#390 Nuanced Rose Garden

Chris is the father of a young man living with type 1 diabetes.

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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:11
Friends, how are we? How are you? Who's we? Friends? How are we? Oh, I have no energy to re record that. So let's just keep moving. Welcome to Episode 390 of the Juicebox Podcast. Today I'm going to be speaking with Chris. He's the father of a child with Type One Diabetes and he does an absolutely marvelous job about discussing this subject about discussing the subject does an absolutely marvelous job discussing the subject but this is what happens when you let me do this on a Monday morning. Anyway, don't let my marble mouth influence how you think the rest of the episode is going to be because it's going to be absolutely spec donkey Lois tacular. Understand. And Chris very quietly does a job here today that he didn't realize he did. This is a very good episode. Please remember while you're listening, that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan. We're becoming bold with insulin.

This episode of the podcast is sponsored by the Omni pod tubeless insulin pump, you can go right now to my Omni pod.com Ford slash juice box to get yourself a free, no obligation demo of the Omni pod sent directly to your home. do that now and a pod experience kid will be waiting for you in the mailbox. After that you can try it on and see what you think. The show is also sponsored today by the dexcom g six continuous glucose monitor. And you're going to want to go to dexcom.com Ford slash juice box to find out more about that amazing device. There are links in the show notes and to Juicebox podcast.com to these and all of the kind sponsors of the podcast. Now let's get the Chris. Here. Ready?

Unknown Speaker 2:18
Hello, everyone. My name is Chris. I'm the husband to Amanda stepped out of Alyssa who's 19. My daughter Emily is nine and Cameron who's our 12 year old with type one.

Scott Benner 2:30
Okay, so you and your wife have three children together and then you're the stepfather to one other Is that right?

Unknown Speaker 2:37
So Alyssa is our oldest She is my stepchild. And we have two others, Emily and Cameron to others.

Scott Benner 2:44
Sorry. Okay. three kids. type one in the family at all.

Unknown Speaker 2:51
Not on my side. My mom has type two that she developed way later years in our life. Amanda's my wife, Amanda, her uncle has type one. He had type one when he was a little boy, since he's been a little boy.

Scott Benner 3:07
Right? So there's a pretty clear line there. Was it one of those things that people expected or? Not really?

Unknown Speaker 3:16
Not really. I mean, as we missed all we missed every sign that was there. The way it kind of started was we we were sitting around the dinner table one night, and we looked at Cameron and said, Wow, he's looking kind of slim. Maybe he's going through a growth spurt. And he was drinking a lot of water. And Amanda drinks a lot of water just because she's active. And we just thought maybe he was being a responsible kid. And he ended up losing he lost about 10 pounds over the course of a month, which we didn't learn. We didn't learn that till his diagnosis.

Scott Benner 3:54
Yeah, no. I mean, how would you? It's tough. How old was he?

Unknown Speaker 3:58
He was 11 at the time. So today's actually his one year diversity. So 325 19 was when he was diagnosed.

Scott Benner 4:05
Oh, well, congratulations. So a year is a big accomplishment. Good for you. It is it's gone by quick. Oh, wait, you see how the rest of them go by? Well, you know, it's interesting. Let's kind of jump off of that for a second. What is different today than say nine months ago?

Unknown Speaker 4:24
stress level stress level is very much reduced.

Scott Benner 4:30
Do you think it's just the time that did that? Or like what do you think got you to that spot?

Unknown Speaker 4:35
I think it taught I think time was all of it. I think it was it was getting comfortable with making decisions. It was getting comfortable that not every decision was going to end to a to a better consequence. Okay,

Scott Benner 4:50
so everything just felt dire in the beginning.

Unknown Speaker 4:53
Yeah, it was scary. Yeah. I mean, I was I was absolutely frightened when it happened.

Scott Benner 5:01
frightened that in the short term, there'd be a problem in the long term. Can you kind of put into words what it was you were worried about?

Unknown Speaker 5:10
I just had no outlook, right? I was I was sitting here thinking that every every level of normalcy, normalcy was going to be taken away from us that, you know, he wasn't going to be able to do sports. How are we going to get through injections and constant finger pokes and watching his diet, all of those things were just huge concerns. I

Scott Benner 5:31
remember feeling like, there was a regular life that most people got, and a messed up life that some unlucky people got, and that we got that one. Like, in the very beginning, and sort of, from a youthful perspective, I guess that, you know, I always think of that old song, like, you know, what is it that at some point in the course, it's I never promised you a rose garden, or whatever that is, like, you know, right, but but when you're young, you just sort of feel like, Oh, I'm gonna go to school, I'm gonna learn something, I'll get a job, I'll meet a person, you know, maybe we'll buy a house or make a baby. And then you know, the kid will go to school, and I'll buy a couple of cars and save up a couple of bucks, and I'll get old, look at a tree and drop that. And that's how it's gonna go, you know, like this kind of just kind of idea, like idea of what a long life looks like, with a family. And then when you really start meeting other people, and talking to other people and seeing what's happening to them, you recognize that, that really, nobody has that, for the most part, you know, anybody who gets that is just, that's random. That's the, that's the random, right? The that nothing really went wrong the whole time. You know, that that's the 1% not the, not everybody else. So you know, everybody gets a thing and, you know, art and got diabetes. And, you know, we just were like, Alright, well, let's figure this out. But yeah, in the very beginning, I remember feeling like, oh, some people get a good life. And some people don't, we don't, you know,

Unknown Speaker 7:03
well, and this was another step of just tragic events, somewhat to us. are life changing events, I guess I should say. So, Emily, who's nine, she had wilms tumor when she was four months old, which is a kidney cancer. So she had to she had to lose a kidney and go through 26 weeks of chemo. She's all good now, other than not having one kidney, right. And then Amanda, my wife had, she had a brain tumor a couple years after that, which she is 100% in grade as well. But just, this was just another having Cameron have his diagnosis, just like, what's next?

Scott Benner 7:43
Yeah, I would imagine after those stories, that it's hard not to, like wake up in the morning and think like, is this the day my foots just gonna fall off? You know, like, what crazy thing is gonna happen? Wow. So your daughter? What was that called that with her kidney? It's called wilms. tumor

Unknown Speaker 7:59
wi lmsw. tumor. And she was

Scott Benner 8:01
very young when she had it.

Unknown Speaker 8:03
She was four months old when it was picked up on a wellness check and sent us straight to children's that our local one of our local children's hospitals for a scan. Wow.

Scott Benner 8:15
And is that something they they couldn't remove that? So they just took the whole kidney?

Unknown Speaker 8:20
Yeah, it was attached to the kidney. So the only safe way to get rid of the tumor was to take the kidney with it.

Scott Benner 8:26
Now, if she does that make her I don't know a lot about cancer, I guess thankfully. But does that make her in? She they consider that a cure? Is it remission, like how did they talk about it? It's their follow up to it.

Unknown Speaker 8:39
Yeah, so they considered once she was five years. free of it. She was in remission. So we would go back. And you know, initially, after it happened, you'd go back every three months for a new scan, and bloodwork and then it would stretch out to six months, then it would stretch out to a year. And then once she hit five years, it was official, you're in remission. You could come back, you know, every couple years, just to check in with us. I see. And that was it. And how old is she now? She's now nine,

Scott Benner 9:12
nine. So this is this is a long time ago. Do you still think about it? all the time? Yeah, I can't imagine that. It would be I just feels like it would be impossible to just forget.

Unknown Speaker 9:24
Yeah, that was that was tough, you know, and then getting through that and then getting to getting to Amanda and her her brain tumor and getting through that. That was That was tough because I was sitting there thinking, you know, I'm gonna have to rape you know, what could happen with this? Right? So,

Scott Benner 9:41
how old was your wife when that happened?

Unknown Speaker 9:43
You know, it was 2014 so

Unknown Speaker 9:47
she's, she's 44 down, okay?

Scott Benner 9:53
Anything like that in her family like this cancer run in her family.

Unknown Speaker 9:57
Um, not to my knowledge, interest. Single enough my mom, my mom's at like, she's 84 now. Yeah. And she had a brain tumor when I was a little kid. I obviously there's no correlation between the two of

Unknown Speaker 10:09
them. I don't know, Chris, maybe you give people a brain tumor. It's possible.

Unknown Speaker 10:14
It's possible.

