Reimagining Pediatric Healthcare: How Imagine Pediatrics is Revolutionizing In-Home Medical Care for Medically Complex Kids and Lightening the Load for Families - Taylor Beery and Jody Copp

[00:00:03] I'm Effie Parks. Welcome to Once Upon A Gene, the podcast. This is a place I created for us to connect and share the stories of our not-so-typical lives. Raising kids who are born with rare genetic syndromes and other types of disabilities can feel pretty isolating. What I know for sure is that when we can hear the triumphs and challenges from others who get it, we can find a lot more laughter, a lot more hope, and feel a lot less alone.

[00:00:31] I believe there are some magical healing powers that can happen for all of us through sharing our stories, and I'll take all the help I can get. Once Upon A Gene is proud to be part of Bloodstream Media. Living in a family affected by rare and chronic illness can be isolating, and sometimes the best medicine is connecting to the voices of people who share your experience.

[00:00:56] This is why Bloodstream Media produces podcasts, blogs, and other forms of content for patients, families, and clinicians impacted by rare and chronic diseases. Visit BloodstreamMedia.com to learn more. Hello, hello, and welcome to Once Upon A Gene. I'm your host Effie Parks. I'm so happy that you're here. Thank you for tuning in to the show. I have a great episode for you today. If you're interested in rare and rare disease day, rare disease day just happened. It feels like it just happened, but I know it's a couple weeks ago.

[00:01:25] I came home and a virus tried to take out my entire family. So it was a little ugly. I'm coming out of it, and I'm still sort of melting into the magic of rare disease day. I hope you got to spend it with the ones that you love, and we'll talk about it soon. There are some amazing photos on my website if you want to go check them out, effieparks.com. You can right-click them and download them and save them and share them if you're in them. But please go check it out.

[00:01:52] We had so much fun and it was so extra special I can't even. So today's episode, I've been waiting on pins and needles to let you know about this company that I'm talking to today. It's called Imagine Pediatrics. Yes, parents like us, obviously, we know the fights, all the fights so well with endless hospital stays, with insurance battles over the most basic supplies and a system that makes

[00:02:19] us feel like case managers instead of parents. And what if there was a better way? I think we've all said that to ourselves a bazillion times. Well, I think this actually exists now. It is happening and it's actually a company who's working with us and helping to keep our kids safe at home instead of constantly cycling through hospitals. So Imagine Pediatrics is flipping the script on pediatric care.

[00:02:45] They're bringing 24-7 proactive in-home medical care support to families like ours. Today, I'm talking with a co-founder and a dad who uses their service for his two medically fragile sons who both have COPD and a variant on the PNPT1 gene. They're both just rad dads. Taylor, the co-founder, knows this world just as much as we do because he lived it. His son, Walker, who bravely fought pediatric brain cancer, inspired him to build something

[00:03:15] better for kids like ours. And our dadvigate, Jodi, like so many of us, was drowning in the weight of caregiving until Imagine Pediatrics gave him the support that he didn't know was possible and neither did any of us. So I'm really excited for you to hear this episode. We're talking about the current healthcare system and how it's failing kids like ours, how Imagine Pediatrics is swooping in. It's a game-changing model and it's available in a few states right now and they are expanding.

[00:03:43] There's a lot of important work and there's actually some stuff that you can do to help make sure that we can get this in all of the states for our kids. Listen closely because this is just, it's really mind-blowing. It's really mind-blowing what they're doing and I'm so proud of them and I'm so happy that they're out here and I'm going to do everything I can to help get the message of what they're doing out too. So I'm on team Imagine Pediatrics for sure. So whether you're a rare disease parent, a caregiver, or someone who just believes in

[00:04:12] better, you don't want to miss this episode. So please enjoy my conversation with Tyler Berry and Jodi Kopp. Hello, Taylor and Jodi. Welcome to the podcast. Hey, Effie. Thanks so much for having us. Yes, I'm really excited to hear from two dadvocates. We're speaking about Imagine Pediatrics today and I have the co-founder and a parent who uses this service. So we're going to get into it. I'm going to open up with some introductions. I'm going to actually let you do that. So let's start with you, Taylor.

