Ryan Raising Reynolds + My Mejo App

In this episode we talk to Ryan about:

• raising his son Reynolds,
• his experience being a stay at home dad,
• and My Mejo, an app that keeps families of disabled kids organized and sane.

Follow Ryan on Instagram @dadhappend and follow his app @my_mejo

Go download his app here!  You will LOVE it!

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Transcript

Deonna: Hey y'all, it's Deonna from Raising Disabled. And today, before we get started, we have a really great episode with Ryan Sheedy, and he is this amazing dad. And so we're going to get to that just here in a second, but first we want to just get caught up on what's going on in me and Rhandyl's lives. We have been just getting a slow start to summer.

We got home from Houston and she's actually healing really well from her procedure. So we're super happy about that. And I know it's like you prepare for the worst. And then when it works out, you're like, Oh, cool. It's not that bad. But yeah, she. We're having to be extra careful with her right now and, just kind of stuff like that. So that's a little stressful, but it's not that bad. And so she's doing really good and she's not in that much pain or anything anymore. So it hasn't been too bad. We've been able to get her out. Like a little tiny bit, not around a lot of kids or anything cause you just never know what a kid's going to do to her. They like have no boundaries, which I actually love, like the kids who were like that with Allie and we'll come up and interact with her and touch her. I actually love those kids, but right now we don't want anyone touching her. So we're like, Back away please.

Deonna: But so yeah, we've been a little isolated, but we did go out and see the Garfield movie, which was fun because, 90s kids I was trying to explain to them I was like, I didn't grow up in a family where we had cable or anything like that. Like we had three channels growing up. We would watch Garfield on Saturday mornings and I was like, Garfield was huge in the nineties. There was this one moment in the movie where he splats up against the back window and just stays there for a second. And it cracked me up because remember those suction cup Garfields that everyone has?

Yes. But so that one was just like silly fun, it was fun. But, and then we saw the movie IF, which is that imaginary friends movie. That one, I actually liked that one a lot. It was really good. And it had every single famous person you could possibly imagine doing the voices of the characters, but it was really good. I would highly recommend that one. It was a lot of fun. Good to know. I know we had a little, there was like one quote in it from the beginning and I can't remember what it was, but the dad was like goofing off, but clearly going through something bad. And he said something to the fact of something to the effect of you just have to try to have fun no matter what. And I really related to that. Cause that's how we are as parents of disabled kids. Like you're having a hard time a lot, but you just are trying to soak up any moment of fun you can because, it's not an easy life sometimes.

But, so that movie was really good, but yeah. And then we, me and Allie made, I'm cooking a cake every month, which I was behind. So we made cake number five and it was so good. It's my. It's so good. I usually don't eat the cakes I make very much. Like I might eat like one, one slice, but Oh man, I was eating this one.

But yeah, but we, we just have had a chill slow past couple of weeks, but we're going back to Houston to follow up with all of her doctors and get some stuff done regarding this procedure. So we have to go back, but like we always have fun when we go and go do a little something for ourselves. But yeah, medical travel, that's what we do. But you're there right now, right? In Houston. 

Rhandyl: Yeah. We got here last night. And Remi has an appointment today. And hopefully it's just the one, but you never know. Sometimes they throw us a curve ball and send us other things, appointments, but, the only planned appointment is all under one thing though. So you can, it is nice. Yeah. 

And then we're going to Galveston also this week and we got to Airbnb near the beach and we're just gonna have a few days of yeah, it'll be both Barrett and Remi's first time at the beach on the ocean. I didn't realize this until one of Remi's nurses actually pointed it out this week, but this is actually the very first time that we've gone on a quote unquote vacation as just our immediate family.

But we usually when we go on vacations, it's usually to the mountains, and it's usually with my family, and there's usually a big group. Oh, that's true, yeah. We've been to Houston, but we never called it a vacation. We've been talking about when we come to Houston ever since, even when Remi was in the hospital here forever. We were like when we come for followups, we'll just make a trip out of it. It's been seven years and we're finally doing it. And so y'all have fun at the beach. Yeah, we're going to, do a few things in Galveston and then hang out, our house is just right there by the water, so it'll be good.

Deonna: And some of their beaches have wheelchairs that you can go out into the water with I can't remember which beaches it was, but yeah they have those things and they have these like huge yoga mat type things where you can roll a regular chair out closer to the water, I think, but that's awesome.

Rhandyl: It's going to be. Yeah. Yeah, we're just winging it. I know that's probably not the best thing to do, but we're just gonna play everything by ear cause like I said, you never know what kind of curveballs are gonna be thrown. On our way here yesterday, we were stuck in this horrible construction for an hour and a half. And it, it took us almost 12 hours to get here. It was a long day. But yeah, we made it and I don't know, it must've happened for a reason. We, at least we skipped rush hour. Rush hour. Yeah. Yeah. We missed our Houston is no joke. It is no joke, but yeah. So the past few weeks since our last episode, we've been Remi finished up school officially, and she had her last Challenger League t ball game and that was, It was a sad, bittersweet ending to the season. She she loved it so much. And I know. Yeah. So we look forward to doing that again next year, but 

Deonna: I wish they could leave the gate open so we could go just play around or run around. Yeah. They don't. 

Rhandyl: No. But yeah, it's been nice in Lubbock. And so we’ve got to spend most of our weekends outside playing in the water. We have a splash pad and kiddie pools. And then we also have a big pool. And so Remi, She loves playing in the water and She's getting a little more brave this summer. She started crawling all over the splash pad and she's trying to climb up the slide and I'm like, oh my gosh. And so we're having to keep our hands on her all the time because she's going to face plant at any point in like, you know, get water all up her trach and it's just going to be part of it, but we're trying to avoid it. Because I know it's like she knows, but she just wants to play so bad. And but it's fun to watch her. And she finally got the nerve to get in the big pool and get on a big floaty. And we just lay her down on one of those long big floaties and oh, yeah around and she was just having the time of her life. So we've just been doing…

Deonna: A lot of disabled kids love the water. Like everybody does, but I see so many parents recently sharing these cute videos of their kids, just like water. Allie's like drop dead, do not put me in there. Like we tried last year and it was like, never. I, she's are you going to make me do that again? I was like, no, she's okay, good. So I know I'm like, Oh man, but it's a thing to get her in anyways. But yeah, I'm glad she likes the water. 

Rhandyl: Yeah. So that's pretty much what we've been up to the past few weeks. 

Deonna: Yeah. So we're getting started on our summer and if you guys need some ideas for summer, we did a podcast last year that goes through all the things about what you could do and ideas from other disabled families. And so you guys can go back and listen to that if you want some ideas or just encouragement, because I do think summer is hard sometimes for disabled families.

We feel like we need to do this and that. It, and it can be stressful. And then also you can be jealous of what everyone else gets to do. And sometimes it feels like you don't. So there's a lot of feelings associated with summer and you’re home with your kids, like 24/7 so.. 

Rhandyl: yeah, it's, I think it's called the episodes called Inclusive Summertime.

Deonna: Yes, it is. But that's what we've been up to the last two weeks. And so we're going to get right into our episode. We'll see you guys there. 

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Rhandyl: Hey y’all, today we have on a special guest, Ryan Sheedy. He's a stay at home dad and caregiver of his disabled son and boys. Ryan is also the founder of My Mejo web app after years of navigating the world of raising disabled. We're so excited to have you on today, Ryan. And, We've been wanting to talk to you for a while and we thought that With Father's Day coming up that this would be the perfect time to have you join us So we're super excited to have you and so just start out and tell us about your family where you live Anything you'd like to share 

Ryan: Yeah, ladies, thank you so much for having me.

I'm really excited. I've been a listener and now get to be a guest. Again, Ryan Sheedy. I live in Bentonville, Arkansas, which is in the Northwest corner of Arkansas with my wife, Ashley and our three young boys. Our twins, Reynolds and Campbell are six years old and we have a little guy, Mack, who's three.