Scott Benner 10:15
I don't think it is. But you're the only you know, the only thread I see between those two people not knowing much about your life. Sorry, I don't think most people would joke about brain tumors. And I'm not joking about brain tumors. I'm, I'm literally calling you a mush.

Unknown Speaker 10:32
Yeah, well, I know once you once you move past these things, you know you definitely in Cameron's another side of that. I mean, we've moved past and yeah, we're, we're getting on with life.

Scott Benner 10:42
So anything you can do, right? I mean, what do you like it? Yeah. What do you do you sit around and just wait for something bad to happen, you know, it's either going through or it's not and in between now and then or never, or a lot of days that you get to enjoy. So, you know, in your house avoiding the Coronavirus

Unknown Speaker 11:00
are Yeah, exactly. Are you

Scott Benner 11:01
sequestered?

Unknown Speaker 11:05
Yes. To some extent. So we live in Washington State. Okay. You know, this is kind of where it started. We live south of the Seattle area about 50 miles and I'm fortunate to work from home right now. Okay. kids are out of school. So we're, we're staying put as much as possible.

Scott Benner 11:23
Yeah. Are you making out? Okay, we're doing all right, actually, so far.

Unknown Speaker 11:28
Yeah, we're doing okay. I mean, kids are doing great. I mean, you know, endless, endless games a fortnight for Cameron and Emily doing whatever she's doing plus mixing in some school stuff and some outside activity. I think. I think the the the kids are definitely faring better than the adults.

Scott Benner 11:43
Yeah. I, I feel that

Unknown Speaker 11:45
they don't stir crazy. Well, they're not

Scott Benner 11:47
worried about paying bills. So correct. Yeah. Correct. They've got that they've got that for them. My kids are on a personalized sleep schedule. At this point. They just go to sleep when they want to get up when they want to. They're getting their work done. It's like odd at odd times of the day. I passed my son at midnight last night. I'm like, What are you doing? He's like, I'm getting a shower. Like, yeah, this seems like the perfect time for that. So

Unknown Speaker 12:09
yeah, you know, I've, uh, you know, through all of this, I think I've, you know, I've kind of learned to stay away from the news as much as I can. I just, I don't I don't have the capacity to take all the all the all the bad stuff. So I, I kind of shelter away from that a little bit. Would it hit you hard if you if you

Scott Benner 12:27
got a daily dose of what's happening? Do you think it would be overwhelming? I think so. I think

Unknown Speaker 12:35
I get I get more concerned, you know, after everything I've ever that our family has been through of, I get stuck in the what could possibly be next? And I don't want to be there.

Scott Benner 12:43
Right. Right, right. Well, I think the good news is, is that if you're a healthy person, you know, you have a better chance of maintaining a healthy situation, if you do get sick, you're got a better chance of overcoming that illness. And you know, your, your son's doing great with his diabetes, right? Like, you're, you're definitely one of those people. I know. Because you're communicative with me. And you know, from online, obviously. And I feel like I've watched you figure this out and stay focused on it. In an impressive way. I know, I've never said that to you, I would have no, I would have had no reason to say said that to you, but you're interested work, you work hard at understanding the diabetes. You don't. You're not not impacted by it, but you don't let it get you down. And you're always looking for more information. I think that's just a perfect way to be. So

Unknown Speaker 13:38
yeah, and that's kind of how this all started. I mean, when when, when I talked to you the very first time, what I was ultimately looking for, at that point was just I wanted to surround myself with, you know, people that have the knowledge that could help us do this as best as we could. Yeah. And, and that's why, you know, Jenny Smith's in our life right now, I just, I we had our, our monthly Skype meeting yesterday. And she's gotten us to a good place. And the the, the juicebox Facebook group has just been I mean, I've never been a part of a Facebook page that just had a group of people that just undeniably wanted to help each other. It's just, it's amazing. I, you know, it's so funny. I don't usually record twice in a day, but I just finished with Jenny like an hour ago. And that Facebook group came up. And I told her how there's times,

Scott Benner 14:31
I do my best to look at it. And you know, but it's not a it's not a conduit directly to me, I just, I get in there as much as I can. And there are times I'll see something, and I'll think, Oh, this is the answer to that. And I'll go to type it in somebody already typed it out. And I'll just like, I'll just like like it and like, you know, be like this. This is what I would have said, uh, but I told her there's also times when I look and I think oh, that's, that's more thoughtful than what I was going to say. I just realized that he used to talk all the time about people come into the diabetes community, they learn what they learn. And they go back and live their lives, which is incredibly valuable. But it's also very cool to see a small band of a couple of thousand people stay back to say, you know what worked for me hear this, or you should consider that and I should knock on nine pieces of wood. But never judgmental, not snarky. Nobody's, uh, you know, once the like, start a flame war, like, I keep thinking like, This can't go on like this forever. But maybe it can, you know, maybe if you get the right people together, and you're, and they're, you know, comfortable. And then the new people come in who need information and feel like I'm in a place where there are people here who know better than me, I'm going to sit quiet and learn. Maybe that's the right mix. And because I do agree, it's working, like incredible. I mean,

Unknown Speaker 16:00
I mean, boy, I really hope so. And, and I can, I can tell you that I was right, about the time that camera was diagnosed, I was I was just mentally burnt on social media. And, you know, Facebook in particular. And I was I was, after Cameron's diagnosis, you know, you sit in the hospital for five days, I mean, he was in, he was in DK when we got there. And we were in the ICU for three days. And I just, I just started doing research. And I reached out to a couple things, and I got these just all of a sudden, I just getting these these private messages from strangers, that were just offering help and assistance. And, you know, one of them had led me to you and hopefully I would have found the podcast anyway, but just people just jumping in and wanting to do nothing, but you know, share and not dictate, but share what it worked for them and, and things to go look into. I was just and then find it. And then once you started that group, I'm just I'm re energized. And and there's some toxic groups out there too. I mean, I got into a some type of an online altercation on Facebook with with on a on a group that that I won't say, but she was chastising me because we were on a CGM so early. She says, you know, you really need to be, you really need to learn diabetes for a year before you start getting on technology. And I was I just I, I couldn't fathom what she was trying to tell me because I understand. I've been around people that had type one. And I seen their struggles of the constant finger poking things and, you know, the shots and the stresses of that. And I guess maybe we're I don't know if there's a term for it. But we're maybe one of those, you know, new new generation diabetics, like Cameron's had one injection of insulin, since he started on his on his own his pump. Back in middle of May, last year, he's only had one injection. And he's scared. I mean, he doesn't want he doesn't want to have a needle. He doesn't. You don't want anything to do with it. Mm hmm. And so I guess the point of my story was, is that the the podcast is absolutely refreshing. And it's great. I love the people that are over there. And I love that they help out. But like I said, there's just there's some toxic groups out there that are just not don't seem like they're given really good information. And I've, I've subsequently, you know, deleted myself for most of them. Yeah,

Scott Benner 18:34
it's tough when someone has come up through a generation of doing something. And then the next, like you said, like a newer generation has different tools. They're having different outcomes. They're having different experiences. I always try to put myself in the shoes of the people who came before and think. Would I sit there if I was them and think, are these new people they're having like, what like they just what they just put on a pump and a CGM listen to a podcast and they have a one C and the sixes, like, That's not fair. I struggled forever. You know what I mean? And, and the or the idea of like, you have to really live in the, you know, in the battle, so you can understand it. I get the overall idea behind that. But that was something people used to say when pumps were available, but not CGM. Right, and so like you really have to understand the ebbs and flows of how your blood sugar works. Okay. I don't know what that has to do with how I deliver my insulin First of all, but I do think it's, it's a reasonable statement, except it used to take years to learn. And now, you know, if you had a CGM on you could probably figure it out in a week. You know, and and that's got to be hard to hear if you were one of the people who had to spend years because the tools and and the direction were different. And having said that, Jenny and I just spoke at length about how most doctors are still teaching like it's 1986. So, you know, it's a very weird space. You have to be careful where you get your information from, I guess

Unknown Speaker 20:14
it's interesting you say that because, you know, we part of the, you know, being in the hospital for five days, as you get a, you get a diabetic educator that comes around, and they really teach you the very basics of diabetes. Yeah. And if we left the hospital with the types of strategies that we were taught there, and nothing against them, because I know that they see so many people. And you can't, not everybody can get the advanced course at that point. But if I was still invoking, and those types of strategies that I was taught when we left the hospital, I don't even want to know where Cameron's a one c would be right now. I mean, he was he was 11.8 at diagnosis. And he two weeks ago was 6.7. And, and I think with with a ton of improvements still available to us. There's a lot of good road ahead of you still. Absolutely. And I don't I don't think that I don't think we'd be anywhere near a 6.7 using the strategies that we were taught in the hospital.

