The Journey of James Weston

Friday, May 6th, 2022 Spending more time on the floor and out of bed, dumping out his toys. James took a look at the bills. He couldn't believe the co-pays. James also enjoyed tickles before bath time and wanted to make we got his clapping on video. We finally received our Aerogen Nebulizer which we paid out of pocket for. 💲🧾💰 It turns out it didn't come with one of the major cables. It was advertised incorrectly! So we are on a hunt for this now. By the time we get this working James will be decannulated! 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...

Thursday, May 5th, 2022 Believe it or not, James put the guitar in this position (it's actually a ukulele). He is practicing to be like Dad, playing music and reading books. 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 4th, 2022 May the Fourth Be With You! James revisited with a couple of old friends, Teddy and his NICU Octopus. The key is to hide some toys and then after a few months it's the best toy ever again! Update: Still have a broken backup ventilator. Still waiting on a portable working suction machine. We haven't received G-tube extensions or Farrell bags since January. Supposedly G-tube is on back order and the bags are not getting approved by insurance. Insurance is supposedly given our DME a hard time about approving his new formula. These are all issues that we have to deal with our DME to get fixed. When we contact our Medicaid Case Manager she just says everything should be approved. And with past experiences, issues always fall to our DME.  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...

Tuesday, May 3rd, 2022 Today Huggies gave James a shout-out on social media because Dad tagged him in a photo with some brands names. See post 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...

Monday, May 2nd, 2022 James played a lot with his toys. Mom worked on insurance issues, supply orders, and doctor appointments. You know besides laundry, meds, bottles, dishes, feedings, G-tube venting, the usual. If you find yourself with nothing to do, then you're forgetting to do something. Over the weekend James' suction machine died. This is an emergency, and can be a life or death situation. A patient can get a mucus plug or choke on their secretions. Without a working suction machine, you would need to disconnect the patient from the ventilator and use a catheter to suck out any secretions with your mouth. It is awful but in an emergency you will do what you need to do. It turns out the DME supply company does not have any portable back-ups. Not surprising whatsoever! They do have a non portable suction machine, the size of a car engine and sounds like a lawn mower. They said they could send someone from Melbourne by this evening to drop it off. Well the delivery driver ...

Sunday, May 1st, 2022 In the morning James did some yoga and got in a workout with Dad. Video 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...