The Journey of James Weston

Wednesday, April 27th, 2022 James started out the morning by pulling out one of the medical supply drawers and grabbing all the 2x2 gauze. He said he was just doing an inspection to make sure we only have "the good kind". After physical therapy James took a nap on his floor mat. Mom is trying to keep him out of the crib as much as possible. We are still giving him a break from the helmet during the day and only putting it on at night. Tomorrow is a follow-up appointment with them. For physical therapy we are focusing on James putting weight on one hand and reaching across his body with the other to reach something far away.   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

Tuesday, April 26th, 2022 James get the courage to pet Tommy. Tommy was not a fan. They both like to check each other out when the other is not looking. In the afternoon, we were our way back to Tampa. Mom and Dad handled his trach care when we got home around 9:30pm. It takes about 1 hour to unload and hook everything back up.  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, April 25th, 2022 Mom contacted the GI office to let them know of the ER visit and the concern with this button being too big. It sounds like our Doctor is doing hospital rounds this week and wouldn't be in the office. They said they would leave him a message so he could order the new button and reach out to IR.  In the afternoon, Dad arrived back from NJ. Tomorrow we head back to Tampa. 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...

Sunday, April 24th, 2022 James joined us while Aunt Robin cooked in the kitchen. He is learning his colors and really loves green! James loves playing with all of Mom's old toys because it's something different from what he has at home. Tommy is get more and more comfortable with James and even let him pet him.  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 23rd, 2022 We got to call in the morning to come in for a procedure at noon. Over the phone Mom asked the Radiologist about the sedation and let him know her concerns. He stated that they would not sedate and then proceeded to list all of the "prestigious" hospitals where he had worked. Just some advice but anytime someone needs to name drop their previous employer, education, or job title, it's really off-putting... When James woke up 7am you could tell he was still very sleepy. We were in the ER pretty late and James' sleep schedule was off. So Mom ended up holding him in a chair and he slept in her arms for an additional 2 hours! 🥰 At this point, James is only wearing the helmet at night and we are taking it off during the day. Aunt Robin drove James and Mom to the hospital. It's very large and we definitely got lost. Robin stayed in the waiting room while Mom was able to gown up and go back for the procedure. Not only did they not sedate but t...

Friday, April 22nd, 2022 So our GJ popped again! This time we made it to 5 months.  In the afternoon, we took James for a ride in the car to run some errands. When we got home Mom lifted him out of the cart seat to the massage table to do his care and change his diaper. She noticed his GJ button was leaking through his shirt. As she lifted it up she saw that the balloon was deflated sticking out past his stoma, so she pushed it back in and taped it down with gauze. Time to go to the ER! Unfortunately GJ is not like a G-tube. A GJ can't be replaced at home and requires interventional radiology to do a fluoroscopy. We were out of town and had to have this replaced at a hospital we were not familiar with. After asking several locals everyone said that Wolfson Children's would be the best option. Overall, it was the same situation... Mom explaining what a GJ is to ER nurses who should already know, teaching the radiology techs difference between the two extensions and showing them ...