Scott Benner 21:11
I Oh, yeah, I think it bears repeating that, you know, a year into Arden's diagnosis, I was frequently crying in the shower. And her a once he was closer to nine than it was to eight. And I did not know what I was doing. I constantly felt like I was killing her either today or, you know, tomorrow. And I was listening to what I was being told. And my daughter goes to a good hospital. You know, I mean, we're not we're not in the middle of Podunk somewhere, you know, hoping that the guy at the general store who's also the barber understands diabetes, it's, I was at a real place and I was doing what best practices dictated. You know, 15 years ago, I,

Unknown Speaker 21:55
I was telling jetty, we went to our into appointment. And our endo is great. She's absolutely fabulous. And but she hadn't she had nothing for us. I mean, she didn't have any changes to recommend or anything. She thought we were doing great. Right. And, and we moved on.

Scott Benner 22:13
That's cool. So you're using Jenny now to fine tune is that which because six seven is pretty great. So yeah.

Unknown Speaker 22:23
One of the one of the challenges that I'm still struggling with is I think I'm, I'm, I'm sort of still in reactionary mode. Like, I don't I don't dose off of any history, I dose off of what, what some what feels right. I mean, there's some, there's some card counting in there as well. But, you know, I would say looking at Cameron's diet. I mean, there's you know, there's there's less than there's there's less than a dozen meals that are on, on repeat. I look at every meal, I look at those meals and I basically dose and based upon what, what feels right at that time. Yeah. And sometimes I'm right, sometimes I'm not. But you know, we have to there's, there's an occasional bump in nudge that has to happen, or there's an occasional Temp Basal that has to that has to be adjusted. And I think that's what I could get a little bit better at. And that's kind of what I need a Jenny for was, I needed Jenny for advice on how to manage Cameron's blood sugar's and it just really having somebody that could be there to look at the data and say, and just be another set of eyes. Because for a while there, and I think I messaged you a while ago when I was struggling. And it was I feel like I'm just I think this is this was an episode earlier on. I feel like I'm like this plane just flying over dropping insulin on Cameron with no regard to what it's doing to him. Because I couldn't figure it out. And once I got the bazel, right, and that was that was the biggest thing. And I've heard you say this in different Jenny say it so so many times. You got to get the bazel right. And once jetty helped us get that bazel, right. That's when things really started to click for us. And Cameron's eight one c went from I think he was seven, four. Right, before we started with jetty. And then he went to 6.7 on this last one. And I think that, you know, Jenny and I are gonna keep working together, but I think we're gonna, we're gonna continue to improve,

Scott Benner 24:18
I have to tell you that. In the episodes, I can, I can obviously see how many times episodes are downloaded. And in the pro tip episodes, the one they're all pretty close to downloads, you know, I mean, so, you know, we the first one, and the third one, you know, have about as many downloads as the 10th one and the 15th one in the pro tips. But the one episode that has less and it's measurable, is the basal episode. And I'm at the point where I want to run around with a bullhorn like yelling at people like you got to listen to me. It's the basal insulin like stop Ignoring that, it's it's everyone treats it like, like it's just not important. dictionary mean like it's it's it's the whole thing. Nothing works without bazel. No one believes that and I wonder how did they make it that far with that feeling? Like is everybody is it all reactionary in a way that, but listen, when I miss a bolus of a meal, I see my blood sugar go way up. But I don't think like, Is it the difference between micro and macro? Like, is that why Jenny's helpful even like, because while you're so busy, like just drilling down on the small things, Jenny's able to step back and see the big picture, and then talk you through the big picture. I think that's it. I think that while you're in the fight, you don't I mean, like, while you're in the foxhole, you're worried about getting shot, not worried about the geopolitical ramifications of the warrior fighting, I guess is the way to think about it. Yeah, in a way that nobody will relate to. But But, but But seriously, like, you're so busy in the fight, you can't see the war,

Unknown Speaker 26:01
I guess. I think we I just got tunnel vision. And I felt like I wasn't making any improvement. Because it was just constantly it was it was it was all about the bazel. It was because the bazel wasn't right. And nothing that I did, would produce good results, because because we didn't have the Basal where we should have. But you

Scott Benner 26:21
heard me say that on the podcast, and it still didn't. Am I right?

Unknown Speaker 26:25
Oh, absolutely. I just couldn't, I couldn't do it on my own. I couldn't find the bazel. I couldn't find it on my own. And once Jenny gave me the basis from it, and I've probably created two or three more bazel programs. And the other thing I've learned is, it's an It's It's not every day is not the same. There are adjustments that got to be made. I mean, this morning, I was looking at, you know, Cameron woke up it, he woke up at 131. And I was like, Yeah, I think I can make an adjustment. Because what Jenny saw yesterday, when she looked at Cameron's data was there's a certain point in time somewhere around 4am, that he starts to just kind of slowly drift up. And, you know, and then I go back and look at the data. I'm like, Okay, well, you know, let's, let's make a, let's make a small adjustment here. And we'll, we'll see what happens tomorrow. And if that doesn't work, then we go back and make another adjustment for you. So it absolutely I needed someone I just couldn't do it. I just couldn't do it by myself anymore. I just got to a point where I needed that extra set of eyes to point out the obvious, which was the bazel

Scott Benner 27:30
right. Now, I know I I was giving a talk recently, and I just set up and I was like, Listen, guys, I could just tell you, it's timing and amount. Okay, I'll see you later. You're gonna be like it, but that's but what's the rest of it? And I think even when people hear timing and amount, they think bolusing, but it's the bazel needs to be timed and well measured as well. It's you know, so I'm helping Arden's friend right now. And we, you'll hear she's going to do an episode you'll hear what happened to her, but she had a significant improvement quickly, and then got yelled at by her doctor. And that scared her mom who re changed her settings and her blood sugar's went right back to the way they were. And, and, you know, when I finally, because I was following her CGM, I let them go for a while. They're not my family. I'm not in charge, you know. But I finally texted, I was like, Listen, you know, if you want the success you were having, you got to go back to this. And these three bazel rates, you suddenly have that I can't make any sense when I'm looking at them seem like they're set up to keep her higher, not lower. And so let's go back to one basal rate and start over again. And, you know, we did that and took us two days. And I just looked at I literally while you were talking, you made me think of her I just looked at her 12 hour graph. And we're good. It's amazing. But yeah, you know, again, when you're that's me looking from the outside, it's not them because they were trying they weren't not trying at home, you know what I mean? So yeah, this is it's super important.

Unknown Speaker 29:08
We got a long way to go. We you know, we got a long way to go because I want Cameron to be at that place where, you know, he's, he's comfortable with doing sports and activities. So there's still a lot there's still a lot for us to learn. It's school time is one that's been challenging for us. And it was interesting because there was a there was someone that had posted something in the in the podcast, Facebook chat, and Cameron. His blood sugar goes up as soon as school starts. And as soon as school gets out at two o'clock, he plummets. And it's social, those Yep, stress. So those are areas where we're we're still working on trying to try to figure that out. So Jenny's Jenny's going to help us some more with that. Unfortunately, you know, sports has been canceled. I really need a Jenny for that as well. football was getting ready to start for Cameron We last year he did all of his sports he did. He did baseball, he did football.

Unknown Speaker 30:07
And we were able to manage through those.

Unknown Speaker 30:11
But we needed a little bit more help.

Scott Benner 30:13
Yeah, there's nothing wrong with it. I'll tell you that since you know we've all been locked in our houses now. All in second, I'm going to tell our new Bolus even though this thing goes up what anything Arden's blood sugar has required significantly less insulin, since she's not going to school. Arden gets good grades. She's reasonably popular, she has friends. There's nothing about school that is a burden to her, other than she doesn't particularly like it. And she's using significantly less insulin now that she's not in school.

