Rhandyl: [00:00:00] Hey, y'all. Welcome back. So today, Deonna and I are going to recap the last couple of months for you guys. So we have a "High, Low, Buffalo," and we like to do this every few months. Last one we did was, like, mid-July, I think. So gosh, we've had a lot going on since then- Yeah ... with summer school, all the things.

But we like to recap you guys on our personal lives. So both of us will talk about some highs that we've had over the last few months, some lows, and then buffalo is just something random that we want to share with our listeners.

So I guess I'll kind of jump in on my highs. Right after our last High Buffalo in late July, we went to Houston for our annual medical trip. And we make sure that we try to plan some fun things in there, and this time we definitely did. So thankfully you just never know when you're going for these medical trips.

But Remi, I had mentioned in a, a few [00:01:00] episodes that she got accepted into the Undiagnosed Disease Network, and what that is is a big genetics network that all sorts of places around the nation, world use to gather genetic research data. And we went through Baylor Genetics is who she got accepted through. And so basically that was just a ton of appointments with all sorts of new doctors ophthalmology- ... neurology genetics research. It was just like a whole slew of appointments, and lots of lab work.

And they did this skin biopsy, which was a little more intense than I was expecting. Ooh. Yeah. Sounds bad. They take this piece of skin off the back of your arm, and then they just did the... Remi is the only one that had to do that, which I thought both Cole and I were gonna have to do that, but we- Yeah, I was gonna ask ... we did all the blood work. No. So, and the reason we, we were like, "What is this?" We've had all these genetic things, but [00:02:00] apparently they're able to detect specific chromosomal malformations in the skin that you can't detect in saliva or blood, which I think is crazy. Um- What the...? Yeah, genetics is just, so vast and there's so much, like- mm-hmm ... I mean, obviously there's so much unknown, but there's so much that they do know, Mm-hmm and how to find it. But imagine this-

Deonna: Did she get mad when they- We got results... Oh, yeah ... pulled that off? Ow.

Rhandyl: Well, so they do like a lidocaine deadening shot, which we all know those hurt already. They burn. Those are the worst part. Yeah. So I think- Yeah ... she probably would've been better off just letting them- just do it ... yeah.... But, so she was super mad about that. But, I mean, it healed well and, but , we recently got the, all the results back from, , all the lab work and stuff, and it's still is nothing detected, you know? man. So we're like, "Well," it... And that's, it's not like we went there thinking, "Oh, we're gonna find out, Remi's diagnosis."

Deonna: Yeah ... I fully- You can shoot me into [00:03:00] science ... 

Rhandyl: felt, yeah, basically like that we may never know, but- if we do, that's great. And if- 

Deonna: Never know ... 

Rhandyl: our research helps other people in the future, whether it's decades down the road, that's fine, too. Yeah ... but- 

Deonna: That's us, too, and stuff

Rhandyl: yeah. So it's just, yeah. But while we were there , we met my best friend and her family. They live in the Houston area. And every time we go, we try to meet up with them. And we met them at the Museum of Natural Science this year, and it was so cool. That is so fun. It's huge. You could have spent all day there.

I mean, it was huge. And we luckily had gotten early tickets beforehand to the butterfly exhibit, 'cause- ... it is, it gets sold out really fast. And I had kind of looked up AI told me when the best time to go- ... like, when the butterflies are really flying around. And I I was actually a planner on that one and got tickets. And oh my gosh. Barrett went with us. Sometimes, in the last few years, he hasn't went 'cause it's just been, like, a very quick, fast- Yeah ... medical trip. And so this is the first year [00:04:00] Cole had been in a few years, too, so it was all of us. And, uh, so- The butterfly thing is fun

It was fun. Oh, it was amazing. It was just crazy. 

Deonna: How you have to like, check your back five times before- yeah ... you leave. 

Rhandyl: They make you check, yeah. 

Deonna: Did you guys see any of the butterflies that had the numbers tattooed on their backs?

Rhandyl: Yes. 

Deonna: That was cool. Yeah. I thought that was cool. 

Rhandyl: Yeah. It was really- I love that museum ... like the blue ones especially. Yeah. Mm-hmm. Yeah. I- We used to go a lot ... my, my husband had went there while, Remi was in the hospital. I think him and my dad went one day. Mm-hmm. Um, But that was my first time to go, surprisingly.

Deonna: Oh, are you serious? Yeah. Which is so funny 'cause it's five minutes away from the hospital. It's right there. 

Rhandyl: All, the whole museum district, the zoo, all of it. Which we'd been- Uh-huh ...... to the zoo a few times, but I'm really not a big museum girl, .. but this was really cool. But- 

Deonna: It's a fun one

Rhandyl: yeah. Yeah, it was crazy how they they would take the big sweeper and go under Remi's wheelchair and make sure we're not taking any- Yeah ... butterflies with [00:05:00] us.

And then I think our appointments were on a Friday and a Monday, so we had the whole weekend to do some, fun things. And we went to the beach. We went to Galveston one day, and it ended up being a perfect day for that. That's good ... the weather was good. And Remi, though the first time we took her to the beach, she loved it.

This time, she was over it in about an hour. Once the sand- ... got in her swimsuit, she was like, "I'm done." Like- 

Deonna: She's like, "This is in my crack"- ... she was not a fan- ... let's go. ... of the... 

Rhandyl: Yeah. She was not a fan of the sand. ... But thankfully , our SUV has, , screens and Wi-Fi, and she was happy- Mm-hmm after she got all the sand off of her. And then Barrett got to play a little longer out on the beach, ... And she was happy- That's good ... to get to watch her shows in the air-conditioned vehicle, so- 

Deonna: Oh my gosh ... yeah, win-win. It was fine. We- Your kids and their screens. Love it. 

