The Journey of James Weston

Friday, January 21st, 2022 Cute photos! We think Blue is his color!  No response still from our DME, medical supplier.  Thinking about possibly going to the zoo or aquarium this weekend since we won't have nursing. It's cold in Florida and we turned the heat on! 🥶🌴  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...

Here are a few photos from James' first ever professional photo shoot we did in December. We wanted to capture our family at this precious time. Some photos below. Click the link to see the rest! Abramowitz Family Photo Shoot *Normally James is all smiles but that day unfortunately the photo shoot happened during nap time. His nurse also had him doing PT early in the morning so he was exhausted. Bad timing but I think we managed to capture some good ones. 📷 Tabitha White Photography

Thursday, January 20th, 2022 Nurse worked today because she wanted to get some extra hours in. Sure, why not. The nurse's shift is supposed to start at 7am, but we have never had our main nurse show up on time. Typically 30-45 minutes late everyday. This would never fly in any other job. But it's also not worth it to say anything since we've had so many nurses who were worse, we wouldn't want to lose this one. They say, "The Devil you know is better than the Devil you don't". So we'll just stick with her. At 7am, Mom typically does the feeding bag, diaper change, pulse ox change, suctioning, and sometimes venting. Recently James has been sleeping right through this and is back to sleep by 7:20am which allows Mom to also go back to sleep. When the nurse comes it's a rare event for her to just quickly greet the nurse, do report on the evening and night shift, and get to go back to sleep. Today started off with Mom getting woken up by the nursing yell...

Wednesday, January 19th, 2022 Current Weight: 8.865kg (19 lb 8.7 oz) Current Height: 65.3 cm Today we had our Endocrine appointment and we got a current height and weight on James. It was just Mom and the nurse today. A little tricky but only one person is allowed in the room at a time. The nurse was asked to stand in the hall. 🤷🏻‍♀️ Even though we work very closely together all day? That being the case... Mom needed to take James out of the stroller and move him to the scale and measurement counter without the stroller tipping over from the weight of the ventilator.  The doctor decided we should get labs done to see if we could wean him off of sodium chloride and/or calcium. These are the two meds that are prescribed by the endocrinologist. James already had a lab order from the pediatrician to check his lead levels as well as a hemoglobin count. Mom wanted to limit the number of times James would get stuck with a needle and put off the pediatrician lab order from last week unti...