Called the geneticist office this morning and the results are not in yet. They said that if they do come in before May 22, they will call and get her in faster. I also confirmed that nothing was waiting on us – I was concerned that maybe I was supposed to pay the $200 to the genetic testing company to get things moving. But we have done what we are supposed to do, and now we just continue to wait.

Then I called the pediatrician’s office and told them what was going on and they got Belinda an appointment today at 2:30 pm. It will be good to go to her, get her caught up on everything, and get her advice. She always takes really good care of Belinda.

So here’s why I mention Ehlers-Danlos in my posts.

Ehlers-Danlos is a genetic tissue connectivity disorder. Belinda has several markers for this. I read back in the hospital that one thing that can happen to Ehlers-Danlos patients is super-slow esophageal emptying. So it makes me wonder. Does Belinda actually have Achalasia type 2, or does she have Ehlers-Danlos and that’s causing slow emptying? And if it is the case, is the POEM procedure still the right thing to do?

The POEM procedure involves a doctor going down her throat and making incisions all around the lower esophagus so it won’t open and close anymore with eating. It will just be open all the time. It’s apparently the best thing for achalasia, but it brings with it other problems. And it’s permanent. So obviously I just want to make sure. But when I ask, I either seem to be blown off or they don’t understand what I’m asking.

I decided to wait until we get the results from genetics to push it, but I know I have to. I just want to be understood, heard, and answered to my satisfaction.

I know some doctors don’t like it when you look stuff up online, but I’m not stupid. I just need some clarification. I don’t think it’s too much to ask.

This picture is from Feb. 22, from the OEC Youth Tour Banquet. She sure doesn’t look sick, does she?

So since then, I found a very small facebook group for parents of children with achalasia, and that’s helping some. It is good to feel less alone.

They put us in touch with a pediatric surgeon in Washington DC, at Children’s National, who performs more POEM procedures on children than anyone else. They also said that we should have a pediatric surgeon perform the procedure, instead of an adult GI doctor, which is what the OKC doctor is. They said a surgeon is preferred in case something goes wrong. That makes sense to me, even though going to DC doesn’t sound great.

We never got in to genetics at Children’s in OKC, but we were able to get a referral from her pediatrician to another geneticist in OKC. This is who the pediatrician wanted to send us to in the first place, but the geneticist, Dr. Polan, had left Integris. But I found out through the Ehlers-Danlos facebook group that she had started her own practice.

Belinda went to Dr. Polan on Feb. 13, way up on the north side of OKC. She checked Belinda out and said that she definitely has a connective tissue disorder, and the genetic tests should show exactly what. She got samples and sent them out. The next appointment for results is May 22. However, that’s the latest they can get back, and if they come in quicker that can be rescheduled. Dr. Polan wants her to go to a cardiologist and I don’t remember what else. I need to get with her pediatrician and get that set up.

Oh, and a few weeks ago, the genetics company called and said our portion of this was 2500 and I said, obviously, I don’t have that and then they sent me a form to fill out and then our cost is now $200. And I think that’s not cool because what if I hadn’t asked? Everything is so expensive. I think the CT Scan was 3,000? Like the Tiger King, never going to financially recover from this.

We had a video visit with Dr. Petrosyan (Dr. Kane wasn’t there but I don’t know why) from DC on February 20. Dr. Petrosyan said we should get the genetic testing back first before scheduling, because if it is Ehlers Danlos, that can create heart issues and they need to know before anesthesia. That’s scary since she’s already been under several times leading up to this.

Anyway, so now we’re waiting on genetics and I’m going to call them tomorrow and see how that’s going and if the results are back. The swallowing is getting worse. She’s barely able to get anything down now. She was able to sip down a quart of hot chicken broth throughout the day.

As much as she hated the tube, she said she might want to get it back in because she is hungry. She said maybe a g-tube, which goes directly into the stomach near the belly button, because she hated the ng tube in her nose. But then she found out it would probably leave a scar and she doesn’t want that. We need to get this taken care of quickly.

Today I asked for prayer in church and I broke down and cried and was hard to understand.

I am ready for this season to pass.

My facebook post from November 3, 2023:

And then this facebook post, from December 6:

So that was a major disappointment. I really felt like this was the test that was going to help us, and they didn’t even know when it would be done. I wasn’t sure if I should take her to another location, or wait, or what. Not knowing what to do is such a huge part of all of this.

