The Journey of James Weston

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...

Friday, May 13th, 2022 Today for physical therapy we focused on fine motor skills, specifically the pincher grasp. This skill usually develops in babies around 9 to 10 months old. The pincer grasp is an important fine-motor milestone. Children use their pincer grasp to pick things up and feed themselves, and it lays the foundation for a good pencil grip when they start school. We tried with breaking up pieces of cereal in a bowl. Sometimes James would use three fingers and sometimes his whole hand. One of the suggestions was to get an ice cube tray which would only allow him to put in two fingers at a time. In the late morning we had a follow-up helmet appointment. This time they did a 4D scan and showed us the difference since he started. It was minimal, which can only be expected with not being able to follow the wearing schedule due to the rubbing. However this helmet has enabled James to roll more easily. He takes naps or sleeps on both sides now which helps his torticollis! The pl...

Thursday, May 12th, 2022 Today we had a new trach mom stop by so she could see our setup, meet face-to-face finally, and see how well James is doing. Her baby was transferred from the local hospital here to out of state. The great news is she is thriving at that hospital and it's only a matter of time before she is discharged.  In the afternoon Jamie and Baby Makenna stopped by! This was the first real interaction where James was able to sit down next to a baby and play. It was absolutely adorable and needs to happen more often! Jamie was nice enough to bring over some much needed formula since there is a shortage in case anyone has not turned on a tv lately.  Although James is technically 16 months, he is only 13½ months adjusted. Being a micro preemie he will always be on the smaller side, at least for the first few years. Developmentally we are around 8 months old, because remember for the first 9 months he was sedated and bed bound. So if you take the 16 months actual and ...