We got a bill from Children’s National with two charges on it, one for Belinda’s video six-month follow up after the POEM procedure and the other from the dilation procedure in DC on Nov. 5. Both should have been covered by insurance, that’s why we continued to pay the big COBRA bill for November to keep her insurance going. Ben sent an email to his former HR rep who looked into it and then said that it looked like the EOB was not on the first one (explanation of benefits, if I’m remembering right) and the second one was still processing. Okay. She asked us to let the hospital know about the need for the EOB on the first claim.

So I emailed the thoratic surgery department. Those emails are generally answered by an absolutely lovely lady who always helps us with whatever we’re dealing with for Belinda. This lady gave me a contact with the billing department at the hospital but also said that she was going to ask the providers to waive the first fee completely. So if that happens, that’s nice for the insurance carrier! If they can’t waive it I’m supposed to get in touch with the person at billing.

The other one we will wait longer on to see what insurance does with it. I don’t like having the bills hanging out like that, but that’s what we have to work with.

My other new struggle is getting her an appointment with the allergist. The internist she saw in December wanted her to get that done and there’s another appointment with the internist in March, so it really needs to get going. But because she is in Tulsa and doesn’t usually refer to OKC, she wanted us to decide who to go to. On the EDS facebook group for Oklahoma, several talked about Dr. U.G., and that’s who we asked for. And then a month goes by. So I contact the internist office again and they say they called it in but he isn’t accepting new patients. Ugh. So I go on the fb page again and find another person and they call in that referral. But when I call that allergist, turns out they don’t take Belinda’s insurance. Okay. So I get back on the fb group, and someone on there is recommending Dr. U.G. and saying they went there just a few days before for their first appointment. What? So I called their office and yes, they are accepting new patients. So I get the contact information for Dr. U.G. and then I ask the internist to do the referral to him.

What I think happened is that Dr. U.G. used to be at a different clinic, and maybe that’s the one they found that said they weren’t accepting new patients. So I waited to get the call. No call.

Earlier this week I called Dr. U.G.’s office and left a message for a call back asking if they had received the referral, but no one has called me back.

I guess I’ll try again today. I just don’t feel like it. But I know I must.

Today is the first day of the second semester of Belinda’s senior year. Hard to believe! She received her honor roll cords for her graduation today. Now she will have those and also her cord from Girls’ State.

Her spring semester of concurrent enrollment at NWOSU started today, and he went to her private math tutoring as well. Tomorrow she’ll start the last semester of homeschool co-op.

I guess I’d better start the Senior Sunday posts now on the social media. I’ve been putting it off (and I guess I feel a little guilty that I didn’t do it with the other two, but I don’t think that was as much of a thing then).

The editor at the Tuttle Times wrote a really nice article about Belinda and the achalasia for this week’s paper. I appreciate his work on that so much! Since her disease is invisible, it is good to let people know sort of what she is going through. She appears to be so super healthy.

Today was the day I battled insurance!

I’ve been having some trouble getting one my own prescriptions filled with the specialty pharmacy I have to use. They told me our insurance showed as terminated on Oct. 31. I explained that we had extended it with cobra, and they were basically like, too bad, so sad. I have waged war with this specialty pharmacy before so I wasn’t super surprised. Then after two days of calling them, they discovered that I needed to get a refill order from my doctor anyway, so I did that.

Last night Ben and I rolled into CVS to pick up a prescription for Belinda. And they said, of course, that our insurance showed as terminated.

Ben got in touch with HR and it went back and forth a little. Today my doctor messaged me and said the prescription had been sent to the pharmacy. So I decided to call the insurance company myself and after an hour wait on hold, got connected to a very nice woman who set up a conference call with us and the specialty pharmacy. And the pharmacy rep told us that the office we made the cobra payment to needed to contact them and tell them that the information was incorrect and that we were covered.

I passed this on to Ben, who was tired of being the middle man and asked the HR rep if could just talk to me, and that’s what we did. I emailed her what the pharmacy had said, and she took care of it. The specialty pharmacy is updated and they also left a voicemail to CVS, so hopefully that one will be updated fast too. I am very thankful for his kind former co-worker!

Okay, so I just called the specialty pharmacy and they have not gotten the prescription from the doctor. Sigh.

I guess I’ll call CVS and see what the update is there.

It’s annoying that so much was paid for the extra month of insurance, and for two weeks we didn’t have pharmacy coverage. I am thankful that we didn’t actually need it, though. My prescription is late, but I did have a few extras from days I forgot to take it, so I think it will be all right.

And in the grand scheme of things, these problems don’t seem very big at all. I know that I am blessed. Thank you to everyone reading my updates and praying for Belinda, and may God bless all of you. <3

I asked the parents in the kids with achalasia group on facebook, and it is definitely spasms. Several people said their children describe the sensation the same way.

I’m very grateful that Belinda doesn’t have them very often. I’m also grateful that they don’t last very long for her. She did say today that sometimes they last longer, like a few minutes, but still. One parent said their child has experienced them from an hour up to two days.

There is medication you can take that supposedly helps with it, but Belinda and I talked about it and she doesn’t think it’s at a point that should be medicated.

She’s also supposed to think about what she ate and drank before one, so she can figure out her triggers. She said she hasn’t had one since the dilation, so maybe that is helping.

I’m glad that she talked about it and now we know what it is. She was frightened that she was having heart problems, but now she doesn’t have to worry about that.

Oh, and bonus fun, the insurance through cobra seems to be working fine EXCEPT for prescriptions. Both pharmacies we use says that it says our insurance has been terminated since Oct. 31. Today I was on the phone with one of the pharmacies and also the insurance company. They were all nice but it’s apparently out of their hands. Insurance lady’s advice was to wait until tomorrow and see if the computers have caught up by then. Even though this is Day 14 of the coverage with cobra. The person at the pharmacy said that the office we paid for cobra coverage needs to contact them and tell them we are indeed insured. So now it’s back in Ben’s court, to deal with HR.

My speciality pharmacy prescription is now 7 days late. Belinda has one to pick up, and so does Lenora, and we can’t do it. It’s pretty bad that the cobra extension cost so much and it’s not even working correctly.

Yesterday Belinda went to her pediatrician to discuss a strange problem.

When we were in DC, the anesthesiologists asked if she had any heart difficulty, and she mentioned that sometimes it felt like her bones were burning. I was startled to hear this and didn’t know what to make of it. She said it just comes on suddenly without warning, and feels like everything is on fire as she gestured to her chest. The anesthesiologists didn’t seem concerned. I thought maybe it had something to do with the Ehlers-Danlos and I looked that up later and it seemed possible.

Anyway, I got her the appointment and we went in yesterday. At that time, she told the doctor that it is in her jaw and chest (I thought she meant her whole body before this) and it feels like her ribcage is being spread out. She has it once or twice a month, it lasts for less than 30 seconds, and is excruciatingly painful.

The doctor began explaining the nervous system but my mind clicked immediately over to esophageal spasms, which most of the facebook group parents say their children have. The doctor agreed that it could be that. I did some research and it sounded likely, including the jaw pain, which I found surprising.

I’ve posted on our group to explain the sensation and ask what their children say their spasms feel like.

If it is spasms, I don’t think there is anything we can do but just knowing what it is, and that it’s not life-threatening, will hopefully make it easier on her.

Waiting for the pediatrician