The Journey of James Weston

Thursday, October 20th, 2022 Thursdays have become PT 🤸🏻‍♂️🏋🏻‍♂️ and Family Dinner 👨‍👩‍👦 🍽️ night. Today in physical therapy we focused on only playing with one toy at a time. James likes to continuously sign for "toy" until he gets more toys. We are really working with him on scooting forward but he now realizes that he can just pretend to cry and reach for Mom if he wants to stop PT. So that's a lot of what is happening during the 1 hour! Thursday is now family dinner night and this evening we decided to try a new place, Longhorn Steakhouse. The thing about bringing a baby in a stroller on a ventilator into a restaurant is that you can't just put the stroller aside. We have to be very methodical about the places we can go. We think about the layout of the restaurant, if they have tables and chairs versus only booths, and how crowded it is. You have to consider if there is room for waiters and waitresses to get by. When we told the hostess that it would be ne...

Wednesday, October 19th, 2022 Today was the first chilly day that we've had in Florida and a long time. Mom had a doctor's appointment in the morning and then James had his GI appointment in the afternoon. This is the first time that Dad would meet the new GI doctor. At his appointment the only change that we really made was to increase his feeding. James' weight and his height had not increased since June so his weight has not been on the growth curve it needs to be. Previously his weight was on a pretty good projectory but his height was below the curve. Now it looks like his weight is on the same path as his height. This means that he will be more proportionate but overall both are below the normal growth curve, which is understandable for his situation. His feed rate went from 35ml/hr to 40ml/hr; still keeping 5ml/hr of water added to each hour. Instead of having an hour and a half break we would use the hour and a half break to do a transition to his G-tube. Dad asked ...

Tuesday, October 18th, 2022 James had physical therapy in the morning which is when he did his 45 minute trial off the vent. He is still getting emotional during therapies acting like he is tired after having a nap or reaching for Mom to be held. He tries anything to get out of PT now.  Mom attempted to schedule his hearing appointment to get his first outpatient testing done but so far just a lot of messages with no returned calls. In the evening Dad gave James a quick guitar lesson while Mom showered. James got himself stuck with the cords wrapped around. Trying to grab the phone. Someday we'll use this photo on his album cover. 😂 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

Monday, October 17, 2022 In the middle of the night Mom couldn't sleep and to her surprise James was at 100% for his oxygen saturation without being on any additional oxygen. His heart rate was also fairly low which meant he was in a deep sleep. Typically he has needed some oxygen support when he getting into a very deep sleep. So this is very exciting! 😁 James has recently started feeling, enjoying, and dancing to music! He would choose the music on the Spotify app, scrolling until he liked something. The he would let go of the phone and just move his head. He really liked Alabama Shakes, Leon Bridges, and Florence and the Machine. The music in the video below is the Temptations and Hozier. 🎵 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

Facebook Post from Mom 📝 Today 3 years ago we lost our baby girl, Hannah Lynn. She was born sleeping at 20 weeks. I labored for 12 hours and delivered her at 10:17am on 10/17.  ❤️ You leave the hospital without your baby and you're no longer pregnant. No matter how supportive your family, spouse, and nurses are, you still feel alone. It's a different experience; it has physically changed your body. You've announced your pregnancy publicly weeks ago and everyone is asking about the gender. All of the testing comes back normal with no answers as to why this happened. You are told repeatedly that "pregnancy loss is common" as if providing statistics will remove your suffering. There's nothing worse than loss of a child who you've held in your arms. Your grief will last a lifetime. ❤️ To this day, there is really only one thing that has helped me. I needed to connect with those who could relate. I received a FB message from a friend of a friend and although s...

Sunday, October 16th, 2022 James spent some time with Dad while Mom went to go chill by sitting in the car a parking lot. James played with puzzles and got in some physical therapy stretches. Dad also took James for a walk in the late afternoon in the stroller.  In the evening Dad left for a hotel to rest while Mom did some handy work around the house. It was time to do some child proofing. Mom secured the Ikea bookshelf to the wall with an anchor furniture strap. It's only a matter of time James will try pulling himself up to get toys. James wanted the phone He decided he was okay with selfies instead 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