The Journey of James Weston

Tuesday, October 5th, 2021 Our Tues, Wed nurse was here from 7am to 7pm. Not much to report. James had his last round of antibiotics at 3am. He has been feeling better! The goal everyday is to get him out of his crib in different positions. Mom is working on teaching the nurses how to do this whereas his hospital primary just did it. Holding him, playing, singing, physical therapy exercises, working on his flat spot, etc. Why? Because she really cared. Oh we miss her... A toy from his BayCare NICU family ❤️ James is getting curls! Maybe?! P.S. If you read the blog and are supporting James through his journey we would love you to participate in our video montage of everyone singing his lullaby. Please see the James Weston lullaby post for more details. ❤️ Last call for last minute submissions! You know who you are. 😘 Please try to get these in this month!

Monday, October 4th, 2021 Mom held James for the majority of the day. James also enjoyed sitting up in his new boppy chair courtesy of our visitors from the day before. Just trying something new! Tomorrow we have a Nurse Interview in the morning. Someone who may take on Saturday and Sundays Day shift. Mom spent the day working on medication spreadsheets and trying to figure out which Doctors and pharmacies go with each medication. She also left messages for the Social Security Office, James' GI Doctor, and our DME supplier. Just waiting on calls back. Lots of following up! P.S. If you read the blog and are supporting James through his journey we would love you to participate in our video montage of everyone singing his lullaby. Please see the James Weston lullaby post for more details. ❤️ P.P.S. Thank you so much for the lullaby submissions so far! It's so exciting to have all of you be a part of something so special! 😭

Sunday, October 3rd, 2021 (Photos and Video only) P.S. If you read the blog and are supporting James through his journey we would love you to participate in our video montage of everyone singing his lullaby. Please see the James Weston lullaby post for more details. ❤️ P.P.S. Thank you so much for the lullaby submissions so far! It's so exciting to have all of you be a part of something so special! 😭

Saturday, October 2nd, 2021 Finally a day that Mom and Dad can enjoy James by themselves. Sometimes it's nice to have privacy and not have a nurse in the room with you 24/7.  James typically wakes up around 7am, which means it's still dark outside. Mom moved him to her air mattress to get some morning snuggles. On a side note, this is the 3rd air mattress that doesn't hold air. Come to find out from the internet, this is a thing that just happens, they aren't meant to be used daily. So we ended up purchasing a collapsible bed that folds in half with a real mattress that we can just move to the side during the day.  Dad started off the day with going to the office to run the PB&J for Tampa Bay nonprofit, then ran a local personal growth meeting in the afternoon before driving around giving out sandwiches to the homeless. Mom held down the fort at the house and had James listen to a lot of different music. He gets really emotional listening to Leon Bridges, it's a...

Friday, October 1st, 2021 James is 9 months old!!! (5½ months adjusted!) Wow time really goes by fast! We've now been home for 3 weeks. Before you know it, James will be having his first birthday party!🎈 Crazy, right? 😮🥺 Today James had his first skills assessment! We had a 2 hour Zoom screening with Early Steps to determine where he is at for social, communication, motor and self-help skills. Early Steps is Florida's early intervention system that offers services to eligible infants and toddlers, age birth to 36 months, who have or are at-risk for developmental disabilities or delays. Early intervention supports families and caregivers to increase their child’s participation in daily activities and routines that are important to the family. Positive early learning experiences are crucial for later success in school, the workplace, and the community. Research shows that children’s earliest experiences play a critical role in brain development. James automatically qualified d...

Thursday, September 30th, 2021 Finally hear back from RT at 3:00am, after calling a few doctor's offices to find no emergency on-call line. She directs Mom to change out the circuit even though we just put a brand new one on this evening. So Mom had to go wake up Dad upstairs for him to come down because this is definitely a two person if not a three person job. The reason being there are multiple things to hook up at the same time and we cannot have James off of the ventilator for that long. We end up switching out to the new circuit and the disconnect alarm stopped going off. Thank goodness! So now it's 3:30am in the morning, dad is going back to bed and mom needs to do the milk and James' meds. The nurse arrives at 7:00am so only a few hours of sleep until then for Mom. So now we used our last circuit and we are supposed to change that weekly. Our insurance only gives us three a month. We have not received our second month order yet from our respiratory DME so we are sti...