High Low Buffalo - July 2026

In this episode, Deonna and Rhandyl share the high, low, and buffalo (random thing that happened) from the last few weeks.  

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Transcript

​[00:00:00] 

Rhandyl: Hey, y'all. Welcome back to Raising Disabled. So today we're gonna do a high-low buffalo. It's been a few months since Deonna and I have recapped you guys on what's been going on in our lives, and it's been summertime and school's out. There's been a lot of - of things going on- ... traveling. So Deonna and I go through our highs that we've had, our lows that we've had, and then buffalo is just something random that we wanted to share.

So Deonna, what about y'all's highs? What has been going on with you guys lately? 

Deonna: Oh my gosh, we've done so much stuff. I was going back through since the last one, and I was like, "We've been on three trips since." 

Rhandyl: Whoa. 

Deonna: We've been in six different towns, so it's crazy. Dang. Which, if you have a kid in a wheelchair with any sort of medical equipment, it's quite the undertaking, but we've had a lot of fun. But yeah, we did end of school [00:01:00] stuff, which is n- not my favorite. I don't like- ... that time of year. No. I actually hate it. I don't know why, but it's just- It's a lot ... yeah. It's like all the busyness of Christmas and none of the fun, so I don't like it. 

Exactly. But my kids were happy to be done with school. But- ... since we've talked last, I went to my cousin's wedding, which was cool. Any time I get to get away for just by myself, to go do- Yeah ... something like that- Oh, so it was just you ... it's just like a vacation. Yes. That's awesome. Oh my yeah, it was just me. Nice. I went to Artesia for that. So that was cool to get to see cousins and stuff that I very rarely see- ... but grew up with, in the same town and everything, so that was fun.

But I went to Artesia another time to my hometown by myself to go watch my nephew graduate kindergarten, which was fun. Aw. And it was it was kind of bittersweet since my brother's passed away, like going- Right and seeing... [00:02:00] I was trying to just disassociate from those two things but he's so cute and amazing, and so it was cool to watch him graduate. I think he said when he grows up, he wants to be like a ninja artist or something. Oh, hilarious. So that was hilarious. That's perfect. Other kids were saying policemen or- Oh, yeah you know. The typical. Yeah. So he's going in a different direction than everyone else, but it was funny. Love it.

And then my other nephew graduated high school. So another trip we went on as a family of four was to go see him graduate, and so we had never been to my sister-in-law's house since they moved there because- Oh, wow. Yes, life ... you know, they live way out in the country. There's no hospitals around. So for a while it was like I don't know. Yeah, it's scary. We just were nervous about it. But we feel a little better about that stuff now, but we went and got to see their ranch and where they live, so that was cool.

And after we did that, this was all in one [00:03:00] trip. We went and watched my nephew graduate, then me and Allie and one of our nurses, Macy- we went and saw Wicked on Broadway in Dallas the next morning. Whoa. So I drove in Dallas in the pouring down rain to go see Wicked. 

Rhandyl: Oh, wow. 

Deonna: But yeah, it was quite the- 

Rhandyl: And that's and anyone that doesn't know, Dallas traffic is horrible- 

Deonna: It's pretty bad ... 

Rhandyl: all the time. And in rain, I can't imagine. 

Deonna: I would say in Texas, it's the worst. I- ... i've driven in all the major cities, and I hate driving in Dallas. I'll drive in Austin, San Antonio Houston, it doesn't bug me, but I hate Dallas driving, but- 

Rhandyl: Dallas and Austin are like, ugh.

Yeah. My two least. Yeah. 

Deonna: Austin is kind of bad, too. 

Rhandyl: I mean, like- It's getting really, really busy there. 

Deonna: Yes. But I'm more comfortable driving in Houston, which is funny- But that's so- ... 'cause it's supposed to be the worst. I know. But- No, it's not ... doesn't bother me. I f- 

Rhandyl: it is not near as bad. Yeah. 

So [00:04:00] how was Wicked? How was that? Did Allie love it? 

Deonna: It was so fun. She had a blast, and I mean, we love that musical. I had seen it in that exact same place, 20 years ago- Yeah ... when it came out, but we're super fans of it. We've got a million T-shirts of it. We listen to the soundtrack 24/7. You know- Yeah ... we love that show. So that was fun, and getting to go with our nurse was fun, too. Sure. 

What else did we do? We went to, in that same trip, the next day we went to Houston and did- ... all of her sleep study- ... and saw every single doctor all within a, three-day window. Yeah. So, oof.

Rhandyl: Whoa, y'all were- it was crazy ... that's crazy. That's a lot of driving. Yeah. And especially for people that don't realize how big Texas is, I mean- ... you can get to- It's from one extreme to the other, like- yeah, you can get to four states before you, in a- another direction than you can get down to- oh, yeah houston and- it's like- ... y'all were bouncing all around ... 

Deonna: it's like different [00:05:00] ecosystems. I mean, you're- Oh, yeah ... even the clothes and the weather and the heat and all that is different. Crazy. I mean, it's crazy. 

Rhandyl: But, Dang, y'all had a lot. 

Deonna: Yeah, so we did all that, but it was fun. And then- 

Rhandyl: But all the doctor's visits went well?

Deonna: Yeah. So her sleep study went well, and we got some new doctors, which I was like, "Eh," I hate getting new doctors. One of them- Same ... had been with us since the injury and day one, and so it was, like, kinda hard, but everybody was great and it went good. Nothing too crazy. I- Good the only thing we ever get nervous about these days is her spine- yes ... you know, growing in a different direction. But right now it's actually pretty good. It's only 30 degrees. Okay. And it can get much worse. Oh, yes. And so we're happy with that. But yeah, she basically- Well, good ... has to be put in a chair that holds her [00:06:00] straight up, almost like a back brace, but not. And so, she has to get recasted all the time 'cause of it, but it's fine. Yeah. But no, she did really good. 