[00:04:41] Yeah, thank you so much, Effie, for having us. My name is Taylor Berry. I'm a co-founder at Imagine Pediatrics. My introduction was mostly a career in starting companies and operating businesses. And I was doing so in my hometown of New Orleans with my wife, Angel, and our three children

[00:05:03] in 2019 when our oldest son, Walker Beery, was diagnosed with a pediatric brain cancer called medulloblastoma. And Walker was amazing. I won't fill a whole podcast talking about him, but he was wild and empathetic and brilliant and brought joy into all the different waiting rooms and areas where he went during his treatment. Put smiles on faces.

[00:05:33] He wore costumes and danced. And he just had an incredible spirit about him. Unfortunately, Walker passed away September 4th, 2021. And three weeks later, I joined a small group of folks under what, you know, in my mind was really a focus. One of my co-founders asked me the question, what if Walker could have had better care in the home and spent less time in the hospital?

[00:06:00] And at that point, what was to become Imagine Pediatrics was mostly born out of a pilot program out of Missouri where they had provided virtual care to children with special health care needs and seen just truly amazing results. Kids were happier and healthier and they had more safe days at home. They went to the hospital when they needed to, but when they didn't, they could stay in their communities

[00:06:27] in a way that was safe with, you know, this care team that knew them, that could help them see around the corner for things that might go wrong and be there for them when things did go wrong. And unfortunately, that program was funded on an innovation grant and that was heading into COVID and it got shut down. So they from St. Louis joined with me and a small team. And at that point, there was a handful of us and just the knowledge that it could work.

[00:06:55] Today, Imagine serves more than 35,000 children with special health care needs across three geographies. We provide integrated medical, behavioral, and social support for families 24-7. Care teams that are led by pediatricians, but are supported by all the things. It's APPs and nurses and pharmacists and dieticians and nutritionists and palliative care.

[00:07:24] And a lot of other areas where we can be there for these families and fill in the gaps that they experience on a daily basis that leave them feeling really isolated and alone. And I wish we had had it for Walker, but we didn't. So we're trying to make sure every other kid that needs it can get it. We do not, importantly, we do not replace anybody's current care team, nobody's PCPs or specialists. We really work ahead to make sure we develop really strong relationships with them.

[00:07:54] Because I remember having to answer the same set of questions over and over again, or the left hand not knowing what the right hand was doing so often. So that is a core part of our mission is to make sure that for the family, this does feel like everyone is in sync, that there is no duplication or confusion, because the families who are fighting these fights with children with special health care needs don't need anything additional on their plates.

[00:08:21] So we're trying to add and improve the child's experience and the caregiver's experience and all the different things that they have to manage. I mean, it's just so mind-blowing what you have all accomplished already and what Imagine has become because of Walker. He didn't just inspire you. He also took action, like you mentioned. I know he launched something called Kids Join the Fight. Do you have a short story about that? Oh, sure. Yeah.

[00:08:47] So we were in treatment at Texas Children's and a little girl brought Walker a teddy bear and she left the room and he looked at his mom and I and said, I have a nose burn. And for Walker, that was code for a happy cry. He was so touched by this little girl that he came back home to New Orleans and said, I got to do something more. And so he set up a lemonade stand with his little sister

[00:09:13] and they raised about $3,500 in one lemonade stand. And I can't remember raising 35 when I was a kid. There just was a huge community growing around him and already that was so responsive. And right after that, he came back to us and said, you know, we got to keep going. And, you know, his mom and I tried to encourage him. Let's wait till you're feeling better. You're in a lot of treatment. But he was impatient. I think he might get that from me.

[00:09:43] But I said, no, we got to do it now. And so a big, amazing group of volunteers surrounded him and launched Kids Join the Fight. So Kids Join the Fight is kind of like that first lemonade stand, very driven by the creative superpowers of kids who want to learn about philanthropy and empathy and do so to help other kids. So mostly kid-led fundraising, but also the adults who support them.

