Hospital to answer their questions regarding caring for a trach baby at home. Pretty neat opportunity to provide feedback and give suggestions on developing new prototypes that would be helpful in the future! 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...

Wednesday, May 18th, 2022 James found his exhalation valve to be most interesting! Probably because it leaks water. Side Note - In an attempt to save some money on this additional part we need for his nebulizer Mom got scammed from buying from a shady website. The good news is after some back and forth with PayPal we were reimbursed. But the stress and time spent was really unfortunate. Especially the fact that this is still an active website listing discounted items and more people will get scammed. How it works is that you checkout on their website paying through PayPal (but as a guest 🚩) and they send you a tracking number saying the item has been delivered but it hasn't (only the city and state is listed, not your address 🚩). The weight on the package makes absolutely no sense 🚩, 29lbs for a small cable. 🤷🏻‍♀️ Mom found on reddit that this was a common scam. After calling UPS they verified that the package was not shipped to our home address; they couldn't disclose the...

Tuesday, May 17th, 2022 Video: James keeps his balance with the octopus on his head. This stuff animal from the NICU is now becoming one of his favorites! He's had this the longest, since his first day in the incubator. 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...

Monday, May 16th, 2022 *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. This helmet is really helping James sleep on his sides which is so good for his torticollis! Mom reached out to multiple Facebook groups today asking for anyone who has a specific G-tube extension (Ref 6-1222). The DME is claiming they are on backorder because we haven't received any since January. We were used to getting 4/month. This is why it's so important to be frugal with supplies, just in case of a supply chain issue or an apocalypse.  James loves practicing on his ukulele. It's amazing to see him learn just from watching Dad. They are always watching and taking it all in! Video below. Sweet Baby James napping. P.S. Do you follow James' journey? James would love to read an email from you. His email ...

*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. Sunday, May 15th, 2022 James is getting so big! Every day we notice him growing. This collared shirt outfit is so adorable and makes some look so grown up! Thanks Natalie! We've had to put additional foam patches into the front and the back of the helmet to help prevent the helmet from sliding off. James found that if he scoots on his back he can use the arm of the chair to pop it off the top. He has found a way to get the helmet off! 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...

*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, May 14th, 2022 Today Dad hosted another non-profit event, PB&J for Tampa Bay and on his way home he stopped at Goodwill. We checked out a few last weekend but didn't have any luck finding anything. Well this time he really lucked out! Of course as soon as these new toys came home Mom performed surgery on them thoroughly cleaning them with alcohol and changing out dead batteries. Check out our finds below! 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...