Rhandyl: Well, at least it's not getting worse. 

Deonna: Yeah, it's stable- Good ... so far, so I know. We have to be so picky about how that chair is, like- Yeah ... casted because of this. And your positioning and, yeah. It's a nightmare.

But we did that. We've been to a few camps. Allie did It's called Moonlight Musical Camp, but it's like- Yeah ... a theater camp, and it's really fun. They're really inclusive there, which I love. I love seeing the videos. They always like, give her a part and... You know what I mean? Yeah. They're not like, "Oh, you're in the background." They always let her be, in it, be a part of it. 

Rhandyl: As she should. 

Deonna: And the, I just thought of this, but so she did the camp. They did Shrek, which was hilarious. Aw. But, I love that ... then the next night or something, me, my mom, and two of Allie's nurses, Tanya and Macy, we went to go see one [00:07:00] of their big productions with adults and stuff. Yeah. And it was Frozen, and it was so fun. We were having a great time. Well, there were storms back away. And I was kinda watching them, 'cause, Allie's on a vent. She can't really get wet. No. 

Well, then it got dark, so I couldn't really see the clouds anymore, and I felt a raindrop, and I was like y- you're down in this amphitheater really far away from your car. And so I was like, "Oh, that was- ... a raindrop. Okay." Well, I felt 10 or 15 more. 

Rhandyl: Oh, yeah, so this is an outdoor amphitheater. 

Deonna: It's outdoors, yeah. Yeah. And so I just, we had already kinda packed up some of our stuff, but I was like, "Hey, we're just gonna have to leave. If this comes down on us- Not good it's not good." Well, I say that. We stand up to start gathering our things. It just opened up on us, like- No ... torrential downpour. I'm like... I told Macy, I was like, "Hey," I've [00:08:00] got her, 'cause you have to run up this ramp that's like up a hill. Oh. It's pretty hard. Oh my gosh. She's "No, I've got it." So she takes off running. We're screaming. I have that HULKAN bag. It's like a bag you drag, which- ... is amazing, but- yes ... we had like food, all of our stuff, like chair, like lawn chairs. Oh, man. So, and one of our nurses is pregnant. We're like, "Get everything," and we're like screaming. And I- Oh ... it was like the funniest- I can only memory 'cause we're running up the hill, and everyone else is trying to leave, too, because they don't- Yeah ... wanna get wet. And Macy and me, are both screaming, "Move, she's on a vent." And so one of us- ... would scream, "Move," and then the other one would be like, "Sorry. Move." Yeah. And everybody was, like, parting the Red Sea for us, but- aw. Well, that at least- we got soaking wet. Like- 

Rhandyl: Oh, no ... Allie, we threw a- Did it mess up her equipment? 

Deonna: Well, her... So maybe. Like her- ... blanket we threw a blanket over all her- Sure ... stuff, but we had to run through [00:09:00] mud and stuff. It was crazy. Oh, wow. And even loading her in the car's not a, you know- No instant thing. And so we get in there. It was so funny. I'll have to share- ... a picture of us soaking wet. Down to our underwear soaking wet. Oh, i- yeah. And yeah, her pulse ox came out two days later, so we're like- Oh, no ... "Ew, was that related?" Probably. Who knows? Yeah. But so that was hilarious, but we did that.

Rhandyl: Whoa, that's crazy. 

Deonna: Me, so my son went to a church camp in Arkansas and, Allie wanted to go do something while he was gone Yeah So me and the same two nurses, like a couple days later, took her to Dallas and went on a, shopping weekend thing. 

Rhandyl: Oh, fun. Like A girls- 

Deonna: And that was really fun. We just went to all the big, like Grapevine Mills and- we went to this barbecue place in McKinney called Hutchins, which was like life-changing. Ooh. But we went to this like bubble [00:10:00] experience where there's different- What is that? ... rooms with bubble things. Oh, cool. It's at Grapevine Mills. I convinced Allie to get into the ball pit, which she hated, so oops. She was like so PO'd at me. She was like ... She was actually really mad. I was like, "Allie, just try it. You might think it's fun." We get down in the ball pit, she's like, "Get me out of here." I was like, "Okay." Oh, 

no. 

But we did that, but it was just fun. We got like a Airbnb and just hung out and- Nice ... shopped till we dropped.

Went to all of our favorite restaurants in Dallas and stuff, so. Oh, 

great. 

Yeah. It was fun. And then I guess the last... We- we've done so much, like it's crazy. Y'all have. The last thing we did is me, Allie, and Cole, and my husband all went up to church camp in the mountains again. Yes. We did this last year, and it's at this camp called Pine Springs, but it's just kind of like our church kids that go. It's called Evergreen Camp. But it was really good. It's physically hard on me [00:11:00] because I'm... Basically, what we decided to do this year is I was gonna push her around camp and do all the daytime things. Yeah. And then when I would get home at night, Dane, my husband, was gonna do all the night stuff- Yeah get her ready the next morning without my help. He was basically the night nurse, and I was doing all the stuff during the day. 

Rhandyl: Well, that's good- But- ... 'cause Dane wasn't able to go last year, right? 

Deonna: No. So I was staying up- So that was- ... till like 1:00 AM and waking up at 5:00. Yeah. It was crazy, but- Yeah.

