Day 783 - New Endocrinologist! 👩‍⚕️

Tuesday, February 21st, 2023

Today was a busy day with physical therapy and then an afternoon appointment across town. 🚗

👩🏻‍💻 Mom had an early morning virtual appointment with the new fertility doctor to discuss a new protocol for the next cycle.

🧍🏻‍♂️Then James had PT at home where he worked really hard on standing and shifting his weight. Our therapist accommodated us by coming early so that we could leave on time to make our afternoon appointment. We needed to drive about an hour east to see our new endocrinologist. 

👩‍⚕️We were referred to this new endocrinologist at USF by our new orthopedic doctor. He said that she specialized in bone density and with James' history of prematurity along with his partial recessive gene of osteogenesis imperfecta, it was good to have someone who was familiar with it. Like all doctor's appointments it seems like you wait a very long time to actually speak to the doctor. You go over all of the medical history and current medications. You know all of this stuff you just filled out on paper. You explain all of this to a nurse and then the doctor comes in and you do it again. Overall the doctor was very nice and you can tell that she really loves her field. The plan was to do some more testing to make sure we knew we were looking at. We discussed a blood test and a DEXA scan of the spine. The doctor was familiar with our genetics doctor and she said she would like to consult her first before doing the blood test. They want to make sure they choose the right one to do and she didn't want him to have to go through two blood draws.

😴 So if you notice in the photo James fell asleep before the doctor even came in. We were an hour past his nap time. The doctor said she needed to examine him and that's when he woke up very upset. He don't even sleeping for maybe 10 minutes. He threw a tantrum like no other. James may be only 20 lbs but he is very strong and is impossible to control. He was not happy about sitting in his stroller or being held or laying down on the table. The doctor wanted to do this DEXA scan which would require him to lay still on a table. Even with several people holding him down, having him watch Moana on Mom's phone, he wanted nothing to do with it. They could not get the scans. We left the appointment with the doctor saying she would consult our genetic's doctor regarding which blood tests to do. The blood test would do an indepth scan of different types of skeletal dysplasias. We don't expect to find anything, but it would be nice to get a second one done just in case.

🛣️ It took over 2 hours to get home. Mom had to stop several times either to suction James, reset his feeding pump, or just to calm him down. James was very upset the whole ride home and ripped off his pulse ox (monitoring his heart rate and oxygen level) several times. So on top of the feeding pump beeping, the pulse oximeter alarming, James yelling, the GPS also was giving Mom wrong directions and we got lost several times just trying to get home. It was one of those moments where you seriously contemplate just getting a hotel even though you are only a few hours from home. When we made it home Dad offered to do his care so that Mom could reset.

The Calm Before The Storm

PT

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