September is Achalasia Awareness month. I just learned this and I’m not sure what I would like to do to help spread awareness, but I’m going to think on it. If we had been educated about Achalasia from the start, Belinda could have saved three years of suffering – and a year of that was when I had found out about it, but her doctors kept saying she surely didn’t have it. I suppose because it is so rare.

So we celebrated our birthdays, and that was fun. It was nice having family and a few friends over for dinner and cake. Belinda made lasagna from a tiktok recipe and it was really good. Lenora made a lemon cake and we also had an oreo cake brought by Jenny and Steve, Ben’s sister and brother-in-law. Last year at this time Belinda could barely swallow anything and was only a few weeks from getting a feeding tube put in. It was so great that she was able to eat and celebrate her birthday without too much worry of regurgitation. I’m thankful.

We got a bill for $9000 from Children’s in OKC and a bill for $30 from Children’s National in DC. The Children’s National one only has the two telehealth visits we had with the doctors before we went there. So expecting something big from them in the future. I’m thankful that the team at Children’s National were able to get our insurance to work with them.

Children’s in OKC will give us a one-time 60% discount if we pay in full, which after insurance handles one of the charges they didn’t recognize, will be just shy of $3000. We don’t have $3000, but I’m thinking on what I could do about that.

Belinda was at Camp RYLA this week. She won free tuition to camp at the OEC Youth Tour contest. It’s a leadership camp, and only 41 students attended this year. Each camper goes for free, it’s all paid for by Rotary Clubs across the state.

She didn’t do well eating. She said her throat closes up more when she’s eating around other people. She also felt overwhelmed by the other people and the activities. But she stuck it out, and we went to Parents Night last night and brought her home today. I’m really proud of her.

The picture is of Belinda and the other girl who won the tuition from the OEC competition. This was at Parents Night.

Yesterday Belinda went to the cardiologist and had an EKG and ultrasound, and everything looks great!

This was more of a fact-finding appointment because some Ehlers-Danlos patients have heart problems. The doctor was interested in how she was diagnosed with Ehlers-Danlos, and we told him it was part of our figuring out the achalasia diagnosis. He was also very interested in the achalasia diagnosis and asked us several questions about it. Belinda and I talked about that later, how both staff members that did the EKG and ultrasound hadn’t heard of achalasia, but the cardiologist certainly had. He even asked who the lucky doctor was who diagnosed it, and how it was diagnosed, and we told him. Although I don’t love that Belinda has this, it was kind of fun to see how jazzed he was about it.

Anyway, she was supposed to get these tests done, and her pediatrician said she needed them for sure because Belinda has been talking about getting medication to help with her ADHD, now that she has so many college classes that need her to focus, and since those are stimulants her pediatrician wanted to ensure that her heart was healthy for that kind of medication. And it is!

The appointment cost $92, and they said that was because we’ve met our deductible with insurance. But I thought if we’d met our deductible we weren’t supposed to have to pay anything anymore for the rest of the year. So I guess I don’t understand how that works. Insurance stuff is no fun.

After that, we got her some chickfila to celebrate (she always seems to want chickfila after doctor appointments) and then we went to the psychology testing place to do a few additional tests for her neurodivergence testing. I’m glad we got all of that wrapped up. I am ready for less doctor appointments!

She humored me by letting me take a picture of her with the cardiologist sign, because she has complained that she is a little too old for all these pediatricians and this one also treats fetuses. Bonus, she will be back in three years for a follow up, so she will be 19 then and still seeing the fetus doctor. She is a good sport.

The picture is a little blurry because someone was coming out of the office door and I panicked because I didn’t want to look like a weirdo taking a picture of my kid with the office sign!

Belinda had a good swallowing day today!

I talked to some of the ladies on the achalasia parents group on facebook, and they felt it was probably stress or other things giving her the issue right now. The nurse from Children’s National agreed with that and said that she’s definitely still healing now, and different things can trigger problems. Doesn’t mean she needs a scope again.

I’m looking forward to her being home Friday so I can maybe help her have a more achalasia-friendly diet for a little bit and see if things calm down. Today Lenora and I went to Edmond and dropped off a little care package that included some foods she seems to do okay with – including chocolate!

Anyway, feeling better.

Belinda is at Oklahoma Girls State this week! It’s a great opportunity for leadership and an exciting way to learn about government.

Less happy is the fact that she got food stuck again before she went. And it got stuck last night. And this morning. She also drooled in the night, and that had stopped with the POEM procedure.

She told me today that she thinks she needs to have another scope. This is big because Belinda hates having those things done. So it’s for sure serious if she’s asking for one.

I sent an email to the team at Children’s National to see what we need to do. I’m guessing schedule a scope at Children’s in OKC.

Please pray. I know this is stressful for her, and this was supposed to be a fun week. She says she’s having a good time, but I know this is making everything much more difficult for her, physically, mentally, and emotionally. My poor girl.

Today Bennett and Mia brought home breadsticks from Olive Garden for Belinda and they got stuck and water wouldn’t get them down. It was the first time she had to force food back up since the POEM procedure. It was mostly water and I didn’t ask but I imagine it’s because she tried so hard to get it down with water. I wasn’t home but she texted me and was really upset.

We knew this would happen and that she’s still learning how eating works now, but it’s a small reminder that POEM isn’t a cure, it’s a treatment, and this is going to be a lifelong thing.

Now that we have the POEM procedure done, we are taking a closer look at the Ehlers-Danlos. Her pediatrician referred her to a cardiologist, and they just called today and set that appointment for June 5.

It seems crazy that everything continues to happen but I just know this is real life and we’re experiencing it. I do think that her Ehlers-Danlos doesn’t seem to be affecting her very badly at this time, but I’m glad we know about it so she can be prepared in the future. The geneticist did not give me an official diagnosis but said I had the same thing, and so I am now trying to find out if this is the actual cause of all the pain I’ve had for so long.

Anyway, Belinda’s appointment is at Pediatric and Fetal Cardiology Associates, and I think that’s amusing because she has been annoyed that she goes to pediatricians and children’s hospitals for a while since they seem to be designed for little children and she is almost grown, and now she’s going to a place that also treats fetuses. I wonder what she’ll say when I point that out!

Belinda and I just met with Dr. Petrosyan and Jill for her two-week follow up appointment and everything is looking good! Dr. Petrosyan released her to eat regular food now, although he did warn her to be very careful with tougher types of food while she’s getting used to how her system works now.

As soon as we were off the video chat, she got the two packets of snacks we’ve saved since the trip to DC – the complimentary bags of snack mix and graham squares from Southwest Airlines! She was so happy to crunch into food and got a big smile when the first pretzel went down easily with water.

Now she wants Chick Fil A for lunch and Olive Garden for dinner! She’s been planning this day for a long time.