Rhandyl: I'm glad he was able to go ... I've, 

Deonna: I was happy 'cause I've been working out a lot in the last year. You probably can't tell by looking at me, but I have. And it's I was really happy because I didn't get like sore or- oh, good ... you know what I mean? Like it could have been- Yeah ... way worse, and so I'm like, "Okay, that has not been for nothing." But- good ... 

it was fun and seeing her be accepted by more kids and- yeah ... like it's really gut-wrenchingly painful to watch [00:12:00] kids like ignore your disabled child. It really is. Even though they don't understand that she just wishes she could be like them, but- Yeah ... there's... I used to think it was like- , how you were raised, whether- you were like this, but there's a lot of good kids that ignore Allie. It's not that they're bad, they just- Yeah ... they don't think about it. Right. And, but there's certain kids, like there's kids like Adeline and Olivia and these little girls who just, you know, and a lot of Cole's friends, like this girl Audrey and her counselors Ella and Audrey, like they just basically I don't know, like they see her for real. Yeah. Like her actual... And there's this girl that's Cole's friend named Sawyer. Like all these kids like they just get it, yeah. 

Even some of his friends that are guys, like Truett, you know Truett- Yeah, yeah ... from uh, Challenger, and Molly and,... and Trace. They all just, these kids, I wanna call them out by name 'cause it's just, like they actually see her and they get it, and it's [00:13:00] just like this amazing thing, 

Rhandyl: yes, I love when that happens. 

Deonna: But I mean, plus many more. I mean, they weren't- Yeah ... the only ones, but it w- I feel like older kids always are more f- friends with Allie, and she always gravitates towards older kids. Yeah. Maybe it's 'cause they just are more mature and get it, but it was a good experience. It was a lot of fun. I'll have to share some videos of it 'cause- yes ... 

we let her play dodgeball. We let her do everything. She got- Oh, fun ... hit in the face out there and I was like, "Oopsie," but yeah. 

Rhandyl: Well, that's part of it. 

Deonna: Part of it. Aw, i'm so- Yeah, she started crying and everyone was like mortified. I was like, "She's fine. It's okay."But- yeah ... it was, but no, it was fun, but I'm full-on exhausted. It's been- yeah ... oh my gosh. I'm sure. Fun, but just tiring, but- 

Rhandyl: Y'all don't have anything else going on this summer- hopefully not ... like trip-wise? 

Deonna: Yeah. I think I might take the kids to my hometown to watch a stock sale, 'cause I used to show and was in FFA- Yeah and 4H, and they've [00:14:00] never seen that, and that was a huge part- Yeah ... of my life. So, I just want them to see it once. 

Rhandyl: Yeah, have that experience. 

Deonna: So we may take them to do that, but other than that, no. I just wanna, like- Chill ... do nothing- ... the rest of the summer. We'll see. I may do other things. I don't know. Yeah. But, so what have y'all been up to? 

Rhandyl: We've had a few trips, and we have more trips planned. ... in May, we went to Wimberley and San Antonio on a trip as a family of four. We stayed with our friends in Wimberley. And they have this, it was like the perfect situation. They have their property and they have a guest house and then their main house. And so, it was perfect scenario we took two nurses with us and- Right ... so that was awesome and They're such wonderful hosts, and so we were there for like, five days,

and one of the days we went to Morgan's Wonderland in San Antonio. Yay. Which you guys did last [00:15:00] year, I believe, and yeah. Did she love it? So it was so... Yes. Okay. So when we first got there, I thought, "Oh, no," "I made this huge mistake." We get there at like, 10:00 AM. It was a Friday. 

Deonna: It's hot probably. 

Rhandyl: And, well, no, there were all these school buses, and the line was so long. It was, it wa- it was a ton of field trips. Oh, right. 'Cause it was, like, at the end of the school year- Yeah ... situation, and I was like, "Oh, no." And so, yeah, the first two rides- ... we waited forever, and then they have a water park area. And my friends that live in that area, another group of friends and their kids came and met. So, and besides Remi, all the kids were, like, four and under. And so, the bigger rides weren't necessarily appropriate for them, so they did ride a ride. And then they went over to the water park. Right. And we had stopped for lunch after waiting forever in lines. And I was like, "Oh, no," but we ate lunch, and [00:16:00] then all of a sudden the park just went dead because- Yeah I guess all the kids had gotten there early, and then they had to get back to school. And so from- 

Deonna: Well, and when you're in a wheelchair, can't you kind of skip the line a little bit? 

Rhandyl: Yeah, so that was the cool part. ... She was able to... It's called the Morgan's Fast Pass. Yeah. And so after that, all the little kids went to the water park, and Remi me and the nurse went and rode all the rides multiple times. And she got to get on fast because she was in a wheelchair. Yeah. And she loved it. One of the rides was shut down one of the newer ones. We were kind of sad about it, but um, 

Deonna: I mean- What was her favorite one?

Rhandyl: The, probably the airplane one, 

Deonna: Oh, yeah ... that where you, like- That was new, I think. 

Rhandyl: Yeah, where you have to fly your arms. Whoever's riding with behind her, you flap your arms and you go really high, and then you s- you slow your arms down or you drop your arms, and then- You drop. It's so cool. Yeah. She really loved all of it. And then they have a ton of wheelchair [00:17:00] swings, and so she- those are fun ... loved that. , But it wasn't too hot. I mean, it was in May, and they had decent shade, and so it wasn't too bad.

But it was a blast, and I recommend anyone- That's good ... who has, kids with disabilities of any kind. It was really cool because I didn't realize that all the employees, they all have either physical or intellectual disabilities as well. Mm-hmm. Um, So- So they get it ... it's just, yeah, it's just it was so awesome. And just to have, like you were saying, about the inclusion and, I mean, nobody looked twice. Like- ... you didn't feel like an outsider there. It was, like- really cool.

