Author Archives: Regina Garvie

Belinda is all grown up!

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So she is now 18. Hard to believe! She’s an adult, which now means that I no longer have automatic access to her medical records. That’s going to be a hassle to get through, but I know we can. Belinda said that she does not want to be in charge of appointments and things, understandable, since she’s about to start college. She’s signed a medical power of attorney for me, and also a HIPAA release form. We got the power of attorney printed at the Mustang Library and two of the librarians signed as witnesses, which was super nice. I made a few copies of it but now I really need to get online and upload it to all her doctors and pharmacies and insurance and all that. Sounds less than fun!

I spent a lot of that same week following up on the bed delivery. The home health company wanted to bring it to our house to show us how to do it, and then we could take it to Alva. I did not want to do that since the reason we selected this home health company is because they said they would have no issue taking it to Alva and setting it up there.

On Monday, August 4, Belinda and I both had appointments with the internist in Tulsa. With everything we had to do that week, we opted to do virtual appointments which isn’t ideal but it was better than driving to Tulsa. Belinda talked to the doctor about her headaches, which the doctor thinks are not migraines but instead two different types of headaches. She recommended a medication I’d taken before.

On Tuesday, August 5, we had one last appointment scheduled with her sweet pediatrician, but then we got so busy we forgot and missed it! Belinda was sad about that but we really just saw her last month, and I told Belinda she could tag along next time Sarah goes and say goodbye then, and that helped. That’s what Lenora had to do too, with Bennett, because I didn’t even realize at that point that their birthday would be a hard cut off. Their pediatric dentist kept them through college so I thought that was the norm.

Wednesday was our birthday! She wanted to go get birthday freebies so I took her to Mustang and Yukon. She got something from Starbucks and Ulta, and she and I both goth something from Sephora. We lunched at Chili’s and I got a free dessert, but we took it home and shared it later that week. We were too full! That night she had a few friends over and we had cake and ice cream. It was a nice evening.

On Friday, August 8, Belinda went to see her new general doctor. This doctor has been my trusted health partner for years and years, and now all three kids go to her. She has always been wonderful to me and my family and I’m very glad Belinda is in her capable hands. We discussed the prescription from the internist and Dr. Manning said that the medication could cause memory issues, so she wouldn’t recommend Belinda start taking it right when she’s about to go to college. Instead, she told us about some supplements that she wanted Belinda to try first. So we ordered those and hopefully that will help without negative side effects. Both girls went to the therapist later, so we spent about three hours at the clinic there. It was Sarah’s first time but Belinda has met with this therapist for several years. We convinced her to set up some zoom calls so she can continue with him, at least while she is starting out away from home for the first time. I’m hoping she keeps up after that, at least monthly or so, because he has been a great resource for both Lenora and Belinda. I know he truly cares about both of them.

On the evening of August 9, we all went and watched Sarah march with the high school band for the first time performing. She did so good and it was a lot of fun. The girls had snow cones and Bennett went down on the field so Sarah could teach him how to march and hold the clarinet. We got a lot of video and photos of that. Sarah really didn’t like band when she started band camp two weeks before but I think it’s starting to grow on her.

I kept texting home health and finally on Monday morning, they said they could meet us that day. We had to rush out of the house within 30 minutes and even then, we got there after they said they might get there, but they were there a little late too. We got permission for her to get into the dorms early and the guy, Ryan, was super nice. He got the bed all set up and we also took her refrigerator and microwave too. Her suitemate was there but she was in her room, and when Belinda finally knocked on the door to say hello, the suitemate had apparently left. Belinda and her suitemate each have their own private room and they share the outer area, which is the bathroom and a little entry area. We were surprised to see that they have Belinda in a handicap-accessible room, with grab bars and a permanent seat in the shower. Her disability doesn’t really require that, but I guess they didn’t have anyone who needed it more than her. Most girls in the dorm there have a roommate and then four suitemates, but for Belinda and her suitemate, it’s just the two of them. I hope they get along really well and become good friends!

Belinda had a work study interview at the college library at 2 p.m. that day, so we also went and did that. It was originally a zoom call but since we were in Alva she went in person. And later in the week they let her know she got the job! I’m really happy for her. My friends who worked at the library really seemed to enjoy it, and it was a great opportunity to study or take care of homework in the down time.