Unknown Speaker 30:54
So it sounds very similar to what's going on here too.

Scott Benner 30:56
Yeah, it just, it could very well be for a lot of people. And I don't think it's something you would think about, you know,

Unknown Speaker 31:05
I've been, I've been filling pods with probably 20 or 30 less units the last two weeks.

Scott Benner 31:12
Well, it's significant. I had to move Arden's bazel down, I had to move, I had to move a lot of settings, and, you know, take take insulin away. And it took me a day and a half to figure it out. Because I went the wrong way at one point. Excuse me, and I had to dial something back again. But you know, it didn't, it didn't take long. And that's something it's interesting. I hear you actually, in a half an hour have made me proud of the podcast and made me feel bad. Not on purpose. But let me let me tell you why. Because I know the answers are in the podcast. But I can't be there with each person to say, hey, that thing you're hearing, that's not the right, you're taking the wrong thing from it. You know, to me, like I really wish I really wish everybody could, like, you know, as I'm helping Arden's friend or making an adjustment to ordens thing, or listen to Jenny, talk to you, like every person with diabetes deserves a day and a half with a person who can just look at their data and go hey, this is this move this here. This is why nobody deserves to like struggle along like this. And I it makes me makes me a little sad that I mean, that's reality, I guess right now.

Unknown Speaker 32:26
Yeah. And, and we're absolutely fortunate. I mean, I'll be straight up honest financially. It's okay for us to use jetty. Yeah. Insurance won't, insurance won't pay for it unless I can get the window to say that it's required, right. But I'm not ready to go there yet. So I'm going to do it as long as we possibly can. I'm going to learn as much as we can. And keep moving forward. I think. I think everyone should leave the hospital with a CGM, and they should leave the hospital with a prescription to go listen to to some podcasts.

Scott Benner 32:58
I got a beautiful note from a CDE last night from Australia. And she said that she teaches from the podcast every day. Every day, she talks to people she talks to them about the stuff that she learned listening to the podcast. So

Unknown Speaker 33:14
a few a few episodes behind.

Unknown Speaker 33:18
I think it was a do hard things. I think that one took a toll on me. So I slowed you down a little bit. it slowed me down a little bit. So I got to I got to catch up.

Scott Benner 33:27
A long time ago when I was a young boy, my parents bought me a remote controlled car. Now this was in the 80s. So technology was you know, dicey. This car had a controller, and the controller had a long wire. It was wired to the car. So as the car moved, I had to walk with it. So was it remote control? Not really, it was controlled. I guess remotely from the car but you know not didn't give me any real freedom to pick that car out for a ride and really see what it could do. That is sort of how I think of the on the pod. It's a tubeless insulin pumps. And because there's no tubing, the pump, the site that is on the body is not connected back to a controller. You see what I'm saying? So you can go run free, live your life jump over hills made of dirt. This is how I imagined I was going to use my car until it ran up the hill and then flew into the air and the wire ran out of you know slack and it just yanked and came back. But that won't happen with you. If you try the Omni pod because it's not attached to a controller. This is very, very, very important. It's also important because you can keep it on while you're swimming, taking a shower activities. All places where tubed insulin pumps often require removal and you need Insulin 24 seven, not just when it's convenient. You can try this for yourself because on the pod we'll send you a absolutely free. Zero obligate, do you hear my voice obligation sent absolutely free, no obligation demo of the pod today, go to my Omni pod.com forward slash juice box they have that sent to you right now. No Obligation doesn't cost you anything yet Can't go wrong. In this scenario, let them send it to you figure out if you like it. It's that easy. And you know what else is easy? Huh? Did you see that coming? I bet you did. The Bolus that aren't in just made from macaroni and cheese for her lunch. I know most of you hear macaroni and cheese and think, no, I can't do that I've tried and that makes blood sugar's 400. And it stays like that for hours. And it's just impossible. Except Arden's blood sugar is 119 actually started at 140. She got a little rise, we're not sure for what Dexcom said, beep beep. We put in some insulin, the 140 started to come down. As it began to move. It wasn't even falling yet. She said, I'm going to have macaroni and cheese. So we made macaroni and cheese. We Pre-Bolus for it. We were properly aggressive with the insulin, able to wait until it was time to eat, meaning I was able to balance the action of the insulin with the impact of the carbs. Because I could see Arden's blood sugar on her Dexcom g six continuous glucose monitor, I was able to make an accurate bolus for a food that most of you think is almost impossible to Bolus for. But it isn't not when you can see the data dexcom.com forward slash juice box Get yourself a G six right away, as soon as possible. Have macaroni and cheese again, without a blood sugar that ruins your day and makes you feel like let's be honest, makes you feel like crap. There are links to all of the sponsors in the show notes of your podcast player, and at Juicebox podcast.com. But you're looking for my omnipod.com forward slash juice box to get that free, no obligation demo today. And dexcom.com forward slash juice box to start with the G six. The results had and these examples belong to us. And yours may of course vary. But I like your chances much better with rock solid technology than I do without it. Okay, we're gonna get back to Chris now. A lot still to come.

Unknown Speaker 37:48
I thought one thing that would be interesting to share and I think this is you know, the, the the Miss signs. You know, kind of Cameron's story of of how this went. You know, he he was drinking lots of water. He looked like he was slimming out. We went he went to a baseball game. My daughter's boyfriend had a baseball game and then they decided to go to dinner afterwards. And Cameron decided he wasn't hungry. And so he didn't eat dinner that night. The next day I had him. We were going to Supercross and Cameron was so excited to go to Supercross. And he just he looked tired. He just didn't look like himself. And we got on the train. We got to Supercross and we had to walk from the train to the stadium. And we had to stop multiple times because he had it. He was trying to catch his breath. Yeah. And I couldn't figure out why he was exhausted. And we went in we kind of did the whole little, you know, walk through the pits thing and, and you know, Cameron said he's a huge football fan. And and one of the one of the writers Pitts was marshawn Lynch in camera. You know, he Cameron just adores marshawn. Lynch. And he wasn't even excited. Wasn't even excited that he was there. And I have a photo of Cameron that I took. And he doesn't even just I don't know if you could tell in someone's face that they don't look right. But you can tell in his face that he didn't look right. going back and looking at those. Those photos now. Yeah. And we got done with our pet walk and the race was getting ready to start. So we went and sat down. We watched the first race and we had a conversation. He wanted a snack, and he wanted like some type of ice cream and, and then a minute later, he said that he didn't want it. And then a minute after that. He said, Hey, I think I want some ice cream. And I said, Kevin, you remember the conversation we just had and he just kind of looked at me and he said, No, I don't remember. Yeah. And he had water with him and he said that water was tasting funny. And I said okay, he says Can I can I have a soda? And I said sure we don't. We don't drink a lot of soda in our family. So we walked up the stairs and bottom of soda. We went back and sat down and then he said he needed to Go to the bathroom and we were one race into this and, and I said, Cameron, are you okay? And he said, No. He said, I'm just I'm really just not feeling good. And I said, well, let's, let's get out of here. And he says, No, I feel bad. I know you wanted to come and I wanted to be here. I feel bad. And I said, No, I said, we're, we're getting out of here. Mm hmm. So we we went to the trade walk back to the train, same thing just exhausted. You know, he had to stop a couple times. We got on the train. And you know, I had the the big plastic, you know, clear stadium bag that you take in that they require you to take, and I started emptying it, and I put it on my lap because Kevin says, Hey, Dad, I don't think I'm gonna say much on the way home. And I know what that meant. That meant, hey, my stomach doesn't feel good. I'm gonna focus and try not to get sick. Yeah. So I took that bag out. And I'm like, Alright, just in case the inevitable happens, right? I'm gonna be somewhat prepared for this. And we're halfway back, you know, to the parking garage from the train station or on the train. And he just unloads and, you know, I catch as much as I can and kind of inconspicuously clean up as much as I can. And we get off the train. And I tell the, I tell the security guys, hey, you know, my son got sick, and he threw up on the train. He's like, I don't worry about it happens all the time. So I got camera cleaned up, we got him in the car. And you know, he slept the whole way home.