One of our twins has an ultra rare disease called Costello syndrome. So Reynolds is One of a a thousand kids in the world that have Costello syndrome. So yeah, it's ultra rare. The prevalence is one in 300, 000 live births. And so, he's had a really long journey. From 103 days in the nicu. Oh man. To countless surgeries and endless doctor appointments and medications, and ultimately he got diagnosed through a whole exome genetic testing process with Costello syndrome. And from there, that just started more of a journey of new doctors, new surgeries, and so forth.

But we are very lucky to Have been on this journey with him because it's really opened up our eyes to this whole other world getting connected to other folks. Oh, for sure. I'm excited to tell you a little bit more of our story and our journey and all the amazing things that we've been able to do since. Having boys. 

Deonna: So tell us a little bit more about the diagnosis part. Did your wife know when she, he was in utero? Was he was a twin. So that's obviously always a complicated situation or a lot of the times it is, but did you guys have any clue or was it just like he was born and something wasn't right? Walk us through that a little bit. 

Ryan: Yes I always go back to the beginning of being in the ultrasound room and I'm sitting in the room and they're going over my wife's stomach and they said, there's the first heartbeat and there's the second. And we were like, what?

Deonna: That's always a surprise. 

Ryan: Yeah. Tell me more and the tech, “well, I can’t say anything, the doctor has to tell you that,” but there are too harsh. Yeah. Okay. And so from there, it's just like, all right we're not in control. We're going to have to figure out how to go with the flow and all this.

Her pregnancy didn't have a lot of complications, but we did follow the boys pretty frequently with twins. And sometimes with twins, one twin will grow a little bit larger. I think on on your last episode, you talked to a mom who told you about the same kind of story. 

And so we followed the boys, baby A was always a little bit bigger, which was Reynolds. And at week 34, we went in for a non stress test and they told my wife and I that we weren't having the babies at week 34 today. But we weren't going home until we had the babies. And so she went on bed rest with preeclampsia and so laid up for two weeks. My wife is a warrior, she worked up until the last day. They're wrapped up with their feet, for the preeclampsia thing, working on emails and conference calls and things like that. 

And then we didn't think of anything else, of any type of complications, no one mentioned the NICU during our stay. Scheduled C section at week 36. I often joke it felt like a business meeting because it was like, all right, you get up, you get showered. We go in taxi back, I go in the holding tank with a couple other dads. I'm super excited. It can be the best day of our life. We get there and they pull out baby A, Reynolds and he was 40 percent discordant. So he was 40 percent larger than.. wow. Whoa. Yeah. And so immediately when they took him out, they worked on them, intubated him, and it was just a mad rush of things. I mean, there were so many people in the room because they were twins. 

Yeah. And there's Ashley. “is he okay? I haven't heard him breathe yet. I don't hear a cry.” Oh, man. And I'm from the other side of the room. And next thing I know, they're like, “here comes baby B” and I turn around and there comes Campbell and they whisk him away because he was a small little guy. He was a little over four pounds. Yeah. Reynolds was almost eight pounds and so… that is crazy. Yeah. And they were working on both of them and she's asking me if they're okay. And I don't know what's going on because there's just so many people and so many things. Yeah. 

Deonna: You don't know what to say at that point. 

Ryan: Yeah. And you know she's laying there 'cause she's having major surgery done.Sure. Yeah. . Oh man. I used to be a squeamish guy until like I turned around and there was a c section right there. Oh man. And then the next thing we know, the boys got whisked away so she never got to hold them. She not to ever got to have the picture with them. Yeah. We went in there. Oh, I think about it often. I mean, we went in there thinking this is going to be the most joyous day of our life to yeah, certainty. So they got whisked away. We eventually got to see them, their little finger and the box. I call it the ET box. Yeah. And from there, just more and more complications. Oh man. 

Deonna: With both of them or just with Reynolds?

Ryan: Campbell was more of a feeder grower. He just needed to grow. Yeah. Reynolds had a ton of airway issues. Oh. And he had dysmorphic features, and he had low set ears, and they ran some tests. And then ultimately, on day five, I woke up in the morning and I said, Hey, we're going to send Reynolds to another children's hospital about three hours away. Oh my gosh. We can't do the tests here that he needs. Yeah. So on day five, we split up as a family and I went to Little Rock, Arkansas to a children's hospital with Reynolds in an ambulance and left Ashley and Campbell behind.

Our journey went to “Okay, we’re going to have to tag team this. We're going to have to work together.” This isn't a typical, normal situation. Went there a couple of days later, got sent back to the children's hospital. Because they weren't going to do anything and then a few weeks later. We got sent back to the Children's Hospital. 

Deonna: Oh my gosh. So were you in the PICU at this point? Because you, or were you still in the NICU? 

Ryan: NICU. Still in the NICU.

Deonna: Oh they kept keeping you in the NICU. Okay. 

Ryan: Interesting, we went from private room, because it was a smaller hospital here, to a NICU that had bays of kids per bay. And so that was a whole other experience being in the NICU. 

Rhandyl: Been there, done that. It's a huge difference. 

Ryan: No, it is. And communicating back the information and then coming home because I wanted to be with Campbell and Ashley wanted to be with Reynolds and, Ashley in the c section, which is a major surgery. Yes. I found out a year later, she had to have a blood transfusion because. Oh shoot. Yeah. So it was crazy. And so ultimately…

Deonna: She's like, I'm fine. Let's go get in the car. 

Ryan: And it was during flu season. So we couldn't have visitors. So it was just me by this crib all that time. Man. Shout out Ronald McDonald House, never knew what it was until we had to use it. And Reynolds had a cricoid split, so he had an airway reconstruction. I know you guys can relate. Getting a trach was discussed at one point, but the doctors felt comfortable that they could reconstruct his airway to do that. The whole time they thought there was always something that was causing all this, but they were trying to fix all the things. And so, scared to death of a G tube. He got in the G tube. Yeah. We got sent home. 

Rhandyl: Oh yeah, we were there too. We were at that oh my gosh, a G tube.

Deonna: It feels like such a big deal at the time. I mean, it does. I'll never make fun of anybody for feeling like that's a big deal. Cause it felt like a big deal. Yeah, it is. It is. 

Ryan: Now I can change it with my eyes closed. Oh, yeah, same. 

Deonna: I love a G tube. I mean, it's awesome, but 

Ryan: I wish my other two had them sometimes when they were sick to give them medication. 

Deonna: Or dehydrated. 

Rhandyl: Like when they won't eat or if their stomach's hurting, you just want to vent them. And sometimes I wish I had a G tube. Let's be honest. Just hook me up to water. You would. That's what I say when I'm like man... 

Deonna: We would all be hydrated.

Ryan: I can still hear the beeps in my head. Oh yeah. So we got sent home and the goal was for Ashley and I to go back to work. I hung on to my career as long as possible, because I was taking Reynolds to the doctor every week, we were going to specialists. 

Deonna: Were you having to go to Little Rock every time? And how far of a drive was that, you said? 

Ryan: About three hours or so. 

Deonna: Oh, so that's, I mean, that's a pretty good little drive every few days. 

Rhandyl: So how old was Reynolds when they finally did all the full genetic?

Ryan: Yeah, so he got diagnosed at 18 months old.

Deonna: Oh, so he was pretty little still. 

Ryan: Yeah, and so, when we got the diagnosis, you'll hear this a lot from other families. We got the diagnosis over our phone. We were asked if we had any questions. And yeah, and then we were asked to bring those questions when we met the geneticists, like a week or 2 later. So thankfully we were able to find the Costello Family Network shout out to those folks who are on a phone call with a mom within a day or two. Oh, great. That's good. 