[00:10:07] And we fund both CURE, part of our mission, which is to play a role in curing pediatric brain cancer and then moving on to other pediatric cancers. And then also CARE, so providing support for families who are fighting any form of special health care need, you know, to give a little bit of joy and respite. We just broke ground last week on our first big project, which is a 15,000 square foot enrichment center, kind of like a children's museum attached to what at the time was the

[00:10:36] Children's Hospital of New Orleans. But then a few days later was renamed the Manning Family Children's Hospital in New Orleans. And we're looking for projects like that around the country. We've been able to fund a lot of great research as well, about a million and a half dollars of research impact so far and looking to grow. Oh my gosh, my cheeks are sore from smiling. That's such an awesome story. And congratulations. Oh, thank you. Really change maker. It's awesome. And I'd like to get some of those kids maybe on the podcast later for an episode and talk about their fundraisings.

[00:11:06] Oh, absolutely. Jodi, welcome to the show. I'd love to hear from you. Well, thanks, Effie. I appreciate you having me on. My name is Jodi Kopp, and I'm the proud father of two amazing medically complex children, along with my awesome wife, Melissa, and their two service dogs, Jai and Joel. We live in Waco, Texas. I'm happy to be a parent voice for Imagine Pediatrics today, as I'm also a member of their Parent and Family Advisory Committee, or PFAC as they call it. But much more important, I'm really just here just as a dad.

[00:11:36] This isn't just like having Imagine Pediatrics, like ask one of their clients to get on the podcast. Imagine Pediatrics actually walks their talk and they have a parent advisory board. Jodi, what does the parent advisory board entail? Well, it's really cool that Imagine Pediatrics has done this, but they just have families and caregivers, and it's just a group that they've kind of put together.

[00:12:02] And we'll have meetings, and Imagine just comes to us with some of their thoughts and ideas and even some of their issues. And I think it's really nice because it lets us as the parents and the caregivers give them some honest feedback. For instance, one of the first things that we did when we had our first meeting was their app.

[00:12:27] And Imagine Pediatrics does most of their communication through their app. And it's really great because that way it's available 24-7. Most of us as parents or caregivers, we always have our phone with us. So it's super quick to just send them a text if you have a question or whatever that entails. But, of course, as the early adopters, as the first ones, there were some limitations to it.

[00:12:53] And they had come to us, and we kind of did a big brainstorming session. And, of course, not everything that we had asked for on our end has been able to be put in just for various reasons. But it was great that they came to us and asked us those questions and really took our feedback to heart. Another thing is, you know, we've been able to help them with some of the marketing. And whenever someone calls the parent or the caregiver for the first time, we were able

[00:13:22] to kind of talk to them about some of the changes that they might can make to where whenever someone does get that call, they don't think that it's a spam. I know there's parents like peaked right now going, what even is this? Like, what exactly is this? Because this sounds amazing. It sounds too good to be true. It sounds like maybe it's still in an imagination, but it's real. Taylor, can you kind of just give us the broad overview and explain what it actually looks

[00:13:48] like for a family to qualify and to start using Imagine Pediatrics? Absolutely. So we are so fortunate that some of the not only brightest minds in complex pediatrics, but, you know, on the medical side, the behavioral side, and folks who really understand social support for these families have been so attracted to what we do. And building this team has probably been the greatest experience of my career, probably will always be the greatest experience of it.

[00:14:18] So they are standing by, but it all starts with, you know, these complex care experts taking a look at children for whom we can have a really positive impact. And so we analyzed 10,000 ICD-10 codes. We really tried to think through where are there opportunities with this model to really help these families. We then take that information to health plans and say, you know, look, we will take over supporting these families, working with their existing ecosystems.

[00:14:47] Again, their existing PCPs and specialists, but we're figuring out where we can fill gaps. We will take that responsibility over. Those patients are then, in the official terms, they're attributed to us, which means we get a list of names and information. And the way the caregiver experiences it is a phone call, or they'll call us, or they'll find out about us a different way. But a very typical way is the phone rings and somebody says, hello, this is Taylor.

[00:15:14] I'm calling you from Imagine Pediatrics as a part of your health plan with fill-in-the-blank health plan. You now have access to 24-7 pediatrician-led medical, behavioral, and social support for your child and your family. The way to get going is just to go ahead. It will help you download an app today where you can message with your care teams or have virtual visits or request other things 24-7. We'll download that today, and we'll get you set up with a welcome appointment with your

[00:15:44] care team. And really, that's how it starts. And we sort of joke for a lot of folks, the first call is a little bit of a, is this real? Is this a scam of some sort? And I think I probably would have thought that in our experience as well. But we've seen over time, as the word gets out, that it is real. And as Jody said, we really try to walk the walk in everything that we do and keep children first in all of our work.

