We haven’t made the trip to Iowa City since February. I think that’s why my anxiety is ramping up in anticipation for tomorrow’s big day of appointments. When it becomes routine and you’re just trucking along, going to appointments regularly, you think about it less.

Tomorrow feels big. I am hoping that is not a premonition, especially as it relates to Kiran’s heart. My hope is that we see continued stability there, with no need for an intervention anytime soon.

I have questions for his gastroenterologist which feel life-altering. I tend to have to hear about something a few times and gain a different perspective on it before I’m really willing to consider change. This revolves around his stooling, and I have decided I need to be more protective of his privacy in this area as he gets older, so I may not share as much openly here as I once did.

And genetics. I heard again from his genetic doctor today, and they want ME to also do the skin punch biopsy (Yay….). I read through the ten page consent form for the research study today, and I am ready to move forward with my consent for Kiran to participate (his dad still needs to weigh in but last I heard, it sounds like he is consenting as well). I also let her know that if we are, in fact, moving forward with Kiran, I will definitely participate as well. As I am typing this, I am just now realizing that means I, too, have to decide if I want any secondary information about genetic makeup that could cause disease in the future.

Why is it a harder decision when it’s me versus Kiran? I think I am a much worse patient than I am caregiver.

At any rate, I don’t anticipate much sleep tonight, and my alarm is going off at an atrocious hour. We have to be on the road by 5:30 am, and we likely won’t get home until 5:00 pm. I know the day in and of itself will be exhausting – they always are – but I have my documents in order and my lists of questions at the ready, meals are pulled, backpack packed. I am as prepared as I can be physically; I just wish I knew how to better prepare myself mentally and emotionally.

The unknown is never easy.

I will do my best to update the important news of the day on the car ride home – as per usual, my dad is acting as chauffeur – but consider holding us up tomorrow, in whatever way you choose. We accept all currencies of positivity sent our way.