#388 Playing Jax

Tori is a D Mom to a young child

Tori is Jax mom and she's here to talk about their life with type 1 diabetes. 

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Google Play/Android - iHeart Radio -  Radio Public, Amazon Alexa or their favorite podcast app.

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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 0:00
Hello friends, and welcome to Episode 388 of the Juicebox Podcast. Today, I'm going to let you listen in on a conversation that I had with torey. She's the mother of two kids. Both of them are very tiny. One of them has diabetes. And here's the thing about Tory, and she doesn't know this. So this is going to come as a surprise to her. Almost every day on Instagram, Tory shares one of her son's Dexcom grants with me. And she's gotten so good at managing his diabetes, that his graphs sort of helped me believe that the podcast works. So while it's possible that I might be your cheerleader, the one who's telling you you can do it, like go ahead, try something Tory sort of mind. It's the interaction that she provides. And honestly that all of you provide, that helped me believe that the podcast is valuable. It's not an echo chamber. If somebody's talking back. I always very much appreciate seeing Tori's message. And I don't think I've ever told her that. So Tory, thank you. And people should follow Tory she's Tory tackles too. On Instagram. It's got some cute kids. Please remember 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 or becoming bold with insulin.

This episode of The Juicebox Podcast is brought to you by the Contour Next One blood glucose meter. You're going to want to go to Contour Next one.com Ford slash juice box to check out the meter that Arden loves that I love. We all love it. It's the bomb diggity Contour Next One comm Ford slash juice box. Have you ever considered supporting people with type one diabetes by lending your information to research? super simple to do at T one d exchange.org. forward slash juice box. It's a quick and easy from your home right there on your phone simple way to advance Diabetes Research and support the podcast. I'll tell you a little more about it later in the show.

Tori 2:37
My name is Tori and I have two kids and my toddler is a type one diabetic.

Unknown Speaker 2:43
Okay.

Scott Benner 2:45
The toddlers how old

Tori 2:46
she is 21 months on March 2.

Scott Benner 2:49
Okay, we're not gonna use his name. So we're just gonna. We can if you want I just felt like you weren't.

Unknown Speaker 2:54
Oh, no, his name is Jack's.

Scott Benner 2:55
Oh, all right. Never mind that everybody. jack is a toddler. 21 months old. Yes. And he has had type one for how long?

Tori 3:04
He has had type one.

Do the math for me. I think nine months. Um, he was diagnosed in May right before he turned one a week before his birthday.

Scott Benner 3:16
May 2019.

Tori 3:18
Yes. 20. Yes.

Scott Benner 3:20
Pack ahead. Are you ready? Is it 2019? Or 2018? You're right.

Tori 3:23

2019. He was born June 2018. Just last year. Okay. Yeah.

Scott Benner 3:28
So we know each other because of Instagram.

Tori 3:32
Yes, I actually came across your podcast too, because the night that he was diagnosed, we'll go into the whole diagnosis story whenever but, um, I was sitting there crying in the hospital room and I someone told me to join a Facebook group I posted in there, what should I expect going into this with a baby with diabetes? And someone mentioned to follow your podcast. So literally day one, I found your podcast and it was actually quite funny how the training differed from what you were saying. And so I'm sitting there like with two totally different rules, I suppose of how to do things. And I was like, This is so confusing.

Scott Benner 4:19
Was it was it? Was it scary or confusing? Or like what did you think in the, in the in this first month?

Tori 4:25
Well, at first I wanted to go with what the hospital was saying. Because I was like, well, his kids 15 now. Yeah, she was diagnosed really young. But, uh, you know, he's he's a baby. Like, I can't Pre-Bolus that's not

Scott Benner 4:40
also I'm a stranger on a podcast. Listen, yeah,

real quick before you go anywhere. Is there a fan running behind your anything? It's noisy.

Tori 4:50
can make the air conditioner just kicked off?

Scott Benner 4:54
Yeah, you're not allowed to be comfortable while we're doing this.