[00:16:11] And so over time, the response has got a little bit less concerned about us being, you know, not what we say. And people give us a try. They test us and learn that we are there for them. It is 24-7. It is pediatrician. You can get a doctor on the phone when you need one. You can get social support. You can get behavioral support whenever you need it. And that's really the model. What did that first call actually feel like when Imagine called you?

[00:16:38] Well, as I know Taylor had mentioned, and I say it too, but it really was, it seemed like it was spam. It just seemed like it was too good to be true. Of course, when I did get that call, no one ever calls me unless I'm in the middle of taking care of my boys. So it went to voicemail. And I listened to the voicemail. And I just thought, hmm, I'm not really sure. But I went to their website. And their website was legit. So it sounded good.

[00:17:07] And also, I happened to be on another committee for insurance, one of the insurance companies. And lo and behold, about a week later, we had a meeting. And Imagine Pediatrics came up that they were just talking about, hey, we partnered with this organization. So I asked them and I said, well, what is it about Imagine Pediatrics? I mean, what is this? Can you really tell me anything? And she said, well, honestly, we just started this partnership. We really don't know too much about it.

[00:17:35] So why don't you be a guinea pig? So I said, okay, well, why not? And I gave them a call back. But it was great because when I did call back, as Taylor had mentioned, they have all the information for our children. And so you're not having to answer about 15 million questions because they already have that information there. So you can really kind of start talking about what your issues are, talk about your children, and then find out how they can help you.

[00:18:05] And I think that was one of the biggest things is just whenever I was talking to them, I just, I got a really good feeling about them. And I thought, you know what? Sure, I'm going to go ahead and test this out. And I did. And I started small because I thought, you know what? I'm going to put them through their paces. And I started out with just small things, just, you know, a prescription here and there. But then I started to use them for a little bit bigger things.

[00:18:30] And eventually we just, about two years ago, transitioned to power wheelchairs for our boys. And I let them take the lead on that. And they were amazing. They helped us. They worked with our doctors. We were able to get the prescriptions that we needed. And eventually, because of them kind of helping and pushing things along, we were able to get the wheelchairs for the boys. Oh, I love that so much. And it's so meant to be in your experience and how that unfolded.

[00:18:58] And I love that both of you mentioned the fact that we have to answer the same questions over and over and over, right? And it almost gets to where we're sort of numb to it or we leave stuff out now because it's just so monotonous and just gets so exhausting. And I love that Imagine calls you and has a basic understanding of what your boys are dealing with and what the needs are of your family, which takes a huge burden off you already.

[00:19:24] So Taylor, how does one qualify to become a patient or a client? I'm not sure what you call them. Imagine Pediatrics. Yeah. So we work with health plans. A lot of the cases, these are managed care organizations in the states. Some of the states manage it directly from the state through fee-for-service waiver programs. Some are combinations of all of the above. And we talk to any and everybody. We are completely Medicaid-based today.

[00:19:53] We are also talking to some plans about commercial members that we could expand our services to as well. But we can provide this literally any and everywhere. And we're growing quickly. I don't think we could ever grow quickly enough. You know, there's some family somewhere that we could be there for that we have not yet gotten to. But we have a team that's working relentlessly to connect with the health plans. We talk to the states. We talk to state Medicaid.

[00:20:20] And we do a lot in the advocacy space as well, just trying to make sure that we're, you know, every state is different and every family is different. These children are all different. A variety of different conditions. And so we have to be really nimble in how we do this. But we qualify kids. It's, you know, our population is incredibly diverse in terms of the conditions that they face. It's about a third of our kids have some form of tech dependence.

[00:20:48] If it's a trach, a vent, a G-tube, about three quarters of our kids have some form of a behavioral health diagnosis. About a quarter have behavioral only or mostly diagnosis. But, you know, the medical conditions span cerebral palsy, cystic fibrosis, all forms of genetic conditions, cardiac disorders, respiratory disorders. I mean, it's the list is so long. I couldn't give you the whole thing.