Because with these ultra rare diseases, they don't come with a handbook. There's not a lot of research. So you rely so much on other families and what they've gone through and coming, to this diagnosis of Costello syndrome, it affects so many different parts of the body, so he's short stature, he's got developmental delay he had tethered cord, he had a Chiari, it just goes on and on. He's predisposed to cancer, so we get him screened for cancer every three months. Oh my gosh. And so, we had all these doctors before a diagnosis, and then we got a diagnosis, we got a new batch of doctors, because now we have a little bit of a roadmap of, okay, these are the things we need to start to go get checked out. And so when 

Deonna: you brought up a good point about immediately finding another parent who had a child already, because I think sometimes people think that we're talking about these things on Instagram or here or wherever, to get attention or something, but that's not what we're doing. It's because people need us. People need to find other people who have the same disease as your son so that they can feel okay when that happens to them. And so I think that's a good point to bring up is you're, you are seeking someone immediately. I mean, like that day, and if there's no one out there sharing, they'll be alone. So I think it's. It's important to understand that for people who aren't in our world. 

Ryan: Yeah. And it's great that the conversations are being had. It's great that you guys have podcasts and platforms like yourselves and other organizations, because it can feel lonely. Yeah. The majority of your friends and family aren't going through a situation. And so you're trying to figure out these things and everybody's on this journey in their own way. And every, I often say that we're all a pioneer at some point, right? So it took 18 months to get Reynolds diagnosed. We met with other Costello families that took 18, 20, 25 years to get diagnosed.

Rhandyl: Because they were probably some of the very first ones to diagnose because genetics, like I've learned just from, even though we haven't found an answer for why Remi is Remi, but we've been through so many genetic testing and geneticists and things like that. And something that they all tell you is, that there's just a fraction of genetics that has been studied and it is so it's just endless. And so, you think about, like you said, the families that didn't learn until their children were adults. That, they were probably some of the, like you said, a pioneer of the genetic diagnosis. Whoever founded that, that gene or that syndrome. It's just wild how much study that it takes to go into genetics and how long and there's so many things, there’s so many diagnoses. Just like for in our situation like we're on the Undiagnosed Disease Network, and so we keep up with all of the genetics things so that, hopefully in the future, we may be one of those that someday we do find out why Remi is why she is, or we might not, we've come to peace with it either way. But the fact that it would help someone like Reynolds when they're a baby that we are putting in the information to get that. The more information that these geneticists have, then the more it's going to help the future children and families. So it's just wild. 

Ryan: I mean, I won't claim that I know all this because a lot of this genetic stuff is over my head. Yeah, same. Oh man. But you know, for so many years they were diagnosing people phenotypically, so by physical trait. And so there are kids who thought they had Noonan syndrome, but they actually had Costello syndrome because they're very similar. 

Rhandyl: I was going to say, I've heard of Noonan syndrome, but I hadn't heard until I was reading about your son, the Costello syndrome, and the physical features when you read them off are very similar. 

Ryan: Yeah. And so again, when I was complaining, it took us 18 months to get, diagnosis and to see a geneticist and then to hear other moms say it took us 20 years. You're like, but the coolest part though, was Reynolds primary nurse. in the NICU took care of a little girl a year after Reynolds left and graduated the NICU. And she pointed out to a doctor that this little girl has Costello syndrome. I took care of a kid just like this. 

Rhandyl: What? Oh wow. And so. That's wild. She diagnosed him without a blood test. She's let me just tell you. 

Ryan: Hold my beer. I'm the professional like type of thing. Yeah. That's awesome. 

Deonna: I mean, we feel that way about nurses anyways. Yes. And so they're always our favorites 

Ryan: that like Reynolds helped another kid in a way. And the other thing I'll say too, is, working with these geneticists and, you're going through this diagnostic odyssey with Remi, it's grueling. It's tough. I mean, it's just so much. But one of the things that our geneticists said to us when Reynolds got his diagnosis was yes, Reynolds has Costello syndrome. But Reynolds also has Reynolds syndrome. And I was like, well, that's a coincidence because his name is Reynolds. My wife was like, no, dummy Reynolds has his own version of Costello syndrome.

And I think it's really important for parents to understand that yes, they might have a diagnosis, they might not have a diagnosis. But they are their own person. 

Rhandyl: They are. No, that's very true, there's no cookie cutter for any person, but especially for anything for our disabled children. I mean, it doesn't matter of you have the diagnosis, but they're all their own person. I love that. I love that they told you that. 

Ryan: He was old school. He was a really good doctor. 

Deonna: That's pretty cool. I just think about how frustrating that must be trying to figure out a rare disease diagnosis, you're trying, like trying to figure that out because even me, I have MS, which I feel is one of the most common diseases you can have out there. , it's everywhere but it took me over a year to get diagnosed because it Masquerades as other things and it's very difficult, and that's like the most common thing in the world I feel like so I mean to have something where only a few people out of a thousand out of the whole world. I'm like, that's just crazy 

Ryan: Doctors might have heard of it in a textbook, but they haven't treated. And so that plays into, the journey of caring for a child with a rare disease or disability is. I become the expert who is educating them on all of this. Oh, for sure. Yes. And so, I'm not a doctor. I don't claim to be a doctor, but I have to like, understand some of this stuff and how the pieces, go together. And, I was a business person, like I was in marketing and fundraising and business development. I knew nothing about healthcare, medicine, any of that. And now all of a sudden I have to be the expert. I have to be the one. 

Rhandyl: Now you're the expert of Reynolds. 

Ryan: Yes. I have to be the one that's learning how to change a G tube and do all those things. And it's a heavy load to carry. It is. Because not only are you a parent, you're now a caregiver. And those are two different things. And they are. As you guys know, being a caregiver sometimes takes time away from being a parent.

Rhandyl: It does, yes. Yeah. That's a really good the child that you're caregiving for, and also to your other typical children. Because I catch myself just getting so involved in did we do this at the right time? Did we do this, that? And then I'm like, just stop and read her a book. There's this constant battle. It's just a whole nother realm. And we had an episode about the guilt. And it's just a battle that I feel like we have to fight ourselves on is the caregiver parent thing. 

Ryan: It's a moving part. So it's the medical part of caregiving. It's the administration part of caregiving. It's the questions to ask caregiving. It's then communicating to others who are caring for your child. It's the IEPs, it's the medical equipment, it's the, all those things. And you're like, but then, your kiddo does something. And you're like, holy cow, like, all the things that I went through helped get them to that point. 

Deonna: Yeah. It's worth it. 

Ryan: I don't think, I don't think caregivers celebrate themselves enough. They don't. 

Rhandyl: Oh, no, we don't. We don't think about doing that.

Ryan: They don't give each other enough credit. They don't realize that, they're keeping their kids alive. They're keeping them moving forward. 

Rhandyl: Literally. Yes. 

Ryan: Yes. And that's important. And, it, for me. I had this big goal and aspiration of being a CEO of a company because I was in the business world. And then my, my wife got tapped to take a promotion at her job. And my job was, going downhill. And I said how hard can it be to be a stay at home dad? I got there. It's very hard and it's rewarding in different ways. It's not pretty every single day. And to be the dad in that role, I mean, in the beginning I got asked all the time, is mom coming to the appointment? Yeah. 

Rhandyl: Oh my goodness. I have not thought about that. 

Deonna: Oh, I'm sure you get treated bad all the time by people just because, yeah, you're the dad. You're not the mom.

Ryan:  I don't know if it's bad. It's just not the norm. And so, they're asking these questions and, I have to navigate it. But. It's a different perspective and it's a different situation for Ashley and I, and it's something that we chose to do that was best for our family. Yeah, right. I had to swallow my pride a little bit because, I didn't, I, how hard, like I said, how hard can it be to be a stay at home dad and all the things and it's it's been a definitely career change. But it's been great, not gonna lie, there are a lot of hard days and a lot, I'm frustrated a lot. Like it, it's just a lot of things but you know, it's a very important job.

Deonna: It always cracks me up because when we're at the hospital or somewhere, my, when my husband knows all the exact same information that I know. It just blows everyone's mind for some reason. And I'm like, dads can know all these same things.