Rhandyl: Oh, I know. I know. But what do you do, you know? mm-hmm. Um, But then we went to this immersive art exhibit, which I know y'all have been to a few of those, and this was our first one. It was the, called The Color Factory. It [00:06:00] was so cool. Like- 

Deonna: Oh, Color Factory is so fun. We've been to that. 

Rhandyl: Yes. Yes. And it was dead. So fun. We were the only people there. It was- Mm-hmm ... really cool. Yeah. It was really neat. So if anybody's in the Houston area, y'all should definitely check out those. And then it's gosh-

Deonna: I know, it's like we're always trying to think of new things to do in Houston. Like, I feel like we've done everything. And then recently somebody's like- 

Rhandyl: There's always something to find

Deonna: How do you guys like the NASA thing?" And we're like, "Oh yeah, we haven't- Mm-hmm ... done NASA," which is, like- Yeah ... the most obvious thing to go do.

Rhandyl: But it's kinda, yeah it's kinda far. I remember going out there. Mm-hmm ... I did go and do that whenever we were there that whole year.

Deonna: Mm-hmm. Yeah. whole year 

Rhandyl: But, July and August here in West Texas was so hot, like 100 degrees- Mm-hmm ... every day plus, 100 plus. It was so hot. So anytime we were outside, we were in the pool. So the kids really did get a lot of pool time in , the last few months, which was really great, and Remi ended up embracing the pool more than she ever has. And I think I talked about, the cool [00:07:00] kind of adaptive floaty that she got. But s-

Deonna: Oh, yeah. How's that going? 

Rhandyl: One of her nurses got her this huge... ginormous, float that could just you could float on it on a lake. Oh my God. You know, Like you could fit two adults and her in there and it has a big shade over it 

Deonna: and- They're like, "Oh, this is a boat, actually. Oops" 

Rhandyl: Basically, . I had my husband blow it up with the air compressor, and I was like, "Oh," "This is massive. Okay." That's funny ... but she liked it. Yeah. But anyway, yeah, the kids both had birthdays in August, so we celebrated- Mm-hmm ... those. And so they're 10 and 5, which is nuts. We have- 

Deonna: Double digits ... 

Rhandyl: a 10 and a 5-year-old. I know. 

Deonna: Mm-hmm. 

Rhandyl: Yeah, so, there was a lot in August of just birthdays and summer. And then- Mm-hmm ... , me and my husband and then one of our couple friends, we went and saw the Riley Green concert that was here in town. Oh, yeah. And that was really fun. Yeah. I'm a big Riley Green fan. Is he fun live? Yeah, he was pretty fun, [00:08:00] and the lineup was all pretty dang good. They were all really good. We got there early and watched the whole thing, and- Yeah ... it was a lot of fun. Yeah. So that's a little fun thing that we did.

And then school started. Which was- Crazy ... we're gonna kind of talk about this. It wasn't really surprising that both Remi and Allie actually got to start school on- 

Deonna: are at school ... 

Rhandyl: the first day of school or been able to- Yes ... go to school this year, to be honest.

Yeah, , We'll get into that here in a second, but Deonna, what were your highs the last few months?

Deonna: Yeah, we did just a lot of little things. , We had already had our Houston trip behind us, thank goodness, so ... 'cause it is so hot to go there in the summer, and the whole- Mm-hmm ... hurricane threat is always a fun little extra part of that. But we actually didn't do a whole lot at the end of the summer.

We were just kinda like chilling and, just trying to soak in those last couple days of not having to wake up early and stuff. [00:09:00] I- Yeah ... my MS was out of control all summer- ... and so toward the beginning, I was having to just go, which we had a lot of fun, but toward the end, I got to kind of just, I don't know.

Like with MS, even when you relax- Reboot ... like you still feel like crap, but I wasn't having to do as much like physical stuff- Mm-hmm ... as bad, so I got to kind of chill a little bit. But end of summer's always kind of a weird feeling. Like it's good, but some of the things we did, Cole went on a mission trip to Houston, which if you don't know what a mission trip is, it's basically like you go on a trip with kids from your church or something and go do some sort of like community service project or something like that.

But yeah, - Cole went on this trip with his church friends, and they went to this place called Impact Houston, which is this church in inner [00:10:00] city Houston.

And at first he didn't wanna go because we've been to Houston so many times. Yeah And he was like, "I don't wanna go back there." One time they were driving around and they were g- going through the hospital district, and this one kid in the van was like, "This is where all the hospitals are in Houston."

And Cole's like, "I know. I lived here for, like- ... five months, dude." Yeah. But it was funny. But he did go do that, and I think it was really good for him to just... I don't know. I did mission trips like that too growing up- Mm-hmm ... and it's good for kids that age to see people living a life that's- 

Rhandyl: Totally different

Deonna: different and- Oh, yeah ... kind of look outside of themselves and so- Yeah ... I think that was really good for him. I'm glad he got to go on that. And then we went and saw Charlie and the Chocolate Factory at Moonlight Musical, which that's one of our favorite summer activities is to go to- Yes ... the [00:11:00] shows, and they always put on a good show, and it's just a chill, nice night.

So we did that. 

Rhandyl: Oh, fun ... 

Deonna: we, at the end of the thing, or at the end of summer, Cole is really into collecting football cards right now. And- Oh, yeah ... he has baseball cards and other sports too, but football is his thing. He actually has a shop online where he sells them, and it's like a whole thing.

