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.
My agent just let me know that she has the submission list ready, and we’re going on sub with The Last Letterboxes on Monday. I’m not sure how I feel. Hopeful, sure, but maybe also afraid to hope too much, for fear of the crash of disappointment that may come?
I want to finish the middle grade novel the month. Preferably this week. That’s pretty fast but I know I’m capable. There’s just a lot of other things happening right now, but when is that not the case?
Homecoming is today. If I get enough writing done to feel satisfied today, I might go watch the parade. We shall see.
I’ve never written that book that starts with the scene in the small-town parade that’s been in my mind for years. I wonder if I ever will.
How do you find balance when you have so many roles in life?
Yesterday, as I typed at the coffee shop and nibbled on my biscotti, I felt very much like a cool, put-together writer person. Then I leisurely left and drove over to the location of our SCBWI meeting. I got a text that my writing bff was on her way, so I parked, went inside, hit two pokestops, and then ducked into the ladies’ room.
And that was when my youngest small person called. Concerning something with my oldest small person. And then I had to go home. No delightful dinner with friends. No get together. No sharing, no meeting, no socializing. I had to go home. I used to let my husband deal with these things on my writers’ night, but now he has joined SCBWI as an artist and I can’t just dump it on him anymore. So I went home. I told him he should go to the meeting but he went home too. I cooked dinner. We watched TV.
I have to admit, I cried a little on the way home. It’s hard to completely understand what I was feeling at the time. I knew that I could no longer enjoy myself at the meeting, knowing that things were going poorly at home. They are my responsibility. And I felt like I had been selfish to go to the coffee shop instead of just going home after helping Ben. I always feel a little selfish when I go to writing things anyway, but I told myself I deserved to be a little selfish. That it was good for me, and for them. And it was good for my writing career.
But is it really? Or am I just telling myself that so that I can indulge myself?
As I drove (it’s like almost an hour to get home from there), I thought that maybe I just wasn’t supposed to really immerse myself into the social aspect of writing at this time. Maybe I need to wait until the youngest is grown. That’s only about nine more years.
I’ve been going through so much spiritual awakening and growth lately, and the thought of this doesn’t even really bother me right now. I believe that things happen for a reason, and that we can learn and grow from all our experiences. But what is this telling me? For the moment, I’m still going to the upcoming conference. I have committed to work at it, and I’m not going to let the others down. But I asked my mother to help me with the home fires, and she is going to. I don’t feel that I should ask her to do this every time I want to go have fun, though.
Yesterday I planned that today I would go to the library in the next town over and use one of their private study rooms to work on my wip. I was going to take my index cards and reconsider each scene of the novel and their order. I also planned on bringing a notebook and working on excursions for an upcoming trip we’re going on. I thought I might take the kids and let them enjoy the library, or I’d leave them at home together. By the time I got home, I didn’t think either was a good idea. If I can’t feel comfortable leaving them at home together, how could I have them at the library? I’d have to focus on them instead of my work, because I’m not sure I can count on any of them to be responsible for the others.
So now I’m thinking I’ll do the trip planning stuff at the kitchen table. Then I can make my son do his math at the table with me, because he basically needs to be stared at to get his work done. He’s several weeks behind. Again. I can’t focus on my writing, but at least some things will get done.
I feel like I sound like I’m making excuses to not get done with my work. I want to do my work. I just can’t seem to figure out how to do it. Every thing I try leaves me blocked.
I think I work better without anything around me. I used to have a lot of cute things in my office – stuff from Frozen, artwork I’d made and my friends had made, stacks of books, plus piles of papers, unsorted bills, and other things I’d accumulated. But when we renovated the office area (it’s part of a mother-in-law add-on at our house that we cleaned up for my parents if they need it) I moved everything out. And now all that is in here is a desk, computer, printer, trash can, shredder, desk chair, floor mat, comfy chair, lamp, bookcase that is half filled and orderly, and the little hassock that my printer is sitting on.
I also have my laptop bag, a small stack of pink index cards with the scenes from my work in progress, and three essential oil blends I got yesterday from an etsy seller that are writing related and adorable. Oh, and there’s a desk lamp, monitor, external keyboard, mouse, and two wrist rests.
The desk is packed full of stuff that I really should go through, but other than that, there’s nothing else. And I guess when I write it out it sounds like a lot of stuff, but it’s not, really. And it’s nice. It’s nice to have all this white space around me. Well, the walls are light gray but you get me. It’s very calming.
Of course, speaking of the walls I noticed my new desk chair has made a few marks on the wall behind me and I need to figure out how to get those off.
When I was a junior high kid, I got put into in-school-suspension because I was not doing my schoolwork. Most kids got in there for fighting or things like that but I got it for not doing any homework. The teachers knew I was more than capable, and I guess they didn’t know what to do with me.