Unknown Speaker 4:57
Can you hear me better now?

Scott Benner 5:00
Did the fan stop running on the air conditioner? If so, try speaking. Okay, well, we need you're wearing some sort of noise cancelling headphones. So when you don't speak, I don't hear anything. So I'm gonna have to wait till you're into a sentence to know for sure.

Tori 5:14
Okay, cool. Yeah,

Scott Benner 5:16
yeah, no, I've been able to hear you the whole time. Just there was a noise behind you. So we're gonna see if it's going away. And

Tori 5:22
I wanted to listen to the hospital telling me what to do. First and foremost, because they saw the kid they were listening to our day to day lives. And I was like, well, this is this is the hospital. They deal with us every single day. And I'm just going to go with what they're telling me for the first little bit. And we didn't have a Dexcom yet, obviously. So, um, I was doing the whole letting him eat, subtracting what he didn't eat, and then giving him his insulin. And then when we got the Dexcom, I saw how often really let

Scott Benner 5:58
Tory listen to sound still there. And I really want to talk to you without without it.

Tori 6:02
Yeah, so it's all just gonna get edited out.

Scott Benner 6:04
It's hard to know. Depends when I listened back to it What I find interesting. So let's figure out what's going on. What kind of headphones you're using? Apple? Are you? Are they wired or wireless? Why? Okay, you're on your phone. Is your phone on Wi Fi? Yes. Okay. Are you near any other cell phones or stuff like that? Yeah. Okay. Were you in a room with the door closed? Yes. Are you still there?

Tori 6:37
Yeah, I moved into a bedroom. Okay.

Scott Benner 6:39
Nothing on because you sound better now. So it's interesting. Okay. Cool. All right. So. So I'll recap and we'll keep rolling. So you're in the hospital. You you go on Facebook to ask for people just opinion of like, what should I expect? I've got this little baby who's got Type One Diabetes all sudden, you're younger mom, too. Is that right?

Tori 6:58
Yes. I'm 28

Scott Benner 7:00
Oh, I was trying to make you younger, and you like not really 28 you should have been like, 100%. I'm a young mom. I'm 28. So but but so but your first baby? And yeah, by the way, you look younger. So congratulations. Yeah. And so you get conflicting information. Right away. There's a guy talking to you through your Apple headphones, that saying one thing, the hospital saying another thing? Initially you think maybe the difference lies in the ages, his daughter's 15. My kids, almost the larva Still, this is probably the difference. But what did you find moving forward?

Tori 7:38
Well, so we get the ducks calm after three weeks. And, and they really rushed it because we had a trip to go to Seattle that we had planned like six months ahead of time. And so and we live in Atlanta, so I was like, Oh my god, we're gonna be traveling on a plane across the country with a diabetic baby. Like I don't I don't know. We know. I need that next column. Where you live in Atlanta? Yes. Am I seeing you in two days? You are. I'll have the newborn with me.

Scott Benner 8:06
Oh, that'll be lovely. This is This has never happened to me before. I feel like I have triplets. You know, but okay.

Tori 8:12
But yeah, and so with all this, I'm also 20 weeks pregnant when he's diagnosed. So I was very emotionally unstable. And so they rush to get the Dexcom to me as soon as possible and get like the it approved, because it's not going to prefer you know, babies right away. And so we get the Dexcom. And I go, Okay, so I've been listening to this podcast, I'm gonna, I'm gonna just do as a hospitalist told me before, but I'm going to see what happens now that we just put the sticks Come on him. And he spikes to like 400 after a meal. And we weren't checking his blood sugar until the following meal, because they were like, you also can't have carbs next. So cheese sticks and beef jerky. And that's it. So um,

Scott Benner 8:57
so you know, he was eating and then three or so hours you didn't really check blood sugar, you know, put counted the carbs, but the insulin and if he got hungry in between, he stayed with lower carb stuff.

