I got a call this evening from Children’s National. Her procedure is scheduled for 5 pm on Tuesday, and we have to be at the surgery department of the hospital, on the second floor, at 3 pm. She can eat and drink normally the day before, but will on a clear liquid diet after midnight, and nothing red or reddish. So she can have water, broth, gatorade (no reds), gelatin and popsicles (also no reds) and that’s about it. Belinda wasn’t thrilled to hear that. I wish the procedure was scheduled earlier in the day, so she wouldn’t have to wait all day to eat. But, it will gives us time to sightsee on Wednesday morning if we like, and I think she’ll enjoy that. I’ll have to make sure to pack a thermos for carrying around the broth that day. Our time is one hour earlier, so she will be having her procedure at 4 pm in central time.

She has a shirt that says Achalasia on it and it has a rating of one star. Under that it says something like “Very bad, do not recommend.” She says she’s going to wear it all day Tuesday, so she can roll into the hospital with it on.

There’s another family from the facebook group for parents of kids with achalasia that will be at the hospital that day as well. We’re going to attempt a meetup. It’s all loose right now, which is good. I’d like to meet them and let Belinda meet another person with achalasia but I also want to make sure I can focus on her.

Today we received the itemized statement from OU Children’s that shows everything we paid to them for this whole thing. The total they charged for Belinda’s care was $74K. Insurance handled most of that, but we paid our share too. And all of that was for just figuring out the diagnosis. I sent the first page of the statement to NORD. They said they might be able to reimburse us for part of what we paid. We’ll see what happens.

We need to pack. Instead I cleaned house the last two days. Things look a lot nicer here now, making me feel better about leaving it for a few days.