Deonna: Hey y'all, welcome back to Raising Disabled. So we did not do a catch up last time because life was happening for both of us. And so we're going to just catch up before we get started into our episode. We got a fun one today, but first we're just going to catch you up on what we've been up to. So you get a little glimpse into our day to day life, but our life was crazy.

A few weeks because we got an entire new floor in our entire house, except for the bathrooms. And so that's one of those deals where, yeah, if you knew how big of a pain in the butt it was going to be, you maybe wouldn't do it. It was one of those things because we had to basically move out all of our stuff into the garage so that they could have a good.

working space, and especially with Allie's stuff, like we're really uptight about her stuff, staying clean and not being touched by other people. So , we had to move into an Airbnb, which was great, but not our house. And so it was, Pretty challenging. I think our nurses were ready to be back home at our home.

Oh yeah, I'm sure. And you guys too. Oh yeah. We were so over it because we were not able to spread out really, and so we were all just on top of each other. Our nurses were working we tried to make it as good of a situation, but it was pretty tough. 

Rhandyl: So how long were y'all in there? 

Deonna: I think we were in there for like nine, 10 days or something, and they really, we used Yates flooring here in Lubbock and I had the best experience with them ever. Like I will always sing their praises because they even our tile guy, Robert, he stayed in our house and worked all weekend, a Valentine weekend just to help us get back into the house earlier. And so

Rhandyl: that's a big deal. 

Deonna: Yeah, they were so great, but our nurses were ready to be back with Allie's Allie's bed, which is up higher and just, it was nuts. 

But during that time we went to Master Follies, which is this really fun LCU show. that we go to every year. It's like an alumni thing. I was in it. Everybody in my family was in it. All my cousins and my husband and brother and everybody. So my kids like to go watch it. 

And Allie loves this girl named Brooklyn, who is disabled. She actually got paralyzed right before Allie. So Allie likes to go see her. I think this was her last year, but she's in the show in her chair and it just makes Allie feel like. That's possible. And so that was fun. And then we did a lot of college sports the last couple of weeks. We went to the tech basketball game where Patrick Mahone's was there.

Rhandyl: And, oh, you did that. And then you saw the 

Deonna: the golf shot. 

Rhandyl: Yeah. I saw that kid made the today show. 

Deonna: I did. It was funny. , so usually either like special alumni or, you know, something will be sitting in that seat right there by the team. And we always are curious Oh, who is that? Is it someone, it's usually like rich people that you've never heard of, but, we saw somebody sitting there and I didn't know who it was because we were sitting from the back and then we realized it was him and my son was like, Oh my gosh, so it was cool. And he had fun with the crowd, but yeah, the golf shot was the highlight of the whole game for everybody. And yeah, I watched him on the today show. He was so cute. Like it was, 

Rhandyl: we watched that game on TV, but yeah, it was. It was pretty cool. Yeah, you missed all the stuff like that. I know, but we, of course, , we saw and heard about it like right after Half Time. 

Deonna: It was really loud in there. We've started taking Allie to some stuff like that, but that Texas Tech fans are crazy with a capital C, like they're crazy. Yeah. Yeah. And yeah, Allie would not have enjoyed that atmosphere. It was loud from start to finish. And so glad we left her home with nursing for that one. She was okay with that, but, 

and then the other day I went and took Cole to the big 12 track championships cause he's into track. He's doing track meets now and everything. So that was cool. I had never seen a high level track meet, so it was indoors and yeah, it was. 

Rhandyl: Yeah. I'm jealous when you told me I was like, oh man, cause I love track meets. I love track meets. So 

Deonna: they're fun. , it's been fun watching my son do it. He does triple jump, long jump hurdles, and he does really good. So he got to go out on the field where the indoor fields where the football team practices and jump hurdles because OT's husband took us back behind the scenes and let us like, Snoop around. Ooh, VIP. Yeah. I know, right? 

And that was fun. He was so excited to get to jump over a tech hurdle. How cool. All that. But, and then Allie today, this was so funny. , it's Dr. Seuss week and, she loves dressing up. It's something she loves to do, which I do too. Dressing up is so much fun. And so she dressed up full blown costume, cat in the hat. Nice! And her , aide at school dressed up and her nurse dressed up as Thing 1 and Thing 2. So they all went together as a group costume and when my, when Allie's nurse, Macy texted me, she's like, Allie's the only kid in her class that even dressed up and she doesn't even know or care. She's like living her best life. I love it. With the attention. 

Because I would have died if I had walked into the class and I was the only one that dressed up as a little kid, I would have been like, oh, gosh, I don't want to be here anymore. So she's more confident than I was, that's for sure. Good for her.

That's what we've been up to. What have y'all been up to? 

Rhandyl: I feel like my catch ups lately have just been pretty negative, unfortunately, but such is life. It happens. It happens. Yeah, we had a ski trip planned a few weeks back and my parents have started this tradition getting a cabin in Red River, New Mexico. Every February, and it's usually a big enough cabin that myself and my siblings and all of our families can go, and if we can go. If we can't. , there's no pressure. So we made plans, we got nursing all worked out to go with us, and my husband requested off work , and so we. get everything packed. It takes days to pack everything. And so we're packed up, ready to go. And the night before we left, Remi spiked a fever and just continuously kept spiking fevers and didn't do well overnight into the next morning. 