The girls got back to school haircuts on Wednesday, and now it’s Friday! Belinda wanted to finish moving in tomorrow and then I saw on facebook that there is a mandatory freshman orientation at 8:30 am tomorrow! We were planning to leave about 6 a.m. tomorrow, but now Belinda and I will leave at 5 a.m. and everyone else who is coming to help move can come later. She’ll be done with orientation about noon. She’ll also be able to turn in her FERPA form, so I can access her school records. I’m so glad I saw that post online! Belinda said she didn’t get an email about it. I’m wondering if it is because she already has 31 hours, because of her concurrent enrollment during her high school junior and senior year, but regardless, we know now. I think they would forgive her for missing but they also take a photo of the entire freshman class and I definitely want her in that picture!

She wants to come home again Saturday night, and then serve in the nursery at church before going back to Alva. She thought she would drive herself but I don’t want that. I want to go there and fuss over her before she stays there. So two Alva drives this weekend.

Oh, how I will miss her. She’s coming home weekends but I know it won’t be enough. It never is.

Well, I’m glad I got this updated. This blog has come in very handy when trying to remember facts and dates about Belinda’s medical history. Tomorrow we go to Alva.

Along comes Lenora

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And here I thought we were surely going to get to the bottom of the Healthcare Highways debacle. Lenora just brought me a letter from an office visit she had on November 1, 2024 (the day the super-expensive month of COBRA started) and of course Healthcare Highways has been denying the claim of $1,015. I had her take it to Ben and I guess we will either attempt to call them ourselves or try to get Kalee to advise us. This was unexpected, but honestly, not surprising.

On the Belinda front, I contacted NWOSU and they said the bed could be delivered anytime after August 4. I called the home health company and they said they’d call me back with a day and time because, obviously, we’re going to have to drive to Alva to meet them there and sign paperwork or whatever. I hope they don’t ask us to do it on our birthday.

Sooner Select, Mercy Medical, and to-dos

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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!

Medical Debt, AGAIN!

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So I’ve had a collection agency trying to call me. They left a few messages and I tried to call them back, but then a machine answered that call and told me to wait for the next available agent. When the lady got on the phone she went through the huge rigamarole of information I needed to hear, and then I found out that the debt was from the Children’s National procedure in November. The one that we’ve been struggling to get the hospital and the old insurance to play nice on. So I got off the phone with her and called Children’s National. That lady told me that they had been trying to call insurance and they couldn’t connect with anyone. Which is interesting, seeing as the insurance company says the same about Children’s National. So this lady starts rattling off how we need to contact the insurance company and have them send an EOB and before she hangs up I get a chance to respond and I tell her that I have the EOB, Ben’s old HR rep sent it to me, and I sent it to Children’s National on June 2. She asks what email I sent it to and I tell her, and it’s the correct email. So she tells me to put Attn: Portia on it and send it again. I made sure to forward the original email to Portia, just to show that I did send it correctly the first time. And even if I didn’t put Portia’s name on it, I did put my name and Belinda’s and our birthdates, and Belinda’s account number so it really should have been sent to the correct person. Ridiculous.

Portia responded with two emails. First she asked for the physician EOB and said the one I sent was the hospital EOB. Ten minutes later she sent a second email that said “Email forwarded to our follow up team for further review.” So I have no idea what EOB I sent and when I open the file I don’t quite get it. So I forwarded both emails to the HR rep, and we’ll see what she says.

Oh, and bonus, now our credit score has gone from Very Good to Very Poor. A fun bonus while we’re also having financial issues.

Seven fillings

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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.

Rerun

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Today I started reaching out concerning Belinda’s upcoming procedure in Washington. There’s no guarantee Humana Healthy Horizons will approve it, but I need to get my ducks in a row in case they do. So I contacted the National Organization of Rare Diseases, regarding Belinda’s Rare Pediatric GI Medical Assistance Program funding, requesting assistance with lodging and ground transportation while we are in Washington, and I contacted Mercy Medical Angels for assistance with the flights. I’m already tired of flying! Hard to believe since it took me so long to take that first flight but now I am super over it.

NORD funding is not guaranteed if they run out before the end of the year. I don’t know if there will be money there for her this time. And she will be 18 then, and I’m not sure how that will affect the pediatric part of the program, or the additional flight ticket for Mercy Medical Angels. But I know it will all work out.

I am so appreciative of organizations that help!

December procedure

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Belinda’s next procedure is set for December 17 in DC. I really wanted Belinda to go in September so we could be at the Pediatric Achalasia Awareness Night, but Belinda was adamant that she did not want to miss a single second of her first semester at Northwestern. The couldn’t do fall break or Thanksgiving break, so we set it for Christmas break.