Tori 9:08
Yeah, yeah. And so I go to feed him his lunch next. And you know, I've been watching the effects calm, and he starts to make a downward trend right before his meal. So that's where it was getting to a point where if he was 180 when I gave him his insulin, and then by the time his next meal, he was 160. I figured Oh, my goodness. Yeah, like, that's a perfect ratio. But he was going all the way up to 400 or so hanging out there for two to three hours, and then he'd come back down ever so

Unknown Speaker 9:44
gently and yeah,

Unknown Speaker 9:45
man. Right,

Scott Benner 9:46
right. Where you felt like oh my gosh, I must be doing really well with this. He's.

Tori 9:51
Yeah. And so I would call the hospital and tell them what was going on. And they're like, Oh, he's perfect. He's perfect. He's perfect. But then when we got the dexcom on I immediately take it into my own hands. I was like, No, we're gonna we're gonna start doing it Scott's way. And so ever since then it was we went to our first

Scott Benner 10:12
story. Don't jump ahead, you're doing really well. We're not telling them the first 10 minutes on while you're doing Hold on a second. needs a little showmanship here. Hold on a second. Let me let me say this to you. So when that's happening, right, like there's this giant leap up and then a giant leap down. And then they say, You're doing great. Did you think that can't be possible? We're not doing great, because look how high his blood sugar's thing for so long, or was there confliction in you? Like,

Tori 10:42
well, I just stopped calling.

Scott Benner 10:46
Okay, so my next my next question is, would you say now there's any honeymoon type of function happening? Are you? Are you completely?

Tori 10:55
I actually think that this week, like the last two weeks, we've gotten out of the honeymoon phase, I really truly think so. Because I've had to put so much more inflammation.

Scott Benner 11:06
So and so this is super interesting, man. Because, yeah, your graphs are. Your graphs make me feel like, I don't know what I'm doing?

Unknown Speaker 11:16
No.

Unknown Speaker 11:18
Hold on a second.

Scott Benner 11:20
And so I've always wondered with somebody who has newer diagnosis, such a baby, like, you know, as far as size and age, was there, some honeymooning going on and so you think there was, but yeah, it's gone away, and your results don't look any different?

Tori 11:36
Well, so basically, when we were hunting, meaning I would time it out really perfectly, where I would give him his insulin, and I knew that he would go low. And because I was being pretty bold with the insulin, um, I would make sure that he didn't have a spike. And then right when I knew that he probably go low, it would be snack time anyway, so he would get a fruit stack or pieces of Apple, and just like, you know, typical things that a toddler would eat. And he was able to eat that to fix a 75 blood sugar and bring it up to like, 100. So,

Scott Benner 12:14
so you were doing something that I think is, is brilliant, and I've done it myself, and I didn't just call it brilliant, because I've done it too. But I think it's it's a longer look at things, I guess, step back look. So you're, you're putting in enough insulin at a meal to not only keep the meal from spiking, but you're in some strange way with the tail of the insulin Pre-Bolus in his snack.

Unknown Speaker 12:37
Yeah,

Scott Benner 12:39
yeah. Yeah, that's good. Good job. Right? Because, because he's a little kid. And so he is snacky throughout the day. Mm

Unknown Speaker 12:47
hmm. Right?

Tori 12:48
Oh, for sure. I mean, he, the whole thing too, with them not wanting me to Pre-Bolus was because he is a baby. And a lot of toddlers have a problem with finishing a meal. But we did this thing called baby led weaning where I never did pre race with him. I literally just fed him what was on my table from six months on. And so he doesn't have texture issues, he can eat an adult sized meal so easily. So he gets his own meal, and we Pre-Bolus it at a restaurant, and he eats the whole thing. So it's very, I mean, hopefully that sticks because he's not verbal yet. And so he can't tell me what he wants and what he doesn't want. And I just kind of feed him and I go quick, you have to eat this i Pre-Bolus. Um, but he he's so good about food. So when the hospital was telling me like, No, you literally cannot Pre-Bolus until he can tell you like, I'm gonna eat half that sandwich. And I'm sitting there like, Okay, then