Ryan: I think for the dads. And I'm not going to speak for all dads, but for me, it's we're natural fixers. And if we can't fix it, sometimes we just back away. Yeah. A lot of these situations you can't fix. It's more of adapting to the situation. It's learning how to go with the flow. And sometimes it's hard for dads. 

Deonna: Oh yeah. It's a helpless feeling, from talking to my husband, I can tell it's a very helpless feeling, not being able to fix all of these problems that our daughter has. And then subsequently, like we have, or my son has trauma based off what's happened with my daughter or whatever. And I mean, sometimes there's nothing you can do, and I think for men, that's really hard. For guys, it's just different. 100%.

Rhandyl: So, Ryan because it's so rare, Costello Syndrome, what kind of has the medical team given you guys, if any?

Ryan: It's ever evolving, right? So in the beginning it was taking care of a lot of things. So his airway reconstruction he had a tethered cord release surgery. He gets quarterly cancer screened till he's about 10. So, that's 40 cancer screens that we had to get. I mean, that's a goodness.

Deonna: What do they do for those? Is it a blood test? 

Ryan: It's an ultrasound and a chest X ray. Oh, okay. And the great thing is because we screen so often that if they catch it most of the time, they can get rid of the cancer. 

Deonna: Like it's manageable at that point. Yeah. 

Ryan: Reynolds didn't walk until he was three years old. Okay. So, we had a big uphill mountain to climb with that. Right. He's had skull reconstruction surgery to remove his Chiari. He's had jaw reconstruction. He has, issues with his hips and his achilles heel and things like that. Yeah. He's starting to talk more. He uses an AAC device, but you know, it's amazing to see his progress. And I think, too, sometimes when kids are nonverbal, we assume that they're not comprehending things. Yeah. He hears everything. 

Rhandyl: Yes. That's my daughter too. She's nonverbal and uses a device. And it's just funny cause they know, they comprehend what's happening.

Ryan: And so there's just a lot, I mean, he had heart issues. He's had all, a lot of the different things, but you know, he's going to go to kindergarten next year which is amazing. He, He's going to, Yeah, he's gone to a developmental inclusion school that has had therapy along with school up until now, which has been amazing.

Rhandyl: Oh, that sounds really amazing. 

Ryan: Yeah. The school that he goes to is it's the best place ever. Again, had heard of it prior to having the boys, didn't really fully understand. To now, he's been there three years. I just joined the board of directors because I feel like all these other kids that go through this, they need that shot. They need the opportunities. They need a chance to get prepared for kindergarten because if they won't, then they get thrown into kindergarten. They don't have a jumpstart. And then A lot of different things. And so, we're excited. Both boys will be in the same school again. It will be in first grade. Reynolds will be in kindergarten. And, I think you guys have talked a lot about the sibling aspect of all these things. Yeah, Campbell has heard and seen and been a part of a lot. And for a six year old, that's, can be traumatizing, can be, a really tough situation, but he's excited because, he's gonna protect Reynolds and he's gonna be there.

Rhandyl: Oh, I love it. 

Deonna: Oh, he probably will. 

Ryan: And all of Campbell's buddies, they know Reynolds and they crack jokes and together. I mean, Reynolds is a jokester. I mean, the kid is just, but the prognosis, he'll probably live with us for the rest of his life. Yeah. Yeah. He, I don't know what his life expectancy is, cause I don't want to know. I want to live for today. I want to celebrate the things that, that he does that, we took for granted or that 

Rhandyl: living in the present. 

Ryan: And I'm sure with you, with, with your girls, again, no one in our family had a complexity, as a disabled child, a lot of our friends. And so Reynolds is that, that kid, he sheds the light to them. Yes. And Reynolds is the kid. And so, last year for rare disease day Campbell and Macks school colored zebras. That's cool. The symbol for rare disease is a zebra. Yeah, right. So to go back to your question, what's the prognosis? I mean, there, there's a lot of moving parts, but things change. And there'll probably never be a cure for Costello. It's more of a managed disease or syndrome. And so as long as we keep up with all those things, I mean, at one point Reynolds had 20 specialists. 

Deonna: Oh my gosh. 

Ryan: From endocrine, to gastro, to oncology, to urology, I mean, to all the things, so it's a lot to manage. I'm not going to lie. Yeah. It's a full time job. You can call it an everyday job. 

Rhandyl: That's more than a full time job. Yeah. That is.

Ryan: And coordinating all of those. Yeah. So. He's had multiple surgeries with multiple chiefs of surgery, different kind of divisions working on him because I don't want him to be having so many different surgeries. And so, thankfully I can lean on my skillset from the business world to organize some of this stuff, push, ask the questions, advocate, and ultimately, Now that we've gone through it, help others because again, probably for you all before your girls, you weren't in this world. You didn't know how this world. For sure. And now we're changing G tubes and trachs and all of the things.

Deonna: And then teaching medical professionals how to do those things as well, which is always really funny to me. Yeah.

Ryan: I crack up when people ask, I'm like, how do you don't know that? Like you've never changed a G tube before or you never do these? But let me put it yeah, again, the prognosis, we’re just taking it one day at a time. We're taking surgery. We're taking medications. We're taking, I mean, now his new thing is he's eating by mouth. That's right. I'll never forget, probably you guys the same. The first question out of my mouth to the general surgeon who put his G tube in was, “How long?” She said, I don't know, ask him because it'll be him.. it's his decision in a way to do that. And so, family members would be like, how much longer? I'm like, I have no idea. And now he's eating by mouth. And so that's a whole other thing to do and see. And so to see him eat with his brothers is okay. We put in a lot of that work and he's put in a lot of work to do that. And so I think it's very important to take one thing at a time.

Rhandyl: For sure. It's hard when they… That's exactly how we are. 

Deonna: Yeah. My daughter had to get a G tube and couldn't eat for a while. And I remember just, she was just like, when am I going to be able to eat again? And that was a really hard question, because I actually wasn't sure at the time. Yeah. If she would ever be able to eat again, like it was like, I don't know, but they said, yeah, she can, when she starts getting ready to, try, but it was, yeah, she was pretty nervous about it, but she wanted to eat that mac and cheese. So she figured it out. 

Ryan: It's fun to see the foods like we. Because Reynolds is predisposed to cancer my wife was on a mission to build the best diet possible for him. Right. And so she became like a food scientist and she designed a blended whole food, vegan diet. For him that we make, I still complain every time cause it is a very large labor of love. Yeah. That's helped him, I think, get to where he is. And so, but now, he went from like eating the best diet ever to now likes mac and cheese and yeah, he's eating all the stuff that our other ..

Rhandyl: junk food.

Deonna: Yeah discovered chick fil a 

Ryan: Yeah so we you know crossed that bridge. I never thought it would come but you know now here we are. So I think that's the outlook and all this is, if I stop and think about it it could be very depressing. Oh, for sure. I think about, I mean, every time we go get a cancer screen, they could come back and say, he has cancer or he has other things, and I think it's just and Ashley has been, an amazing partner, just to be like “we'll deal with that if it comes. Yeah. Yeah. Let's not worry about what if, or what could be." 

Rhandyl: Oh, that'll tear you up. Yeah. It’ll drown you, if you live in that world. 

Deonna: I get, I get in it sometimes, but it's, and that's 

Ryan: The world of being connected to other families because you then go through what they're going through. So there's the benefit of being connected to families, but then there's also you see and you hear all the other things and you put yourself in their shoes, of oh, well that Costello a little kid has this, and this. Is that going to happen to, to, to Reynolds? Yeah. 

Deonna: The future's just too much. I mean, to me, it's just, I can't think too far in advance. Like even it's funny, like yesterday we were having a great day all day. Like we had so much fun. And then at the end of the day, she had an emergency and dipped down to her oxygen went down to 50. We were having a bag her. She was blue. And that's something that we go through. I mean, this is not. I mean, it's happening less and less frequently, but it was just like, oh my gosh, like you just don't know when it can all be over or if it could go on for 20 more years. So the point of worrying is like that would have run our whole day.

