The Journey of James Weston

Tuesday, March 14th, 2023 We had PT in the morning and James was taking off the vent to be put on his HME. He did well with it. His therapist brought these little suction cups that we were using as incentives for James to reach. He scooted around on the floor and was just moving things out of his way. He moved the trash can, the oxygen concentrator, the laundry basket, the diaper pail, and even an oxygen tank (yes, we're watching him)! James moved these things out of his way because he realized that he could get to the window ledge. Mom raised up the blinds, so he could see outside. We put the suction cups on the window and got him to stand up a few times to reach them. As soon as he realizes the game, that we are just trying to get him to stand up he will become uninterested in whatever it is you have in front of him. While we were in PT James received a package from Juju! It was for St Patrick's Day! Two new books, several adorable outfits, and a night eyebmask to replace the...

Monday, March 13th, 2023   In the morning, our Early Intervention therapist still came by the house. We put James on the HME and he scooted around the house. He was showing the therapist around, pointing to different things, and even brought her into Dad's office.🚪 It was so cute! On Friday, Mom had a video consultation with both Early Steps therapists to just go over James' current condition and to help complete some paperwork. 👩🏻‍💻 James was asleep for most of that and when he was awake he was grumpy because he wasn't feeling well. His 6 month re-evaluation is due soon.  James is back on the vent after 5 hours off, because his respiratory rate was too high. 😕 No oxygen though. 👍🏻 Maybe he was working out too much when the therapist was here. 🤷🏻‍♀️ We wouldn't be surprised if there was another week of this. James is a fighter! 💪🏻 James fell asleep in Mom's arms. He normally doesn't let us hold him too long and squirms to get on the floor. Since James...

Sunday, March 12th, 2023 We took it easy today and didn't do much on family day. We took James off the ventilator for a few hours in the evening to watch a movie upstairs, but he was definitely going back on the vent to sleep. It was important that he was getting around the clock humidity. 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

Saturday, March 11th, 2023 Today Dad had to go to a wedding so Mom and James listened to Miley Cyrus's new album Endless Summer Vacation on Disney+. [Video below] James really hears the music, dancing slow and fast, and knowing when that beat drops. James had to stop what he was doing to get his groove on! 😆  We kept him on the ventilator again to him the much needed humidity. Mom needed to suction him a lot. He really hates when we suction his nose and we have to hold him down pretty good. With RSV being upper respiratory suctioning his nose gives him immediate relief. We also decided to do Albuterol with his Pulicort treatments twice a day, along with CPT, and a random sodium chloride treatment here and there. He played with a number puzzle and we are really working on counting now that James knows his colors. Supposedly the order to teach children is colors, shapes, letters, and then numbers! James is very curious and will look at you for help asking you to explain what he is p...

Friday, March 10th, 2023 So we had to cancel PT at home this week as well as therapy today at the hospital. We let everyone know it will probably be another week of this. James watched Snow White and danced to the orchestral music 🎶. He was so focused on making sure the dwarfs were going to save her from the witch. It was adorable! In the afternoon James video chatted with Tommy, Juju and Aunt Robin. 🤳🏻 While James was getting much needed rest Mom used the opportunity to make phone calls. The goal was to get in with a new pediatric GI. Mom needed to get a referral from our pediatrician faxed over, and get his medical records transferred. Mom called the pediatrician and after being transferred to several different people someone asked, "and why are you wanting to switch doctors?". Like depending on the answer they may not approve of us switching. 🤷🏻‍♀️ It seemed like a personal question versus something necessary that they needed to ask. Then when speaking to our current ...

Thursday, March 9th, 2023 📦 Something that Mom forgot to mention earlier in the week was the issue we had with our DME. Last week when we received the call from ENT saying that we had a decannulation date set (for today) Mom was in the middle of confirming our supply order for shipment with our DME via email. Mom was excited about the good news and let our DME account manager know that we had a decannulation date scheduled, and that if successful we would be able to stop respiratory supplies at some point in the future. Well it turns out that the account manager ended up just canceling ALL supplies, all together that day. All respiratory supplies and all enternal (GI) supplies! While at the hospital Mom had followed up with her to ask why we had not received our order yet (that we had just confirmed for shipment).  On a completely separate topic, our orders have been getting later and later each month. Originally when we got out of the hospital we were receiving them on the 12th. ...