Scott Benner 13:43
even that seems strange, because my daughter, like you said, is 15 and she'll tell me sometimes super hungry, man, let's go for it. And then we put the insulin in and eight minutes in, she gets this look on her face. She's like, I'm just not as hungry as I thought I was. And, you know, so you find ways to trade insulin around and stuff like that, you know, I've definitely been in that situation where, you know, you put in enough insulin for 40 or 50 carbs. And it's, I don't know, four or five units when she was smaller. And her basal rate was like a unit an hour and you know, she'd have some of the food and then just be like, Oh, I can't do this anymore. And you're like, Alright, well, I'm just gonna shut your bazel off for an hour or two and see if trade just do what you just did. Right? Like trade the tail of the meal bolus for the for the bazel out in the future. Yeah, like how did you come? How did what led you to be able to think about the, the insulin like time travel for the lack of a better word, like like, because I'm always telling people, everything you're doing with insulin now is for later sometimes it's for five minutes, or 20 minutes later, sometimes it's for an hour later, sometimes two hours later. Nothing that's happening to you right now is happening because of the insulin that's going in right now. absorbed it really quickly and and to your credit, and I want to get too far away from this before. I say you've described yourself as very emotionally unstable. And I want to, I want to point out to people listening that emotionally unstable in first very. So when you're adding very to it, you're saying you're whacked out of your ever loving skull on the hormones, is that what was going on?

Tori 15:18
Yeah, I was very upset. But my little baby that had even turned a year old was, you know, diagnosed with something that was going to be for life. And when going through the pregnancy at 20 weeks pregnant, I also had a dog that was probably gonna have to put down soon, and that did happen. And my grandma was living with us who has Alzheimer's, and she passed away. So all dramatic things are happening while I'm growing a baby inside of me. And so when this happened, I'm a perfectionist. And I joke around that this was like, you know, life's a slap in my face, like, haha, perfectionist. Yeah. And so there was no other option to be better than to be perfect at this. And so obviously, you can't be perfect every day. But I tried my very best. Yeah. And so when, when they're telling me Oh, it's okay, if he's had 200. And he's staying there. Like, that's okay. He's a, he's a kid. listening to everything and reading when I was reading, I was like, that's actually not okay. Because why am I going to let him hang out at at 200 250. And that still be okay, and not that high. For, I don't know, 18 years of his life, like I, I'm not going to do that. And so while I, while he's under my roof, I want to make sure that he has all the same, you know, the same health as a non diabetic,

Scott Benner 16:55
right? And the best chance to sort of absorb the way of living that you're doing and hope that he takes it off with it. Yeah.

Tori 17:01
And then people are telling me Well, in order to have him be stable with blood sugars that a non diabetic would have, you have to go low carb, and I was like, well,

and I've ranted about this before, but

I don't want him to grow up with food issues, either, because he is diagnosed so young, that I don't want him being five years old at a birthday party having to eat, you know, stuff that I brought, when he can't, and he can't enjoy stuff that the other kids are eating. So it was such a big thing when I found your podcast that I was able to let him pretty much eat whatever everyone else is having, and, and just learn how to do it. Because one day he's going to be an adult at college, and I don't want him one afraid to tell me, Hey, I'm going out to eat with pizza, what do I need to do? And to not know how to do it themselves? Right.

Scott Benner 17:56
Now, listen, first of all, I think that, in my mind, the podcast is about using insulin when we're talking about management stuff. And so I don't care what you use the insulin on afterwards, it could be on a low carb lifestyle or a keto lifestyle, or just eating carbs or what anywhere in between, I just generally don't care. I just think that people should understand how it works so that they effect what they want to affect. I mean, they're, you know, I mean, listen, people have come on here who are low carb or keto, and they still talk about where they need their insulin for their fat and protein rises. And that means understanding how insulin works. And but at the same time, I understand what you're saying, like you don't want to, you're not trying to set up a scenario where your son is in a room with 25 people. And he's the odd man out although, yeah, like, that's just not cool. Absolutely should probably not say this, but my daughter grew up tangentially around a girl who was super fit, her whole family was really into fitness.

