I just talked to Children’s National and Soonercare has approved Belinda’s out-of-state procedure in December! I thought it would be a big struggle but the lovely lady at Children’s said she applied on Sept. 18 and they asked for additional material, then approved on Sept. 19!

Procedure covered by Soonercare ✅
Flight covered by Mercy Medical Angels ✅
Hotel and Ground Transportation covered by the National Organization of Rare Diseases ✅

What a relief! I am so thankful that everything is ready to go for the procedure!

The state needed me to send uploaded documents for Belinda’s work study, but I didn’t get that from Belinda until just a few days ago, since work study is only paid once a month and we had to wait for that. In the meantime, they flagged our account and now her coverage is set to stop at the end of the day. However, they said that if she has an appointment, call 48 hours in advance and they would look at the document right away and approve it. Or we can just ask the doctor to wait and file it when it’s back on. The coverage will still pay those back things when it comes back. She doesn’t have an appointment until the allergy doc on October 17, so hopefully they’ll have it done by then.

We had a super busy weekend over the last three days. Friday was Tuttle homecoming, so we went to the parade and then game afterward to watch Sarah and the band. Saturday was an all-day band competition, but Karlene took Sarah to that because we left the house around 6 am to go to Family Day at Northwestern. It was a nice day. We left before the game and Belinda and I went to the band finals while everyone else went home. I fell down once, tripping in a hole (I also fell on the bleachers two weeks ago on the Tuttle vs Noble football game. I am such a mess!)

Then Sunday was the final performance of Murder’s in the Heir at the theater in Tuttle. Sarah had a small nonspeaking part, since she had to miss two performances and several rehearsals. It was really nice of the directors to make a spot for her. We all attended and she did a good job. The show was really fun!

Our cat Nutmeg is wearing a cone. She had an eye infection and it just wasn’t healing, despite the drops we got from the vet. Turns out she was messing with it and scratching it herself with her front paw, making it worse. So now she’s in a cone and she’s not happy with it. The eye still looks bad and it’s been three days. I’m not sure when I’m supposed to call the vet again.

I need to write some stories for the newspaper. I didn’t do any last week – I was so busy I actually forgot until it was too late. I know I need to do some now and I suppose I’m kind of putting it off.

Karlene just got here with Mom’s prescriptions, so that’s all I’m writing.

Yesterday Belinda went to the emergency room – but she meant to go to urgent care and it really could have been treated without emergency services.

She texted me during the day and said that her stomach was hurting. Turns out she took some matcha tea in a little bottle to her classes but didn’t actually drink it until she got to work at the library, three hours later, and there was milk in it. She said it was warm in her bag the entire time.

Her stomach hurt so bad that she finally left work early, and on the walk back to the dorm she decided she needed medical help. I saw online that Share Medical Center (the hospital in Alva) had an urgent care clinic and they were still open, so I sent her that way. Well, she went in the wrong door and ended up in the emergency room instead of the urgent care, so they took her blood and sent her out with a prescription and advice, I guess. She called me once, to ask a question, and I wanted her to put me on speaker so I could listen in, but before I could say so the doctor came in and she hung up. I was a little worried but she handled everything herself and I’m honestly very proud of her. She’s been used to taking a back seat when it comes to her medical care and I think this was a good learning experience. She went to Holder Drug downtown and picked up her prescription.

I doubt I would have been as cheery about all this had Belinda been on private insurance instead of Soonercare. Next time she knows to make sure it is urgent care!

So I have been working with Mercy Medical Angels, who provide flights for those with medical needs. It’s based on income, and they needed our tax return. I sent that and it said we had too much income, but of course we don’t anymore, so then I needed to send them the proof of Ben’s job loss, which I did. Now they want two months of bank statements. I can do that but I’m not 100 percent sure where they are, so I’ve got to go through some stuff. I did ask the credit union if they could email it to me, and it was going to cost six dollars, and so I decided I’d try to find it myself on principle. Although after I look for a while, my indignation on being charged may smooth out.