I LOVED IN-SCHOOL-SUSPENSION.
The only awkward part was when people saw me at lunch or after school and asked where I was all day and I had to tell them, and I was embarrassed about it. But being in the little room off of the school secretary’s office where the big butcher paper rolls were stored? That was blissful. I just sat there, with no window out and nothing really to look at. The teachers gave me my schoolwork at the start of the day, and instead of having to listen to them lecture about it before I could start working, I could just read the instructions and examples and go for it. Instead of having hours of homework every night that was too bothersome to do, I got it all done in probably an hour and spent the rest of the day reading the novels I’d brought with me. I only got to stay in there for three days, and when they put me back into the classroom, I went right back to my old habits. Poor teachers.
But looking back, I can see that the distractions were hard for me in school. And it was dreadful having to listen to a teacher lecture when I could figure out what to do on my own and just get it done. I still prefer to read something than watch a video telling me the same thing. I really dislike weather videos on facebook. Just give me a few sentences so I can go on with my day. And instructional videos on youtube. No, written instructions please or, you know what? I think I’ll just figure it out on my own.
So, long story short, I didn’t know I had ADHD until just recently, and it’s interesting learning more about myself and my learning styles.
I know this was kind of rambly but that’s also okay.
So I downloaded an app last week, Habitica, and it’s going okay with keeping me more on track and organized. I’m not sure how well it will work long term, but for now, I’m doing okay.
I’ve gotten a lot more caught up on the things I need to do as children’s director at my church. I also have gotten the house a little cleaner and less cluttered. A lot to go on both things, but still. Also doing better with personal hygiene and maintenance, which is admittedly lacking. So for the past six days or so I’ve been flossing daily, remembering to take my medications, and getting more into my writing. I’ve done a creative thing each day and working on my manuscript each day (I did give myself weekends off for that, to avoid burnout). Writing on my lj or here counts as a creative thing, so woohoo.
Anyway, I got the mg manuscript completely plotted out, EXCEPT I don’t know what’s going to happen in one area and it’s annoying and blank. I mean, I know what the kids is going to accomplish but I can’t quite visualize how he’s going to get there. I did stream of consciousness writing about it, I did a walk and talk out loud in my driveway, and I’ve talked to the older three members of my family. Their suggestions were unsatisfying, unfortunately. I did finally think of something that is involved in it, and that’s exciting, but I still don’t have the details and I’d like to get those ironed out before I start. I think that might be what is stopping me from writing. Each of my works in progress have a blank spot and I’m not sure what to do with it, so I stop writing. I don’t know how I did this in the past. Maybe there weren’t any blank spots?
The only other big change is I’m not sleeping as well lately. It’s completely coinciding with this “being productive” thing so I obviously am okay with it but I wonder why. My brain wants to think about things again. And I don’t want to think about things. I want to go with the flow. But I also want to write. It’s a curious thing.
I’m trying something new. It’s the Habitica app. Allegedly it will help me be more productive, actually get things done, and be the person I’ve always wanted to be. So far today I have cleaned for 10 minutes, taken care of my emails, and ate a healthy meal. I’ve also showered, shaved my legs and painted my nails, which is kind of amazing, but I don’t get points for that. I would if I had set those things up as tasks but currently I’m still wanting to figure out the app, and I don’t want to get in too deep and then give up on the whole thing.
I’m also supposed to do 10 minutes of cardio, which is obviously going to be walking but I’ll try to be brisk about it, and practice a new creative technique. I don’t even understand what that means. It sounds like if I was an artist I would try a different brush or way of drawing or something. But I am a writer. I thought about it a while and decided that for me, I’m going to attempt to write a limerick, especially since it’s St. Patrick’s Day. Now, I’ve written limericks before, but not that often, so it is sort of a new technique for me. Also, my monthly goal list includes writing a poem, and this will take care of two birds with one stone.
And then I’m going to go in the kitchen and eat a tuna sandwich, which I think isn’t really eating healthy but also isn’t junk food, so I don’t have to take a positive or negative hit for the app. I’m such a perfectionist that I hope I’m doing this right but I think the idea is it’s supposed to work in a way that works for me, so I guess whatever I say is right is right. As long as I’m honest with it.
So, the limerick. I decided I’d just try to write it here, as part of the blog post. The tricky part is to make it funny without it being too awfully vulgar. Maybe I can write a funny one without any vulgarity. We’ll see.
There once was a lady so hairy,
That some called her legs wrong and scary.
She gave up on shaving
Instead started braiding
And hog tied her worst adversary.
Okay, I’m very happy with this!
Oh, the cleverness of me.