If we would have known that was going to happen at night. , we had a great day and I even if you asked me how yesterday was, I'd be like, it was great. We had that. Thing at the end of the day, that wasn't great, but , worrying just messes everything up, like all your good moments. So, yeah, I agree with that. 

Ryan: I can't even imagine. I talk a lot about like perspective. Yeah. Because, again, for most people Reynolds is like the most complicated, complex kid they've ever met. Yeah. I'll share a picture with you guys at some point, and you can see it on my Instagram. I got his EMR printout when he was three and it was 7, 000 pages tall. What? Whoa. Yeah. Because he's that complex. Yeah. 

But I know who he is, but because of him I get to meet other people, like I've met you guys. To me, having kids with trachs and all this, I mean, thankfully Reynolds doesn't have seizures. Like I can, I couldn't imagine going through that. Yeah, I know. So, I had to go, okay, yeah, we got dealt a really tough hand. Others also have a tough hand and tougher. And so. Yeah. We're just going to take it one day at a time. 

Deonna: Yeah, I have this sign in my house that says something to the effect of we may have been dealt a tough hand, but it's how you play it. And it's true because we've all been dealt a bad hand in a way, but you can still win with a bad hand. It's just, I mean, it's harder obviously, but like me and Rhandyl talked about this a lot. I feel like our lives are so much . More joyful than they were before. Because before we were just like, I don't know, stressing over dumb things. And now, , it's just different. We feel like we ended up talking about this idea every time, but it's just, we do. 

Ryan: It's the Some people think it's hokey. Some people, I mean, the Welcome to Holland. 

Rhandyl: Yeah. Yes. I love that. Yeah. 

Ryan: Somebody gave it to me and I gave it to a lot of folks for me. It was, we got to go to Holland and Italy because we have a twin who is typical. We got to do those things and we have another son, but we also got to go to Holland. And so, I'm grateful for that. I would have never hoped it would happen again, but it happened. And so, we're gonna, like you said, play the hand that you were dealt and figure out a way to win. 

Deonna: Yeah. You got two trips for the price of one. You got the best of both worlds, yeah. 

Ryan: I'm not going to Italy or Holland anytime soon, though. 

Deonna: But yeah, not in real life. Well, Holland's more expensive than Italy for us, which doesn't make sense, but that is what it is.

So how do you guys, you or your wife, And your extended family handle the stress of all of this?

Ryan: I'm not going to say we don't get stressed out. I mean, I'm balding and all the things. I just, I don't know let ourselves get too wrapped up into it. We've just adapted to the situation. And I think our family kind of followed suit. They, sometimes if somebody else is freaking out, you then freak out. Yeah. We've tried to just go with the flow and figure all that out. And I think our family has followed suit.

Deonna: That's good. 

Ryan: We live a thousand plus miles away from family. And so, they're not here all the time, but when they come here, they're You know, Nana and Gigi are giving G tube food. Yeah. They're doing all the things, even the grandpas are making the smoothies and changing the diapers, all the things. That's good. They're here to support. So I think as a family, we've just embraced it, the hand that we were brought and embraced it. Yeah. 

Now, duck on water. Right. So sometimes, just crazy under the water. But you know, we've been blessed to have a great family and support system who support Reynolds, and they champion Reynolds. They champion our other two kids, and they champion Ashley and I, because it's not easy. No. And to feel sense of, we got you, we're here for you tell us how you want us to help. Yeah. 

I think a lot of times, families just interject and you're like, that's actually making it worse. I don't, you think you're helping, you're actually making it worse. Worse. Yeah. Our family has just been Hey, let us know where we need to jump in. And then, going through COVID, I mean, that was a whole other situation of, I mean, Oh yeah. We were scared to death that if Reynolds got COVID, Because 

Deonna: How old was he during COVID? 

Ryan: Two.

Deonna: They were two ish. Okay. Yeah. Oh, yeah. That's when my daughter's injury happened during COVID. And it just added this whole other level that like, yeah, it's crazy. And there were some blessings in it being during that time. But, oh shoot, that was like, not a cool time for any medical families, I feel but yeah, that was rough. 

Ryan: It was about the time where we made the decision to put him into the school. Oh, okay. We had to 

Rhandyl: oh, you had to decide. 

Ryan: Decide pros and cons. Okay, he's going to get amazing care, he's going to get therapy, he's going to get all these things. Yeah. We got to trust that they're following all the protocols and all of the things. Yeah. And it worked out, thankfully. Yeah, thankfully. 

Rhandyl: Like you said earlier, it's not easy. So, what are some of the hardest parts about caring for your son?

Ryan:  Just the amount of things you're juggling. And you're not just juggling, you're not just juggling tennis balls, you're juggling a bowling ball, a tennis ball, a knife, you're blindfolded, you're walking a tightrope, like all the things. And so just managing all that and it can be stressful that you're gonna drop something, you're gonna forget something. And then it becomes frustrating that the system and when I say the system, it's multiple systems aren't helping anybody. It's so dang complicated. Oh, I know. 

I get frustrated most of the time and thankfully I can lean in on my previous career to know the questions to ask, know how to connect to people, know how to do these things. And I'm lucky enough to, be able to sit on hold for an hour with a medical supply company. I can fight back. Those are the biggest challenges is just managing all of it. And then the frustration of who's really helping and who's on first base, where can I go? And we've been.. 

Rhandyl: Who’s really in charge here. Can I just skip a few steps and go to them?

Deonna: representative? 

Ryan: Exactly. I'm in charge. But you know, grateful and, blessed to have an amazing pediatrician who's jumped in amazing team and all of that, but. 

Deonna: That's a big deal. It is huge, yeah. To have a good one when you have such a different kid. Like me and Rhandyl both have the same one, and yeah it's huge. 

Ryan: And, he's jumped in, our pediatrician he's learned more about rare disease. And all of that, but the toughest part I think is just managing all of it because there's so many moving pieces and it's constantly moving something new and and the time that it takes.

So I added up one time, my son takes a growth hormone shot and I added up just the time that it took out of both of our lives to give him that one shot. Yeah. And it was a few days. in a year, just that one shot. 

Deonna: Oh, that makes me sad for him. 

Ryan: Well, but I think about, with what y'all did with trachs and g tubes and all of the things. And so we're already spending so much time doing that. I get frustrated when a medical supply company or insurance company or whatever is stealing more time from me by going through the formality of all this stuff. 

Rhandyl: Shorting you supplies or not sending you the right thing. Because it's literally a spreadsheet for them. But to us, it's our life. It's our child's life. The frustration when it comes to having so many other people in charge of so many crucial things that we have to make sure that our children are well and safe. And we are I mean, like you said we're in charge, but that's the most frustrating part is that we're not always because, you know if one person check something wrong it completely flips the whole It's a whole piece of equipment or whatever. I mean..

Deonna: My kid recently got denied for a piece of equipment because they accidentally put the wrong diagnosis on the front cover page. And I mean, we had waited for almost five, six months and I noticed it and it's, and I was just like, I'm going to cry, like for real going to cry over this because we had waited and waited to get a denial like that. I was just like, are you kidding me? I mean, so it's, yeah, it's like dumb stuff like that. 

Ryan: It's not knowing, I mean, now I know cause I've gone through it, but hey, when the doctor's filling this out, they have to say medical necessity. Yeah. Oh yeah. Right. And so now. Like I overhear moms in the parking lot talking about filling out the forms to get the AAC device. And I'm like, Hey, don't mean to eavesdrop, but you need to do this. And so now we're like, Hey, I hear you're the expert in this. I'm like, I'm not, I just got through it. 

Deonna: You're like, let me just have the form. I'll do it for you. 

Ryan: Those are the things, right? I think that's the, 

Rhandyl: let me just write that letter, please.

Ryan: I think that's the amazing part of doing all this is It's, I've leaned on so many people to get me to this point. Now it's my turn to go help others. 