And we hadn't, made the decision whether we were not going yet. We were just trying to see how she was doing, if it was a fluke thing, because sometimes she'll do some fluke stuff, but, yeah, it was more serious. And my husband and I talked about it, and he was like, you need to go. You just take our son Barrett and then I'll stay home with Remi. We did that, my toddler and I on a road trip lots of stopping on the side of the road to go to the bathroom he popped his first squat ever, so that was fun. We, if you know this drive from here to there, it is, there's really nothing it's hundreds of miles between gas stations. It's, yeah, desolate. 

Deonna: Yeah. New Mexico can have hours with no town. Yes. It is such a huge state. People don't really realize how big it is. 

Rhandyl: Yeah. And so that was fun. He actually did really well. Considering, so we get there and day two, my son woke up with a really high fever and horrible cough. I've never seen him act that sick. He didn't get up off of the couch all day. We were basically having to force him to drink. I think it was. Terrible. And then my parents got a call that my grandma was admitted to the hospital. I don't know. And yeah. And 

Deonna: was this your grandma that was on the Today Show?

Rhandyl: Yes. 

Deonna: Aww. I saw it was one year since that fire and I thought about that this morning. 

Rhandyl: Yeah. So she, but she's okay. , so we get that call and then the next day my nephew that was there, he woke up vomiting and feeling really sick. So needless to say, we cut our trip short. I did though get to ski one full day. Yeah. Versus three. But yeah, we'll take it. 

Deonna: At least you got to do something. Yeah. Because I didn't know that. I thought you just hung out with him at the cabin and he was sick the whole time and 

Rhandyl: mom took one for the team and Yeah, I was able to ski. That's nice. For a day. Yeah. And then we all. Loaded up with meds and tried to get back home before, any of the adults started getting sick. And then once we got home, it was a domino effect with everyone that was there. You're like, you're welcome. That was fun. Yeah. 

Then everything was rolling fine. Kids went back to school, daycare, all the things. I'm back at work and then Remi. Ended up with the flu . And a lot of her kids in class have the flu so it's just, this year's been so bad with the flu, and it's March, and here we are.

Deonna: I heard it was the worst flu season that, That we've experienced in a really long time. I hardly know any homes that haven't been affected by it. It's like we've, up until now, dodged it, but I don't know. It's alive and well. 

Rhandyl: Yeah, I reached out to Remi's pediatrician and was like, Look, this is what It's happening, , she's been exposed, at school, , the house do you want us to come in? And she was like, no, I'm just going, she's with a pandemic like this, with the flu, she was like, I can prescribe Tamiflu without actually having a clinical visit. Yeah, that was nice. So she did get three doses In the first 24 hours after her fever spiked. She's handling it pretty well. , but it's just, one of those things. So really that's been our last February was not great. No but, things are going to turn around and look up. I know. I just know it. 

Deonna: The sun is coming out. It's March.

Rhandyl: Yeah. We are going We'll talk about it probably on our next catch up, but we do have plans to go home for St. Patrick's, so we're really looking forward to that. That's coming up soon. Yeah. 

Deonna: Yeah, we were gonna go on a big spring break trip. We were going to go to Morgan's Wonderland and go do all these things in San Antonio. And then we were going to go to my parents cabin in New Mexico. My husband has to go to a training the week of spring break. We had almost started booking everything and I'm glad we didn't because he got this training he has to go to. And so we'll have to do that some other time, 

but me and the kids are going to go on our first. Solo trip with a nurse with our nurse, Macy to the cabin with my mom and dad. So , I'm excited about it. And I, having a nurse with me will make me feel like, okay, I've got somebody else helping me do all this stuff. And my mom and dad helped me do everything too. But yeah, it is a little like what we've talked about, you're going out in the boonies area with your medically fragile kids.

So hopefully, yeah, we'll hopefully we'll have good things to report after spring break. Yes, I hope so. Oh, I hate that your trip got messed up. It's just such a frustrating thing just for regular families. But when you have a kid who has a disability and they're getting sick, like what's happening right now with Remi you just don't know if the flu could land you in the hospital.

Rhandyl: Yeah, this is actually her first time to get the flu, so I didn't know what to expect. 

Deonna: At least she has such crazy interventions just at your fingertips.

Rhandyl: Exactly. We have basically an ICU in our house. Yeah, that's how we are. Let's, yeah, we're just managing her and all of her things at home, trying to keep her comfortable and happy. It's all we can do and just ride it out. 

Deonna: Yeah, that's true, but that's what we've been up to and so we are really excited about this episode today. It is Life Hacks for Parents of Disabled Kids and these are things that our listeners do and that me and Remi do, er, me and Remi do these things together.

Me and Rhandyl do these things. Just make our lives a little bit easier. And so we will see you guys there.

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Deonna:  So today we are going to talk about life hacks for parents of disabled kids. And life hacks are just things that make your life easier. These are things that me and Rhandyl and our friends and listeners or friends on social media have shared with us about ways to just make your life even easier. 1 percent easier because we just have so much to do as parents of disabled kids. And we're just, we're regular moms on top of all this other stuff. Like the laundry doesn't stop. The dishes don't stop. 

And here's. We're just going to share some ideas from our friends first and then we'll Talk about some of our ideas because we have a whole bunch of ideas for you guys And hopefully this will be a really good resource for y'all for the future 

So our first, group is from Facebook and we'd love it if you guys will follow us there.

But our first comment is from Angela Roll and she said that she schedules text messages. She says, by the time I'm laying in bed, going through my phone, it is an unreasonable time to respond to my text, which is 90 percent of the time from her therapist. I reply and schedule my reply to send in the morning so they don't get texts at 10 PM or later.

And I didn't even know you could do this. I didn't either. I'm gonna have to look on my phone and figure out how to do this because I inappropriately send people texts too early in the morning. So do I. Because I'm like, oh shoot, I'm up at six. So I'm thinking, this person needs to also be up at six.