Deonna: Well, and it's good for just even little kids to go play. It- yes. I mean, it's just a giant carnival park, basically. 

Rhandyl: Yeah, they all had a blast. 

Deonna: There's a pond. You can fish. I mean, there's a million cool things to do. 

Rhandyl: Oh, yeah. Yeah. I mean, you could spend multiple days there. But we just did , that one day, 'cause it was a pretty good commute from where we were staying.

Deonna: Yeah. Yeah. [00:18:00] But- It's way over there. 

Rhandyl: Yeah. But it was it was a lot of fun. And then, so Remi had her annual scopes. She had her- ... her bronchoscope- Bronch, yeah ... and then her EGD. And thankfully both-

Deonna: What does that stand for? It's a, I mean like, what is it? 

Rhandyl: Good question. Esoph- so basically it's where they scope down her esophagus into her stomach 

Deonna: Oh, it's the... oh, okay. Yeah. 

Rhandyl: Yeah. And so both her GI doctor and her ENT were able to do it in the same OR, so, that was nice. Oh, good. So she just had one anesthesia, and they both did it. And we got really good results back for both. Her ENT said that her airway looks the best it ever has. 'Cause they'll take- That's good the trach out, and they look at her...

because those of you that might not know - the biggest issue with Remi's airway is it collapses even- ... after her surgeries in Boston. They're way more open towards the bottom, like where her lungs split. But, Which is good, I guess, but- For... Yes. But in- ... [00:19:00] usually her last few scopes or ever since that, even her upper airway, like where her trach is at, .. it collapses when you take the trach out. And so they were able to get images of her upper airway without her trach in, and it's way more open than it ever has been, so that was good news.

And then with her EGD, her esophagus and her stomach looked great, and all of the biopsies came back really well, so we were able to decrease down on one of her reflux medications. So they were both really good outcomes, and she was in and out. It was an outpatient thing, and she was in and out- Yeah the fastest we've ever been in and out of a procedure. Thankfully, I think the anesthesiologist and the charge nurse in the PACU, like they knew us, and so they- Yeah ... knew that. Your frequent flyers. I was like, "We basically have an ICU at home. Like we can go now. She's fine." So yeah.

Deonna: Yeah, sometimes they're like, "Oh, she might need to stay a night." And- yeah ... our doctor that we both share- ... Idicula one time was [00:20:00] like, "No, they can go home." Yeah. "They're fine." Yeah, the first couple of times- This isn't our first day of work. 

Rhandyl: Yeah. The first couple of times when Remi was really fragile, like we did have to stay overnight for those, but no, it's been years- That I get. Yeah ... since we've had to do that, so thank goodness. But yeah, she was- Yeah ... home by lunchtime, and we were good to go. Oh, my goodness. 

Yeah. And then we recently went home for the Fourth of July. Home as in my husband and my hometown, Shamrock, Texas. And so we went there for about five days, and that was a lot of fun. For the majority of it, it was a lot of fun. Unfortunately, Remi, she does not like the loud sounds of fireworks. But- yeah ... we had this whole plan to go s- sit far away and watch the big fireworks show that the fire department puts on. And- Like right before that she had this massive plug, which we'll get into in my lows- It's [00:21:00] the wally about that whole situation. But then after we got it all figured out and her stable and situated and , new trach and all that, she passed out. And so of course she goes to sleep early, so sh- you know, I think I was more disappointed than of course she probably, I don't think she probably even cared, but I was just like- Yeah I really wanted her to see the fireworks from a distance. 

Deonna: I know. Sometimes- But she does like seeing them ... we want them to do these things- Yeah ... for ourselves, and- yeah, it was more of a me thing ... and then when you realize that, you're like, "Ugh, okay." 

Rhandyl: Yeah. It was more of a me thing. I go th- but our- Yeah, I go through that too we had a lot of friends in town. My husband always plays in this 4th of July golf tournament. And so he played with our friends, the same friends from Wimberley. They came and brought their little girl, and then our friends from San Antonio brought their twins, and so there was a whole lot of- That's fun

and then all my nieces and nephews. I hadn't got to see my newest niece since like March, and she's like a whole new kid, and I was so [00:22:00] excited to see her. Yeah. And it was just a one thing after next, , we have so much family there, and then a lot of friends in town, and we ended up driving over to another town to one of my best friend's other twin's birthday party. We just saw a lot of people, and we did a lot of stuff, and I felt I mean, it was just exhausting, but a lot of fun.

Barrett loved the fireworks of course, and s- Of course ... they went swimming at the country club. Like he just- Ugh ... had a blast the whole time we were there doing- that's good ... all the fun things. And Remi, , probably the highlight , of her 4th of July was riding the Ranger. My dad has a- Oh, yeah ... a Ranger, and she like- He took her out on dirt roads and they would go fast and go over these hills that get your belly going. And he was just gunning it 'cause she loves she's a thrill seeker, and so she was just loving life. And so she went on- That's cute ... a lot of ranger rides.

And yeah. And my husband and his golf partner did, they did really well [00:23:00] and we always go on Saturday night out there for the Calcutta. It's I don't know how to explain it other than like, it's an auction for- oh, yeah ... they have a big dinner and they do, like this where they bid on teams and all that. And so the kids, we went out there and did that.

And then it was funny when you were talking about a storm. There was a storm that came in out of nowhere that night and we were, we had been all outside on the patio. Kids had been swimming. We ate dinner and all the little kids started throwing the little Pop It firecrackers down that you just, you know- Oh, yes throw and pop. And Remi was not having it, so we had just taken her inside, and then all the sky just broke loose and it was hail and flash flood. I mean- Oh, no ... it only lasted 10 minutes, but it dropped like, an inch of water and hail, and thankfully it was just I don't know, like sonic ice hail.