But then, on January 12:

We ended up spending the night at a hotel across the street, since the weather was so bad and I did NOT want to take a chance on missing the appointment. From my journal on January 14:

Belinda and I are in a hotel now, at Embassy Suites in downtown Oklahoma City. I feel a little silly about it because we came to be safe from the terrible winter storm that was supposed to happen, since she has a procedure at Children’s in the morning, but the storm wasn’t much after all. However, I did see several stalled cars and one that had slid off the road, so maybe it was the right thing after all.

The next day we were at the hospital bright and early! But boy, Belinda had a HARD time with this procedure. She thought she would be asleep again through it, but she had to be awake for it. She cried a lot but she had to do it. It was like having the ng tube put in, sort of, which she hated. They put a little numbing stuff in, and then they put a tube in her nose and down her throat to her stomach. Then she had to drink little sips and big gulps while the tube tested the pressure. Dr. Altaf was surprised and told us so. With her other tests, things looked normal. But this was not normal.

Belinda also had to regurgitate right after the test, because she had to swallow a big gulp of water and it got stuck. They didn’t have a vomit bag in there! I quickly dumped out the cup in the sink and she used that. You’d think they would have been prepared for that to happen. I guess achalasia is very rare though.

My journal on January 16:

Yesterday the motility test showed that Belinda’s esophagus is very abnormal. Dr. Altoff’s prelimiary diagnosis is Achalasia type 2. She has another barium swallow study on Thursday now, and we’re trying to get her genetic testing pushed forward, to check the Ehlers Danlos possiblity before any surgery. She had a hard time of it but she did a great job. Then that night she tried to do a somersalt over my footboard to be fun and lighthearted and it was already broken and it completely broke and she fell. And then she cried and cried. I know it was good for her to get it out but poor baby.

My next facebook post was Jan. 30. This was a hard day.

Facebook post from Feb. 7:

The new doctor, Dr. Rumman, told us that Belinda would be a fine candidate for the POEM procedure, which is good news.

Facebook post from February 9:

They also said she might need antibiotics for her left lung, and she was coughing a bit, but her pediatrician said we would wait and see how it goes. And it went fine.

Continued in Part 4

My facebook post from Aug. 31, 2023:

And Sept. 1, 2023:

Sept. 5, 2023:

She had to have the tube in her nose for the first day back at homeschool co-op, on September 11.

Facebook post from when the ng tube came out. She did a big face cleanse afterward:

Continued in Part 3

Belinda believes she has been having swallowing issues for about three years now. When she first mentioned it, Ben and I would tell her to chew her food more, or drink more water with food. He and I have always had problems where food gets stuck in our throats, so we didn’t worry about it. She didn’t make much of a fuss.

After a while, she began complaining that she was throwing up a lot. She was also going through some anxiety and depression over issues with friends, so I thought she was saying that to get out of things. I didn’t see any evidence of vomit. When she told me it was in the bathroom trash can, I would look and there would be just chewed up food in there. I told her that wasn’t vomit, and she didn’t push it.

Then we were at our homeschool co-op and we were at lunch. Belinda was eating, and then she stopped and sat very still. “Are you okay?” I asked and then she held up a finger. And then she crossed the room and discretely regurgitated in the trash can. And then suddenly everything horrifyingly clicked into place.

We went to her pediatrician, Dr. Cosby, shortly after. Looking back at emails from the doctor’s office, I believe that was in September 2022. Dr. Cosby thought Belinda might have reflux, and prescribed medication for her. Belinda took it and it didn’t do anything. So she got a different prescription. It also didn’t do anything.

After this, Dr. Cosby referred her for a swallow study. It took a while because first they had her down for a regular swallow study, and then realized she was supposed to have one with a speech therapist present. So that happened on March 29, 2023 at Integris Baptist. Belinda drank water and ate crackers while they looked at her with an x-ray. The techs all discussed how off her results looked, and they kept having her swallow to try to get everything down. It didn’t go down.

From there, Belinda was referred to the OU Children’s gastroenterology clinic. She started seeing the Nurse Practitioner, Jacee Harcourt, who also thought it was reflux and put her on another medicine. Around this time I had to coach Belinda to not say “throw up” or “vomit” anymore because they always zoomed in when she said that because they thought she might be bulimic. Instead she would say she “coughed it up” or “forced it up.” After the medicine for reflux also failed, Belinda had an Upper GI Endoscopy on August 3 at Children’s.

