The Journey of James Weston

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...

Saturday, April 30th, 2022 Dad had James on floor doing his exercises. He has mastered how to roll onto his back. Now we just need him to figure out how to roll onto his tummy. Between his GJ button painfully sticking out and getting caught up in the tricky circuit, it isn't easy! 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, April 29th, 2022 Physical Therapy is always Friday morning at 8am. James is not really a morning person, so PT is always a little slower on Fridays. He is learning how to scoot. We need to get James more mobile. In the afternoon, Mom finished up moving Dad out of his office. Moving is exhausting, so for an early Mother's Day Dad sent Mom to a hotel for two nights by herself. This was the best gift ever! James will have a boys weekend with Dad. Of course Mom will come back for trach care. 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...