Oh, yeah. It was so loud 'cause the building it was a metal roof building, and so it was just so loud. So loud. And I was freaking out that Remi was going to, like- She [00:24:00] didn't care about the storm and the loudness of the rain. She was only mad about the little pop-up fireworks. I'm like, "You are so crazy." So thankfully- You're like, "Make it make sense, girl" ... she didn't get caught outside. I was like, "We're just gonna have to s-," I told her nurses, I was like, "We're just gonna have to stay in here until this kind of, blow over. I don't know how long it's gonna last." But yeah, that all happened right before dark, right before different fireworks shows. So it actually was a good thing, I guess, like the, everything was wet, so you didn't have to worry about fires and all that. 

Deonna: But- Yeah, for real ... yeah, so, I feel like it always used to try to rain on the 4th of July, and you were like- I know ... "I live in the desert. It never rains." So funny. And then on 4th of July, like at 10:00 at night- That's what it did

it started raining. 

Rhandyl: Thankfully it was before- 3:00 ... before the... But yeah, it was wild. I mean, it was a small cloud, and it just came out of nowhere and dumped. , But we were not caught outside in it, thankfully. Yeah. 

Deonna: Wouldn't recommend 

Rhandyl: it. Yeah. No. We have more trips coming up, which we'll catch up with on our next High Loq Buffalo.

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Rhandyl: But we'll get into [00:26:00] the lows. What about y'all? 

Deonna: I, I know. It's kinda like sometimes when I'm thinking about these, I'm like, "Oh, I didn't really have any." And then I'm like, "Okay, I have to be honest with myself right now." Really? Like- Yeah ... you're like, "Okay, actually there were several."

But I I don't know when this started, but I have, I mean, I've said on here I have MS, but- sure ... I had a pretty substantial uh, MS relapse. Mm-hmm. And I don't know when it started. It was kind of like around the end of May maybe, but it lasted a really long time. It lasted like almost a month. And- Oh my gosh sometimes it'll be like less than that, but usually- Uh-huh ...... when I'm starting one, I'm like, "Oh, here we go. This is gonna be at least a-" 

Rhandyl: What are your symptoms like? 

Deonna: Well, every day my legs hurt, like- yeah ... a, kinda like, uh, your legs are asleep, but it's like burning. Like neuropathy-ish? And that's every day. Yeah. Yeah. I'm pretty used to that at this [00:27:00] point. But and every time I take a step, it kinda sends like a shockwave up your ankle- ... and your leg, which I, like I said, I'm used to, so it's it doesn't really affect me.

But when I get really bad, that feeling moves throughout my whole body, like my face, Lately my throat has been feeling like not paralysis, kinda like it- Oh ... isn't doing what it's supposed to do. Yeah. Which then I get acid reflux. I get- Oh, no ... like, , like my head will hurt, my arms won't work very good. I'll get something called, it's called the MS hug, and it's basically like your ribcage, like the nerves in your ribcage are, like, constricting- Ugh so it feels like you can't breathe normal. Like it, it got pretty significantly bad. But- Oh, no ... i've never been hospitalized for it, but there was a moment where I was like, "Am I gonna end up in the hospital on a NG tube because I can't swallow [00:28:00] correctly?" I got a little- Oh, scary ... freaked out.

But it just, it's so crazy how it comes and goes, and this one was kinda bad, it's like I don't really talk about it that much, 'cause what are you gonna do? I mean, you- Yeah ... they're like, "Well, you need to limit your stress." I'm like, "Okay." Yeah. All right. Good one. Yeah. I just have been feeling very tired and fatigued. I don't know why, 'cause I've been sleeping okay. But just- 

Rhandyl: Well, all the traveling. I mean- 

Deonna: Yeah, the traveling took it out of me. MS took it out of me, and then honestly too, there's a lot of just... i've had so much loss in my life. With my brother and everything. It was his birthday, it was my nephew's birthday, then it was my birthday. Yeah. Then it was 4th of July, which most people would be like, "Why are you sad on 4th of July?" But that was my brother's absolute number one favorite holiday. He loved it. He was like a little pyromaniac. He loved [00:29:00] lighting things on fire and shooting- Yeah ... fireworks and stuff. Even the other night we were outside just watching everybody shoot fireworks, like, all over town. And the smell just... You know what I mean? It's just- Yeah ... so triggering. There's been sadness about that,

and even even though we had a really great experience at camp with Allie, there's just- ... that sadness that I can't just go drop her off on a bus- Right ... and with- She can't do her sleeping bag. I have to- Yeah ... go. And then I think sometimes people think I'm, like, a helicopter mom who wants to go. You have to go and like- If she's- I don't wanna go 

Rhandyl: No, and if sh- she's gonna- yeah ... you have to go if she's wants to go. 

Deonna: Yeah. I mean, that's- If she's gonna do anything, I have to be there. I even told my son- Yeah ... the other day, I was like, "I'm sorry that I'm gonna just be around. If she's going to something- It's- ... it's lame- Yeah ... your mom's gonna be around." And he's like, "It's okay." But I'm just like, "Ugh," even that, just socially- Yeah, that teenage area ... like my mom and dad were [00:30:00] really good about letting me go on trips without them and stuff. Yeah. They were not sponsors, 'cause they knew I wanted to be away from them and just- Yeah ... have like, a big kid experience. But yeah, it's just been a lot, but you know how it goes. I don't know if you get this way, but, like, when I'm feeling sad or stressed, then I start to feel really unstable.