Unknown Speaker 41:21
You know, it was it was late. When we got home. He went to sleep. I checked on him in the morning, when he woke up and said, Hey, are you feeling bad? He said, he said, I'm okay. He said, Can I have some toast? And I said, Sure. So I made up some toast. He laid around most of the day, just not feeling good. And then, you know, a little bit after lunch, I said, Hey, you know, what's hurting? What do you what do you feeling? And he said, is lower right hand side is lower right side of his stomach was hurting. And, you know, first thing I thought was, you know, maybe, maybe appendicitis. So we ran them over to the urgent care. And, you know, I told the urgent care, Cameron, you know, as a, as a younger child, he had, he had some constipation issues. And he said, You know, I don't the urgent care doctor, so I don't think that's it. He said, and I'm going to do a couple other tests. We, he did a couple stretches with him and said, You know, I can't really rule out appendicitis, he said, but I can't do anything about that here. You got to take him to the Children's Hospital. So I called Amanda and I said, you know, hey, we're going to the Children's Hospital. So we go there. And, you know, we sit for a few hours and wait, finally, get us back there. And, you know, the doctor comes in, looks at looks them over? and says, Well, I think we're gonna do an X ray. So does an X ray. And determines that Yep, sure. Enough, you know, Kevin's Kevin's backed up. So they do you know, they do their wonders. And and, you know, by that time, it's like, you know, it's nine o'clock at night. And you know, Kevin's not having any, I mean, we're laughing about it, because he's, you know, he's got to keep getting up and going to the bathroom. And he just, he doesn't want he doesn't think any of this funny, right? And no blood test, right? And what I've learned from this, just all you needed was the simple blood test. Yeah. So we were discharged from the hospital, and he's exhausted, we're driving home. And we get into bed, probably a little bit after midnight. 4am comes around, and you know, I watched him, you know, I'd wake up every it felt like I wake up every 20 minutes, and I'd look at him just to make sure he was alright. And I'd see he's breathing super fast. And it gets to about 4am. And he wakes up and I said How you doing? He said, I'm okay. He said, I'm going to I'm going to go to the bathroom. And he had climbed in a bed with me and Amanda went and slept with Emily. And he came back and I said, I said You're right. He said, Yeah, I'm okay. He said, Can I have some water? so sure. So I went, got him some water. And then about 10 minutes later, he was having, he said he couldn't breathe. And he was having just tremendous pain in his stomach. And I looked at Amanda and I said, you know, we got two options here. we'd throw him back in the car and running back to the ER we call 911. And he just said, Dad, I can't breathe. And so I said, that's it. I'm calling 911. So waited, you know, waited a couple minutes for them to show up. And they came in and checked him over. Because heart rate was at 180 beats per minute. They said he was getting 100% oxygen, but he just kept saying he couldn't he couldn't breathe. And so they called the Children's Hospital right then and they said you need to bring them in. So they said, Do you want to take them or do you want us to take him? I said, Well, why don't you guys take and we'll probably get the fast track. And so they said, Well, can you can you pick them up and carry them out? I said sure. And what I picked him up, Scott, I could not believe how easy he was I either had superhuman strength at that point, or this kid was I mean, he was super light. Yeah. And I couldn't, I couldn't figure out why. So they got him in the hospital. Amanda went with Kevin in the ambulance and I met them there soon as we got out wheeled down the corridor there and then the different emergency room doctor comes out and says is he diabetic? and I, we said no, not that we're aware of. And she said, he's presenting signs like he's diabetic. And she says, I have a test that will prove it. And we're looking at each other. And I'm like, there's no way this kid's diabetic, right? And she comes back and says that his, his blood sugar is 640. And then at some point, I don't remember if it was at that point, but down the line, they determined that he was, you know, he was in DK. So, you know, talk about, you know, missing the signs, right? We, we missed all of them. Yeah. I'm wearing I'm wearing a juicebox sweatshirt right now. And on the back of it has all the signs, and we missed and that was where the rough start have the rough part came in for us as we just we went into this level of guilt, like, Oh, my gosh, we we missed this. Right? how did how did we put him in jeopardy? And we had wondered how long I mean, we'd go back and thinking that How long had this possibly been going on? But there were little signs where he would eat and he would get sick? And and we're just wondering if maybe this this had gone on for some period of time? Yeah.

Scott Benner 46:07
I think I think you're telling a story that a lot of people can relate to. It really is. It's how I felt how Kelly felt like, how did we not see this? You know, Arden was Baba dead by the time we got into hospital. Yeah, you know, it just in hindsight, everything makes sense. You know, like,

Unknown Speaker 46:27
it's just that blood test, just that blood test. All we needed right the night before.

Scott Benner 46:32
Yeah. And they sent him home. And if you wouldn't have, if you would have taken what they said to heart just been like, Look, it's okay. Or maybe if he doesn't say I can't breathe. Maybe you maybe you can continue to persist without It's alright. You know, it's gonna be fine. You know, what I'm interested in at any time in this process? Did your thoughts get really dark? Did you think God he has cancer too?

Unknown Speaker 46:55
Yeah, interestingly enough, when we got the diagnosis that he was diabetic, I was relieved.

Scott Benner 47:01
Yeah. thought maybe you might be. Yeah.

Unknown Speaker 47:04
Well, I was I was relieved. Thinking about, you know, Emily. And and, you know, he had had previous stomach issues, like, you know, just to see if something more serious going on. Yeah. And I was relieved that he had, I mean, who could say they're, they're relieved that their son's diabetic. But at that moment in time, I was relieved that we knew what was going on with him. Because for the previous couple of days, I was like, what's going on with my little boy here? Yeah,

Scott Benner 47:27
right. No kidding. Arden could barely, like she couldn't even like Shuffle Along. By the end. She just, you know, we'd stand her up. And she just stood there.

Unknown Speaker 47:37
Now she was she was a couple years old. She was two

Scott Benner 47:40
years and a few weeks. And, you know, find

Unknown Speaker 47:44
it a little bit. What is it? Was it hard to see this? I mean, do you think it would have been harder to see the signs and an infant or younger?

Scott Benner 47:51
Yeah, it's insane. Because it now I look at the pictures of her. And during that time, and I think, who in their right mind doesn't look at this kid and go, Hey, that kid's got to go to the hospital. Yeah, like just it's she was I described her before she like air. She was like a, you know, a heroin chic model. She was like, you could see her ribs and she was just, she had clearly lost weight now on a 19 pound frame should last, you know, a couple of pounds. But it's a it was a lot on her. You know, like vacant eyes. You know, peeing constantly, for no reason. It's just bizarre how, again, micro and macro, right? Like when you're in the fight, you don't think diabetes? Like you don't think that you think why is my kid thirsty? Why, you know, why are they paying a lot like nobody and nobody sits you down? When you have a baby and goes, Hey, by the way, here are the side. You know, here's the things look for, for all the possibilities that could happen to you while you're raising this kid. But that those things don't seem dire enough to do something about to a lot of people is telling and that you can get to a hospital or a doctor and they still not figure it out. That's ridiculous. You don't I mean,

Unknown Speaker 49:03
what what what I mean, I don't understand why regular the regular blood testing isn't part of you know, just checkups

Scott Benner 49:10
with kiddos. I think I you know, Adam Edelman was on the show a couple days ago or last week now and he was nice enough to come on and explain the Coronavirus to us but he's, he's my kids pediatrician, too. And he'll describe you I'll ask him next time he's on to describe this job. But you know, his job is to you know, look at what's happening and say, okay, I've been seeing this in the community right now those symptoms normally point to this. And that's how we'll we'll move forward. You know, I mean, he's you know, that's that's how it's done that's what being a doctor is you know, it's not we all watch Dr. House at some point. So you think like, you know, that you say hey, my kids paying a lot and, you know, some genius like snaps in is like, Oh, you know what that could be it's not how it goes. And because the decay progresses so quickly at that point, you don't have a lot of time to figure it out. You know? Yeah, but

Unknown Speaker 50:07
the hardest part. You know, Amanda and I one night, we, you know, it was it was really, it was late really late or really early in the morning, Kim or what it was in the hospital. And I remember we just, you know, we had this big, bawling cry fest over this. And that was the last time that we ever, I feel like that was the last time we were ever sad about Cameron having diabetes, and then we just move forward after that. But the hardest part was him laying in the hospital bed, and All he wanted was something to drink or something to eat. And Hey, buddy, maybe tomorrow, right? And I had to do that for two days. Maybe tomorrow was

Scott Benner 50:42
bringing his blood sugar down.

