The Journey of James Weston

Thursday, October 6th, 2022 James had fun playing with his airplane. He had the pilot take a nap in the back. 😲 He also enjoyed his farm animal puzzles. We are focusing on animal names and sounds. James will point to certain animals if you ask!  After PT, we had family dinner night and went to the Olive Garden. They were nice enough to get us a table with room for his stroller to be nearby. James ordered games on the checkout machine that showed up on the bill. 😂 While we were there, we bumped into one of Mom's friends she used to work with when she was in staffing (SRG). We probably stick out with having the baby on a ventilator. 😆 👋 Video below shows the repetitive scissoring leg movements that James does with his legs.  He did not want any bean bags on his legs and moved them all to his head. 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

Wednesday, October 5th, 2022 Yesterday we had to cancel 2 appointments: 1) Our first face to face with our new Medicaid Case Manager 2) Physical Therapy. We didn't know what time the air conditioning unit would be fixed so we had to reschedule both. Today had physical therapy and early intervention therapy. During physical therapy we finished some paperwork regarding our annual re-evaluation. Our physical therapist knows James' abilities as just as well as Mom but before she completed it she wanted to verify a couple of things. So we asked James to perform like a monkey just to make sure that everything was accurate. She also wanted to let Mom know that she was concerned for his posture because he has a very rounded lower back and in combination with what is called a sacral dimple could be a cause of concern for a tethered cord. She suggested that we get checked out by osteo because this would need to get fixed sooner than later and could affect his growth. We are not a huge fa...

Tuesday, October 4th, 2022 So last night was pretty bad! 😩 Three of us were in a king sized bed but we also needed to keep a pillow on the other side of James so he didn't roll off making it feel like four people in the bed. James' pulse ox alarmed all night. He wasn't even on oxygen all day but then as soon as he got into a deep sleep, and he wasn't even moving his O2 would drop. Mom and Dad were up all night trying everything... 🥱 suctioning, replacing the pulse ox, repositioning the trach, making sure there wasn't any water in the circuit, but nothing was working Mom turned on the oxygen tank . It just didn't make sense why all of a sudden he would need it but be fine during the day. James was sleeping soundly while our hotel neighbors were probably like 🤬 because of the peeping! For this very short hotel stay we only brought two oxygen tanks versus the huge oxygen concentrator. The first tank we started with was only about 80% full. Mom started on 1/16, i...

Monday, October 3rd, 2022 Woke up this morning and realized the air conditioning unit wasn't working. Obviously we turned the air up before we left town and when we came back last night we turned it back down. It normally takes a few hours for it to adjust. Even though the temperature in the kitchen was reading 78° the temperature near his crib it was reading 89° due to all of the equipment running. It was Dad's day off so Mom texted the landlord and shortly after he said the AC people were on their way. When the AC showed up he let us know that even though 2 weeks ago the issue was the capacitor; it's now the compressor again (that they already "fixed" this year). He was going to have to order a new part to actually replace it this time and come back tomorrow to repair it. Mom texted Dad letting him know we needed to do something (like get a hotel). So that's what we did! Mom had just finished unpacking supplies from the trip to Jax and now had to repack (qui...