Rhandyl: I- Oh, that's funny. One of my other friend's- It's crazy ... son's that's his age, same thing. He goes to- Yeah ... all these card shows, and he sets up tables, and he has a whole page on eBay. 

Deonna: Well, if they live in- I did not realize- ... Lubbock, we need to 

Rhandyl: get them together ... no, they don't. Yeah. But we, they come here some, so yeah.

Deonna: Well, we went to- That's cool ... he wanted to go to a card show here in Lubbock, and, Yeah ... I was the one that was gonna take him. And, , I had no idea what it was gonna be like or anything. I just took my book [00:12:00] and sat in the corner, and he just had the best day ever. Aw. But it actually was a really nice me and him day.

Mm-hmm. 

And, we got to go eat at food trucks and just like, chill and have fun, and it was cool getting to see him enjoy something he likes- Do something he- ... and it be- Mm-hmm ... just me and him and me not be focused on- Allie at all for that day. Yeah. And it was fun watching him like try to haggle with these adults.

I was always like, "Oh my gosh." Hey, that's awesome. He did it a couple times, 

Rhandyl: but- I can see him do that, yeah. 

Deonna: Yeah. It was funny. Hey, well, that's- He doesn't care if someone's like, "No." And so, you know- ... he's like, "Whatever." But so that was kind of funny. That was just like a good little memory- That's fun

day. But- 

Yeah ... 

uh, Cole got to go hunting with my dad. My dad drew a elk bow tag- Ooh ... in New Mexico, so ... that's where I'm from, but- 

Yeah ... 

he got to go do that. And [00:13:00] so they went to Capitan, New Mexico for that. Mm-hmm. Which the only thing I can think of to tell people about Capitan is it's where Billy the Kid was at- Mm-hmm

one point, which is some people know who that guy is. And then- ... the real Smokey Bear, or Smokey- Yes ... the Bear, however you say it. But- 

Rhandyl: Smokey the Bear, yeah. 

Deonna: But that's where- Mm-hmm ... he was. And they didn't get one, but, uh,

Rhandyl: no. He- Well, bow hunting- ... still had fun especially bow elk hunting is hard.

Deonna: And my dad could outwalk any 20-year-olds, and he's like- Wow ... 65. Like every- ... young guy that ever goes with him is like, "Golly, your dad was like killing me over here."

But, That's fun ... they had fun, and they've got to do that several times. Like I even remember- Yeah ... going hunting when I was a little kid a couple times, and it's just a good, fun, thing to do with your granddad.

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Deonna: But the last thing I've been doing is we went and spoke at Texas Tech the other day with [00:15:00] Allie to the one year, uh, like post-bac nursing students.

And- Yeah ... I used to go because I thought I was gonna get a nurse out of the deal, like somebody would work for us, but- 

... 

Deonna: That hasn't really panned out. But it just is a good fun day just to kinda go tell them about like what it's like being us and, Yeah ... it's just, uh, you literally go in there and-

Rhandyl: I know y'all have done that. How does- yeah ... how does Allie- Yeah ... feel about it? Like I feel like I know y'all have done this quite a few years in a row. Yeah. Like Does she look forward to it? - 

Deonna: I always ask her like, "Hey, do you wanna keep doing this? If you don't wanna do it, I can go without you." I mean- Yeah ... she likes getting out of school obviously, but, uh- Any kids

you know. Yeah. But it's just- She doesn't really like it when they ask - her questions, I don't think- Yeah ... that much. Which the other day they were asking her what her favorite products were at Sephora and stuff, so it wasn't like- ... anything too dark. 

Rhandyl: That's cute. [00:16:00] 

Deonna: But she, uh, she does like being there with me, I think, and kind of- participating in it. And I think it's good for the nurses to see her. But we did that- Yeah ... the other day, and that's always fun. But another thing I did, , I'm trying to decide if I'm gonna dip my toe into public speaking. And , I did another event the other day, and it was at my- town I kind of started my adulthood in. We used to live in Dumas, and, Oh, yeah ... it's like at the very top of Texas. And I hadn't been back. Oof. I mean, I, we moved away when Cole was only two years old, and he's 14, and I really hadn't been back much since. So- Yeah ... it was cool 'cause I got to go speak at my old church for all the women, and it was really good.

And I actually learned a ton about what I was reading and studying, so it was like super, super [00:17:00] good for me. But- Yeah, it was good. And I got to see all these people that haven't seen me since, you know- Yeah, since- ... all these crazy things have happened in our life. So it was good- Yeah ... getting to see everybody.

Rhandyl: And small town people keep up with everything. They do. Like- They've- ... they probably knew way more about you than you even know about yourself. 

Deonna: They've ridden this- Because that's how I feel ... crazy wave with me. Yeah. Yeah. It's crazy- And I don't- ... 'cause, you think they forgot about you or something, and then you get there and they're like, "I watch every single video you've ever made."

Mm-hmm. "I do this, I do that." And you're like, "Oh my God, like I- 

Yeah ... 

didn't realize you were keeping up with me this well. This is cool." So I mean- Yeah ... it was a good experience. It was. And it's funny- It was 

awesome ... '

cause I talked about be still and know that I'm God, and I h- I haven't told you this, I don't think, but like- I was researching this online, and Chad, your uncle, who we've talked to- Yeah ... on the podcast, his information kept popping up. And I actually used some of his stuff [00:18:00] to, you know- Yeah ... write my s- my, my thing that I did. But I thought that was funny that his stuff- Oh, that's so cool ... kept popping up, but- 

Rhandyl: I know.

