The Journey of James Weston

Wednesday, March 9th, 2022 The photo of James sleeping is how he positions himself. He is always trying to put a pillow or blanket over his eyes when he's sleeping. Today we had physical therapy in the afternoon and Mom let her know that we let nursing go. She thought it was a great idea and that Mom would be able to bond more with James. This is true. We had our 6 month evaluation where James was basically tested on the original goals to see what was met so far. This one was done by our PT who is a 3rd party however in a few weeks we would have another one done by Early Steps directly but over the phone. Leave it to a government program to add unnecessary steps! We took another video of James doing a Passy Muir Trial right before bed. He was tired but also really likes hearing himself so he had to concentratea really hard!  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 re...

Tuesday, March 8th, 2022 Our Medicaid Case Manager stopped by for her monthly visit. Mom had left her two messages over the course of the last month and never got a return phone call. Her response was that she thought she would just address it at our next meeting. Except the reason mom was calling was because of time sensitive insurance issues that she addressed on her voicemails. In the end she was unable to help us with any claims or authorizations so unsure of the point of having an insurance case manager. Mom let her know that the plan was to get rid of Nursing completely. At that point she informed Mom that she would no longer be able to be working on our case because she was a clinical nurse manager that only handled Medicaid cases with nursing. Oh no it's going to be such a loss. 😄Super nice, just pointless. After she left Mom called the staffing agency to let them know that she would like to cancel all nursing effective immediately. It worked out that our Tuesday nurse had...

Monday, March 7th, 2022 Our nurse worked today and it was awkward. After how she acted Friday we figured it just wouldn't be the same, and it wasn't. Mom had a Doctor's appointment early in the morning, and as she left Dad and the nurse were discussing eye patching as well as getting James on a schedule. More to come on that later... In the afternoon, James had a visit from the Clinical Nurse Supervisor who only told the nurse she was coming and never contacted Mom. She is supposed to come once a month, but due to the shortage of staff comes every 2 months. Mainly just a lot of administrative duties that is required by the staffing agency, like documenting any changes and updates to James' medications and orders. During this meeting Mom received a text from the staffing agency that our Tuesday nurse would be not be returning effective immediately. This was actually great news since Mom wanted to let her go anyways. Supposedly she just didn't like the schedule and wo...

Sunday, March 6th, 2022 Check out the video below. James make the sweetest sound and doesn't cry a tear! He is getting the hang of the passy muir valve! 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, March 5th, 2022 James had some Daddy time in the morning. He is learning how to turn the pages! We did another Passy Muir Valve trial in the evening but James continued to cry and cough for the whole 3 minutes, so we decided not to post that video. We also watched Cruella on the wall projector 📽️. Then James was fast asleep like an angel! 😇 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, March 4th, 2022 We started off the morning with physical therapy at 8am, when that was over Mom started getting James down for his morning nap. Mom looked at the online portal and saw the results had come in for the bloodwork. James numbers all looked great, all within range, even on the higher end. Mom let the nurse know the numbers looked great and that we would be hearing from the Doctor soon. Mom reminded the nurse not to give him the Sodium Chloride, but then out of nowhere the nurse blew a gasket! 😤 She just went off about how she was going to give him the med because there was not an order to "discontinue". There may be a language barrier here because Mom already explained that "holding" is "refraining from" for a period of time and that we would hear from the Doctor on whether or not we would start again. She did not understand the order and instead got really rude with Mom repeatedly saying her name in a condescending tone. Mom let her kn...