[00:21:15] But it's a very broad swath of children with both medical and behavioral conditions. And so the only thing that's keeping us from any of them is just building relationships with the health plans and getting the word out and expanding everywhere that we possibly can to serve these families. Okay. And I know it's only available currently in three states, right? We are in Texas, Florida, and the D.C. area.

[00:21:42] But we're hopeful to be announcing some new spots very, very soon. And we cover, you know, statewide. So if a kid is a block from a complex care clinic where they're getting really great service, you know, we're working with that complex care clinic. There might still be a couple of gaps where they really want our help. Family really wants our help. And we fill those. But then it also spans into deeply rural areas where kids are multiple hours from health

[00:22:08] homes, which even if they could get there, aren't adequately set up to support children with these types of needs. And so we can cover whole states into deeply rural areas. And that's probably one of the things we're most proud of is the ability to increase that access and equity for these populations that really feel incredibly isolated. Jodi, I wonder, how has your day-to-day as a caregiver, as a dad, and managing the care for

[00:22:35] your two boys changed since you started working with Imagine Pediatrics? And I don't mean just like the wonderful sort of resources and opportunities that they're giving you through your Medicaid, but also like maybe that real human touch aspect for you as a dad. Well, as far as the day-to-day, I don't know that it's changed a whole lot with Imagine Pediatrics other than having the peace of mind that someone is there.

[00:23:05] Anytime that I have a worry or I have an issue or, you know, you start thinking, well, gosh, I mean, is this something that we need to go to our PCP for? Is this something that we need to go to the ER? Or you can just go through the app or you can call them and you're immediately going to be in contact with someone on their care team. They actually have their own care team, each child. And so you can speak to the doctor. You can speak to the nurse.

[00:23:31] You can speak to whoever you need to and just get some advice. You know, is this something that I should go in? Is this something that we can take care of? Because, I mean, we all know trying to get into your PCP for something that's usually relatively minor, you're never usually going to get in on the same day. It's pretty much always going to be, well, you know, it's the next day or something else. But with Imagine, you can just get it taken care of. For instance, we had one where one of our boys had a rash.

[00:24:03] And normally, you know, you'd have to go into the PCP and you'd let them look at it. But I was able to take a picture and send that to Imagine Pediatrics through the app. And they were able to take a look at the picture, get a pretty good idea on what it was, and then send us a prescription. We had all that on the same day. So that there was huge. I think that just helps me, helps my wife. And, you know, as caregivers and parents, anything that we can take off our plate to relieve a

[00:24:32] little bit of stress is great. And I know that everyone wants to talk about, you know, the bottom line and the dollars and everything. But I think really what Imagine Pediatrics does for the parent or the caregiver is the time aspect more so than financial. Because saving that time for the family, not having to go to the doctor or not having to try to make an appointment to go to the doctor is invaluable.

[00:25:01] And that's the way that I look at it. Yeah, I love that so much. Taylor, you know, I know that you're also kind of fighting against a somewhat broken system, getting Imagine Pediatrics sort of on the map. And I wonder, what are sort of the financial models that hospitals and medical providers and payers really need to understand about how this is so complementary to what we're doing for our kids and how it can save money or accelerate things or give kids?

[00:25:31] I know you talk a lot about more safe days at home. So I guess my question, what is sort of the financial model that makes this make so much sense? Sure. So most of healthcare operates under the fee-for-service system. So a provider group or whoever it is in the ecosystem of care provides services and charges for those services. And that is the vast majority of healthcare.

[00:25:59] There is a second category, which is called value-based care, where the provider is only compensated if the family is healthier, happier, has better outcomes. And as a result of all of those things, they're going to go to the hospital less. They're going to go when they need to, but they're not going to go when it's not needed. And as a result, the cost of the care that we provide, plus the cost of this reduced amount

[00:26:28] of using the hospital when they don't need to ends up being less than folks going to the hospital for everything. And that's really sort of the value-based model. If families are healthier, they are happier, they have more safe days at home, ultimately, it ends up lowering the total cost of care. And that's really how the whole model works in this value-based system versus a fee-for-service system, which is not really based on outcomes, just based on the things that you're doing. Yeah.