Rhandyl: I know. I love it because you and I are always texting early in the morning. Yeah. And. We know we're awake. Because we know we're awake. But yeah, I did, I thought the same thing. I read this and I'm like, wait, that's a thing. You can actually schedule texts like, yeah, no idea, 

Deonna: Find a tutorial. But I love this idea because I do wake up and I look at my calendar every morning and I'm thinking already, and we have. This board, which I'm going to talk about, but I walked by that board at 6 a. m. and think I got to call this person, text this person. So yeah, I love that idea. So definitely going and I schedule a lot of stuff for work, but I didn't know you could schedule texts like from your phone. So we're going to have to search how to do that for sure.

Rhandyl: Yes. Our next follower, Bernice Vasquez, she said, I have a pill organizer for day and night meds, ready for the week. And it's easy to leave with caretakers as well. 

And I thought this was a good idea. Most of Remi's meds are not in pill form. So they're, usually liquid for her G button. But this is A great idea to have, have an organizer with labels and everything so that there's no mistakes made by, a parent or just anyone that's taking care of your child. So

And we use a pill organizer when we travel with Allie because some of hers are ones that she crushes or that we have to crush to put in her G tube or tabs, like vitamins and stuff. , yeah, that's a great idea if you're a pill taker. 

Our friend Alex Dragich said she has a medical binder, she has a family calendar label maker for supplies, ooh, I love my label maker. Me too. I'm always labeling stuff, it's so fun. She has a shared z This was one I really liked. She has a shared notes list of all the important info and printout of meds. So you don't have to repeat yourself at appointments. 

So I thought about doing that, like having, it's nice to have a printout. You can just hand and be like, these are her meds, staple that to her chart. Don't make me write all this out. It's ridiculous, but. And then having the shared notes, like me and Dane should have a hundred shared notes together and we don't like, I'm always texting him things and back and forth. And I'll explain more about what I do now with that, but it is good to have, like me and you basically run our entire podcast off shared notes.

So yeah. Do you and your husband have shared notes? 

, not really for medical things, we have shared notes for this is funny, we have a hunting trip list that we had shared. Yeah, because my notes for the packing, I, it's like my thing and then he has his thing, but yeah I love, the family calendar, which I'll get into that whenever I talk about my hacks, but it's definitely very helpful.

And of course the label maker for sure. I'm busting that thing out all the time. That was probably one of my best purchases once Remi came home from the hospital for sure. Yeah, and I have a list of meds printed out. I need to update it. Especially when Remi's meds were changing so much.

I was always updating and reprinting, putting them in her bag that's always with her so that Yeah, like you said you don't have to just try to remember them all But now that she's pretty consistent with her meds and so many of her meds are actually over the counter so I don't keep up with that as much as I should but 

Yeah, so our next listener, Ruby, she always has the greatest stuff greatest ideas. She's so organized. Yes, she is. Okay, Ruby Mosley. Making us all look bad. Ha, she said she has a calendar, and she says she has a digital and a paper copy supply inventory. For all the medical supplies daily schedule, daily supplies in an easy to access spot in the kitchen. And I laugh because she said, in pretty baskets, of course. It's gotta be pretty. Yeah, it's gotta be pretty. Mine are like, all behind a cabinet, usually, or in a closet. Same. Yeah. And then she said, backup supplies in a storage room, sorted, labeled, and dated. Yes. Love that. In her notes section on her phone, she has a packing list for everything. Same. Same. That should be probably be shared with nurses. I usually print it off and so they have it. And they can just check stuff if they're helping me pack stuff. Yeah. 

Um, Okay. She said emergency bag by the garage door that has everything we would need for a two night hospital stay and a duffel bag in the closet that has three to five days ready for mom. I'm like, wow, she's prepared. I know. I do not do that. 

Deonna: Yeah, I don't think I could actually have an entire duffel bag packed

so our next uh, comment was from Colleen Carraher, I think, and it says her own social, she has her own social media page, like the kid does. And it says where I can follow other medical moms, kids and pages so that her personal social media doesn't get filled up with. That's similar content, like the disability world and she said, then I can choose if I want to be in that medical mom mindset and just scroll and take a break from life 

and I do see, I've never done that. Allie's just, everything is all in one thing. Now, with the Raising Disabled account that we run, I only follow mostly disability accounts. And so I like to go on there and look at what people are up to and stuff. But yeah, my personal Instagram algorithm is messed up now in some ways where I see a lot of stuff that is similar to my life, which is great. But then Sometimes, yeah, it's nice to get an escape. So I totally understand why she does this. 

Rhandyl: I felt this because when we first started down this road with Remi, we were updating because so many people, it's overwhelming when you're going through something with all the text messages and phone calls. And so we were updating everyone on Facebook, which , it made our lives easier. But. Cole and I were doing it on our personal accounts and then for probably close to a year and then around her first birthday, I created her Team Remi Facebook page and we, Are both admins in that page and we're not as active as we were just because Remi is, stable and living her life, but that's where all of our updates would go for her and it was public because we were getting so many random friend requests, which they weren't random, they were really wanting to know how Remi was doing on our personal accounts, but then when we made that page, it definitely made everything a lot easier to keep in check and so yeah I agree with this, and it is nice now, like you said, we have our raising disabled Instagram and Facebook and then also our personal and so it does make a difference when I'm looking at I mean My reels are way different on my personal account than they are on our disabled account Which is a should be and so it's it definitely does separate what you're able to look at and what you choose to look at in your free time. So yeah, I agree with Colleen on this one. 