He's everywhere. Oh, he's written so much. 

Deonna: He's everywhere. He's- 

Crazy ... 

he knows a lot. Yeah. But it was really good. I'll have to share sometime what I learned from that, but- 

Yes ... 

yeah, 

I would love to. 

Another episode. Yes. So we'll switch into our lows.

Let's talk about- the school baloney first. I'll tell you my barely my little synopsis of this. But yeah, we got a phone call or something- Yeah ... saying that all the rules about Allie's private duty nursing, which is just one person for us,

Mm-hmm ... 

eh, all the rules were changing. And I was like, I texted you and was like, "Have you gotten an email or a text?"

No. "What is going on?"

Rhandyl: Yeah, , same scenario. I can't even remember if it was phone call or email. It doesn't matter. Basically saying that, there was all this stuff that needed to be done prior to Remi getting to go to school with a nurse.[00:19:00] 

And these two nurses she goes to school with, uh, not two nurses at the same time, but she has two full-time day shift nurses, and some of them- Yeah, 

switch 

out ... you know, they switch out. So they were both already... They'd already done all their background checks and fingerprints and all the regular things that anybody that's going to be, volunteering or working at the school has to do.

Yeah. Last year. So these, these nurses have been cleared for a long time. And so they, over the summer came up with some crazy policies regarding private duty nurses, and I suspect that it - is due to something, one- They 

Deonna: all stem from something. 

Rhandyl: Yeah. They all stem from something. Yeah. It was just one rotten egg that

Spoiled the whole bunch or whatever. But anyway, there was, like, this whole guideline of all the things we had to do before the first day of school. And- And a 

Deonna: lot of meetings you had to do ... one, 

Rhandyl: a lot of meetings. We had to schedule two different meetings, one which was an ARD or an IEP, which those of you that know what that is and have to [00:20:00] do that, it's usually just an annual thing.

Or if there's some huge change in the education or your kid's curriculum or whatever it's this huge- Mm-hmm ... meeting with all the administrators, diagnosticians, , all these people. But it was mandatory that we do that before school, and then we had to also meet with a special - education director.

And so all this stuff plus the nurses had to be background checked again. I don't even know. It was so much, . basically the whole thing was, like, , we had to prove or give good reason for why our kid needs a nurse with her at school.

Deonna: Yeah. 

Rhandyl: And why the nurse at the school- Isn't enough ... the school nurse that's in her office checking temperatures and sending kids home, like- 

Of the things that, their responsibilities, and then they're trying to t- tell us that they would be able to take care of our girls at school all day, five days a week.

They have to legally tell you, you know- Which they don't wanna do [00:21:00] that ... this, but... No. Anyway, so I know you did the same thing. Went to the nursing agency, had the printoff, the whole plan of care. Here's my scenario. Take a giant stack of paper. When I... Yeah. Here's this is...

I'm gonna kind of try to shorten it down, the version of our ARD meeting when we walked in there. I didn't even know my husband was going to take off early and come to this, and so I had already prepared everything myself. 

Deonna: A dad's a whole 

Rhandyl: nother element. 'Cause I was like, "He's not gonna be able to come."

I walk into the house to grab all the things get Remi and the nurses, and we're going to the school. And Cole's in there with all the paperwork, reading through the documents, and I'm like, "Oh, hey." He was not usually home at this time. I was like, "Are you going?" He was like, "Yeah, I'm all studied up."

And I'm like, "Oh, boy." So we go- That's never good ... we walk in 

Deonna: there. And I- Was he wearing his scrubs? 

Rhandyl: He was wearing his scrubs with his badge- Of course he was ... all the things. Mm-hmm. Yes. And so- 

Deonna: Oh, no ... 

Rhandyl: like I walk in, and I had already met [00:22:00] the school nurse at the meet the teacher, and she is a new school nurse anyway., And so I handed her the plan of care, and then- This 

Deonna: poor baby ...

Rhandyl: yeah. . And then we had both of the nurses, day shift nurses in the meeting. Yeah. My husband, me, and then I had requested that the director of nursing with our agency, our nursing agency be in the ARD, and she could join via telephone.

And so she was on the whole time. Love that both of 

you did 

that. Yes. 

That's funny. 

Because I told our nursing agency "Look, the ARD meeting for me as a parent is to be Remi's advocate. Be the parent advocate. But I need someone- Mm-hmm ... else to be the advocate- 

Deonna: The nurse's advocate ... 

Rhandyl: for the nurses."

And so- 

Deonna: Yeah ... 

Rhandyl: it was this whole thing. We had to basically- Say that Remi has to have a private duty nurse and followed all the, rules. But it was just like this, honestly, it was like this whole racket, and it felt super to me it felt really discriminatory.

Mm-hmm ... I know you have to [00:23:00] follow policy and things have to change if something isn't, it's like legally whatever, but it just felt Especially like before leading up to the meeting. I mean, they were all very understanding and kind in the meeting, but all- Mm-hmm ... of it felt very like just not good.

It just gave me like this- Mm-hmm ... horrible feeling and like the one thing that ha- has for decades, not necessarily been fair but been available for kids with disabilities is public schools. And I felt like, oh my gosh, this is the one thing I usually never have to - worry about it's not a hassle. It's like one- Yeah ... of those things she can go to special education. She loves school. It's always been this easy process, and then all of a sudden this happens, and she's going into fourth grade, and we've been doing it since she was three 'cause she started school in the PPCD program, public school, and I'm like seven years and all of a sudden I felt like they don't want my kid at school. I know. Like her nurses- [00:24:00] Yeah ... at school, like what?... And it was even dramatic after that. The first week of school it was just extra dramatic with like- mm-hmm ... them having to check in the office and bring their IDs every day and do all this stuff.

