The Journey of James Weston

Thursday, October 7th, 2021 James had a pediatric appointment today early in the morning. We scheduled it early to try and avoid the Florida heat in the afternoon. That was also our first time going to an appointment with our M, TH, F nurse. When we got to the appointment they asked her to leave and sit in the waiting room. The rule was that there can only be two people with the baby due to covid. So I guess in our previous appointments we lucked out because our nurse was able to come back with us. Overall the appointment was good. We were there simply because it was his 9-month checkup. They said that he was due for a hepatitis b shot even though he already got them all. The reason they said he was due is because his last shot was given "9 days early" and therefore didn't count. 🤔 They also wanted to give James the flu shot. They did his measurements and weighed him. Weight: 7106 grams (15lb 10oz) Height: 59.5cm (23.42 inches) Head Circumference: 43cm There were 2 thing...

Wednesday, October 6th, 2021 In the afternoon Mom had her monthly Zoom with Insurance, Staffing, and the Pediatrician's office. The call is intended to make sure that we are adequately staffed and to iron out any issues. Well only Insurance showed up for the call 🙄, so we went over any changes regarding his medications, feed, overall health, bills, claims, denials, and appeals. CMS Medicaid (Children's Medical Services) was just purchased by Sunshine, and they state that this change will not affect the patients at all. However anytime a company is purchased by someone else there are a ton of changes... new websites, new logins, a ton of bugs to be worked out regarding processes and technical issues usually due to "new traffic". Well this is having Mom make several phone calls a day and not get anywhere with anyone just to be able to log in to the new site.  Tonight was bath night for James! We do a bath every other night, and when we're not doing a bath we wipe h...

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...