Unknown Speaker 50:44
Yeah, well, they were bringing his blood sugar down and trying to, you know, clear that clear as DK out. Yeah. And that was tough. And then, you know, somewhere around third day, you know, they were able to get him up. And he was having a hard time walking. And we never figured out why he had to go to physical therapy for a period of time after he left, because he looked like he was walking on invisible high heels. And we don't know if that had something to do with the diabetes diagnosis, or if it was, you know, from laying in a bed for multiple days.

Unknown Speaker 51:14
But he he struggled with that.

Unknown Speaker 51:18
And then, you know, we went home, and everyone, everyone in the car had tears in their eyes when we left the hospital. Mm hmm. Maybe except for me, because I was trying to be the, you know, the tough dad at that point, right. But I think there was some there was some genuine fear about what his life at home going to be like with diabetes. And we got home, and we unsettled. And you know, we were inundated with these books and these charts. And I don't think we made it two hours before we called the hospital line and said, Hey, we don't know what to do here. Right. And we just continue to move through a couple days got better. You know, Cameron went back to, you know, playing video games online with his friends. He missed a spring break last year with all this going on. And then, you know, we started before we left the hospital, we started looking into the technology. And one thing that was nice about the hospitals and in the packet that we got from the the educators was, it was a Dexcom pamphlet. And it basically you fill it out and you add it to them and they send it to a rep and they figure out how to get you on a CGM. And the next week, and this happened by mistake because they didn't even pre authorize it with our insurance. But the day the next week after we came home from the hospital, this box shows up that we didn't ask for and it was a G six. And it was the receiver for the G six and you know all the parts that we needed. And we we call the office and they couldn't get us in for a little bit. So we we waited, I think it was it was three weeks, excuse me was three weeks to a month before we got them on the CGM. And while the meantime that was going on, I was already trying to get an insulin pump going. We did pump trials. And we did the first trial we did was a was an omni pod dash. And then the next one was going to be one of the two pumps and Kevin's like, Nope, not doing it. He said I'm not doing it, I'm not gonna have tubes. So we proceeded with the dash. We, we ended up having to fight for it. And this is my other message to everyone to I see all these people online that that say, you know, we can't get dash, and maybe unfortunate but I just got to the right people on my insurance company and just said, Look, this thing, he wears this thing for three days, and he it gets thrown away and he puts on a new one. I don't understand how that could be considered as a durable medical equipment, right, it needs to go as prescription. And luckily, I got to the right people. And they my insurance company wrote an override to their policy. And, and we now we don't have to ask me that dash since middle of May. Yeah, last year.

Scott Benner 54:06
There's a it's interesting, because another insurance company would see it the exact opposite way. They'd be like, that's horrible medical, that can't be farce. It's just ridiculous. And then the companies have to fight through that mess. And then when people can't get them, they're like, it's the company's fault. You know, like, Well, you know, they're working within the system and the system is bipolar, you know, they mean like, one one minute at once one thing and, you know, go to another company once another thing, so,

Unknown Speaker 54:32
and I think that's my message to is you know, the the pump companies are doing everything they can through the channels, but sometimes it just takes you to be, you know, diligent and try to get to the right people and try to you know, really explain what you what, what you need and, and that's just that's what this was really all about. This is, you know, part of why I reached out to you early on after I learned is just I wanted to, I wanted to provide the best I could for Cameron Yeah. And I wanted him to have the best, the best things that he that he Could have and you know, I, I can't wait for the next piece of technology. I think any, any type of looping situation would be very helpful for, for our situation with school time and just everything in general. Yeah, I know it'll never be just plug and play. But you know, I mean, I'm excited for what's in store for him to make his life easier. Do you think that

Scott Benner 55:25
you would you you're using dash now would you go to horizon when it comes out this the day that we can Oh, gotcha. Okay, so you're up for all that?

Unknown Speaker 55:34
Oh yeah, absolutely. I mean, I've watched with some of the other I've watched some successes that people are having on other systems and, you know, I, I, I listened to, I've listened to all the loop episodes, and I even considered at one point about trying to go back to the older pods and trying to loop right, I just, I couldn't, I couldn't get my head wrapped around it. And it seemed like just a lot of extra stress that I didn't feel like I could afford. So

Scott Benner 56:00
sounds like you're doing really well. That's what I wanted to ask you to is that, you know, we told him, you know, a really great story about, about being diagnosed and all that but a year later here on his first, you know, anniversary of his of his diagnosis. Yeah. How's he doing?

Unknown Speaker 56:16
He's doing great. And, and, you know, and I think I think this is, you know, one of the challenges that some faces I've seen, you know, his, one of his school nurses was, she was absolutely condescending to us, because we hadn't released him to do all of his own work, right, do all of his own blood checks, administer all of his own insulin, and I'm sitting here thinking that kids 11 years old, right, he he gets he has to do this the rest of his life, if I have to be the person to make the decisions right now that I'm okay with that. And, and honestly, Scott, he, he knows how to he has a device that he checks his blood sugar with what he needs to Yeah. Kevin's a type of child, he's, if he had to do it, he could do it. But he doesn't do as dex changes, and he doesn't do his pa changes. Could I teach them to do it? Sure, I could. But I'm somewhat of a little bit of a, I don't know, I kind of want to hold on to that responsibility of, of, I have to take, you know, I want to take care of him. And I want to help him out. I want him to learn and we express to him how important it is. But at the same time, I don't, I don't want to feel I don't make myself feel bad. Because he can't do it all on his own. And I refuse to let other people make me feel bad for that too. Cameron wants to be as normal as possible. He he doesn't. He didn't go back to school. And he didn't announce that he has type one. Maybe irresponsible. He didn't tell us coaches that he has type one. Because we have control. He is under control. We are with him all the time. We don't leave him at football practice. He he has this fear of not wanting he wants to be like everyone else. And there's been a couple of times at school where, you know, he's had a pot alert, and he's had a dexcom low go offer or high alert go off. And he's mortified when that happens, because he doesn't want the extra attention. He has a plan that, you know, he can take his phone out, and he can do whatever he needs to do during a school day. He won't do it. I bought them an apple watch so that he can see his blood sugar. So he didn't have to take his phone out to look at it. He just wants to be like everyone else. He doesn't want to be singled out. Do you think that that's

Scott Benner 58:28
sustainable? forever? Or do you think he's gonna have to get a little more comfortable with people seeing and I don't know that half is the right word. Like maybe he never will I listen, I've over the years, I've seen Coldplay with three or four kids who have type one diabetes. And I can tell no one knows. Like, I pick it up because I'm watching what's going on. But I'll say to call him like, you know that kids got diabetes, right? He's like, Yeah, I saw him do something. And I knew he goes, I don't think anybody else knows. And he's never said it that anybody? Yeah. And he's like, so I don't even I don't even talk to him about it. But I but that's, you know, Cole doesn't have diabetes, but he's grown up here. And he's like, I can see it. But it's kept very, very quiet. And he's like, there's He's like, I saw this one kid, check his blood sugar ones. And he's like, dad, he's playing with like a 220 blood sugar. And I'm like, a probably afraid it's gonna get low, and he's keeping it high. And that even made my son like, sad, dude. I mean, like, he's like, he doesn't need to do that. Right. And I was like, he doesn't, but he probably doesn't know how. And, you know, we eventually went out to dinner with that kid and his family and I spent like, three hours in a restaurant explaining everything to him. But he, we approached him like he never would have, you know, he wasn't he was us going along with it. So like, there's part of me that 100% understands exactly where you're coming from. And as an observer, I wonder how sustainable it is over a lifetime. But I also don't think that it'll stay that way. I think that as a As time passes, and as your son has more experiences, you know, one day he's gonna have to do something in public and nothing's gonna go wrong from that. And he'll be like, Alright, that wasn't too bad.