Another follower on Instagram, her name's Grace, she just put Lexapro, and I laughed because it was, 

Deonna: I'm like, I had to Google what that was. I didn't even know what that was.

Rhandyl: Oh, really? No. Yeah. I take daily Lexapro, and I laughed at this because I am like, yes. That's what you're saying. I yeah, I didn't have to start taking this until, After my son was born, but it definitely helps me manage life better huh, and so I was like, oh wow. Yes. This is a huge life hack of mine as well And it just made me Crack up. That was her literal one word Lexapro and I'm like, yeah, 

Deonna: message me. Cause I've been like Instagram friends with this girl for a while. And she, her daughter has SMA. We need to talk to her someday. Cause she's really funny. And she has a very dark sense of humor. says things that I'm like, Oh my gosh. But yeah, she messaged me after she commented this and was like, I'm gonna, my comment's going to get flagged or something. And I was like, Oh my gosh, I gotta go see what you said now. Cause it must be good. But yeah I did not know what that was, but now I do. And yeah it's sometimes you just gotta do that stuff. It's helpful. The ultimate life hack. 

So another comment from Instagram was Jessica, okay, I am going to have a hard time with this one, Jessica Geohagen, maybe, but she I think her son's name is Fyod. I don't know how to say that. She's probably internally dying right now that I'm going to say it wrong. But she was saying that anything her son wants to eat can be made into a grilled cheese sandwich. 

And it just made me laugh because I'm just imagining them putting all this like healthy stuff, trying to like sandwich it or hide it inside of a grilled cheese, but, I've tried to do certain things like that too, like with Allie, is I'll sneak something into something else and see if she notices. And sometimes she does, but I don't know. They're really good at catching you, but it sounds like this is a good vehicle for them to Yeah, I love it. Put anything, I remember one time my mom tried to put a pill in a biscuit and like, cause I couldn't take pills and I was old too. This is embarrassing. I was so old and she tried to shove a pill into a biscuit and I was like, you're a dog. Yeah, and I was like, Oh my gosh. And she's like, dang it. If you would have just bit it just a different way, that thing would have been going down and I was like, Oh my gosh, but yeah, so when I saw that, I thought of my mom and the dog or trying to stick a pill she did, she tried so many things to get me to take pills. She probably is listening to this right now and being like, seriously, I'm getting mad just thinking about it. It was bad, but yeah. Grilled cheese. She should have done a grilled cheese. I wouldn't have noticed. I'd be like, why does my tomato soup taste like medicine? Yeah. But, anyways. 

Rhandyl: Oh, that's funny. Our next follower, Mia Strong underscore G S D I V, She said, Some of the best products that I now could never live without I found on Etsy. There's lots of useful items for feeding pumps. 

And, I totally agree, Etsy's wonderful, I've thought of different things and I'm like, hey, I wonder if this has been invented, and I'll go on Etsy. Etsy's such a great, Outlet for caregivers that, have invented something or created something for their own kid and , they want to share it. And I've had other caregivers, I'll see something that they have and I'm like, Oh my gosh, that's such a great idea. Did you make that? And they're like, no, I got it on Etsy. And so , I loved this comment because it is very true. There are so many things that you probably wish that was invented or and then they actually have been and people are selling them on Etsy, so 

Deonna: , we have a little thing that looks like a door hanger that holds the feed bag. That's from Etsy.

Rhandyl: I have seen those a lot. They're awesome. 

Deonna: I feel like ever since the 3D printer came out, dads are coming up with things cause I've destroyed those feed bag where I cannot get that twist. I cannot get that untwisted sometimes off of the G tube extension. Yeah. And I've seen dads make these little screwdriver type deal, or little wrenches that get it open and stuff. Oh yeah, lots of dads and 3D printers out there making all this cool stuff. 

So our next one is Now I see journey and she said, we gave up on overnight pump feed since baby girl takes her G tube out all the time. And it says bolus feeds only for now, which we've switched into the bolus, but we still do overnight water, at our house. But she said, I've mentally saved. The pull noodle hack. So she said what this is when you have any cords in the bed with a mobile infant or toddler, you basically cut a pool noodle or pipe insulation, and then you slide that all the way down. And then you just slide that pump bag tube in it to prevent it from getting wrapped around your kids. So you just cut the slit in there and slide that in. And Allie's not moving around, but like Remi does. I wonder if this would work or not. I don't know. 

Rhandyl: Man, yes. I think of all the times when she was on overnight feeds when she, we'd call it milking the bed, we'd just get up and check on her and there's just like a. Bed full of so frustrating. Yeah, and so this man I have never even heard of this And so when I read it, I'm like, wow, that is genius. I'm gonna pass it on to Families that I know have trouble with this for sure cuz yeah, I mean it's such a simple thing, but yeah, This , is very great advice, and it would be very helpful for a lot of kids that are on, especially overnight feeds. 

Deonna: Genius. Yes. What are some of your life hacks? You probably have a lot from doing this for so long. 

Rhandyl: I've learned a lot from a lot of my things came from mistakes that. I've learned. Oh, yeah, you know Do it this way or don't forget this because if you forgot it then or whatever But some of my number ones I would say especially you know in my case with Remi with her very medically complex needs is Nurses, they are my biggest help with her. So she has private duty nurses around the clock most of the time. And I, there are some things that I know it's definitely state specific, but we live in Texas and if you're. kid qualifies for it, they can get respite services, which is someone that you can either hire yourself or you choose, or you can choose to go through a agency for respite.