Another thing I’ve been doing is looking into ways Belinda can receive some sort of disability benefits. This is tricky because although I want her to have help with expenses, I also don’t know if she’s truly a good candidate. I want to find out if she would be eligible for Medicaid during college and after, even if she works. I’m not sure that’s how it works, but when we were having to pay out of pocket expenses while she was under Ben’s old insurance, we paid more than $5,000 in a year for her care. It was the same the year before that, when we started trying to figure everything out. Surely there is a way to receive help so she won’t be financially crippled by her rare condition for the rest of her life. I contacted a very nice lady at something called Sooner SUCCESS. From their website: Sooner SUCCESS collaborates closely with both public and private sectors with the goal to promote a comprehensive, coordinated system of health, social and educational services for Oklahoma children and youth with special healthcare needs in their local community. I asked her about TEFRA, and she has sent me some information, but I’m not sure it applies. Another quote, from a state website: TEFRA (Tax Equity and Fiscal Responsibility Act of 1982) gives states the option to make Medicaid (SoonerCare in Oklahoma) benefits available to children with physical or mental disabilities who would not ordinarily be eligible for Supplemental Security Income (SSI) benefits because of their parent’s income or resources. This option allows children who are eligible for institutional services to be cared for in their homes. So Belinda is on Medicaid now, because we are very low income at the moment. But when Ben gets a job, she won’t be eligible for Medicaid. I hoped TEFRA would be the answer, at least until she turns 20, but Belinda doesn’t really seem to be someone who be eligible for institutional services.

I’m guessing she’s going to end up falling through the cracks, and we’re going to dedicate a large amount of any future income to her health care after our income gets back to a non-poverty level. I’m still going to keep researching. At least after the show this weekend. We have another weekend of shows, but I think I will feel less obsessed with perfecting my lines at that point.

I have quite a few things I’m going to need to follow up on for Belinda. It’s been quite a busy couple of weeks, since the show I’m in, Once Upon A Mattress, opened last night. I did okay and only missed one sentence of my biggest monologue, and it didn’t really change anything. I’m going to go over my lines again in a bit, but first I want to make sure I don’t forget the things that are to come.

– Follow up with the HR rep to make sure there’s not another EOB I need to send;
– Find out if our credit score can be repaired once the bill issue is settled;
– Belinda’s dental cleaning on August 7;
– Start finding out what we need to do so I can continue accessing her medical records;
– Find out if Belinda’s bed can be delivered early and what that entails;
– See if Belinda can get chiropractic care for her headaches with the internist’s referral;
– Send two months of bank statements for Mercy Medical Angels for Belinda’s flight;
– Keep looking into what medical benefits Belinda may receive in the future.

And for fun, here’s some pictures of me with Belinda and Lenora after the show last night!

Belinda had two dental appointments, July 7 and July 15, to get the seven fillings taken care of, and she did great. One of the cavities concerned the dentist because it was deeper than he thought, and he said it might end up needing a root canal, yikes. I told Belinda she should really stick with water and ditch the drinks that are changing the pH in her mouth!

So this week she started feeling pain in that tooth while she was at work, and told me that it was pretty bad. So we got a quick appointment for her, and she went in on the 24th. Turns out the filling just needed to be shaped down a bit, and as soon as it was done, she said it was already feeling better. So that was great news.

So now Belinda has a cleaning set for August 7, one day after her birthday, sniff. She’ll be an adult then. She said she wants me to still take care of her medical stuff while she transitions into that, so I suppose she’ll have to sign documents allowing that. I’m glad it will be done before college starts, and then we can try to get the next one scheduled on a school break.

We got bills from two of Belinda’s doctors this week, the internist and the podiatrist, for BIG money amounts. Both claims were rejected by Humana Healthy Horizons (Soonercare) because our account shows we have another primary insurance. Again.

Yes, Healthcare Highways is once again on our records. The insurance that we lost with Ben’s job in October (after spending thousands on COBRA for November, at least). Ben’s former HR doesn’t understand why it keeps happening. The company dropped Healthcare Highways at the end of 2024. Anyway, this makes it hard for Belinda to go to the doctor or get prescriptions.

So I called Humana Healthcare Highways and they’re going to look into it. That was two weeks ago. I called again Friday and they said to call back next week. Neat!

We’re trying to get insurance to provide an adjustable bed for Belinda for college, since she can’t sleep flat. Her doctor has written a prescription and Humana Healthy Horizons gave me a list of Durable Medical Equipment providers, so when her pediatrician asked for the place we wanted to use, I chose the one in Enid off the list, since I figured that was closest to Alva. So the doctor had to go through this clunky website to try to submit the prescription, only to find out they don’t take Humana Healthy Horizons anyway.

So I just gave the whole list to her doctor and told her to call the one she liked working with best.

Hope it gets worked out, she doesn’t do well sleeping on the wedge. She slides off and wakes up with her throat hurting from the acid. I’m glad we started working on this fairly early.