Rhandyl: That's how we feel. That's how we feel. That's why we're, that's why we're doing this and obviously we're never going to know it all or learn it all. We're all in the same boat, just swimming along, hoping we don't run out of gas. Like it's just..

Ryan: And it's unfortunate, that’s how it happens. Like I found out that Reynolds got free diapers through Medicaid when he turned three. I found that out when he was five. So I lost two. Oh my goodness. I lost two years.

Deonna: You're like, I want thousands of dollars of back pay. Yes. Reimbursement now.

Ryan: When you look at kiddos here. And all the things around and swirling and coming at you and, getting phone calls all hours of the day it's just a lot. 

Deonna: And I think that's why we all are our friends on Instagram. We may not know each other all in real life, but we all have these shared experiences. There's so many times someone has said Hey, how do you get to do this? Or how do you do that? And I love to tell people, like recently we had somebody say, Oh, they won't allow me in the school with my kid. This was like a different district, but in Texas. And I'm like, Oh no, they will.

Like they will, they have to. And so it's these little things that you. Ask other questions and it all comes out, but that's, I don't think some of the providers know that we all know each other. We all talk and you can't let Rhandyl do something without me finding out and then you're going to have to let me do it too, they don't realize that we all have huge mouths. Like we're going to tell, 

Rhandyl: we're not going to let someone bully another child when we know that's not, it's 

Deonna: yeah we're good about that. So what are some positive, unexpected, or surprising things that have come out of raising Reynolds?

Ryan: The community. The people that we've met through this. And when I say this, it's just, it's our life. Like the people. Yeah. The people that we met at school or the people that we've met, in therapy clinics or online that I probably would have never seen or known. And so I love when people celebrate Reynolds, but now I love celebrating other kids and and celebrating their parents. And I think that's the best part of all this, as well as he works so hard for things, and he's been able to accomplish things because he's worked hard, so. Yeah. He didn't walk until he was three, but man, when he walked, he was the most proud kid aww. He was one of the most proud parents. 

Deonna: I'm like, I wanna see a video of this.

Rhandyl:  I know, oh that makes my PT heart so happy. 

Ryan: And I think, for his school he was the spotlight kid for their school gala and we got to do a video for it. That's cool. I think the thing through all that, too, is it gives parents a sense of my kid can do that. My kid might not be able to do all the things, because we're all in different abilities. Oh, yeah. But you gotta celebrate the little things that sometimes we might have taken for granted. 

Rhandyl: No, we would have. We did. 

Deonna: And I feel like it trickles out into your other uh, siblings too. Like when we were at the track meet, we're acting like nuts out there. going crazy because it was a big deal, like it, it's not just about the disabled kid only. I feel like as far as like my experience has gone, like every single accomplishment, we're just like, yeah, and everyone else is probably what is their deal, but it's just, it's a big deal, like everything's a big deal to us now because it can be over in a second. Yeah. So we get it in a way. 

Ryan: Reynolds recently started Miracle League Baseball. 

Deonna: Oh, is that like Challenger League where everyone's disabled on the team? Yeah. Yeah. Those are cool. 

Rhandyl: Allie and Remi are on the same, on the same team. 

Deonna: What's it called? Miracle? 

Ryan: Miracle League. Okay. So it's t-ball.

Deonna: Yeah. 

Ryan: And, it's from five years old to 20?, and so, Reynolds is on the Kansas City Royals team and, they bring in, they call them buddies to help them run the bases and push. 

Rhandyl: Sounds exactly like what we have. Yeah. That's so cool. Was he loving it? 

Ryan: He ate it up. 

Deonna: Is Campbell his buddy? 

Ryan: Campbell was his buddy a couple of times. They're now getting to be like, they wrestle a lot. Competitors. Oh, yeah. You guys, you can't be like tackling each other out in the baseball field. 

Deonna: You can't get in a fight out there, but yeah. Although that would be entertaining. I would watch that, I guess. That's cute. 

Ryan: Yeah. My wife might disagree, but I love those moments. I love those moments because for such a long time, I didn't think they were ever going to be able to do that. But to go back to the Miracle League thing and inclusion and all the things, I mean, I got to see a young lady hit a ball because they had a special machine that she was able to just press a button.

Deonna: Yes, I've seen that thing. It's cool. 

Ryan: They had a ball that had noise to it for someone who was blind. 

Deonna: Oh, wow. 

Ryan: And so just to see all the different ways that they were playing baseball, but they were all in one team, coolest thing ever. I mean, I know. And for Cam to see that, Mack to see that, and other people life finds a way. Yeah. Thankfully we are living, in 2024. That didn't exist many years ago. 

Deonna: No, I don't think it did. 

Ryan: Kids weren't given opportunities to play baseball. No. 

Deonna: Well, and it's funny, like for our situation, we play baseball at this field that's in this complex with all the other kids who are playing like the traditional competitive baseball. And it's so funny because sometimes when I'm sitting there, I can hear the quote unquote, regular Families, regular situation. And they're just like screaming at their kids. And I'm just like, you don't get it. Like you do not get life. This is not like we're over there and we've been through some of the worst possible things you can imagine. And we're just smiling and happy. And then you guys are over there with what we sometimes think we wish we had, but no I just I can't go back to that. Oh my gosh. 

Rhandyl: Yeah. Like fist fights over fifth grade baseball. Or younger. So no. 

Ryan: Y'all need to fight someone else to use that energy somewhere else.

Rhandyl: Yeah, seriously. So Ryan, what or who has helped you the most through the last six years? 

Ryan: I mean, I would say my wife. Yeah. We've taken our roles and worked together and just trust that we're doing the best that we can do, right? So, I handle all the medical stuff because Ashley's working and all of that. And, it's not the plan that we drew up, when we got married. No. 

Deonna: Y'all been married for how long, you said? 

Ryan: Almost eight years. 

Deonna: Eight years. Okay. 

Ryan: I think that's right. Yeah. 

Deonna: Get that right. Your wife will let you know later if it wasn't. 

Ryan: Like you look back at your wedding vows and you look forward to raising kids and doing all these things you don't you didn't think about we're going to be in the NICU for 100 plus days. We're going to have to rare disease and do all these things. And so, I'm grateful for her. I'm grateful for family. I'm grateful for friends. Never been shy to ask for help.

Rhandyl: That's good. That is good. Because that is something that's so hard sometimes. 

Deonna: Because we didn't experience that. Yeah. I was stubborn and real stubborn about my independence for a while, and then finally gave in to the help. 

Rhandyl: Yeah. Yeah. That was the hardest part for me was just having to accept that, and now I think I ask for too much help sometimes, but. 

Deonna: You're like, I'm not doing that, yeah? 

Ryan: You can't ask for too much. Now, if you're like, Hey, I'm going to Hawaii for two weeks..

Rhandyl: Maybe?

Deonna: Even though we want to really bad. We had our 16 year wedding anniversary yesterday. And it was so funny cause I know we're like in the medical parent world, like that's a feat because of just what we go through. But I saw this photo of us from back in the day. I mean, we looked I mean, it was a little hilarious, but when I was looking at that, I was like, when you say for better, for worse, you don't actually think like that some really bad stuff's going to, I never thought bad stuff was going to actually happen to me. And then, to my kid for sure. And it did, and you can still keep going. You can be there for each other, but yeah, not what you put in your vows to, look forward to or anything. That's for sure. 

Rhandyl: Yeah. Yeah. So what has helped Reynolds the most?

Ryan: I would say his family. His siblings he is loved by so many people. I think some of it is cause I put him out there to do things and experience life because I didn't want Costello to be a barrier roadblock for him. 

Rhandyl: Yeah. Yeah, and define him. Yeah.

Ryan: And I hope he doesn't hate me for that. “No dad, I really wish you wouldn't have done this or put me in that” but like I know his limitations, but I also know that he can accomplish, and so I think he has an amazing support system. I'm so excited to see him in school. 

Deonna: That's going to be fun. 