Unknown Speaker 18:58
And I don't

Scott Benner 18:59
find anything to be wrong with that. I wish I was fitter than I am. But when you stop and look back, she's a little weird. And she's probably she's probably not like, don't get me wrong. She's just, it's, and I'm not saying the difference bad. I'm just saying that they've gone over the ridge to the other side, like so I think there'd be a way to like, be fit and cool without being like somebody who, you know, if I get up at four o'clock in the morning, because I hear a sound outside, it's your mom running by in the dark with a little light on her head, like, you know what I mean? Like it's I don't know, like, I don't know, that might be judgmental. I'm just telling you that the way I've seen it shake out in front of them is that she's always more available to spotlight, if that makes sense. Like I'm joking in there and what I'm saying but this is the part I mean, like I don't care how fit they want to be again, I don't care if he keto or if you want to go for a run at four o'clock the morning doesn't mean anything but you might want to be prepared for the fact that the masses, whether they're right or wrong, We are going to look at your little side while you're doing that. And so you know, and so that's just the truth. It doesn't matter if it's right or wrong, it just is what's going on.

Tori 20:08
I have fitness background, and I used to do bodybuilding competitions. So that's also really funny because when they were teaching me about carbs and how insulin works, I already knew a lot about that not, you know, not the insulin itself, but how my body myself makes insulin. And so it was it was super interesting, because when he was diagnosed, people were messaging me like, of course, you would have a diabetic kid, you counted carbs, like 10 years long.

Scott Benner 20:36
Did you text them back? And you're like, this is not helpful or supportive at all?

Tori 20:39
Yeah, no, it was not helpful. I was like, oh, but like I said, my subconscious knew that I would have a diabetic child. So I've been training for it my whole life.

Unknown Speaker 20:52
So I was ready.

Scott Benner 20:54
So are you do you think that you're having the success you're having? Because he's such a good eater? Or do you think you could do it? Even if he was a little more pig? Like, can you imagine what you would do? In a scenario where you weren't certain what he was going to eat?

There is nothing like having a blood glucose meter that you can count on and trust. That's why I would like you to go to Contour. Next one.com forward slash juice box. And when you get there, take your time. And poke around. Sure, you're gonna see right away Arden's meter, the Contour, Next One meter, right there, big sticker on, it's like value pack, 40% more talks all about the test strips and everything. Here's some stuff that I can tell you from personal experience. The light at night is great. It's very holdable. It's just not a word, but it's small, but yet not difficult to hold on to is probably what I should have said instead of making the word pool holdable. Yeah, that's what I should have done. But you know what, let's just soldier on, shall we? Great light, very holdable, I'm sticking with that. test strips offers a second chance. So if you touch it in the blood, don't get it right the first time you can go back in without impacting the quality of the test. And speaking of the quality of the test, this thing is gold standard, accurate. Understand i'm saying is right up there. There's like good, better best, this one's best. Contour Next one.com forward slash juice box. This link is more than just a pretty face, there's real information here, you can go to the resource tab and find out about the contour diabetes app that by the way, pairs with your meter, you can find other products, there's other meters that contour makes you can looky loo through them if you want to. Personally, I like the next one. Contour. Next One. Also, it's possible you could be eligible for a free meter, that's under the meters and trips tab, there's even a choice card to see if you can save on test trips, there's a lot here, it's worth knowing, check it out. Even even even possible that you could buy this meter and the test trips, cash out of your pocket. And it might cost less than you're paying through your insurance company. I can't say for sure if that's gonna be you, but it's gonna be somebody. So head on over there and figure it out. One way or the other. This is the meter you want, in my opinion, Contour Next one.com Ford slash juicebox. I don't know if you remember the CEO of the T one D exchange was on the show a number of months ago, I had a very good feeling about him. And then they came back to me a few weeks or months later. I don't remember time, you know what I mean? And COVID I don't even know like what today is. But anyway, they came back to me sometime after that. And said, Hey, can you help us get the word out about our registry? And I was like, you want to buy an ad? And they're like, No, we don't buy ads. And I was like, ah, I don't know what to do that. They said, Well, what about we'll give you a little bit of money every time somebody signs up for the registry if they come through your link, and I thought, No, I'll try that. So I did T one d exchange.org. forward slash juicebox. Here's why I said yes to that. I know what your thing is for the money, but that's only part of it. The other part is there using this research to make real improvements in people's lives. People living with type one diabetes, and it's simple to do. It's 100% HIPAA compliant. It's absolutely anonymous. You can do it from your phone or your PC. I guess even if you had a Mac, you could do it from your Mac. In just a couple of minutes. I did it. Now you have to be from the US. So you either have to be the parent of a child with type one and live in the US you need to be an adult living with type one and before To us, but it's super easy to do. And it's worth it. A lot of goods come from it, I think a lot more coming. T one d exchange.org. forward slash juicebox. Contour Next one.com forward slash juice box. Links in your show notes. Links at Juicebox podcast.com. Okay, now let's find out the answer to this question. Can you imagine what you would do in a scenario where you weren't certain what he was going to eat?