Rhandyl: Mentally? I don't even- That's how I am ... 

Deonna: y- yeah, like full on- I feel like i- ... mentally unstable ... melt down. Yeah. And I'll be like, something bad's about to happen- Yes ... or I'll feel very worried- Anxious ... or I'll get... Yeah I'll get anxious, and Dane's like, "What's wrong?" I'm like- I don't know I just feel like the other shoe's about to drop- Yes ... or something. I don't know. Like- That happens to me ... somebody's about to- 

Rhandyl: It's PTSD ... 

Deonna: quit or- yeah. Yeah. So it's really hard. But any time this happens to any of us, we just get... That's why it's, you can't really take us personally all the time because the things we're thinking about aren't normal, and- No we get very unstable [00:31:00] feeling over nothing. Yeah. If any little thing- Even though we're incredibly tough and resilient,

Rhandyl: yeah. Yeah. It's, that's exact- That's actually how I've been feeling a lot- Yeah ... lately. Recently. 

Deonna: We need to get together and have a just day, 'cause oh my gosh. We'll go to the spa. 

Rhandyl: Yeah. Oh, let's do it. Schedule it right now. 

Deonna: But yeah, I mean, that's... It's just been like that. It's nothing like, really specific. It's just this overall, like- I don't know. Sometimes I'm fine. I'm not sad at all, and then other days I'm, like, freaking out. I just- yeah ... I don't know. I'm like, "I need to get medicated." I'm like, "Oh my gosh."

Rhandyl: I am medicated, but I still- Yeah. It's definitely better, but it's- It still doesn't help all the time. Man, there's triggers that are... You just can't. It doesn't matter. The dosage. 

Deonna: Well, and I like to... I recharge by being by myself. And when it's summer, I'm never by myself, and I even the other day, my husband was at the house, Macy, our nurse, was at the [00:32:00] house, and I was like, "Hey, everyone, I need to go leave. Bye. I will be back later. I have to leave." Good for you. And I went to the thrift store, which is my everything, and I just looked around for two and a half hours. Dane's like, "Were you at that one place the whole time?" I was like, "Yeah." Yeah. I was there the whole time.

But yeah, it's like I, I like to be by myself, and that just isn't a luxury I get all the time. Even though my nurse would totally let me go do something. I just- Yeah ... I don't know. It's a weird life, but we make it work. 

Rhandyl: Yeah, Summers are definitely different, that's for sure, when it comes to- no routine. Yes. That's-

Deonna: so what have your lows been? 

Rhandyl: Well, it's always the ebb and flow, and we've talked about it a lot on here. You get so comfortable when you have a full nursing staff and, Yep ... yeah, we just... And then boom you lose a full-time... So we've recently lost a full-time night shift nurse, and so- ... that's been really [00:33:00] rough. I have not been getting a lot of sleep, obviously because of that. I try to sleep as much as I can in her room, but, it's hard.

It's noisy ... like, two nights in a row her ventilator, started alarming like ventilator service required. And we swapped it out, and then the next night, the same thing is happening to that ventilator. And thankfully didn't shut off in the middle of the night, but I was just... had so much anxiety the whole, night that it was going to just shut down. And I was like- yeah, and that's bad- ... what am I gonna do? ... when that happens. Because she has central apnea, so like her brain won't trigger. So, I was like thinking of all these backup scenarios, and I'm like, just on a it was just, it was rough. And then she's been- 

Deonna: Well, and it's not like I can bring a vent to you. No. They're on different settings. And- Yeah ... I mean, what's good for Allie could blow Remi's lungs apart. You just don't know. 

Rhandyl: Well, yeah. And our, and then, and to top it off, our our normal respiratory therapist [00:34:00] that has been with us for years is no longer with the DME company we use. So I don't have a on-call person that I have a direct contact with right now. And so I'm just like, ugh, it's just been... I was a nervous wreck.

But- yeah ... and this has been so, I've talked about this in the past. Remi usually will get plugs, and they're usually seasonal. A lot of times it happens in the fall, like it's an allergy season- Oh ... and we have to do different treatments and stuff. But recently she's been- Or when it's dry. Yeah. And it's not dry at all. It's been raining a ton here. Yeah. And, but I don't know why, but she's been having a lot of plugs, so we're having to, do all these different treatments and meds to help thinner secretions and, but it's one of those things, like I wanna figure it out and figure out why.

Yeah. But we just haven't yet. 

Deonna: Well, and every time it can be the end of it. I mean, it can be- Yeah ... life-threatening every single time. 

Rhandyl: Yeah, I feel like every day or at least every other day, we've been having to do, quote-unquote, emergency trach [00:35:00] changes, ... because either we can't get the suction catheter down or she... and she's getting better. She'll tell us. That's scary when that happens. She reaches her hand out to us and then we're like, "What do you need?" And then she'll grab her trach- That's huge ... and like point at her chest, and I'm like, "Okay, there's something going on." And so it's so awesome, that she's able to communicate in some sort of way that, "Hey, something's going on." Whereas in the past it was more like she would just panic, cry, turn blue. Yeah. It's just- And like she's crying. You know- And then she hates it, when we're having to do the bag and suction. She's mad. She's But I, you just have to sit there and explain to her and try to calm her down that "This is how you breathe." Yeah. "And we have to bag or you- There's two options here ... I know you don't like it." Yeah.

So bes- so between all the plugs, the ventilators messing up,- losing a full-time night shift nurse, it's just been a lot of stress lately, and- Yep ... so I mean, like you were saying I- that's... i've been feeling just a overwhelming sense of [00:36:00] overwhelm. Yeah. And so- 

Deonna: You're like, "I'm about to freak out." 

