The Journey of James Weston

Saturday, January 7th, 2023 So Mom started the day off with only 2 hours of sleep, but we were packed and ready to go! Remember only 6 days ago we were pulling another all nighter in the ER?! Do Moms ever "catch up" on sleep? We needed to leave by 7am in order to allow enough time for traffic to Miami. We were supposed to arrive around 1:30pm. Packing the car takes about an hour and this time Dad had a challenge of fitting 3 suitcases with the oxygen concentrator and stroller into our tiny SUV. It was definitely a game of Tetris! We left James in his pajamas as he was still sleeping and would change him once we got to the port. Of course as soon as we got in the car, he woke up! We had a very long drive to Miami. Most people get there the day before and stay in a hotel to make sure that they don't miss the ship. We would have definitely done that if we were flying but since we were in the same state we figured we could make it work. We arrived on time and dropped off our ...

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...