Mm-hmm. But now it's like everybody's chilled out, it's back to normal. It was just super stressful for not only me, but the nurses too, they're the ones having to go to the school, and they don't feel like anybody wants them to be there. That was another- Mm-hmm ... like whole, piece of it. Yeah. So anyway, that's my- That was kind of- ... rant ... 

Deonna: that was kind of how we were too. When we were doing it, you're filling out all this paperwork, and it was just making my nurse feel kind of uncomfortable, and I was like- Mm-hmm ... "Oh man, this is ..." I said, "They want you there. It's not that," but it didn't feel like that to me- No or her. I was kind of just like saying whatever at the time, 'cause I was just like, "This is weird." But I was talking to my college friend who's a diagnostician for a different district, [00:25:00] and she- Mm-hmm ... was like, "Yeah, they, yeah, these are things they can do. These are things they can't do." We were kind of going back and forth.

Rhandyl: I was doing the same thing. One of my best friends is a diagnostician. Yeah. I was like- but- ... sitting here, all the documents, I'm like, "Is this legal?" 

Deonna: It made ... Yeah, it did make me feel kinda icky because . I went in there by myself, but the nurse that is like the school nurse was in there, and it was really funny- Mm-hmm 'cause we put the pl- I had to give them the plan of care- Mm-hmm ... which is like 50 pages or something. Yeah. And I was like looking at the nurse- And they were like, "So do you legally deny our nursing services?" And I was like, "Yeah." Mm-hmm. And I kinda laughed, and she kinda laughed at me. Mm-hmm. And I remember telling the... 'cause we struggle finding nurses that are gonna get paid- Yeah ... quite a bit of money. And I asked the main, uh, SpEd girl that day, I was like, "Where are you guys gonna find these nurses who are [00:26:00] gonna just work for you for not that much money?" Like- yeah ... it's gonna be a nightmare. Let's say some parents are like, I don't wanna deal with the private duty nursing anymore. Yeah, I want the district to provide a one-on-one nurse for me." Right? 

Rhandyl: They're not gonna do that. 

Deonna: Where's the district gonna find these miracle- No ... workers? 

Rhandyl: Well, and, and- that's not gonna happen ... I asked the same thing during our ARD. I was like, "Yes, we deny it, but who are you saying is going to... like, where's this magic, like- 

Deonna: They don't have anyone ... 

Rhandyl: nurse?" And they pointed at the school nurse that- yeah ... and I was like- She would- ... "Oh, okay" ... die ... , did you review that plan of care? And sh- like she is so- We were like, "Oh, she likes 

Deonna: to try to die on us a lot" ... weird. We were like- " get excited" ... 

Rhandyl: "listen, like listen guys, nobody needs to stress out. She's not coming to school without a nurse." Yeah, I said that ... and then, there was the whole thing with- I was like, "She'll- ... the absences. I was like, I don't, I mean, that was... I could care less personally whether Remi has too many absences or [00:27:00] whatever. Yeah. But the state does. And so I'm like- Mm-hmm ... we really need to, if you're gonna implement something this strict there needs to be some give on- 

Deonna: Yeah ... '

Rhandyl: cause she's not viewed, she's viewed as a typical student, - Mm-hmm ... ... she's not coming to school by herself. So if a nurse- No calls in and I haven't gone through all of that, and I know you've gone to school with Allie, but I have not done the whole thing, and I personally don't think I could sit through a school day. 

Deonna: It's brutal. I- I 

Rhandyl: Allie- As a parent, I don't think I could ... 

Deonna: it's so brutal. Uh, from where I come from, it's just s- so hard because Allie's one of... there are a lot of kids that have autism at Allie's school and things like that, but physically, like- Mm-hmm ... there's one other kid in a wheelchair at Allie's school. And I am kinda glad she has somebody else there- Yeah ... but they're not in the same grade, so it's eh, but yeah, Allie's viewed as a typical student in the typical classroom. Yeah. And if she misses school, she has homework to make up and [00:28:00] things like that, and I told them I used to try to go to school with her. It affected my mental health so bad going to school with her and being like, "Oh, cool, my kid is the- Mm-hmm ... only one like this. This is so unfair." It just... And seeing how kids treat her, and e- they're not like, bullies, but just like, she's just like, a ghost. Like- ... completely ignore her. Mm-hmm.

And obviously there's those special kids that don't do that, but I would come home and get full-on depressed. I was like, "I can't do this." And so the only reason I would ever go to school with Allie is if she was gonna miss an entire week. If she's- Sure ... gonna miss a day or something, I'm just gonna have to get a doctor's note being like, "She couldn't come to school today. Her nurse was off." Yeah. Sucks to be us all, I guess. But yeah, it's- Yep ... that was a tough one. I felt like there was a lot of...

it was harder for you 'cause your nurses are around other nurses or other people that could- Mm-hmm ... be weird maybe. But- [00:29:00] Yeah ... yeah, it was not a good start to school. Everybody just felt not great, not wanted, and we already don't feel wanted- Yeah ... pretty much everywhere we go, so that was a brutal thing for a lot of us. 

Rhandyl: But- And I've always tried to be the mom at school, - Because like we've said in the past with medical staff, - mm-hmm ... I know for a fact that if I'm labeled the difficult parent, crazy mom, like- Mm-hmm then it's going to affect the way that Remi is treated at school or viewed at school, and people are going to dread seeing her at school because, oh no- Yep ... here's the crazy mom. And so, I have been able to avoid really any confrontation with the public school system until this year. And it's not like- Yeah ... there was confrontation, but I was, like, straight up like, "This is the way it is." Like- yeah ... very no BS and- mm-hmm ... and so- 

Deonna: It's how it has to be ... 