Anyway. I was dismayed to see that I posted in January but not February. I mean, having one blog post a month isn’t that lofty of a goal, but I failed. Anyway, on the brighter side, it’s not even the end of March and I’m doing it so we will leave the past in the past and focus on the now.
I haven’t been doing too terrible updating my planner. It’s probably not the best thing that I take my laptop to work each evening, because then I have to hook it all back up on my desk to work, and I don’t really care for that. I’d like the office to purchase a computer so I don’t have to lug mine around, and hopefully that will happen soon. But this is Spring Break so the dance studio is closed, so I can keep the laptop plugged in and not have to mess with it.
I also have a new-to-me TV on my desk, and that’s cool because I’m not hunched over like I was, looking at the laptop. The screen is a little bigger, too. I have new keyboard and mouse because I apparently lost the usb plug in thing for the old one, which is disappointing, but not super surprising. But the keyboard has nice resistance and is very clicky, which I like.
The office is tricked out with new carpet and there’s very little in this room now, which is probably a very good idea for me. I keep glancing out the windows, and I probably need to cover them up and just gosh-darn focus but it’s also nice to look out. I don’t know what I’ll choose. Nothing for now.
There’s no air conditioning at the moment, which doesn’t matter now but will in a few months. I don’t want the old window unit in here now that it’s so nice. I want real central air. I’m going to need to talk to the a/c guy I know and see how much it will take to make that happen. How will I pay for this? I don’t know but maybe something glorious will happen like a book will sell.
In my planner, I have several goals for March. I want to work on my current manuscript, particularly my middle grade vampire novel. I also plan to write a blog post this month, which is going nicely, thank-you-very-much, and to post something on my livejournal. My other goals are to write a poem and to read a novel. I’ve done okay with the one novel reading a month thing. I know it’s not a great goal but it beats my record for last year. I read The Secrets of Winterhouse in January and Under a Painted Sky for February, both by other clients of Rena’s. Hoping to read The Simple Art of Flying in March but I haven’t started yet. I have many more that I purchased with good intentions – most by my friends – but I didn’t feel like I was in the right state of mind. I might still not be, but one a month is working so far. And maybe it will help me get back into that state of mind, so I’ll feel more like a writer and less like a Netflix/Hulu/HBO Max/Disney+ watching zombie.
I have other things on my to-do list. Many of them are for church. One is remembering to pay for web hosting. Hopefully. One is a thing for the theater. I think the things for Easter, for church, are the biggest. I need to get anything ordered that I’m using for that this week so I get it on time. The egg hunt is one of the biggest things we do all year and I’m looking forward to seeing the kids run around and get eggs. We had thirteen in children’s church last week for Pajamas and Pie day and that was good.
I went to a funeral for a good friend from church today. There were so many people there. I wore my mask and so did the guy next to me but we were in a vast minority. Maybe most people are vaccinated now. I think I should still be immune but it’s still a good idea to wear the mask, I think. If nothing else, it makes others feel comfortable wearing theirs too.
Last month I had some small victories. I entered several things in the OWFI writing contest, including one rather saucy limerick, lol. I wonder what they’ll think of that one. I also wrote a first draft of a picture book biography, then went and visited her hometown, then revised and resent to Rena. Hopefully that’s going to be a positive thing.
Here’s what I still want/need to get for my office. Hoping that doing these last few things will help me stop procrastinating and get this show on the road.
–New chair. This chair is 20 years old and doesn’t have a high back. I want one with more support.
–Plastic mat thing to protect the carpet from the office chair.
–Wrist rest for the keyboard and the mouse.
–Microwave for the kitchen.
I guess I want to get some other stuff for the kitchen, like cups for tea and glasses for water, and a dishcloth, but this is the majority of it. I also want to get the porch screened in, but that obviously isn’t going to happen instantaneously or anything. I might want to get a new monitor. This one isn’t as awesome as I want because I can’t seem to adjust the picture on it, and it’s not quite the right size. It’s okay and certainly doable but it’s not awesome. Oh, and I also want to find some kind of piece of furniture to hold my printer. I don’t need a printer until the first of the month though, for critique group. I guess not even then, because we’re virtual for now. But eventually.
Eventually was my 999th word, so now I’m over 1,000. Wish it was as easy to write fiction as it is to blab on here.
Happy New Year!
It’s a few days in, but it’s not to late to say that, I don’t think. Lenora’s birthday is tomorrow, so we’re really not quite through the 12 Days of Christmas, and our holidays officially end in our house after Lenora’s birthday, which conveniently falls on Twelfth Night.
Anyway, not much to say, but I am back at the keyboard and I’m writing. I feel very positive about this year. I think this is the year that I make great strides in my writing again. I’m ready.