In late August, Belinda couldn’t swallow anything and she almost fainted at dance and I got scared. She told me she hadn’t been able to get any water down either. I was able to get an appointment at Children’s with her and got her there they next day. When they realized she had lost 30 pounds, they admitted her to the hospital. We didn’t even get to go home and back. They got an IV in her and started fluids. My notes say she had a Floroscopy Upper GI on August 24. She also had an NG tube put in during the hospital stay, and I don’t know if the Upper GI was part of that or if they were different procedures. I was just glad that they were taking this seriously.

I finally mentioned what she’d been going through for the first time on facebook, on August. 29.

A friend told me this reminded her of her sister’s Ehlers-Danlos Syndrome. I didn’t think much of it (lots of people have told us about their swallowing issues during all of this) and then I googled it and a person was stretching their skin away from their face, which Belinda can do. So that was startling. I mentioned it to the doctors on call and they definitely did not think much of that. I felt shut down and unheard.

Yuck, looking back at facebook I reread after this how much trouble we had with the home health people. First it was terrible finding one with our insurance, and then it was terrible getting the supplies we needed. It’s awful that things have to be so stressful when you’re already dealing with so much. I did get help from a homeschool friend who has a daughter with a g-tube, and she gave me a lot of reassurance and advice. I’m so thankful for that.

Anyway, we met Dr. Altaf around this point. Both Dr. Altaf and Jacee Harcourt seemed to believe Belinda had Rumination Syndrome. This is a rare disorder where basically the person swallows food, then throws it back up, and it’s a mental thing but they don’t realize they are doing it. I did not accept this because she wasn’t even getting the food to her stomach.

Sometime in here, Belinda’s cat Rosemary pulled the NG tube out and we had to go to Children’s and get it put back in, which was traumatic. She kept it in until partway through October, at which time she had gained the weight back and the doctors allowed her to remove it. She did it at home and I videotaped it and that was a wild ride.

I really disliked running the feeding tube machine and keeping everything clean and taking care of it. But I had to do it. She had to have feedings starting at 6 am and going every three hours until midnight. I know she took it out shortly before halloween because she was happy that she didn’t have to have the tube in her nose with her costume.

Jacee Harcourt told us about something called a Motility Study, so we got scheduled for that with Dr. Altaf. And then we went in for the appointment and Dr. Altaf didn’t want to do that, he wanted another barium swallow. So Dr. Altaf ordered at Fluoroscopy Esophagus Barium Swallow on November 3. Again, he said it looked fine. Still, we pressed. So he scheduled the Motility Study, which is also called a GI Esophageal Manometry Test. And all this time, Belinda was choking several times a day.

Here’s part of what I wrote in my journal about that day at Children’s:

Today was harder to be calm and cool and do my goals for this month. I did okay, considering the things that happened. First, we had to get up early to have Belinda at the hospital at 8:25. We got there in the nick of time, but then I got confused and thought we needed to take the E elevator to get to 9E. I had remembered how we took a special elevator to get to the right spot when she was in the hospital, and also how I took the L elevator to 9 once, and ended up in a weird surgical area and had to get help from a janitor getting out. So we were directed to E, but that ended up being Presbyterian hospital and was not right. So we finally got to 9E and it was the same old gastroenternology clinic we’ve always gone to. And we were 20 minutes late. They were cool though. We met the new doctor and he decided to have Belinda do another swallow study instead of the motility study. That was hard to hear because we’ve been waiting so long for this. But we did the swallow study right then. And then it showed the swallowing going a lot better. But I’m not convinced it’s really better because she’s still choking 2-3 times a day. I know they think it is rumination, but I don’t. I’m just tired of all of this. So now we don’t go back for another two months. At least she doesn’t have an NG tube any more! Can you imagine if we’d managed that this whole time and then we didn’t get the study? I do need to call Lincare and get rid of their equipment. I don’t want to pay to rent it any more.

Continued in Part 2

So my youngest child, Belinda, has been going through some health issues. I had been posting them on the caringbridge site, but since I logged in only to write, I didn’t know how prominent their requests for donations were appearing to our friends and family, so I decided to copy and paste them in here.

My original caringbridge post:

I’m starting a CaringBridge for Belinda, as we deal with her achalasia diagnosis. I’m hoping to go back and look at dates and what’s happened in the past, then post all that here to have all the information in one place.