[00:26:58] I mean, keeping kids out of the hospital saves everyone money. So what can families, parents, advocates do to get more widespread adoption of the approach that Imagine Pediatrics is doing? I would love to throw out, if it's okay, Effie, we do have an email address that's set up. It's advocacy at imaginepediatrics.org. And our hope for that is that caregivers across the country in places where we operate, but maybe

[00:27:26] even more importantly, in places where we don't operate yet. We'd love to hear from, and we would love to understand the unique challenges that folks are facing. We are trying to get into every state that we possibly can, and understanding the fight that these folks are facing on the front lines is so incredibly important for our work. So we would love to hear from caregivers. I think, you know, please check out, you know, we're imaginepediatrics.org.

[00:27:54] We could connect some members, you know, that were already receiving our care with some folks who we haven't been able to get to yet to start to build some of those communities and hopefully get the word out about what we do and, you know, accelerate our ability to get to more and more families. Jody is an incredible example, but, you know, he and I are both one example of caregivers and, you know, getting everyone's perspective on the challenges that they're facing and the

[00:28:22] ways that we can support that is beyond critical for us to be able to do what we're doing. Yeah. And I know I mentioned this to you last time we spoke, but maybe even for this episode, possibly, or at some point after, I would recommend even like making a little bit of a survey for families to click on that way, because I think both of you know, too, like taking that initiative on top of other things to send that email could be a barrier for a lot of really important feedback.

[00:28:47] So maybe just an easier sort of accessible way for parents to give them your opinion without having to think of that chore of sending an email. A hundred percent. And thank you. That's a brilliant idea. We're definitely going to do that. I think on that point, you know, and Jody talks about the stuff he's balancing and, you know, is this real and testing, you know, the services and all the things. The piece of this that really makes it work is building trust with these caregivers is

[00:29:15] understanding that like all the families that I had the opportunity to meet with our journey with Walker, if we can help our kids stay safe and stay home, we want to be able to do that. And the caregivers who are in this fight, who are battling, you know, got to keep brother and sister or a marriage, a job, food insecurity, transportation insecurity, all these other things that these families are facing. We have to make the thing we do not just another thing. It has to be additive.

[00:29:44] It has to be valuable. It has to have moments of feeling even magical that like somebody stepped into this thing that nobody has stepped into before. And if we don't do that, if we're seen as adding chores to caregivers, then this doesn't work. So that's a great example of even from my email idea, we're constantly looking for those opportunities. So thank you for that idea. Yeah, for sure. And I think word of mouth and hopefully this episode, we're at least going to blast it to

[00:30:13] Texas, D.C. and Florida. I know there's some very highly motivated families and everybody has their own advocacy gift. And some people would feel very passionate about helping to push things forward in their Medicaid waivers and whatnot in their states, especially during times right now where house bills are going. I know at least in Washington state. So I wonder, are you figuring out a way to organize anything advocacy-wise for policy

[00:30:40] to help parents understand how they could show up and help get these things offered in the states that they're living in? You thought about sort of organizing the troops of parents to let them know that this magical unicorn actually does exist and that they can help. We do. So, I mean, I mentioned that the huge partnerships that we develop with PCPs and specialists and hospitals, and we're all partners in this to make sure these kids get the care that they need.

[00:31:09] There's no partnership to us that's more important than supporting these caregivers. And on the advocacy side, we're obviously in a lot of change right now. I mean, the state legislatures have a ton of activity going on. There's a lot of activity at the federal level. A lot of discussions about changes that are coming. What's never been a part of the conversation before in a way that it can be now, it's always been a moral imperative.

[00:31:34] And it's always been these passionate caregivers arguing for the things that their children need. What we hope to contribute to their incredible effort is an enormous now database of, you know, not only is this care needed, not only is it effective, but this point about the ability to also lower total cost of care.

[00:31:59] If you're a policymaker and you're hearing a lot of this today, you know, budget pressures and different things and how that might negatively impact. Our goal is to wrap these families in a protective bubble and make sure that none of the changes hurt this population that already has so much to manage. So we are very active on the advocacy side. We're in discussions with state government, state policymakers, legislators, the regulators

[00:32:28] at the state level. We're also very active on the federal level. And the thing that we're really focused on is I have a perspective. Jody has a perspective. We have, you know, now 350 mostly care team members at Imagine who have lots of perspectives as well, but we have to make sure we're listening to the caregivers and we're not prioritizing something that is actually not as important versus something else. And so we have set up an email.

