18/08/2025
Delilah is getting a bunch of her teeth capped on Friday. I’m a little nervous but the dentist who’s doing it is her geneticists wife and she knows how fragile Delilah’s bones are.
This procedure kind of snuck up on me. It’s been on the calander for months now. (We scheduled it at her last dentist appointment) But it not being in July has thrown me off a little I think and it felt farther away than it was.
We had her pre-op appointment via telehealth on Friday. The doctor isn’t actually on her care team and she half scolded me for not seeing neuro surgery in the last year. (I HATE scheduling with Delilah’s neuro surgeon) the appointments last like 10 minutes and she can only be seen on specific days. So there is never any give on their end even if we have a thousand other appointments in Akron that month. They will tell us to make another trip up there for a 10 minute appointment knowing the round trip is over 5 hours of driving. 😅 I’m not always current with them because of that. It’s hard to make with work when they give us so little to work with. 🤷🏻♀️ ANYWAY. I wasn’t expecting to get a call on Monday morning urgently trying to make an appointment with me from neuro surgery. They wanted me to make a trip this week with no notice so that they could “clear her for surgery” when we haven’t needed this for the last 2 surgeries. 😅 Mind you this is just a teeth capping. Yes she’s going under anesthesia but they aren’t cutting her open like they did the last 2 times. I will say as someone who isn’t always great at standing up for myself I definitely stood my ground this week. I told them unless they could make it telehealth it wouldn’t work and how frustrated I was with how last minute they were when this had been scheduled for so long.
Guys the appointment lasted 3 minutes. We said everything from our hellos to our goodbyes in 3 minutes. 😅
I know we need to take her in soon. They want to schedule an MRI and I also want that. They want to check her shunt and her neck out and honestly I want that asap too. Not that I’m worried but both of those things are extremely important to keep an eye on. But I don’t think whatever this 3 minute appointment was needed to happen at all. 😅
I’m extremely appreciative of Delilah’s neuro surgeon. She literally saved Delilah’s life when our previous neurosurgeon said it would be “too risky”. She did an amazing job and Delilah is thriving because of her. I don’t want to get behind with her. Life is just busy and sometimes it can’t be put on the front of my to do list when I know the appointment will only last 10 minutes tops. 😅
We also need to make some pretty big changes to Delilah’s overall care. I’m dragging my feet because change sucks and it’s hard. I’m going to miss the convenience of just a 5 hour round trip. 😅
