Category Archives: Belinda

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.

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.

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.

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!

Bed time 2

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So Dr. Cosby had to get on some hideous online website to submit the request for the adjustable bed. And when she put in the insurance carrier, it said they didn’t accept that insurance carrier. Even though our insurance carrier told us to use them! So, I have to call insurance and see what to do next. Like Dr. Cosby said, at least we started early!

Bed time

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Today we went to see Belinda’s PCP, Dr. Cosby. She is in a new location and it was very nice to see her! We talked with her about a prescription for an adjustable bed, so Belinda can have that in her dorm room. We already sent the requests to the college from the DC doctors, but the durable medical equipment request needs to come from her doctor in Oklahoma. I told her which one the insurance company told us to use, and she’s going to take care of it!

Dentist

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Belinda went to a new dentist on Monday. Her pediatric dentist left his practice in November, and Belinda had never been to another dentist in her entire life. Since her insurance didn’t have that office in the network, we decided to go to a new dentist entirely. We chose one just over the river in Mustang. They’re all very nice and everything seemed fine…and then they said that she had TWELVE CAVITIES. Well, obviously I was very sus of that information, since Belinda is great about oral hygiene. She always brushes twice and day and flosses once a day. Now, I knew that her pediatric dentist had said she had two shadows that needed to be looked at, but now, four months later, there are TWELVE?? I asked a lot of questions but the dentist seemed positive. He also said that these had been there for at least two years. Um…no.

So on the way home I was talking about second opinions and that’s when Belinda wondered aloud if it could be from the achalasia, like acid going into her mouth. I hadn’t even thought of that. How awful.

I went home and got on the achalasia parents’ facebook group and some people there said their kids had the same issue. I still contacted insurance about a second opinion, just to be sure, and they’re supposed to get back to us early next week about that.

If it is acid, I’m hoping that pepcid that the allergist and internist want her to take will help with that. And I am thankful that we’re finding this out now, before things get worse. We’ll just have to do whatever it takes to protect her teeth.

Another thing to be thankful that it happened before college, and before she’s 18, so I can handle it all without extra difficulty.