Since Belinda is on Soonercare, she has to get special authorization to travel out of state for her procedure. On paper the procedure is something that can be here in Oklahoma – but we and the doctors believe she needs to have it with the specialists who have been treating her. The other thing is that these specialists are the only pediatric surgeons doing POEM, but she will be 18 in December, and although she’ll still be on Soonercare, I don’t know if they will take the pediatric part into consideration since she’ll be an adult. I wish we could just do the procedure in August before her birthday and get it over with! Anyway, a lady at the hospital will be working with Soonercare and Belinda’s doctor to get it approved. That’s another thing – Belinda will no longer be with the pediatrician that’s treated her since birth by the time the procedure comes around. But she will be with my doctor, and she is wonderful so I believe it will all be fine.

Anyway, even if it doesn’t happen, I still believe God is in control. And maybe Ben will have a job with benefits then and it will all be different anyway. There’s no point in worrying, even if my mind does think about these things.

I do need to focus on what I can work on, like figuring out if we can get assistance again from NORD for lodging and travel in DC. We may have to work on something new since her grant is for pediatric gi rare diseases, and she won’t be pediatric anymore. Hopefully it will just count through the rest of the year. We also need to contact Mercy Medical Angels. Again, since she will be an adult now, they might not be able to help with both of our flights. But we’ll cross that bridge when we get there.

In other news, the durable medical equipment company called we discussed Belinda’s adjustable bed. They asked if they could bring it Thursday, but I reminded them it was for her dorm room. Next week the college will start assigning rooms, and when we know the room, we will see when we can meet in Alva and get the bed set up. They said the mattress wasn’t very comfortable, but I think we’ll just have to see what it is like and then get something different if we need to. Probably we could try to get a better mattress or topper through Soonercare because of the Ehlers-Danlos…but if we can swing it on our own, I’m just going to do it that way. Less stress for Belinda.

Financially we had a bit of a setback because our propane tank had a leak and we lost about 500 dollars worth of propane over the course of two weeks. We didn’t realize until we ran out. Right now we don’t have hot water but it’s not the end of the world. Ben is planning to fix the pipe. But we also owe around 800 to the propane company and it has to be paid before we can get more. So I called the propane company to ask if we could do some sort of payment plan and get a small amount of propane in the meantime, after the pipe is fixed, and they said that would be fine. I was very thankful. We have done business with them for almost 30 years and it is so wonderful when you have that kind of relationship. We got off the phone and I was thinking about that, and then they called back and said they’d discussed it and they were going to pay for half of what was lost – taking about $250 from our bill! I didn’t even know what to say – I was so tongue tied as I was thanking them! What a kindness!

God is with us, every day. I am thankful.

Also, here’s a weird picture Belinda let me take at the Ripley’s Believe it or Not Museum in Gatlinburg, Tennessee, when we were there for her dance nationals two weeks ago. I actually meant to post an album on facebook, I guess I should get on that soon. If you want to see a bit of what Belinda’s other rare disease, Ehlers-Danlos Syndrome, looks like…this is part of it. At least she can’t make her eye pop out like the museum pic guy.

Bills

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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!

Bed times again

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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.

Dentist!

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So today we finally got to go the new dentist and get that second opinion on Belinda’s teeth! It went very well. You may recall that Belinda saw her pediatric dentist six months ago and he said he saw two little shadows of cavities that needed to be watched, but that was all. Four months later, she went to a new dentist and they said she had FOURTEEN cavities. I was shocked because her oral hygiene is excellent. I asked if any of them were shadows that might remineralize and he said no, they all needed to be fixed, and schooled her about brushing her teeth properly. As if she doesn’t!

So we got the insurance to approve a second opinion, but the place we were referred to had a two month wait, ugh. But today was the day and we went there and everybody was so NICE! Long story short, the dentist said yes, she does have seven cavities, but that’s it. He showed us the difference between the ones that need filling and the others that may remineralize. He totally believed that Belinda brushes and flosses. He looked at her teeth and said it was probably due to changes in what she drinks, which totally checks. After growing up with mostly water, she started drinking Starbucks and H Tea O, plus drinks at the coffee shop she works at. He said that even if it’s not a sugary drink, it can change the mouth to an acid environment for hours afterward. So Belinda is supposed to floss twice a day now, keep using the prescription toothpaste, and either brush her teeth or swish with water after those kinds of drinks, or cut back on them entirely.

He said it wasn’t from the reflux, hooray! He explained what the enamel would look like if it was that, and showed how her cavities weren’t the same. He said that her old dentist probably was watching these areas, but the acid and sugar environment in her mouth changed everything all at once. The last dentist didn’t even explain about the enamel differences. I’ve been thinking it was the reflux all this time!

Anyway, we scheduled two appointments to get them filled. And then I made first appointments for me and for Sarah because we really like this place! Belinda and I both went out to the car with big smiles on our faces. Everybody there was just so nice and geniune. A great experience!