Rhandyl: uh, I don't [00:30:00] know. But it seems to all be okay now. Uh. Yeah. 

But another- It was- ... one of my lows, that is related to school so Remi, like I said, she's in fourth grade, and , we found out that she was gonna have the same teacher as she did last year. And so, everything's good. Same... It's not like a whole new person that she's gotta learn or someone's gotta learn- Mm-hmm ... her. This is good. Yeah. Just a few weeks into school her teacher has this really intense medical complication, like scary- Hm scary, major surgery. She's out for I don't know how long. So, they've had a substitute teacher in there like a long-term sub. But it's actually worked out really well. The sub- Oh, good ... has, is actually, , fabulous, and Remi likes her. That's amazing. And it's the nurses are like, "She's so good."

And , so whenever I found all that out, I was like, "Oh, no." I just thought it was just gonna be a snowball effect, like fourth grade- Yeah ... is just gonna suck. And 

Deonna: then it was okay. 

Rhandyl: But it's been okay, yeah. , And I think that [00:31:00] her teacher's on the mend, and thankfully that was, like, one of the, one of the bummers.

But- Hm ... probably our biggest low recently is the stomach bug took us all out. The whole house- Yep ... except my husband, Cole. Uh, somehow he skirted it. I don't know. He has a iron gut. I don't know. But literally- 

Deonna: That's how Dane is too. It's really annoying. 

Rhandyl: Ugh. Remi started it. I guess she caught it at, what we've just been talking about, school. Yep ... and then it was a domino effect. And both myself, Barrett, four nurses, both of our respite girls- 

Deonna: Yeah, I believe it ... like, 

Rhandyl: all of us, like boom. And it was horrible, and - it's just different as a mom, when you have both kids really sick and you're really sick, especially with something- Oh, yeah a stomach bug. . I took all the meds that I thought would help, and nothing helped. I mean, I ended up, about three days in, I went and got an IV. I was so drained. 

Deonna: Oh my gosh. 

Rhandyl: Yeah. , It was rough, but I finally bounced [00:32:00] back and, uh, so the kids, they bounced. I was like, "Oh my gosh," like, and yeah all of the nurses were in this group chat, just sick as dogs just like dead. They're like, take us now." It was horrible. Anybody that's had a, like whole household... but on top of that, our caregivers and nurses are sick, so then you don't have full coverage. You don't have support. So then you're sick- Yeah ... trying to figure out... It was just a nightmare. But anyway. Yeah. So that was like, probably the worst thing over the last few months, to be honest. Just- ... stomach bug, man. But yeah. What about your lows? 

Deonna: Mine, I don't know. I've just been feeling very like weird. You know when you just feel like anxious and you're just like, "I don't even know what's going on or why"? That's sort of how I've been feeling. But Cole starting high school really threw us, our whole family- ... for a loop. I just was so used to his giant middle school that I thought that him starting at a giant high school would be the same or something, but it was a big [00:33:00] change.

Like we were having to change the way we do everything in the afternoons, which I hate it when you have a good routine- Routine ... going, especially where Allie's involved, and then you're having to- Sure ... like change. Like she goes with me to get him every day at 4:00, so when they get home from school they're like rushing, trying to get all the afternoon stuff done, which is stuff that we have to do, like we don't have a choice. Mm-hmm. 

And so it's just been kind of a weird like beginning. He's okay now. He's doing really good, but it just, I don't know. Good. Like I think him starting high school made me realize that he's gonna leave us- ... soon. And when you're a parent of a disabled kid, when that non-disabled sibling, when you start to think about them leaving, it hits in a way- I can't even describe to other parents. Like other parents just miss their kids and they're sad, and that's bad enough as it is, but [00:34:00] like- yeah ... we're gonna miss like having almost another- 

Rhandyl: A caregiver for her. 

Deonna: Mm-hmm ... person in the house that is like supporting that sibling or whatever. And, and- Yeah we've talked about not putting too much pressure on them, and we really do try not to put too much pressure on him to be like her caregiver. That's not his job. But he does do a lot. Like he helps us and, yeah. So 

Rhandyl: that was kind of a- Well, it just, it comes natural. Yeah, and that's just who he is. I've been noticing it with Barrett. He's just all of the sudden like- Oh yeah I'll, I'll push her in a wheelchair to the room. I'll, you know- Mm-hmm ... it's just it's natural for these siblings to just... , it's not like we ask them to do anything. Especially brothers. I mean, he's five years old . It's just, yeah.

Deonna: Yep. That would be, but, so that was, ugh- ... that was weird. But we're okay now, and I mean, when he t- becomes a senior, I'm gonna be, like, in the- Oof ... fetal position the whole year. Oof. I can't even think about it, but ... 'Cause me and him are actually very close still for- Yeah ... a mom's son. [00:35:00] Yeah, no, I'm- I mean, I'm sure a lot of people are like that, but I don't know. I just... Ugh, it was kind of a weird beginning, but- sorry ...

i've been anxious about Allie starting school, and just Allie being at school, and I don't know. Like- Yeah ... I've just been being, like, really weird about some stuff. But I think the sadness of my- Well, change is hard. It is.