Ryan: He's at his current school now, they call him the Mayor. Yeah, I mean, he waltzes in, running it and every single person knows his name. 

Deonna: That's cool. And they're they're world changers. I mean, they really, they impact the world around them in a way that is pretty profound, really.

Ryan: Well, because I think they see all the stuff that he's gone through and what he's overcome. Yeah. And the nurse team at the school sees the 7,000 pages of medical complexity and they're like, yeah. And then they meet him and he's the jokester and he's the life of the party. He's all the things. And so I think it's that balance of here's this kid who's gone through so much. But he brings so much joy. So like, how does that happen? 'Cause that, I know that math equation doesn't add up. 

Deonna: No, it doesn't. 

Ryan: And so our kids bring like the light to people who are going through tough times or it so true. They have a different life and they're just like, golly, if this kid is smiling and grinning from ear to ear through all the things that he's gone through what am I complaining about life? 

Deonna: Yeah. Oh, yeah. I've heard that about my kid too. It's, true for sure. What would you tell a parent who just got a very rare diagnosis, like what you guys went through, in the first few days?

Ryan: Breathe. For real. Ash and I came up with this thing years ago called the three A's and it was ask questions. There are no dumb questions. No. Ask it again. So if somebody explains something and you don't get it, ask them to tell you a different way. I used to have people draw things for me and don't be afraid to ask the question.

Rhandyl: Yeah, I'm a very visual person like that myself. 

Deonna: I've had that done for me too. 

Ryan: I still have the pictures of the ENT drawing the airway stuff for me, but don't be afraid to ask the question. Okay. And if someone or a doctor questions you asking them questions, go find another doctor. Yeah. Don't be, don't be afraid to find a good partner and a teammate for all of this.

The second thing I would say is advocate as hard as you can. No one else is going to do it for you. No. And then the last thing I would say is adapt to the situation because it's not going to change. No. As much as you hope that it might go away. It's not. And it might take you time to, to grieve and cope and fully be okay with it. Yeah. But from there, just then adapt to the situation and do it the best that you can.

Rhandyl: That's great advice. 

Deonna: That's good advice. Three A's. Okay. Yeah. Three A's. Okay. So one of the reasons we wanted to talk to you today was obviously to get your story about your family, but we also want to learn. And this is a passion project that you've started and me and Rhandyl both downloaded this it's a app called My Mejo and I downloaded it today and I already am obsessed.

 I filled in all the information and I can just think of already so many different reasons I need to keep this updated and how I'm going to use it because when you're a parent of a disabled kid like us, you've got 300 different papers everywhere. Me and Rhandyl both have so many notes in our phone.

Deonna: They're in different places. They're all called different things. I still don't know anyone's phone numbers. I'm always having to Google, like even my daughter's. I have to Google her number every time. Like I, it'd kill me to save her phone number in my phone, but so, I mean, we have so much stuff just spread out everywhere and you've started this thing, so just tell us about it so that people understand how they can get it as well.

Ryan: Yeah. Mejo stands for Me Journey and it's a free web app. That securely organizes and shares your loved one's most critical medical and care information in a very simple and useful way. It was a project that I started because. I myself got very frustrated with having to retell the same story over and over again. Yeah. I needed a way to organize all the different things that I was being asked to, keep track of. And there wasn't a platform or system that did all that. That did it in a way that was useful for me. And, And so, I got connected through a friend of a friend with a guy who also was impacted by a rare disease who spent his entire career in the electronic medical record industry. And we launched Mejo in June of 2022. We have a few thousand families across the U. S. using the platform. 

And really, the premise of the platform is to give caregivers of medically complex, disabled, rare disease kiddos a way to organize this information so that they can spend more time being a parent and having fun with their kids. Versus going through all the caregiving administration things. And so we, we built very simple, but useful features and functionality.

So, I love that you guys have embraced it and downloaded it and tested it and already thinking about, the 101 ways to use it. Because that's what we think about every single day is how do we create something that can take all this information, produce beautiful documents we spent a lot of time designing it.

So it didn't feel like a medical report. It has beautiful iconography sections with extra note areas, because we all know, our kiddos are on tons of medications. But they usually take them a certain way. And so the typical medical chart, the typical medical chart will say. Synthroid or growth hormone or seizure medications, and then the dosage amount and their frequency, but it doesn't say at what time, how do they get it? They get a sticker in their sticker book afterwards, or he gets to get five minutes of his iPad, or. We crush it up and put it in the applesauce. Like those are all really critical pieces of information. Yeah. And so it's easily shareable. We added functionality where you can call and email directly from the app. So put your pediatrician's phone number in there and now you can just go to Mejo and call your pediatrician from there, you can email from the app. 

Deonna: That's really cool. 

Ryan: And then we know as caregivers ourselves, there are a ton of people within that care community that need to know this information. So the school nurse um, the new provider, grandma, or the babysitter. And so we have a sharing function where you can text or email this information to those individuals. They have nothing to download on their end. They just use the child's date of birth as the secondary security. And you can put a timer on that. So if you only want to send information to the school nurse, you can make it active for 12 hours. I give grandma, yeah. If I have grandma get access to it, you can give her always access. 

And so we're really excited about. What we've put together, the families that we're helping and how they're utilizing it, because it has very practical use cases. So, we've heard from tons of families that have been in an emergency situation, and they're able to hand off their phone when the EMT's asking all that. medication information. We have people who are sending it to new providers so they can get the 30, 000 foot view before an appointment. Or we have moms filling it out and sending it to camps so that when they’re.. 

Deonna:  I was thinking about that today. 

Ryan: ..they have all that. And it didn't come to me until recently, that there's an emotional piece to all of this. So yes, a child gets to go to camp without a nurse because mom felt comfortable that they had all the information there in an emergency. But that also allowed mom to have five days of respite. Right. Five days for herself. The other part is mom doesn't have to relive all those situations when they're being asked a date of a procedure or information about a surgery. And so it's all right there. So you spend the time to fill it out, and then at a moment's notice, you have something that you can refer back to, you can share it and so it's been an amazing journey to, really help all these families out.

Rhandyl: I love it. My experience, I downloaded a few days ago and I did it all on my phone. As my two year old was running around asking me a million questions, I'm doing this, and I'm just briefly, entering in the highlights. Planning on going back in and, adding more information and, get through it and then save it. And then I go to look at all the options and I'm like, Oh, this is awesome. I can create a PDF file, save it to my phone. So I, I directly sent it to my email just to see what it would look like on whenever I sent that to someone else. And then it was just a quick, easy, you open the link and it just asks for your child's date of birth. Put it in, boom, opens up in this and it's so, so organized and great design, such great design. And it was just very streamlined and it was more personable, like you said, versus a lot of the systems that we're used to in like the medical charting.

And just your example of our thinking back to our last ER visit, it was a very traumatic experience at the time. I mean, it was really a scary situation. And, even though we were at the hospital that she goes to and they have all this information. in her chart you have the RTs and you have the residents and you have everyone asking you all these questions. And I'm thinking now I could literally just open Mejo and hand it to them and say, this is going to tell you everything I need to focus on my child right now. Just go through here. It's very organized. Just, everything you need to know is right here. And if you don't want to look through it, I'll just text it to you or I'll email it to you. I am just so, In awe and so thankful that you guys came up with this because we don't just go to one specific hospital. We have multiple providers in multiple parts of the state and country and they don't transfer information hospital, hospital. It's impossible. And so something , like what you've created is. It's already helping so many families and I am so excited to use it myself because for my daughter and not only my disabled child, but my typical son, I mean, like you said, camps or whatever, there's all sorts of things that it would be useful for him in the future as well. 

Deonna: Well, even yourself, as an adult, I was thinking I'm gonna put myself in there because I am on a few different medications and my husband, if something was to happen to me and we got to the hospital, I don't know if my husband would know exact medication names and how much of these I'm taking because I manage all that myself. It's my own, thing, and I'm just like, Oh my gosh, I don't know if he would know what meds I'm on and that I cannot give blood to anybody or that I can't, like just different things like that. I, there are certain things about some of my drugs that cause dangers if you cross with something else. So, I mean, I was thinking about that even putting myself in there for sure. 