[00:32:58] It's at advocacy at imaginepediatrics.org that we are hopefully going to be using to start building networks of caregivers. They don't need to be in the three places I mentioned geographically. We want to hear from caregivers everywhere. What are the things that they need fought for? And we're going to invest in doing that just in particular in these times of change

[00:33:23] to not only be able to help organize and support that, but to also bring this element of, okay, so if the person we're running into a wall with is also is arguing that it's all too expensive. Hey, by the way, if you support these caregivers, they want to help these kids. They're working as hard as they can to do that. If you help them and give them the right tools, you've just eliminated your financial argument too, because ultimately it ends up costing less.

[00:33:50] So there's really, it's a strong position. We want to take advantage of that for the purpose of helping these families. And so we appreciate any and every connection and input that we can gather from this incredible caregiver community. So I guess maybe just some final thoughts from the two of you. Taylor, I'll start with you. In honor of Walker, what's the message that you want to leave families and maybe especially dads who are listening today?

[00:34:16] I think about Walker in everything that I do. And I think a lot about the first moments of finding out that he was sick and how isolating and alone it felt. And you have all these dreams and all of a sudden they're different. And adjusting to that is hard. And I think allowing yourself the space to recognize that, you know, things have changed and life

[00:34:45] is different and take a deep breath. Walker was, he had a secret code, which didn't stay that secret because I actually told the group that gathered for a celebration of life about it, but he would do three fingers in the shape of a W and he would tap it on his chest anytime that he felt gratefulness, courage, or love. And the real purpose of it was just to slow down a moment and to recognize how precious, you know, a particular moment was and not to let it pass you by.

[00:35:15] And I think, you know, the experience that I had and no experience is the same, that none of this is a bus tour, right? It's different for each of us. But the experience that I had in trying to adjust the way that I thought about his life and thought about our lives and respond to the new normal or as normal as it was going to be was, I think, so benefit by the community that surrounded us by tapping my chest, by slowing

[00:35:45] things down and accepting that, that it's going to be different, but that your life experience between joy and pain just got a whole lot wider. So the pain's going to hurt more, but there's this upper end that extends as well. So these moments, all of a sudden, the good ones become even better and you're more grateful for them. And when your child is diagnosed with something that you certainly never foresaw and we all

[00:36:14] estimate out the lives of our children and have all these dreams of what they're going to be as soon as they're born, before they're born. And when you're told that your child has a special healthcare need that's going to change the course of their life and your life and everyone around them's life, it can be just terribly shocking and really throw you off your balance and shift all of those dreams into a place where you just don't know where it's going to go.

[00:36:42] And it's so scary and isolating. And, you know, we felt that certainly we sat next to families who felt that on a daily basis. And the efforts that we make to preserve some bit of whatever normalcy in quotes is in our own particular circumstances is everything. You know, it's these little moments that we can preserve for these kids to just be kids.

[00:37:08] And, you know, our hope here is that we take things off the plates of these caregivers so that they can focus on all the other things that they're dealing with in their lives and maybe, you know, be able to give some of these just be a kid moments to these kids that deserve it so much that are so often relegated to, you know, lower attention and lower funding and lower everything. That's our dream is that we can take these things off their plates and help these caregivers

[00:37:36] in this journey just feel a little bit less alone. We're certainly not a silver bullet for that, but I hope we're a big part of helping. How about you, Jody? Maybe for the parents who are in the trenches, what encouragement do you have for them? I would say through my 16 years so far, because Callen is 16 and Lawson is 12, probably one of the most important things I would say is never give up.

[00:38:04] Never stop fighting because as we know, you're constantly going to be fighting for one thing or another. You're going to be fighting for equipment. You're going to be fighting for services. You're going to be fighting for, depending on what state you live in and once you can get Medicaid. It's just all those things that you're going to have to fight for. And sometimes it's made to be difficult and it's unfortunate, but just keep going always.

[00:38:34] I think probably one of the other ones is trust your gut. As you go through this, there are going to be people, lots of people that are going to be telling you one thing or another. Whether it be doctors or specialists or whoever it is, as you start getting a little further along your journey, you're going to know your child. You are going to be the expert. Trust your gut. Don't just go with something because someone tells you to.