And that is just a person that comes in and can help you with your daily chores. They can, there's things that they cannot do medically with your kid, but they can help bathe them. They can help feed them. They can help with their daily chores. , you can hire family members. In Texas, you cannot be respite if you're a direct caregiver parent, but when my sister lived in Lubbock, with, in the same town when she was in college, she was one of our respite. And so she could get paid to come and help like she always did. And then my mom is still an employee for a respite. And so when she comes and helps whenever, say my husband and I are going to be out of town, she'll come and she's able to clock in and out on this app. And depending on your kiddo, you qualify for so many hours a month for these hours, 

but over the last year and a half, we found someone here locally that comes every afternoon. weekdays when Remi's out of school, and she helps with food prep , for Remi. She helps with trach care with a nurse. She helps feed Remi. She helps bathe her. She helps with the laundry dishes, things like that. It's just so helpful because I'm at work Monday through Friday until, pretty late in the Being able to know that someone is there to help with these cares so that we're not having to wait till so late at night.

It's just, gosh, it's been such a awesome thing. We used to go through agency, but now I am the employer and it's a process that you go through, but our Medicaid case manager helped walk me through everything and it was actually a really easy thing to do. So that's some advice that's a life hack that I'm, would recommend if you can find someone that you can trust that's reliable. Do it. Yeah. And then we both use the Texas HIPP program. They reimburse. So if your child has primary insurance and Medicaid you can qualify for reimbursement on your private insurance deductibles. And so that's been very helpful. 

Deonna: Oh, yeah, we get a big check every month that covers our primary care. Yeah, it's wonderful. Just because, our private insurance, just because they would rather you have private insurance and not be stuck with the entire bill. Yeah. No, that's like my favorite little check.

Rhandyl: Yeah, it's such a great thing. Do nothing and you get it. Yeah and then there's so many foundations that a lot of people don't know about and so if you're looking and your child needs a new Seating system or wheelchair or any sort of equipment house modifications, car modifications. There's lots of resources out there. There's also lots of foundations everywhere that you may not know about. Ask your physical therapist. Ask your just any therapy agency. Ask around to other caregivers about foundations that may help pick up. , the extra costs that say insurance may not pay for that you may be responsible for. There's so many foundations out there that are meant for this and we've had a quite a few foundations help us out with certain things the past few years. And yeah. 

Deonna: We've both viewed Joseph Thomas and, there's a Instagram called Advocacy Abby, I think. Yes. And she has a whole website. Where she has every single foundation based off where you live and what you need and so you could check that out too. 

Rhandyl: Yeah. So in a nutshell, resources and help are my big life hacks. Yeah. So those took a lot of learning and a lot of. Just like giving myself grace and the okay that I need all that help but it definitely he'll it's it helps a lot 

so yeah we talked about the Calendar thing. I have a an app called my fam cal app and I love it because you can put in each Person in your family and it's all color coded and and you share it like my husband and I are on it and then whenever they add something, it pops up in there. There's all sorts of calendars, but that one's my favorite cause it doesn't interfere with my work calendar. The outlook, like I get so many things on there or my Google calendar that's not really related to. I like to keep the fam Cal app just strictly for our specific family appointments and things like that, right? 

Deonna: I use Outlook and I have all the notification alerts on, so it's always giving me the 15 minute warning. Otherwise I would lose my my mind, 

Rhandyl: right? I go in and you can edit how many reminders you get and. Like how long and how many days ahead, how many minutes ahead. I love it. 

Deonna: Fam cow app. I'll have to look that up.

Rhandyl: And then of course we have a supply closet. Yes, my husband installed a the shelving system. Just one of those ones you can buy at Lowe's is the metal ones that you screw into the wall. And, you can cut it and make it perfect for your closet. And then I use like the clear shoe boxes with the lids that you can just get at the dollar store that are really cheap for all sorts of supplies. Especially with our girls, we have with the vents and all the little tiny pieces. It's just keeps everything. Are they at dollar Tree? 

You can get them at Dollar Tree, Dollar General. I'll have to go look at that. They're really, yeah. And I just use my label maker and What needs to go in there, and it's so it's easy for the nurses to find things if they're looking for something specific everything's in there, in those little shoe boxes, and they're clear, so you can see That's cool. I'm gonna have to go look and they're stackable, too. It's great. 

But we have a medicine cabinet specifically for her meds. We have a syringe organizer. It's actually a jewelry organizer, but it's clear. I don't know what my thing is. I like the clear things um, but um, yeah, so then everything overnight that needs to be charged.

The nurses, they charge it, the suction machines, anything portable, her wheelchair wheels now have to be charged overnight. Her on the go pulse ox, everything, her speaking device, all the things are charged overnight. 

I do at least a load of laundry every day, if not two. But , the biggest thing that I've learned, and I learned this from a friend, was the color catchers, the Shout color catchers, there's different brands out there. But. They're lifesavers because you don't have to color sort anything. You just throw everything in there and put a couple of shout color catchers in there. And even if it's a brand new shirt that's red, you put it in there with whites. I'm not kidding you, it will not. That's crazy. It will not mix. And they are amazing. That's cool. And that saves me from having to sort out the laundry. I can just throw it all in. Of course, if it's something that needs to be gently, whatever, that's different. But this is the color catchers. Boom. Amazing. 

Rhandyl: And then, I pick up my house daily, like at night or in the morning, depending on what I'm feeling. But I try to keep everything picked up just for my own sanity. I'm kind of type A about that. And also my respite. She is wonderful. She helps me do that. She'll run my little sweeper. Get all the little dead grass. She likes to keep Remi's room tidy. She's a big organizer. It's, yes. She's super helpful. 