Well, and I think the sadness about my brother, like I... it's so weird, 'cause like my brother passed away in 2022, so I mean, it's almost the five-year anniversary, which most people who've never lost somebody would be like, "Girl- ... five years, get over it." No. What is going on? But it's like getting worse now. I thought I would be like- Oh, no ... like I was getting better for a while, and then it's like getting kind of bad again, and I think it's just like the permanency is like really starting to be like- oh my gosh, this is permanent. You know what I mean? Yeah. 

So I've been [00:36:00] like really weird about that, but I have also been struggling with insurance approvals. And that takes a toll on me. Dude. I- Allie's, Allie does this thing called a Volara. It's like the IPV machine. Yeah. But she's... I don't think she's ever been hospitalized since we started using this thing. I mean, it's a huge- Yeah, those- ... contributing factor,

Rhandyl: yeah. To, to her being okay. That's just how R- Holly's IPV is. It's just like- Mm-hmm ... it helps manage those lungs and secretions- yeah ... so well. She does not get pneumonia. So what, are they trying to deny it? 

Deonna: Yeah, they denied it. And- No ... not the machine, but like everything that you need to use the machine. To use it- so- Yeah, of course ... yeah. So I've been battling that with them, which luckily the company's- trying to help us fight it and they're- Good ... donating stuff to us while we wait to get appeals and, like, all this stuff. Oh, yeah. I do not wanna go to a fair hearing. I've done that before. It was really stressful. [00:37:00] Oi. And so- Yeah ... I'd like to avoid that.

But and then we're also people in Texas know about this, and I'm sure every state has this, but you can get reimbursed when you travel with your disabled kid to like, doctor's appointments. Mm-hmm. For like, you know, your gas and some... Y- people do hotels. I've never done that before, but, yeah ... food and things like that. Yeah. Well, the state owes us $700 and if it was $50 I'd be like, "Ah, who cares?" But I've been battling out trying to get this reimbursement because we... I mean, like anyone else I would like to have that. Yeah. We were promised that, and so every other day I've been on the phone just... you know what I mean. It's just, like- Oh, it's just a- between that- ... full-time job ... and the appeal, ugh.

But I finally- That's so annoying ... reported the company to the Texas Ombudsman. So if you ever are having major problems, you can do this. Yeah. And they help [00:38:00] support you, so little PSA about that. But I don't know. Hey, good to know. It's just been, like, a bunch of crap like- Just dealing with- ... from the time school started until now, and I'm just like... I told Dane today, I said, "I would like to go one 24-hour period without having a problem." Is that too much to ask? For real. Like- Alli, 

Rhandyl: it sounds like you need a getaway, girl. Ugh. It sounds like you need a- I do. I'm going to Dallas in a couple weeks. Like- ... girls trip somewhere. Good. Ugh. Yeah. I'm about to. Get away. 

Deonna: Yeah. But I mean, yeah, it's just typical stuff we deal with every day, and everyone that listens has the same problems. Yeah. 

Rhandyl: And it's just- And it's sometimes, it's when it rains, it pours ... 

Deonna: I just have to be honest about it 'cause it's the reality that we go through. It sucks. Yeah. Mm-hmm. Oh, it totally sucks. I... Yeah. I wanna, I told Dane- It's so much work ... on my tombstone it's gonna be, like, she got the Valera approved. I'm like, it's gonna kill me, all this stuff. Ugh. But anyways. 

Rhandyl: What a pain. 

Deonna: So what was your buffalo or random thing y'all did this- Uh, speaking [00:39:00] of- ... past couple months? 

Rhandyl: Yeah. Uh, my buffalo, speaking of getaways my husband and I celebrated our 16th, , wedding anniversary, and- Oh, yes ... we kinda spontaneously went up to the Rockies. So we had originally- We wanted to either do a little staycation or maybe just go somewhere close by. Yeah ... then we had finally decided on, , Ruidoso, New Mexico, Oh, yeah ... Cloudcroft area. Which isn't very far. It's three hours from Lubbock. And so- 

Deonna: It keeps flooding, though ... 

Rhandyl: we, so that was the thing. We'd already booked- Yeah ... an Airbnb cabin, and then it started flooding, and they've had a ton of fires up there the last few years, and so that's what's causing- They can't catch a break ... all the flooding. So then we thankfully , we always do this when we book an Airbnb or any, sort of rental anything, we always pay the extra so that in the event that- Yeah we have to c- cancel last minute, they're not gonna charge- Be like, "So when?" ... us like the whole stay. Yeah- Yeah ... basically, 'cause I'm like, "We can't, we have to do it."

So we ended up being able to [00:40:00] transfer our Airbnb funds, and we went to northern New Mexico up Red River/Angel Fire area and where- Yes ... it wasn't flooding, and it was just twice as far away. Originally, we had only just planned to do like a, quick weekend trip. Yeah. And so then we extended it a day because we were going so much further away. But it was so much fun. We got this cabin out, in the sticks, and it was secluded. It was so nice. We had a hot tub, - Yeah it was just perfect. Little spot. And then we we went to our favorite restaurant in Red River, Texas Reds. What's your 

Deonna: favorite? Texas Reds. I was gonna say, "

Rhandyl: What's your favorite?" Texas Reds, baby. Yeah.

Deonna: We used to go eat at Shotgun Willie's ... 

Rhandyl: so that's the only... We like Shotgun Willie's, Sundance- Oh, my gosh is a really nice Mexican food. Yeah, so but Texas Reds is our favorite. That was so funny. And that was like the only meal we ate out. The first night we got there, we had brought a bunch of groceries. My husband cooked chili 'cause we were like, "Yay, we're finally gonna get cold weather." And so we did that, and then [00:41:00] we packed a bunch of sandwich stuff in a cooler, and we had borrowed my parents' Ranger , and we went on a bunch of trails, and then we would just stop and picnic.