Tori 25:27
Yeah, because we do have some days he's been dealing with typical toddler sickness for the last few months. I'm getting cold and coughs and so he's been a little bit on the pickier side. And so what I've done to combat any picky behavior is I have his fake foods, and every toddler has a safe food. And I will Pre-Bolus like half of what I think he's gonna eat. And if he does eat all of it, I'll do like a really aggressive, like post Bolus.

Scott Benner 26:05
No, no, I I this morning, right before you and I spoke Arden's blood sugar started drifting up. And I was like, Huh, what is this about? Because she was so super stable at 94. And I was just, this is working, I'd made a small adjustment to our baseline some the other day and I thought, Oh, my adjustment is so good. And you know, I was just like, right on, this is working. Then all of a sudden those 94 turned into like, one to one. And then she jerked. She was drifting off. And I'm like, What is happening? So finally, I texted her, I was like, Did you eat something? And she's like, she goes, Yeah, don't worry, I bolus for it. And I was like, Well, what was it and she goes, a Munchkin. And I was like, did you Pre-Bolus for and she goes, No, I was like, it's not enough insulin. So let's just put some more in, you know, and, and we're gonna find level here around 155 before she comes back down, which is cool, because she really tried something on her own to try to take care of it. That's I'm not like, I'm not. I'm not I don't that's great. Like, I don't care about that.

Tori 27:04
Yeah. I mean, that's probably been my biggest, my biggest like, fear grow. As he ages. I love that he's a baby. And I I've said before to people, I'm actually very happy that this happened, when it did. And, and it's crazy to think like, why would you want your baby be diagnosed, but, um, it just, I was talking to a friend of mine, whose kid I used to actually teach ice skating to. I used to be a figure skater. And he came over. Yeah, I was. And, and so she, her 10 year old kid is at the house. And she knows this all of axes here. will just the Dexcom and all of my, my needle stash. And he she's like, Oh my God, if I was diabetic, like, Oh my god, I would never eat again. Little 10 year old saying that. And I just thought to myself, like, Ha, that would be so traumatic to have, you know, him be so much older and him have to mentally go through that.

Scott Benner 28:09
And so I was like, these thoughts.

Tori 28:11
Yeah. And so I've thought to myself, like, wow, it's actually kind of a good thing. If he was going to get diagnosed at some point in this life that it got done when he was a baby. And it kind of scares me for when he gets older and has to manage it a little bit on his own when he's out and about and I'm listening to your podcast, I've kind of been like, okay, like Arden's doing awesome. She's, you know, she listens to her dad, like, baby ducks will do the same.

