Day 800 - James Can't Stop Dancing Even with RSV 🕺🏻

Friday, March 10th, 2023

So we had to cancel PT at home this week as well as therapy today at the hospital. We let everyone know it will probably be another week of this. James watched Snow White and danced to the orchestral music 🎶. He was so focused on making sure the dwarfs were going to save her from the witch. It was adorable! In the afternoon James video chatted with Tommy, Juju and Aunt Robin. 🤳🏻

While James was getting much needed rest Mom used the opportunity to make phone calls. The goal was to get in with a new pediatric GI. Mom needed to get a referral from our pediatrician faxed over, and get his medical records transferred. Mom called the pediatrician and after being transferred to several different people someone asked, "and why are you wanting to switch doctors?". Like depending on the answer they may not approve of us switching. 🤷🏻‍♀️ It seemed like a personal question versus something necessary that they needed to ask. Then when speaking to our current GI office Mom asked them to transfer medical records they said (always awkward), "just as a warning once you leave our practice you can never come back". Oh man in that case.... 😂 All in all, we aren't leaving because we love the practice. Hello! 🥴 Telling the office staff they are the reason you want to transfer elsewhere isn't going to help in getting the transfer completed. Gotta play the game. So we went with, "we just want all of our doctors at the same practice". Slowly but surely we are transferring all of our complex care clinic doctors out from St. Joe's.

1. Pediatrician - St. Joe's
2. Endocrinology - USF (switched from St Joe's)
3. Orthopedic - All Children's (switched from St Joe's)
4. GI - Soon to be USF (switching from St Joe's)
5. Pulmonary - St. Joe's but not part of the CCC
6. ENT - St. Joe's but not part of the CCC
7. Genetics - USF
8. Nutritionist - St. Joe's (but once we switch to USF they will have their own nutritionist)

The first four listed above were part of the Complex Care Clinic. The idea is all of the doctors are in the same building, on the same floor, just doors away from each other. So when your child is medically complex you are directed to schedule all your appointments on the same day. Well that never worked for us. When James was 100% vent dependent, we had limited battery life on the ventilator, along with a limited supply of oxygen. So to be at doctor's appointments all day we had some close calls with the battery dying. It made more sense for us to have each appointment on a different day, which means they could be located anywhere.

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