And then one of my big things that I like to do for all of us, especially my kids, because they're growing and they don't keep the same clothes annually, typically, yeah. I like to go through seasonally and go through drawers, closets, get out anything that I know that next season they're not going to fit in. And then I also take out winter clothes and put in spring and summer clothes in their drawers and then store things that are not in that season elsewhere.

Yeah. And, but I consign all of our clothes or I hand it down to my sister who has , a younger son. So I consign. All of Remi's clothes that she outgrows and then I also consign all my kids clothes. So there's a consignment sale that I love that's here, and there's, it's a lot of places. It's called Just Between Friends. Oh yeah. And I, yeah. I get, they have wonderful used clothes and , most of my kids clothes come from there. It's twice a year one right before spring, one right before winter. And 

Deonna: you'll have to tell me when it is, because I always go in to look at those, but I never know when they're coming up.

Rhandyl: Yeah. It's coming up soon, actually. And then we always have, if you ever see us out and about with Remi, we have a rolling duffel bag that goes with her everywhere and it has. Extra supplies of anything you can think of oxygen regulator, multiple changes of clothes that goes everywhere that Remi goes and we typically, every outing or every day at school, it's being used for sure.

We've talked lots about the lists, so there's, I have lists for everything. packing lists that are pages long. We've talked about this a lot, but in I Swear Every Trip something gets added or taken away because, we forget something or I'm like, oh, we don't actually bring this anymore. I do make daily priority lists. Almost every night, I'll think, okay, oh, who do I need to call first thing in the morning? , But I prioritize it to what needs to be done first, 

and then I have an ongoing grocery list., I'm a big grocery pickup girl I hate going into the grocery store, so I usually keep a I'll open up my Walmart app and I'll just add things as I think of it throughout the week. And then I've trained my nurse, Remi's nurses and my respite girl, they'll tell me, Hey we're running low on this. It's usually an over the counter med or something that we mix Remi's foods with all the time, things like that. And so I just go in and then as soon as I think of something, I put it in the app and then whenever it's time to order, it's all there. And another thing that my Respite Girl can do is pick up my Walmart pickups. So I usually plan my Walmart pickups. Around when she's going to be headed to our house. She can clock in remotely she'll go to the pharmacy for me for Remi's medicine Sometimes it's just 

Deonna: you're like convincing me right now.

Rhandyl: Yeah it's very helpful 

Deonna: does all this stuff that the mom doesn't want to do Yeah, 

Rhandyl: or like it's like so much just very time consuming. We all know Yeah, and so 

Deonna: We go pick up your son from practice. No kidding. 

Rhandyl: I'm just kidding. Oh, but yeah, we meal prep weekly. That's a big thing in our house.

My husband started about a year ago. He took that job up and it's been Super helpful. Yeah. Financially. 

Deonna: For lunches? Yeah. do it mainly for lunches? 

Rhandyl: No, actually. It's usually for dinners. Oh. Because I'm getting home pretty late. You don't prep for dinners. And he gets home earlier than me. He goes to work earlier than me and gets home a little earlier. But he does a big meal each week that we Can all eat on for the majority of the week and then we always make sure that it's something that we can easily blend for Remi to eat in a blended texture and then if there's something that we need to add to it to help blend it, then he'll make that. And then we blend her food with a ninja blender lunches we're still not great with. Now we meal prep Remi's food each meal she has is prepped and , our respite attendant, Every night before she leaves she typically has Remi's Breakfast lunch and snack that is going to go to school with her because she can't just eat the food at school And so yeah we have it ready to go and I'm able to just first thing in the morning Grab it put it in her cooler bag and put it in her backpack.

So Another purchase that we made the last couple years because travel takes It's so much room and we got an enclosed trailer for our long trips where we're going to need to take everything but the kitchen sink and that has been extremely helpful. 

Deonna: Is it like a mini U Haul like just a little mini one?

Rhandyl: It's a small, yeah, just one axle enclosed I'd say it's like eight foot by seven foot, eight by six, something like that. Oh yeah. Yeah, and so we put all of our. Suitcases and all the things that are replaceable and then all of her medical equipment goes in the Suburban with us and so right.

Yeah, and a fun thing that we've used forever I wouldn't say fun, but it is It's super useful on trips doesn't take up much space in the car, is a blow up toddler mattress and it is essentially a blow up swimming pool, but it has a blow up mattress that goes inside of it. So she still has the bumpers, but 

Deonna: Yeah, we used to have one of those. Yeah. They're cool. 

Rhandyl: Yeah. So we use that for her. But yeah, I it's a lot of things and I could have went on and on because it's like life and you know, I've discovered so many things over the years, but what about you, Deonna? Share your things. 

Deonna: A couple of your ideas are similar to mine. I will say for the blow up mattress, we saw Abby who we just spoke to, she drags that out onto the beach for her daughter. And so that's like a. Beach life hack using that same thing. So I like that, but so a couple of things I thought of, I haven't been doing this as long as you and my daughter has some needs that are a little different, but it's a lot of the same.

But the first thing is we've talked to Ryan who invented the Mejo app. Yeah. And when we talked to him, it was new to me. It's on my phone now. And it keeps track of all my doctor's specialties, specialists, which there's so many, all of her meds. I keep that up to date. , I even keep the notes. If I'm about to talk to a doctor or if I have a question, I go type it into there. That way I know it's there. And it's just really nice because the other day, they were asking me what her height and weight was. I know I can go to that and it's accurate because I keep it. So yeah, no app is really great. I use it and it can be sent to anybody like a doctor's office, your parents, ER, whatever, you can hand it just straight to the ER doctor on an admission. And they don't have to ask you questions. 