Scott Benner 28:39
Well, you know, it's, it's all you can sort of hope for, I think, it's sort of funny. I've been listening to a lot of physicists talking lately, so I'm gonna probably sound a little weirder than I usually do. But you know, we're all really just sort of really evolved ants, you know what I mean? Running around you know, one of you goes and gets the food one of you stays and builds the hill you know, some of you dig the holes like we all are doing like a different job. And we have life cycles. And you know, every once in a while you look down one of the answers going crazy right is running in 16 different directions and then it disappears away and probably wanders off and dies. And so there's just we're not all going to have the same level of success in life in in so many varied avenues of our life, right? Like you know, your health, your fitness, some of us are gonna lose our hair, some of us are going to do better at keeping a job. Some people are those people who are always an HR going I have a problem this is a problem you don't realize but you end up being a person who people go Yeah, we don't really want to hire you. And like and but you don't think that because on your side you have a problem. Like it's it's just we all end up being different types of people. Some people become addicts. Some people become addicts, not of their own. No issue like some people become alcoholics, some people never drink. There's all kinds of different ways people's lives are gonna go. And that's going to happen for people who have Type One Diabetes too. And so the best you can do is lay in Foundation, and tools, and reason. And then do your best to sort of Shepherd them towards that being something that's important in their life. Listen, I very well could end up at the end of this being the guy who had a podcast to help the whole bunch of people, and it didn't help his daughter. There's no, there's no way to know that, right? Like, there's absolutely no way to know if this is gonna work out for my kid any differently than it's gonna work out for somebody else's just because I understand it might not be the reason she understands it. I just don't I just do my best to see who she is, how she absorbs things, what she cares about where she gets lazy, all these things about her, and I'm just trying to take what I know and retrofit it to her. And that takes time. And that takes a lot of time. Right? I shouldn't I should not be listening to physicists talk about the nature of messing me up. Let me say something stupid instead? No, no. But the point is, is that some of you listening aren't going to end the way you want to end. But, but that doesn't mean you're not going to end the one the way you want to end because of the decisions you're making today. But that doesn't mean you can't change the decisions you're making and find a different ending. It's just more difficult. Boy, I don't know I there's part of me that wants to say it's more difficult when you're parenting because you're trying to infer what another person needs. And then there's also a part of me that thinks it's hard to do for yourself too. It's me, it's difficult one way or the other. But I think what's really interesting, what needs to be paid attention to when you're caregiving for someone else, is how often you take your feelings or interpretations of a moment and put them on someone else. Just because I feel like this in this moment. That must mean everyone around me is feeling this too. That's never right. You know what I mean? Like, like, see, you really have to want to dissect understanding the person across from you like, like, just, you know, it's, you think this is super important, this Pre-Bolus thing thing, and your kid just goes out, you know what, I don't care. And, and so, right. So and so you have to figure out, how do you make what you care about? Something they can care about? I don't know. It's just It's very, uh, I didn't think this was gonna go this way. Tory, I apologize. I just like Tories on Instagram. She's got this rad graph all the time. You You basically. So you know, when some people say like, Oh, yeah, people have flat graphs once in a while. That's the only time they share them. I feel like you send me a rock ass amazing graph. Almost every day.

Tori 33:02
He doesn't have spikes. I mean,

I today, for example, I'm looking at his graph right now. And he started his meal at 118 got ups like 150. And now he's back at 130. And you know, that's, that's high for us. nice and gentle.

Scott Benner 33:17
And listen to the second baby boy or girl? Boy, again, boy, you see? So here's what I don't understand. How is that kid's name? Not Scott, How did this get away from me? Exactly. I was counting on you being the one you know. You mean? Yeah, yeah.

Tori 33:32
After the first one that saved my first baby.

Scott Benner 33:36
I didn't save your baby. But I've just That's very kind of just saying like, I want to you eventually is going to be you know, I'm going to catch you in. What did you call yourself? very emotionally unstable. I'm going to catch someone in a very emotionally unstable moment. It's like the podcast guy. And and I'm going to get a kid named Scott one day, even though it's not a great name. But um, but anyway, I'm kidding. I had to make up for the physicists talk. And we're all just sort of evolved dance and etc.