Unknown Speaker 1:00:12
Yeah, and I would say he doesn't. He's not afraid. Like, he'll go out and you know, rock his CGM on his, you know, on the back of his arm in the middle of summer heat. Yeah, that doesn't bother him at all. He'll test his blood sugar if he needs to. That's That's not it. There's just that there's that little piece of him from being around civil or being around friends that he just hasn't reached that level of comfort yet. And when he get there, sure, he will see as he gets more confident with his type one, he will I think he just, he doesn't want to be perceived as different

Scott Benner 1:00:44
than everyone else. And in this moment, there's no need for him to feel that way. And so I like so what you're doing is perfect. I mean, listen, Arden can swap her CGM and her pump all by herself. She doesn't need anybody's help. But still, when she does it, she's like, Hey, you want to help me with this? Because, you know, she's 15. And

Unknown Speaker 1:01:05
what the hell

Scott Benner 1:01:06
you don't I mean, like, it's, it's, it's not a, it's not a great thing to have to do. And it's nice that somebody has your back while you're doing it. It's you know, and if I'm, if someone's not around, she just does it herself. It's not a it's not a it's not like, Oh, my gosh, I can't change my pump. because no one's here.

Unknown Speaker 1:01:22
You know,

Scott Benner 1:01:25
I just think that there doesn't need to be a rush. To 1,000,000% independence.

Unknown Speaker 1:01:33
That's my take. And, you know, I, I've I've seen, you know, both are both sides of the argument. You know, one side is, you gotta you got to make it theirs, and you got to make it make it theirs right now. And I just, I haven't gotten there. I don't know why it can't be a blend. I don't

Scott Benner 1:01:50
know why everything in life is a zero sum. proposition like everybody does, that. It's always this or that. No one ever says a little bit of this and a little bit of that. Not so bad. You know, like we do it in sports, in our politics, the way we talk about our kids with diabetes, the way everyone wants everything to be a zero sum policy. And that just is, it's lazy. Really, you know, like, there's nuance, like, there's nothing wrong with living in the nuance a little bit.

Unknown Speaker 1:02:20
Yeah, I know, we're just we're trying to keep life as normal as we can write in, maybe it's our maybe it's our new normal, but you know, life for him is his life for him is not much different than what it was before. Other than you got to check your blood sugar every once in a while, you may have to go drink half a juice box or eat for gummy bears to keep your blood sugar up to an elevated level. Or you gotta you gotta raise your bazel up for an hour or you need a right. You know, you need a you need a correction. But for the most part, it's it's pretty normal.

Scott Benner 1:02:54
Yeah. I think that I think it sounds like you guys are well on your way to something great. So I couldn't find fault with what you're doing. I think it's, uh, I think it's personal. And I think it's, you know, your son, and you know, yourself. And, you know, as long as you're not playing scared, I think you're good. You know,

Unknown Speaker 1:03:13
yeah. And I and I think that's, you know, that's where our, that's our grateful This is to you is, you know, you gave us that you gave us that mentality to not be scared, right, or gave us the courage to not be scared. You're not going to get it right every time. And sometimes you just you have to deal with what's put in front of you. And that's maybe given a, you overcorrected. And maybe you got to give a little bit of juice. So you got to you got to have a free stack to get back back in range. I appreciate

Scott Benner 1:03:46
that. Thank you.

Unknown Speaker 1:03:47
And I and I think one of the biggest things that I have learned is my gosh, Lowe's, Lowe's for us, Lowe's are better than highs because when he gets high and he gets stuck, I mean, and you're sitting there and every year, you're laying in bed, and he's he's in the two hundreds and every you just you keep giving him you know, you you extend his or you run his bazel up and you give them a correction when you can and you just sit there and you look at it and it just doesn't move. It's so frustrating over Hey, man, you got to go eat for gummy bears, or you got to write have a couple of Smarties or you got to drink apple juice box. I would much rather be in that position. Although I don't really love the low alarms going off in the middle of the night because sometimes that just scares the heck out of me. But uh,

Scott Benner 1:04:33
I just said the Arden last night I was like, Listen, she had spent the better part of a day. She got her period right now. And usually during her period, she runs like fine, but she's been a little off for this period of time. Right? And yeah, so we had our bazel really jacked up the keeper at like 190 and as we got at the start coming down, I said okay, we You know, we've broken whatever dam has been holding us back here. And I said, there's going to be a moment where you're going to need to eat something. So I sent her a text. I was like, Listen, if you have a small snack right now, it's going to stop you from getting low. And she didn't respond right away. And I just responded to her. And I said, Listen, if you don't do this now, later, you're gonna have to eat more than you want to. I was like, so at 104, diagonal down, coming down from a 190 that's been stuck like that for, you know, a day. I'm like, this is it right here, like right here, like, do it right this second. And I recognize that that sucks. You know what I mean? But it's gonna happen anyway. It's gonna, it's just gonna be it's gonna be 20 minutes later, and you're gonna be 65. And you're gonna have to eat, and you're gonna get a little lower, and then it's gonna come back. I'm like, why not just just do it now, like, be ahead of it a little bit. And she actually, like, stopped what she was doing and came down. And I was like, oh, wow, that might have made sense to her. But I'm probably gonna have to say that to her a million more times before that becomes part of how she thinks. Because she's 15. And she's a kid. And Yep, she's learning, you know.

Unknown Speaker 1:06:11
And, and we had we had one the other night where we couldn't you know, Cameron was staying like one night, he was just stuck at one night, he would not move. And I decided this is the second time I've done this, I waited a little longer than I should have. And I just changed this pot, I just abandon that spot where it was, yeah, changes pod ranas bazel. We always run as bazel. As soon as we change this pod, we do 95% for an hour is kind of our mo is our rhythm. So we read at 95%. I gave him a correction. And he went, he dropped pretty darn fast. And it was it was good. And we caught it. And we didn't we didn't run it back up. But that was that was one thing I've learned too is don't don't sit on it and just wait for it to get better. If it's not getting better. Just change it out. Yeah,

Scott Benner 1:06:59
do something. Now I just did that with Arden's friend yesterday, I was like, I know your pumps, good for like, 10 more hours. I was like, but I think if you blow if you just dump it right now, I think you're gonna be okay. And sure enough, an hour later, she was back to where she wanted to be. And just wasn't quite getting her and so on the way she had to, you know, in the, in the 70, you know, hour or whatever it was of, you know, the time it had been on So, right. It's just, you know, it's all about insulin, I I say it a lot, I try to say it a lot when your pump site isn't acting the way you expect it to, you know, you can you can hang on a little bit. But once it's proven to you that this is the best that can do now you have to make a decision, you know, I mean, like, This site is not working the way I want it to anymore. What am I going to do next? And I always think of that as when the insulin stops reacting the way I know it should, then I start becoming suspect about that.

Unknown Speaker 1:07:56
Yeah, and those are, those are things that you only learn with confidence, or you only learn with time, you know, we're still we're learning lessons all the time. You know, we we've had a, we've had a Dexcom issue the last couple days. And we I did what she told me to do, I just I just calibrated it a few times and it gets settled down.

Scott Benner 1:08:15
Yeah, so beat it to submission. Did you?

Unknown Speaker 1:08:17
Somewhat Yes. The one before that we couldn't beat that one into submission. But we did beat this one into submission and in fairness to dex calm and Omni pod, I mean, they have been so good to us. I mean, I've read these, I read these things online about people saying, you know, how horrible their customer service is I Scott, I haven't had one bad experience. And I've called in a dozen pods. I've we've had, you know, plenty of CGM errors, not plenty. I mean, we've had, we always get 10 days. And we've we've had reasonably good luck. We've we've had a couple issues. But every time I mean, yesterday, there was a box that showed up that they overnighted us to new sensors, because we were having an issue. Yeah. And ami pods been nothing but great. I have nothing but good things to say about these people. They've just been nothing but fabulous to us.

Scott Benner 1:09:04
Yeah, I think it's a I especially now right now, while companies are moving their customer service back to people's houses. Basically. I like how someone's like I held forever today. And I'm like, yeah, did you hear about the quarantine? Like, yeah, what do you expect it that, you know, a company's like a magic entity and you'll somebody will jump off and be like, well, they should be prepared for this. Like, come on. You know, what do you mean? Like, like I should have, I should have a perfect though. contingency plan for the for the moment where the whole world has to go home and stay there like no one thought that was gonna happen, you know? And now what happened and I bet you next time there'll be a plan, you know, so no one's perfect.

Unknown Speaker 1:09:44
It was it was an hour and I think, you know, I knew it was gonna be a long wait. And I expected that so i i called Dexcom. And I put it on speakerphone. I went about my business for an hour, 40 minutes and the lady got on the phone and you know, she apologized for the way to say it's fine, you know, I mean, I expect Get that Listen, I'm gonna make it.