I saw this from another mom back in the day and we've always done this, but you know the ice cube trays that are for a water bottle that are skinny? That's how we prepare Allie's syringes. Like we have a orange one for morning and a blue one for night, like morning night. Yeah. And we just line those up and we do them in order and you just know, okay, I did give the Like I know it's up here, I used to have them labeled, but it would get wet sometimes and it didn't stick, but we use those. And the syringes, this lay right into those trays. I love that one. That one is so great for us. We have them in our packouts everywhere we take them. 

I also do all of my laundry every single morning. Something I've learned is just, I read this book back in the day called Atomic Habits, and he was basically talking about how you have to build your life with these little tiny habits, and it'll eventually have a huge result. And it sounds so basic and duh, but I wake up every single morning and I, which I should probably start throwing those color saver sheets in in my clothes. Cause I just grab everything everybody wore. We store all of our dirty laundry in one space and I grab all of it every single morning, dump it in the laundry on cold, wash it all together. I've never had a mistake. Mishap ever, even though I'm sure baby boomers are dying hearing this because we all grew up separating laundry and doing all this. I just throw it all in there and hope for the best. And, and yeah, if it's dry clean only, I'm like, I'm not buying that.

That's too bougie for me right 

Rhandyl: now. I have to, if I have to press it. 

Deonna: Yeah, I do a steamer on some things, but that's it. If I have to get the iron out, I'm like, Oh, I don't even own an iron. I basically do for craft purposes. I very rarely, like actually ironing clothes, but yeah, I throw everything in there, which I will preface my hacks by saying I am a. Stay at home mom and I have a part time job, but I am home more than like you are. So some of these things are more realistic for me, but I have all my laundry done every single day and so it just never becomes a big thing. Not every once in a while, like if we go on a trip or I get sick or something, it gets backed up, but I do pretty well at keeping up with it.

I also have a very minimal house. I don't have clutter. I'm, I've really cleaned out my life in the last eight to 10 years. But I do the same thing. I can't go to sleep with a messy house. I almost feel like for even my nurses sake, like I don't want them to work in a messy space. And so I clean up. And my son has to help us. Like I'm like, Hey, get all your junk and put it where it goes before bed every night. So he is in that habit and everything, but yeah we're we're like you too. We're we have to have a clean space. 

And then another thing, so I only have one other child besides Allie and he is about to be a teenager, but I delegate. Jobs for him and I pay him for them too. So he gets an allowance if he does what he was supposed to do. And if he doesn't, he doesn't get paid, but he does the dishes for us at night and I maintain them during the day for him, but he does the nighttime dishes. He's done it for. A couple years now, I think he does a great job at first. He didn't do a great job. And I think he thought he was going to be like, not having to do it. And I was like, okay, we're going to learn how to do this. He's Oh, okay. But he really does a good job. He doesn't even ask if he has to do it. It's just, it is what it is. He gets paid and. The way we do it is our kids get paid based off their age. So however old they are, that's how much they get every week. And so Cole spends his money immediately and Allie has like hundreds of dollars. So that's just the difference between those two, but yeah. 

Another thing we do, and we probably need to do an entire episode on how we pack for trips, but yeah but we use these Toolboxes. I'll just tell you this one part. We use these toolboxes called Milwaukee packouts. I think they sell them at Oh, Home Depot, I think is where they sell Milwaukee products, but it's all different sizes and configurations and they all are one big system and they stack. They have a dolly that comes up out of the back and that's how we keep all of her stuff organized for trips. That stuff does not come out of those ever. Like we have. Extras of everything in there. And so that's how we pack for trips. I think Dane learned that from Stephanie Stanley, who's passed away, but yeah, she had great ideas, but that's where I think he got that idea from. But it's genius. 

And we also have packing lists, that is something my husband does. There's pages and pages, he has some that are one week out from a trip, day before, day of, and he's checking them off, one at a time, and I mean it's intense but we've never left anything behind so, you know, it's working. That's good. Yeah. Can not say the same. Cause you would have to literally come back home or go to a hospital and ask for, yeah.

But we also have this thing that we, I think we may have had it before Allie got hurt, but ours is from Cabela's, but it's this camping mat that people use when they are in a tent and it's just this little self inflatable air mattress. It's only like maybe two inches. And it doesn't require a pump or anything like that, but you can lay it like if you're having to sleep in the hospital room with your kid, which is terribly uncomfortable. It's the worst thing on the planet. If you can even sleep in a hospital room period, you're amazing, but exhausted. We basically dope ourselves up on like ZQuil and then we, or whatever, like every legal type of thing you can take. And then I'm like, Allie, can I have some of your hydroxyzine? But then we . Blow up that mattress and lay it on top of the parent bed and it makes it less sucky. So we use that and those are really great. Great idea. Yeah, they're from outdoor stores, stuff like that. 

We use rubber twist ties, and they're these pretty heavy duty twist ties, but they're coated in this rubber coating, and we have those twisted to her chair in a bunch of different spots, and that's how we hold her pull socks where it's supposed to go, or where we'll use it to keep her ventilator circuit closer to the wheelchair. Just there's so many things that have to hang off of the chair all the time because of all the things. So yeah, those rubber twist ties are great. And carabiners. 

Rhandyl: We use a lot of the Velcro cord. Organizers that like slip together and then Yeah. But yeah, we, I would like to get some of those twist ties because 

Deonna: No, they're great. Yeah. And we, and carabiners are the same thing. . We have some of those hanging off. 

