The Journey of James Weston

Friday, January 6th, 2023 Busy day today and didn't take any photos or videos. 😬 We had early intervention therapy in the afternoon. James slept through most of it.  Please enjoy these videos from early earlier in the week that didn't get posted. Mickey Mouse called James to hype him up for the cruise. James wasn't a fan! 😂 And the other James is enjoying his PMV. 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

Thursday, January 5th, 2023 (Left at 8:30am) 9:00am -9:30am - Physical Therapy @ Hospital Mom confirmed with the therapist that these appointments would only be 30 minutes. 😫 May not be worth it! We worked on standing. 9:45am-12:40pm - 2 Year Pediatrician Appointment James was weighed without clothes and measured head to toe! His updated numbers are 9.80 kg (21lb 9oz) and 76 cm (29.9 inches)! James had a developmental assessment for being 24 months and he did really well! Passed with flying colors! He also got 2 shots for Hepatitis B, a finger prick blood test for lead, and a finger prick blood test for hemoglobin. Unfortunately the nurse needed help and had to get another nurse who needed to prick a 2nd finger because the blood wasn't flowing. The woman who did his developmental assessment was so nice and let James listen to his lullaby on YouTube during the blood work. She also gave him 2 new toys, a Mr. Potatohead and a puzzle that he would need to learn to string a rope throug...

Wednesday, January 4th, 2023 Today we were supposed to have Early Intervention therapy but the therapist mixed up the dates we would be out of town. She offered to come later that day but then James immediately went down for a nap so we rescheduled for Friday. Mom should be packed by then, right? 😵‍💫 In the morning, James had a good time pretend playing using his firefighter to play on the guitar. There is a cute video below. In the afternoon, the hospital called to schedule James for his sleep study on February 8th!!! It's the next step towards decannulation! We are so fired up!🥲😁🥲😁🥲 Mom and James ran some errands. We needed to stop by the UPS store for some Amazon returns. Mom scheduled a big boy haircut at a kids salon where they can sit in cars and watch TV so they are distracted. We didn't get any pictures of James actually getting his haircut because Mom was holding him the entire time while he watched Blippi on TV. He was very good even though the stylist constant...

Tuesday, January 3rd, 2023 We started off with an early morning Pulmonology appointment. Mom is now going to these appointments alone since James is more stable. This was going to be his last Synagis shot to protect him from RSV. His insurance only covered 5 during flu season AND since he turned 2, he will no longer be covered in the future. So this was the last one forever! (Although James actually get 2 shots at the same time because it's based on his weight.) Prior to getting the shots Mom spoke with the nurse practitioner. Mom went over everything including the concerns with Toby causing the thick secretions that were not able to come up because they were so deep. She said that as long as when he woke up he could clear them, he is fine with sometimes needing oxygen support at night. We definitely figured out that giving albuterol for 20 minutes, then pulmicort for 20 minutes, and then Tobramycin for 30 mins (all separately) has helped as well as doing these treatments earlier b...

Monday, January 2nd, 2023 We had PT at the hospital scheduled for 10am. Unfortunately the therapist never wrote the time down and we waited for over 40 minutes before anyone acknowledged that we were waiting. These sessions are only 30 minutes as it is. It takes almost 30 minutes just to get out the door with everything, so we don't know how many more we will do. Some Moms just drop off their child like it's a daycare. 😳 The whole point of any therapy is to show the caregiver what to do so they can help practice daily at home. However with the therapy we're getting at the hospital there are no exercises or instructions of what to do at home.  James had a guitar lesson once we got back home after running a few errands. We will be shocked if James doesn't play the guitar when he's older. 🎸 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

Sunday, January 1st, 2023 We got to the hospital around 1:20am. At this point, we only continued water in his G-tube at a rate of 40ml/hr to help with dehydration. The Children's ER was completely empty. All of the medical staff was super friendly being that they were working on the weekend and on New Year's. We got into a room immediately. James was weighed and Mom went over all of the medical history. He had to get an IV for admission. It was great that she got it on the first try but we weren't sure it was going to work because it took a very long time. James cried and had to be held down by Mom, Dad, and another nurse. She put the IV in his hand so she needed to tie restraint boards to his arms to prevent him from pulling it out. We were told we would get admitted into the PICU soon but it ended up taking until 5am. Mom and James tried to sleep on the ER bed while it was very cold. While Dad was busy getting work done because he had eaten an energy bar that just kicked ...