And all the way there and all the way back, and then the whole time we were there, we saw so much wildlife and Oh, yeah, I saw a lot of videos ... which we love That was cool. Yeah, outdoors, we love hunting, and so it was just so cool to see. It's just that time of year, everything's moving around. And then- Mm-hmm ... the color, like from the time we got there, and then three days on our way back, like the aspens were already... They had started to change when we got there, and then the day we left- Oh ... it was like a totally different view driving out of the, Those are so pretty too ... of the pass because like- They look like- it was, they were all changing, and I was like, "Oh, my gosh." ... golden coins.

Yeah. So, it was just a really relaxing... We had a really good time. The only crazy thing that happened while we were you commented on my post about going up to Goose Lake, so- 

Deonna: Oh my gosh. That's the most- You know the road dangerous road ever. Yes. So- When I saw you were up there- [00:42:00] We- ... I was like, "Oh my gosh" ... 

Rhandyl: we lost... So s- somehow, I don't know if it was when we stopped to picnic and we didn't get the tailgate of the Ranger closed good, or if how bumpy it is that it just came unlatched. I don't know. It's so bumpy. But all of a sudden we looked back and our cooler, two gas cans, the jack, like literally everything that was in the back- of the Ranger was gone. We had to- 

Deonna: Like off a cliff ... like- Probably ... 

Rhandyl: turn around, and we found everything but one gas can and my big Yeti water bottle, and they probably went off a cliff. , Or someone picked it up- Yeah ... and we're like, "Oh, we..." Finders keepers situation. Yep. Oh. 

The last time I was telling Cole- That's good ... I can't even believe the last time that , him and I together, went up there on a side-by-side, I was actually pregnant with Remi. It was like- It made you go into labor ... the month before I had her. I'm pretty sure. I'm like, I was, as I was driving, I was like, "This is probably why I had pre-term labor, 'cause I went up- Oh my gosh this stupid trail." But yeah. Oh, that's bad. What was your [00:43:00] Buffalo? 

Deonna: Mine, this was just a fun little thing that we did in the neighborhood and I think we're gonna have to do it again 'cause it was a hit. But, uh, I had seen on Pinterest that you could make a caterpillar out of rocks, and one of Allie's best friends lives three houses down from us. Mm-hmm. And so I had showed the girls, 'cause her friend is at our house sometimes, I showed the girls this idea and I was like, "Hey, do you guys wanna do this? I'll paint the head of the caterpillar like a rock, and then we can decorate some little rocks and put them behind it, and put it in front of our house." Mm-hmm. "And then you girls can make a video..." 'Cause our neighborhood has its own private Facebook group. Yeah. And I said, "You could put a video. I'll help you make it, and you can say whatever you want, and we'll ask everyone to, participate in it with us." Yeah. And-

Rhandyl: How fun ... 

Deonna: they had so much fun with it. [00:44:00] We put it out there. We made the video and everything. And - everybody participated. It was hilarious. 

Rhandyl: Yay. Like- So it's this huge long caterpillar- huge ... everybody puts rocks. I mean- oh, that's cool ... 

Deonna: it was so huge. And- ... we left it up for like weeks, and then finally, like my husband's not as whimsical as me so, he was like, "Okay, this has been fun, but like I- ... it's gotta go." And so we got rid of it, like after... Y- like we told everybody, "Hey, you can come get your rock if you want. We're gonna like-" Yeah "end it once school starts and the kids go back." And so, people were annoyed with us that we took it down. 

Rhandyl: Oh, boy. 

Deonna: But, This one guy actually- I've heard that ... knocked on the door, and it was funny 'cause Dane had to answer and he's like- ... "Where's that rock caterpillar? That was fun. You guys should have left that up permanently." And Dane's like, "Oh yeah." He said something, I don't remember. Mm-hmm. I was like rat."

But we were saying- That's funny ... we might have to do a pumpkin patch and do, [00:45:00] you know- Oh, cute, yes ... everyone can do a pump- like a pumpkin rock. Do it. And then I was saying for Christmas we could do s- Christmas themed- caterpillar or something. Oh, fun. So we may do it again. 

Rhandyl: You should totally... Oh, I love that idea. But we did that and that was super fun. I'm sure allie was obsessed. 

Deonna: Oh, they would like- I'm sure she was obsessed. That's so cute ... Blake and her friend would come, knock on the door and be like, "Three more rocks were added." Ah. And she would go out there and take pictures and bring it in so Allie could see. That's so cute. And so... 'cause the front of our house is not accessible, which is hilarious. , But we think we're basically gonna have to do this seasonally. It was so much fun, and the kids just, it was really cute. I would look out my window and see these little moms with their kids coming and, like- That's so fun ... laying their rock down and all this stuff. So it was super fun. We may have to just do it all the time, but, 

Rhandyl: Yeah ... yeah. And Dane's just gonna have to get over it and just accept it- He's just gonna have to be- and embrace it ... 

Deonna: okay with it. Like- ... I'm like, okay. I know. It was funny. Some people actually- So funny ... did really good [00:46:00] ones, like very artistic. I was like- nice ... oh my gosh. We just did really fast ones, sure. But yeah. No, some people really brought their A-game. They were trying to show out. I... Yeah, they were. They really were. But- That's cute ...

so that's kind of what we've been up to. We do this every once in a while just to let you guys into our day-to-day so you know where we're coming from and our point of view when we talk about all this other stuff. And so we hope you guys enjoy these episodes, 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.