But we did something we have done is post a daily schedule up inside of our house. So we have a laundry room that is right next to Allie's room in it. There's only one cabinet in there that's dedicated to laundry and every other cabinet is for her. , but we have a daily schedule in there. That way nurses can go refer to that and we change it if we change our mind about something. Yeah. But it's just there and we'll be like, That way they can refer back to it for amounts of certain things or when they're supposed to do certain things, if they forget. And it's an accountability thing for them too, cause they it's posted, so they know what they're supposed to do, 

but, we, I have a chalkboard. So before all this happened, I used to be a calligraphy person and so I, this is funny, but I did this whole big chalkboard and it's all of her meds, when they're supposed to be given, like morning, lunch, night, what they're called, what their dosage is, all this stuff. But the other day we got a new nurse and , I wrote this like a year and a half ago, I'd redone it. One of our nurses was like, I thought that Ally had two Ls in it. And I was like, it does. And she's like, on the board, you only wrote it with one L. I missed Allie's name on the chalkboard. No, it looks cute, but it's Miss no one. 

Rhandyl: That's crazy. No one had noticed it. No. For that long. Wow. Yeah, so that was funny. 

Deonna: Really funny. But I like to make everything look cute and it's. It's not always possible, but that's the one thing I was like, You're pretty good at that, though. This has to look cute. 

But, and then we have another board in there that is a dry erase board. And if an idea pops into our head that we need to do, like right now, Allie needs to, I need to be messaging this doctor with this info. I need to , make sure x rays get sent to UMC for an order. I need to, like the list goes on and on. I write them on that dry erase board and me and Dane, you're not allowed to erase it until it is done. And so it gets cluttered sometimes with all this stuff, but I like for it to be clean. So I'm one of those people that's motivated by getting to check off things and erasing. So we have one of those and it's really nice. And then our nurses can write down if something's running low. So it's a good communication between us and them too. Like I saw one of them wrote toothpaste for Allie on there. So I know I need to do this. And I add it to the HEB app or whatever, but yeah. 

One thing I'll say like what you were talking about at the beginning with insurance stuff, there are case managers. They are going to call you and at first you might discount them and be like, what are you going to do for me? Like why, they can help. A lot. But, yeah Rebecca and Stephanie are two insurance and Medicaid people. I know them, I love them, and I pass off things I don't want to deal with on to them, and then they start looking into it and finding out why that happened. I got a weird denial the other day for something after I'm done talking to you, I have to call one of them and be like, hey, figure out why she got denied for this. I don't understand, you know? and they will call you back in a day and tell you, instead of you having to go through all that. So just use case manager, let them, yeah, let them do your dirty work. That is their job and they want to help you. The two I have are really great. They actually want to help me. And so I love them, 

Another thing that I just got is this bag and it's called a Hulken bag. It's H U L K E N. 

Rhandyl: I've seen them, yeah. 

Deonna: And it is this big ol bag on casters and it can hold like almost 80 pounds. And so we're about to take it on our first trip and I'm so excited. I think it's going to save us So many trips , back and forth to the car. That's awesome. 

Rhandyl: You have to let me know how it goes. I've been getting those in my ads like all the time. 

Deonna: I've already used it one time just for a little thing and it's awesome, but.

Rhandyl: I thought about getting one for work. Because I'm always carrying so much stuff in and out. 

Deonna: Oh, yeah, you should. 

but my last one is I have this. Hack. This would work for any person who's in charge of the food for their house, which that's me in our house. But I have in the HEB app and that's like our local grocery store in Texas, or you can do like Walmart, you can probably do the same thing. You'll have to tell me whether this would work, but I have a list in my house on the refrigerator and it's six weeks of meals. that I know how to make and that, are moderately easy and things like that. And I just have a list like each, it'll be like week one and it's six or seven meal ideas. And then I have, this makes me sound psycho. I've been, so if it's week one, then on the HEB app, I have a shopping list called week one. And I go in there and I say add shopping list to the cart and it instantly populates my cart with the week one ingredients. And then I have another list called weekly list and it's all the stuff that like, my kids always are wanting. Who loves Pop Tarts? Just stuff like that. And then I add that one in instead. And then I can, I do what you do, if I realize Allie needs toothpaste or something, I go add that in as I realize it and then I'm basically ready to check out. There's not a lot of me going, and I do, and then I go through my stuff in my house for the most part and I'm like, Oh, I already have this or whatever.

But that has been. To me, the food was such a stressor when I got home after she got hurt, like it was almost didn't remember how to cook, like it just really screwed up my brain so bad. And so this has been, it took me months to get this all done. And it's not something you do in a weekend, but it has been really nice. And if my kids don't like something, I'll remove it and put something else in. Just, unless it's something I really like, then they just deal with it. 

Rhandyl: They can just deal with it, yeah. Yeah, I know. Make it a grilled cheese sandwich and call it good. Just throw it into a grilled cheese. 

Deonna: Yeah. I know, right? 

 I would love if people listen if they have any others that they would like to share go and commenting on our Instagram or Facebook so that other people can see what you do because we all have to learn from each other. I know I've learned from a lot of these other moms and Rhandyl some ideas to make my life easier. It sounds like I need to start throwing a color sheet into my laundry. 

Rhandyl: It sounds like I need to invest in some Milwaukee Packout toolboxes. 

Deonna: This life is crazy. But we hope you guys had fun listening to some of these and learning. And maybe you took one or two or three from this that would make your life easier.

**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.