[00:39:02] And I think probably one of the most important for me, even though I said they're all important, is just be able to adapt and be able to grieve because it is definitely not what you expected ever as a parent of a medically complex child. And you are going to have your moments where things are going to be too hard and it's just going to be too much.

[00:39:30] And I know for me personally, I just couldn't wait to be able to teach my boys how to play football and do all those sorts of things. And of course, as time went on, it became very apparent that that wasn't going to happen. But I had to learn other things and learn other ways. We started playing adaptive sports. We started doing things like that. And honestly, we got into video games. And for both of them, that was just, that was it.

[00:39:59] We love to play video games together. And I like to think that it helps them therapeutically. But, you know, I'm probably sure a doctor wouldn't tell you that. But that was one of my favorite things. And just, you know, just relish in the good times. Take in all these special moments and treasure them. Because no matter what, at the end of the day, the smile on her face or the laugh, that's what you're going to remember. And that's what you're going for. Thank you both so much.

[00:40:27] I know so many of us need to be reminded of just that often. So thank you. And yeah, our families have been fighting for better care, smarter care, care that actually works for our kids. And imagine pediatrics is doing just that. And you're proving that our kids being able to stay home more often, it's better for families and outcomes and obviously better for the health care system. So my wish is that it grows and it expands.

[00:40:53] And that more kids and more families and more states have access to this because you both know we're all stuck in a broken system and we're fighting for basics. So I'm so grateful for what you're doing. And I'm so honored to be able to share this message. And I'll have all of the links and stuff in the show notes, especially people who qualify for it now. Go check them out. Go to their website. It'll all be in the bookmark links here. So thank you guys so much for joining me and going over Imagine Pediatrics and your experience

[00:41:20] with it and sharing about your three boys. I'm really thankful and I hope to get this message out far and wide because our kids deserve it. So thank you so much for being my guests today. Thank you so much, Effie, for having us. Just one other thought while Jodi was talking. You know, so touched by these families and the thing that every time I get low or feel

[00:41:45] frustrated with something sitting in our care team areas and getting to listen to these empathetic experts help these families in ways we didn't have with Walker fills me at soul fuel, really. And listening to Jodi talk, I was thinking about, you know, dadvocate, which I love that term. But this idea of, you know, this baseline that you kind of can live on, which has got a pretty tight band around joy and pain. When your kid is sick, that band just gets so much wider.

[00:42:15] And while the pain is so much beyond anything you anticipated you would ever experience, the joy part goes up too. It's those little moments. It's that little bit of time. It's that thing your child was able to do today that they weren't able to do yesterday. And it carries such a huge impact. And if there's any opportunity that we have, whether through Imagine or other, to help families access those moments, that's really what it's all about.

[00:42:43] And I appreciate Jodi making me think today even a little bit more about all that. Yes. Oh my gosh. Thank you for adding that. We do have such a luxurious amount of joy and love that fill our hearts that I'm not sure we really would have been able to revel in as much as we do now. Yeah. There's a lot of joy in that grief, right? That is weaved together. I really appreciate the perspective that both of you shared.

[00:43:09] I could listen to parents talk about deep, meaningful stuff all day. But I know I've taken a lot of your time. So I appreciate it. And I'm really looking forward to sharing our conversation. And I'm going to have Jodi back on the show because I heard about some really rad things that he uses at home for his boys that I think families will want to hear about too. So stay tuned for that. Well, thank you, Effie. I really appreciate you giving me the opportunity. Thank you. Thank you so much, Effie. It's an honor to be with you.

[00:43:37] Appreciate all the things you do for this community. I hope you've been enjoying this podcast. If you like what you hear, please share this show with your people. And please make sure to rate and review it on iTunes or wherever you get your podcasts. You can also head over to Instagram, Facebook, and Twitter to connect with me and stay updated on the show. If you're interested in sharing your story or if you have anything you would like to contribute, please submit it to my website at effieparks.com.

[00:44:05] Thank you so much for listening to the show and for supporting me along the way. I appreciate you all so much. I don't know what kind of day you're having, but if you need a little pick-me-up, Ford's got you. I don't know. Thank you. Thank you. Thank you. Thank you.