Rhandyl: Yeah. You were saying, camp was great, but then there's that, and that's how I felt at 4th of July. I felt like I was being pulled in two different directions- the whole time we were there because, I wanted my son to have fun and get to do the normal 4th of July things with all of his friends, and then wanna make sure that Remi is... 'Cause she couldn't go to the... She gets in our pool, but the pool that they were all swimming in is this small, tiny pool, and it's full of kids splashing, and it's not safe for her. It's not good, 

yeah. And so it was just one of those feeling... I wanted to be, I needed to be two places at once. And so I was, felt like I was being pulled in multiple directions, and there was a lot of mom guilt, and then there was- ... there was also a lot of fun. It was just like- I know ... oh, my gosh but I feel like that was stressful for me to just try. I just wanted them to both have a good 4th of July experience, I mean, so, there's a lot of internal feelings that go into all the things, and so- .. [00:37:00] I know. Yeah.

Yeah, so I totally, I know what you're talking about, and anybody with a disabled kid trying to do things fun or just live life understand oh, like, when things go bad, it's I feel like it's just one thing after the next, but we are waiting for something.

Deonna: Or you need to make a shirt that says, "Mentally unstable." 

Rhandyl: We should, yeah. So true. Ah. Hello, me. But- funny, but not. Yeah.

What about, so what about something random? What's your buffalo for this? 

Deonna: Our buffalo's kind of one of the high moments, but it was incredibly emotional for me. So I will say I, Like, when I grew up, I was... I know it doesn't sound like it now. Now I sound like Patrick Mahomes or Kermit the Frog or something 'cause my throat's just trashed, but back in the day, I used to be, , a singer. I started singing when I was, , maybe six or seven years old- ... and I did it all through high school. I was, like, in a national choir. I was, , in choir at college. That was a [00:38:00] big thing to me. Yeah. 

And I took voice lessons that whole time, and so it was huge. I feel like it just made me part of who I am, like, just confidence-wise and things like that. Mm-hmm. Well, when Allie got hurt and they... I just thought maybe she would do the same kind of things as me. You know how we all think that- Yeah ... like, "well, you know- Oh, yeah ... she could, sing like I did." 'Cause that's usually a genetic thing.

Well, when she got hurt, gets a trach, they're like- ... she's never gonna- Talk ... talk again. It was just like, well, that's out, yeah. But so, fast-forward to now, she she can kinda sing over her trach, and it's become this thing... we're singing at the house 24/7. Our Alexas, one of our Alexas is actually going out. That's how- ... much we play them. But the music's huge for, like, all four of us. We love it.

And- Yeah ... ... i asked her a while back, 'cause her teacher at school said something about voice lessons, and I was like, "I wonder if Allie could do it just for [00:39:00] fun. Not do-" Yeah ... recitals, just come and sing some songs and learn how to read the music and just have fun." Well, she put us in contact with this girl named Lauren Martin here in Lubbock, and- she has been teaching Allie voice lessons for a year. And a recital came up like in May, and I was like, "Allie, do you wanna do it? You don't have to do it, but if you want to, they're singing, y- like they're singing in front of not a big group, but you know-" Yeah ... "there are gonna be people." And she's like, "Yeah, I wanna do the recital." I was like, "Okay." Aww. So she sang Favorite Things from Sound of Music, which is, like- oh ... one of my all-time favorite movies, one of my favorite songs. 

Rhandyl: Yes, love that movie. Like- love that song too ... 

Deonna: I was in that musical as a eighth grader. Aww. But so, you know, it meant a lot to me. But so she sang that song and we went to the recital and I was like, "Are you nervous?" And she's like, ""No." Which I was like- Wow ... [00:40:00] I'm-gonna-puke nervous for her- Yeah ... and also for myself at her age. Sure. So I'm like, "Okay, whatever, girl." But she did so good. She- Aww ... sang it and I... But the thing that was so emotional is sh- I was in the front row. She just locked eyes with me and did not look away- Oh ... the entire song. Oh, I would- everybody was- ... bawl ... tearing up. My whole family my, everybody's about to cry. I was like, oh my gosh. But she did so good. Aww. It was the best thing ever. 

Rhandyl: Well, that's amazing. But- I mean, it's always amazing to me just whenever I talk to Allie how well- Oh, I know she... Because she's on a ventilator 24/7, you have to learn to control your voice over those breaths that are coming in. Yeah. And so it's like- amazing that she's able to- it's weird ... sing 

Deonna: like- like I was even telling people at camp, they were like, "Can other kids that are on trachs eat the way she does and talk and stuff?" I was like, "I really- 

Rhandyl: Not always, no ... 

Deonna: I said, "I'm trying to think of [00:41:00] anyone I know that can do these things to this level." It's- Right ... it's just very rare, so 

Rhandyl: I was like- I mean- ... it's weird ... Remi can vocalize a little bit over her ventilator- Yeah ... now, but it's nothing like she can vocalize obviously with her Passy Muir valve without her vent on. Yeah. I mean, she talks all the time or makes noises- 

Deonna: Well, and she's not even- ... and things, but- ... using that valve Right ... it's weird. Like- yeah, it's very crazy ... the whole thing is weird. But- That's so amazing ... it was pretty cool- Ah, I love that ... moment and she was really proud of herself for getting up in front of everybody and stuff, which now she's getting up in front of people.