Scott Benner 1:10:01
I'll make a criticism at Dexcom right now, and I hope they listen to it. You guys have made a couple of bucks over the years, I'd like to see some more money put into that hold music, how's that? I can, I could sing that little tune in my head, I'll be able to sing that tune. And I don't spend time on it's just it's been for a decade now. It's that same little rhythm like somebody just think a couple bucks into changing the music up. I really appreciate it. That's my event. There's more

Unknown Speaker 1:10:28
if that's if that's not if that's not bad enough cameras endos. Hold music is the exact same. And when I was on the phone with Dexcom on hold the other day Cameron's like, you got to turn that off dad that music is horrible. It really is.

Scott Benner 1:10:41
I mean, honestly, I'm sure they're not thinking of it. You know what, I'll tell you what you want to know what a good company Dexcom is, hold on a second. I am gonna pull up an email here that I just got from Rick Doubleday the other day, you remember Rick came on the show? Oh, yeah. And we were just talking about things were going on. While I was talking to him. I told him that I was in the middle of, you know, I got the phone call from Dexcom about our reorder. And the guy told me that you know, after a benefits, investigation, art and stuff would come out. And I stopped at the end of the call and told the guy Hey, investigations, it's like a, it's a too harsh of a word. I'm like, there's a better word you should, you know, you should, you know, find a better way to say that now, okay. I told that guy, um, he has no power. He's the customer service guy. But, you know, I happen to be, you know, interviewing Rick the few days later, and I mentioned it to him. And I don't know, like, there's sometimes I say things and I'm like, no one's listening to me. You know what I mean? Like, I'm just talking out loud. But literally, two weeks after I interviewed Rick, I got this note from it says, and this is a personal conversation, but I don't think he'd mind. It's just this, Scott. I hope all as well. I don't have an update on this other thing you asked about. But I did want to let you know that we took your comments to heart on the term benefits investigation, we've updated the language to benefits update, it tested really well with customers appreciate the heads up brick double that. And so, you know, he could have I mean, he could have Yes, me to death and gotten off the phone. But he's like, Alright, somebody's saying something. It's a person, you know, I trust and, and that makes sense to me. And then they did something about it. And it probably didn't take that much effort to do something about it. But there are a lot of places who would have been like, Yeah, whatever. And, you know, just let it be. So now when somebody called, they won't be told that their benefits are being investigated, which can I'm not a real I don't know what the word is, like, I'm not a I'm not a soft person, like a lot doesn't impact me. Do you know what I mean? Like, I don't hear things. I'm not always running around, you know, virtue signaling and telling people you

Unknown Speaker 1:12:55
shouldn't be doing

Scott Benner 1:12:55
that. That doesn't sound right. I don't feel that way. But I heard benefits investigation, I thought, hmm, seems like you're looking into whether or not I've done something wrong or not. And, and that's it. So now it's benefits updates. The next time somebody tells you there have a benefits update. That's because, you know, somebody was paying attention to how you feel and I think they don't just pay attention to me. I think they pay attention to a lot of their customers. So I think feedback, feedbacks good.

Unknown Speaker 1:13:23
I think they do I mean, look at the look at the outage and how they responded to that.

Scott Benner 1:13:27
Yeah, yeah, there's a site now where you can go to literally track how dex comms what, what their status is, right? Which was not something that that existed until, until somebody said to them, hey, it would have been nice to, you know, to know how things were going and they boom, they fix it.

Unknown Speaker 1:13:46
The one thing that's really for us, the CGM. At least it's been so important. I mean, the last, we've had some issues the last I'd say three weeks, maybe off and on. And we've also had some good success too. But the one thing I've learned is when that CGM is not, it's not working right. You learn how important that CGM is. I mean, yeah. And so don't help me. Take away anything we have. Don't take our CGM, right. Yeah, I love Cameron probably wouldn't say that, because I don't know he would like to insulin injections, but petsy jams really been important to us now. I agree.

Scott Benner 1:14:21
All right. Well, Chris, I really appreciate you doing this. I know we had to put this off once and I appreciate you being flexible about it. Thank you.

Unknown Speaker 1:14:27
Now we we can under emphasize how important that that everything that we've learned has been to us. I

Scott Benner 1:14:35
appreciate really, we really appreciate it. I it's it really is my pleasure. I will not be humble for a second. That's probably making people laugh. But I I really do appreciate you saying that. And it means a lot to me that the podcast struck you and your family the way I intended. So I'm just very glad for you that it did.

Unknown Speaker 1:14:56
Yeah, we appreciate it a lot. I think without the podcast, we wouldn't be where We were we wouldn't have found Jenny. I mean, maybe we would, but it wouldn't. It wouldn't come. Let's

Scott Benner 1:15:03
just say, Chris, I fixed it for you. And it wasn't gonna work out the other way. I don't know why we're being so kind other opportunities and possibilities that we don't know exist that are not clearly I'm the best person. Like, let's just say that I think it's easier that way.

Unknown Speaker 1:15:18
I will. I will not fight you on.

Scott Benner 1:15:22
If anybody wants to leave an episode. No, I won't say that. I'm going to get a bunch of other people. But I would like a review that just says Scott's the best.

Unknown Speaker 1:15:30
Yeah. I haven't even asked you yet. I don't think you've even i don't i don't think i got got you to say the word at all during this podcast

Scott Benner 1:15:38
delightful. It's water, water. Oh. Well, I do have I have a bottle of water right in front of me. And I know, that's not how everyone says it. And, you know, you all enjoyed those rocky movies. So leave us alone. Okay. It's a it's how we talk here. I don't know what to tell you. I'll tell you what I do hear a lot from his people on the West Coast who used to live on the East Coast, that say that listening to the podcast makes them feel at home because of my atrocious grammar and other problems

Unknown Speaker 1:16:07
with speaking.

Scott Benner 1:16:08
It is true by the way the West Coast, especially California, and, and right up into Oregon, Washington State all in there, you really don't have an accent. It's just it's, it's, you know, it's the language sort of the way it's meant. You know, they mean, mentally. We've all bastardized that by being around for so long. But um, you know, listen, you just, your coast isn't close to where people came in from Europe. So

Unknown Speaker 1:16:36
you know,

Scott Benner 1:16:36
you got a bad whole 3000 some mile trip at a blended out a lot of people by the time they got to California.

Unknown Speaker 1:16:47
Well, hopefully, hopefully at some point, we'll all be traveling again. And it'd be great if we could get you out this way to, you know, teach them teach them or some of the things

Unknown Speaker 1:16:54
that we've learned and be very cool. I hope

Scott Benner 1:16:56
so I'm looking forward to it. Hi, Chris. Thanks so much. Hey, huge thank you to Chris for coming on the podcast and sharing the story that his family is experiencing with Type One Diabetes. Thanks also to Dexcom, makers of the G six continuous glucose monitor. And of course, the Omni pod, the tubeless insulin pump that my daughter has been wearing since she was four years old. Go to my Omni pod.com Ford slash juice box dexcom comm forward slash juice box links in your show notes links at Juicebox podcast.com. Hey, why not even hit up the other sponsors T one d exchange.org. forward slash juice box. Contour Next One comm forward slash juice box touched by type one.org g vote glucagon.com. forward slash juicebox. Support the sponsors support the show. During the episode, Chris mentioned the Facebook group. That's right there on Facebook, which makes total sense. That's where you would put a Facebook group, you're going to want to search for Juicebox Podcast type one diabetes, it's a private group, you have to answer a couple of brief questions about yourself just to make sure you're a real person that you can get in there and start having the experiences that Chris spoke about. Give a great diabetes practitioner, or are you looking for one, you should check out juice box docs.com. And when you get there, you're going to find a list of great doctors that have been submitted by listeners like you. You have a great doctor, go to that same link juicebox Doc's dot com and send it in to me. I'd love to add it. I'd love to add your great experience to the list so other people can find those experiences. And of course, if you're looking for those diabetes pro tip episodes, they begin at Episode 210 in your podcast app, but if it's too far to scroll back, go to diabetes pro tip.com to get a feeling for what episode you're looking for. It's also a great way to share the pro tips with other people. Thank you so much for listening. I genuinely appreciate your time. I'll be back soon with another episode.

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