So I didn’t really plan on telling everyone this, but Ben has lost his job. Such a shock after 28 years with the same company. They wouldn’t even tell him why.

I’m not worried because he’s really good at computer programming and I know he will get another. However, this comes at a rough time since his insurance will end on Oct. 31 and Belinda’s surgery is Nov. 5. We have information for COBRA insurance, to continue the current coverage, but that will be around $1800 a month for our family. That is quite a bit higher than we can feasibly pay at this time.

We need to find out how much COBRA would be just for Belinda, and then seek out an alternate short-time insurance option for the rest of us. I believe Belinda needs to stay on the insurance because of the copay and out-of-pocket max already having been met. I don’t know how much the surgery costs would be to us if we started over with temporary insurance, but I imagine it will be more than just insurance her through COBRA. It is frustrating that we did meet those costs, and I was looking forward to taking care of more medical things in the next two months, and now that’s in jeopardy.

I also contacted the National Organization for Rare Diseases to see if there is any assistance they can offer, but I just emailed them so nothing yet.

Bennett is looking into the insurance offered at his job to see if doing his separately through his work would be a less expensive option. Lenora will not want to get on Ben R’s (her husband) insurance because she already checked and the SSM Health network is not on it, which would mean she’d have to leave our beloved doctor and all her other doctors (gyn, therapist, etc) which she doesn’t want to do. That’s why we left her on ours when she married, because she can still stay on it for another year or so. I just feel like I can’t do that to her when she has made such good relationships with these doctors. When aetna and SSM Health started not playing nice a few years ago, all of us either cancelled appointments or paid out of pocket for two months, to stay with our providers until we could switch health care plans.

I also looked into SoonerCare, since without Ben’s job, we would definitely qualify to get it for Belinda, but their website says they prefer people stay in the state for healthcare needs. I think we might have a fight on our hands if we try to explain that Belinda needs to go out of state because she needs a pediatric surgeon to treat her rare disease, and not just an ENT.

However, our current insurance also prefers in state, but somehow the DC doctor’s office was able to prove that she needed to travel for the POEM procedure, so maybe that would work? The issue is, there are no pediatricians able to perform the POEM procedure in Oklahoma, but I think there are pediatric ENTs who can do the dilation. But have they done the dilation on a patient who has previously had a POEM? The DC doctors know how to keep the scar tissue to a minimum, since this affects her every day and will continue for the rest of her life. It’s important that the doctors do everything they can to ensure her esophagus is in the best condition it can be.

I have not talked about this publicly before because I don’t even want to consider it, but everything must be done to prevent end-stage achalasia. From the National Institute of Health: end-stage achalasia (ESA) is characterised by failed myotomy, massively dilated and tortuous oesophagus with nutritional deterioration due to progressive dysphagia and vomiting. In these subgroups of patients, oesophagectomy may be the last resort.

I am trusting God but just reading that description brings tears to my eyes and makes my stomach drop.

Please pray, I don’t know what to do.

A lady from the Children’s National surgery deapartment called this morning to update Belinda’s medical records in anticipation of the dilation procedure.

She asked about allergies, existing conditions, covid history, etc. She confirmed Belinda had Ehlers-Danlos and then asked if she also had POTS. I said no, as far as I know. I have been looking at finding an Ehlers-Danlos specialist who could examine her (and hopefully me) and give us some more info on what the diagnosis means for us and what other issues we could have or face in the future. But they’re in Tulsa so I just haven’t done it.

I really should since we recently learned we’ve met her co-pay and out-of-pocket for the year. We aren’t going to have to pay anything for Children’s National this time. I also have set up a wisdom tooth consultation and I need to get the Ehlers-Danlos eye exam set up. There’s not much year left!

Anyway, they’ll call us the Friday before the surgery to let us know what time.

I found a nonprofit online called Mercy Medical Angels, which helps people fly commercial for medical reasons. We applied and qualified, and I just got off the phone with a very nice lady from there. We had to pay a small amount to them ($55 for each round trip ticket) and then they booked the flights and paid the rest. Full price on the flights are $493 each, before tax and things. Both are nonstop Southwest flights between Will Rogers in OKC and Reagan in DC. The return flight will leave DC at around 4 pm, so Belinda and I should have time to visit the White House before we go – the only thing she requested for this trip.

The National Organization for Rare Diseases will be covering our hotel, which is just a few blocks from the White House. NORD may also be able to reimburse us for some ground transportation, but we will see how that goes. They restart at the new year, so they are almost out of funding at this point. I am thankful for all the help.

I also talked to someone at Children’s National, and we have met the deductible and max out-of-pocket for the year, so there will be no cost at all there. I’m glad Belinda is having this procedure now and not after January 1.

We will have to pay for meals and things on this trip, but most things are taken care of. This will free up money for her remaining medical bills and just help us to not be stressing over how we’re going to juggle all of this.

I really hope and pray that this will help with the additional issues she has had swallowing, and that it is smooth sailing from here with no more procedures needed for a while. But I want God’s will to be done first and foremost, and I am so thankful that He is lining things up for us financially.

Belinda is also having some stress issues, with her college classes and this being her senior year of high school. She was in a small fender bender at Walmart last week (seemed like it was one of those unavoidable things) and that is also giving her a lot of anxiety and stress. Please pray for her to feel better mentally and emotionally as we prepare for this trip and surgery.

I am including a pic of Belinda from Saturday, holding a chicken on the porch with her grandma. She wasn’t feeling great that day, hence the Snuggie.

We just had Belinda’s six month follow up with Dr. Kane. It was nice talking to him again. Belinda told him that she has been getting food stuck and regurgitating 1-2 times a day, and he said that in 15-20% of cases he’s handled, scar tissue can build up where the lower esophagus was cut and it needs to be dilated with a balloon. He said that will probably correct the problem. He wants Belinda to come to DC again for the procedure, and I agree because Children’s National truly was a better experience all around than we went through elsewhere.

We are not caught up yet financially from before. I don’t know yet how we are going to make this work. I’m tired.

On we go.

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.