Ryan: Thank you very much for saying all that, Rhandyl we have, like I said, a few thousand people using it. We haven't communicated it out to the world yet. And so, being able to share on your podcast is really awesome of you guys to let us do that. Yeah. There's so many things. I mean, I think about medications all the time. We hold all the cards, all the medications that you're taking. The hospital doesn't. They might have your medication list, but they don't know how often 

Deonna: They should, but they don't. 

Ryan: And so, I say all the time you're managing all this, they're just reacting to it. And so taking that on yourself to do is very important. And just the med list itself. Is worth having a Mejo account, but it really is, you can have multiple kids. I mean, my other son has a peanut allergy, so he has an EpiPen and we have the information in there about that. And so, we're helping a lot of people.

We're, going to be launching Mejo plus in a couple of months, which would be a premium version. That'll have some other features and functionality. But we're just, again, excited to get to connect to other families and hear how they're using it. The part about the ER, I found myself with Reynolds in a different state, in an ICU. So from urgent care to an ambulance to an ICU. Oh my gosh. It's an hour span. I was asked 10 plus times. What meds is the same? What is the question? Yes. 

Rhandyl: It's the worst ever. I just start yelling at people. It's in the chart. I get so mad. 

Deonna: Well, and sometimes your kid's not even stable and they're like, what's your insurance? What's your kid? I'm like, I don't care. We'll figure this out later. 

Ryan: Mejo allows you to focus on what matters, right? Yeah, exactly, kid. And I think, we hear this a lot too. There's so much to remember. It's stressful. What if you forgot something? 

Rhandyl: And we don't need to forget to mention this is a free web app My Mejo Mm-Hmm.. 

Ryan: Yep. And you can find it at mymejo.com we've got all the different kinds of use cases on there. We just launched a blog. We'll add your podcast to the list of resources on there. So individuals can find other episodes. From your podcast and, our goal is really to save caregivers time because it's the most valuable resource. And, we've got a lot of big goals and aspirations on where this is going to go. But it's solely focused on how do we help the caregivers of, these medically complex disabled rare disease kids. 

Deonna: Well, and when I set it up today, I was like, Oh, is this going to be hard to set up? And it was so easy. Anybody can do this. And my daughter has very complex needs, has tons of. I mean, I mean, you name it, she has it. She filled in almost every category and I think it only took me an hour to fill in all of her stuff and she's pretty complicated. So , to me, taking an hour to do this versus all the stress of having all that information in a million different places, because.

Even before we were going to Houston, we were taking pictures of all these different boards in our house and screenshotting all these things. And , like we said, it was in 10 different places and. We felt organized, but now after finding this, I'm like, okay, no, like we were doing things weird, crazy.

Rhandyl: Well, and I think about whenever my husband and I leave and go on a weekend getaway and my parents or family members come to take care of the kids. And we always leave legal medical release forms. But we always assume, they're going to get to the hospital and they have all the records there because it's our local hospital But then now I think about the scenario and I'm like filling all this information out and how easy it is to just share it's, a safe program, just being able to share that with my family, that's, that is going to be responsible ultimately until we can get there on a flight or a long drive going a hundred mile an hour, it's going to be, so helpful for them to have that. So that's just another scenario that I was thinking about over the last couple of days after downloading it there's so many useful ways, not only just for, just regular doctor's appointments to have it, but, man, just so many situations. 

Ryan: Yeah. I mean, I love that you said that because I love that you and your husband, are getting to go do that because it's very important to take time away, but, I can just, envision like you're sitting on the beach and your mom is texting you stuff and you can just say, it's in Mejo.

With spouses who might not be the primary caregiver and they have to jump. The doctor is so they're not texting you saying what pharmacy do we get to and where do we get this? When was that? Yep, like all right there. So it really empowers So many different people. At the end of the day it ultimately also tells the story of who you're caring for. And so we have a section in there called getting to know me. And yes we allow the users to, to capture all this medical plus care information, but we also allow them to tell the story of their child or their loved one. So not just. Hey, Reynolds has Costello Syndrome, but hey, Reynolds is a twin. He loves Blippi. He does horseback riding. Yeah, oh man, Blippi. He does all these things, and so he is, more than just a kid with Costello Syndrome. For providers or whoever is taking care of him, that's very important for me, for them to know that.

Deonna: Yeah. When we were filling it out earlier, my daughter was watching me fill it out. And I put, all the boring stuff, like I'm like, Allie Wade, C1 level spinal cord injury, vent/trach dependent, I mean, all this stuff. Stuff that in my mind was important. And she's like, you need to put in there that I like pink and that I like the descendants movies and I like roadblocks.

And so, I mean, we were in, so it took a turn in a different direction, but you were saying it's cool when doctors. could see this, if you emailed it to them, and then they mention that your kid likes the Descendants movies or Roblox, and it makes your kid realize they're not just a chart. They're a real person, and , I don't think our disabled kids always feel that way, because they just are going from appointment to appointment.

Rhandyl: Especially not at the doctor, yeah. 

Ryan: I put in this Mejo that I'd love to give a high five. So everybody gives him a high five. And so there's just, there's this whole piece to the medical and care and human of all these things. And that's really what our platform is helping caregivers do is bring all those pieces together.

Deonna: Well, and when you say caregivers, obviously we are caring for young kids or our kids, but even like my mom is in a season of life where she's caring for my Nana. And I'm thinking even this for people that are listening, if you have an aging parent, you could. Make an account for them too and have, because I mean, their needs are almost just as complicated, sometimes even more complicated than a kid. And so you could even use it for something like this, because I know managing all this between my mom and her sisters and everything, it'd be cool if it was all in one place, the possibilities are endless for this. 

Ryan: Yes. Thank you for recognizing that. I mean, anyone can use it now. Yes, we are. We are, talking to mostly pediatric folks, but my parents have them. I mean, yeah, we will change up the look and feel of it for adults. Right. Coming soon. But the functionality is there. Yeah. To what you said earlier, my mom has mobile sclerosis as well. Yeah. I don't know any of her doctors. I don't know any of the medications. 

Deonna: Oh yeah, and she's probably on a few, if she's like me. 

Ryan: She's on a few, and she's tried all of them, and things like that, and so, Oh yeah. And Mejo Plus, she'll be able to track those things, she'll be able to store documents 

Deonna: That's nice.

Ryan: And so, yeah, Mejo's for everyone. 

Deonna: Well, thank you so much for coming and sharing your family. I know that's always a very personal thing to share and hard sometimes, but for sharing your family with us and everything that you guys have been through. And then also for sharing about My mijo, because I think this could be something you. Very beneficial to everyone that is listening today. Everyone, no matter what your situation is. And so, can you tell us your Instagram and your, social media handles before we go? 

Ryan: Yeah. Again, ladies, thank you so much for having me. And it's been a blast chatting with you and, walking you through a little bit of our journey. My Instagram personal is @dadhappend. I forgot the E so it's D A D H A P P E N D. 

Deonna: Hey, there you go. 

Ryan: And then our Mejo Instagram is @my_mejo. And I encourage those thinking about Mejo to check us out. Those that are already signed up, follow us. We share a lot of stories of other families who are using the platform, but not just Mejo. I want to communicate out to folks, what their situation is, what they're going through, celebrate their kids, celebrate them. Yeah. And so, Instagram and Facebook have been a really great opportunity for us to tell those stories. 

Deonna: And there's a direct link on your Instagram to get to this cause that's what I did today. So it's an easy way to find the app and everything online. So, well, thank you so much for coming on. We really had a lot of fun talking to you and we're just so thankful you took the time to talk to us. 

Rhandyl: And have a Happy Father's Day.

Ryan: thank you so much for having me.

**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.