Even the other day at camp, the guy that's the like director, he went up to her and was like, "Allie, will you pray before dinner?" And I was like, "Oh my gosh," "Is she gonna tell him no?" Yeah. 'Cause that's intimidating. It is. And she's "Yeah." And she prays in front of 150 people. Whoa. And I was like, I would have freaked out if that had been- Me too ... me as a kid. I would not- Me too ... have done that. [00:42:00] Wow, that is- So i'm proud of her for being confident, 'cause it's so hard to be, confident when you know everyone's looking at you all the time. Yeah. But I don't know. 

Rhandyl: Well, good for them- It was- for asking her, and then good for her for... Yeah, I would've crawled under the table- She's- ... if I was- 

Deonna: After it was over she's "Why did he call on me?" I was like, "Because he knew you could do it." Like- Aw ... you usually don't call on people unless you know they can do it. Yeah. But it was... Which Cole did it too and was like, "Oh my gosh," so it was funny, the reaction. She's like, "I'm fine." Cole's like, "Oh my gosh." But- That's funny ... no, it was cool getting to see her do something that she likes and that was, you know- that's amazing ... something I didn't think she would ever do, so. Yeah. We sh- we were like, "We need to show our pulmonologist that she did this." Yes, you do. She'll be like, "What?" But we told her about it, but- that's so cool. 

Yeah. But what was your buffalo or random thing? 

Rhandyl: Well, so Remi has been going d- this summer whenever she has PT like at least once a [00:43:00] week or every other week they go somewhere for a PT session. Usually it's her nurse and a respite and her- pT or just PT and nurse. And , one day they went to the Science Spectrum here in town. Oh, yeah. And- It's like a kids museum ... it like, it's like a kids museum, and they, and she ... So we had taken her there a long time ago, like long time ago, and she hated it. And I re- Yeah ... I've been triggered from that,

Deonna: Allie, same thing.

Rhandyl: Yeah. And so I, when they said they were gonna take her there, I was like, "Okay. Good luck." Well, home girl- 

Deonna: Have the bag ready ... 

Rhandyl: yeah, she wanted out of her wheelchair as soon as they got there, and they had her gait trainer there. And she walked around for two and a half hours and did not stop. What? And went to everything. Her little legs. She, and they kept asking her, "Do you want a break? Do you wanna get in your chair?" And she would push their hands away, and she just kept walk- It was like, I 

Deonna: was- And it's such a [00:44:00] big space, 

Rhandyl: like ...... Shocked. Yeah, it's huge. And she they were just all in shock. And I got home from work, and the Suburban is still gone. And I ask Cole, I'm like, "Where's... are they..." And I look at the time, I'm like, "No way. They're sh- surely they're not still there." So I panic 'cause I'm thinking what's happened, yeah. I call her nurse, and she's "She doesn't wanna stop." And I'm like, "Okay. Well, it's after 5:00." And we had company coming over for dinner. It's time. Anyway, it was like, I was like, "That's amazing, but you need to come home."

But anyway, the videos, and I was, like, sad I missed it,... It was, , so awesome to hear she was like, "No, I don't wanna get back in my wheelchair. I'm just gonna walk around in my gait trainer." She went and did all the things was just loving life. And it was just one of those- That's cool ... it was one of those things whoa, like I would have never, ever expected her to want to be s- somewhere, and especially new, like- and it has lots of kids- ...'cause usually new [00:45:00] places ... or is loud, I mean. Yes. Yeah. Yeah. And so I was like Just, I was just so proud. And so- That's cool ... um, we're doing... It's been fun to be able to do more therapy sessions- Now I'm trying to think of other places- ... outside of home ... like- yeah. There's like they went bowling, yeah ... and there's some m- like big open places ... main Event maybe. I don't know. So yeah there's some different museums in town that are like accessible and- she might go to, so,

but yeah, that was that's my Buffalo. I was so proud of her for- that's big. Yeah, it was really big. Like- That's cool ... I was like, "Okay, well, maybe we're not gonna take the wheelchair to school this year." But- 

Deonna: You never know ... no. Maybe this is... I mean, or at least have it with you and- 

Rhandyl: Have it, but- Let her d- I know. I'm like, maybe we just- ... she just needs to be, yeah, walking around school more- Just let her, like- ... than she does ... 

Deonna: go in the gym- Yeah ... or like something like that- Yeah ... for adaptive stuff like PE or, yeah. 

Rhandyl: She does, yeah, she does [00:46:00] that in PE, but all around, like, when they go from class to lunch to all the things. I'm like, "Okay- ... maybe she wants to..." Maybe. We'll see. I don't know. 

Deonna: She did do, like we were talking in the dugout every time we were playing Challenger, 'cause like last year she tried to do the gait trainer, but- Yeah ... it was, like, pretty hard. Yeah. But this year she was just whipping around the bases. She was. And we were like, "Wow." It's crazy. And then another one of the girls on our team used to use a gait trainer. And now she's walking by herself, and so we're like- I know ... wow. The progress- I know ... is cool when you see, you know- It's way cool ... the kids, what they've- yeah ... accomplished in a couple years, but that's exciting. I'm happy- Yeah ... you guys do had fun there. Now she can go there and not be scared. 

Rhandyl: Yeah. Now, next time- Well- ... I'll go and not be so ... Yeah ... triggered. 

Deonna: Oh my goodness. Well, yeah, that's what we've been doing. It's been a lot, but we just like to do these so you guys know where we're coming from and what our lives are like on just the everyday- mundane and [00:47:00] whatever we're doing. And so, yeah, that's why we do these high/low Buffalos, and we will see you next time.

**Disclaimer

Before we go, I wanna remind our listeners that this podcast is for the purpose of education and entertainment only, and is not a replacement for seeing a doctor. We suggest you seek out the help of a trained professional for help with your child's specific situation.