Unknown Speaker 34:02
So yeah.

Scott Benner 34:04
Just say something stupid to keep this moving. Are you pumping or injecting? Or how do you get me

Tori 34:10
We are MDI stuff. Ah, see. And we had spoken right after he was diagnosed pretty much and I know you were telling me about the AMI pod, and I want to get it on him. As soon as possible. We're going through a little I'm trying to figure out a job change on that slide. And so we're not sure if we're wanting to spend all our money on our deductible just to start with a new insurance and then, you know, but I'm also very comfortable with them to get right now. And yeah, and so right now, it's just not been something that we are in dire need of um, I do see that we would have even more stable lines and it would become Even even better blood sugars, but right now he's doing really well. And he has been starting to pull on his Dexcom. And that's been very irritating. And I'm just afraid. Yeah, yeah. irritating to me. And so I don't want him to pull off the only pod so I'm just like a little little weary right now and being like discovering things on his body and his age.

Scott Benner 35:27
Hey, so what slow acting insulin are you using?

Tori 35:31
Basic bar? Ah,

Scott Benner 35:32
see people talk very well about those two new ones, which is what are they basically? I can't even say basic glar. We did. I did say it is the other one. To Seba. No. Yeah, there is that one. But I'm right. Those two that are kind of the newer fancier ones that don't. Yes, they seem to actually last more than 24 hours, not less than 24 hours.

Tori 35:54
Yeah, I believe so.

Scott Benner 35:57
Yeah. And so you're so you're getting a stability? A good base from your bazel to begin with? How much? Are we talking about? How much bazel does he get a day? two units?

Tori 36:12
He weighs 35 pounds.

Scott Benner 36:14
Yeah, he's a he's but are both your Is it fair to say that both of your kids are pleasingly plump. Is that a nice way of saying

Unknown Speaker 36:24
Yeah, yes.

Tori 36:27
Yeah, they both are like 99th percentile. Like, I mean, when that was the whole thing with Jack's like, we started seeing him lose weight. We were like, holy cow. Like this is a chubby baby like, this is something's wrong.

Scott Benner 36:40
Like he did someone put this kid on to CrossFit and I didn't realize it.

Tori 36:44
Yeah, like he was always eating. So I was like, I don't get it.

Scott Benner 36:47
How tall are you?

Tori 36:48
But yes, I am only five feet tall.

Scott Benner 36:51
Wait a minute. And how tall Jasmine?

Tori 36:55
Evelyn really skinny.

Scott Benner 36:57
Are the kids like 90 whatever percentile for height two or four? Wait.

Tori 37:02
Yeah, yeah. They're just big. Any, any giants

Scott Benner 37:05
in the extended family?

Tori 37:07
No, no.

That was that was a big baby, though. I was not. So I think that, okay, they're just big babies.

Scott Benner 37:17
Yeah, no kidding. That'd be interesting. I'm imagining, you know, when you're, you're like, 45. And you're out somewhere and the kids just like three feet taller than you and you just think you adopted them. You know what I mean?

Tori 37:29
Oh, for sure.

Scott Benner 37:30
Yeah. Oh, yeah. I have. I have a friend who's so short. She's just the shortest person I've ever met in my entire life, but her whole family is. And so with. Yeah,

Tori 37:39
my whole family is pretty sure. Yeah,

Scott Benner 37:41
that's uh, that's interesting. So how about diabetes in the background of either side? Do

Tori 37:46
Did you find any? No, buddy. Not a single person. I didn't even know about type one. I was bad. oblivia

Scott Benner 37:54
any other endo problems that you could find anything?

Tori 37:57
No, he was. He was so healthy. We had a perfect you know, hospital stay when he was born. He was born at 40 weeks and five days or six days. I was in do some four and five. So I was you know, full term. And then son. He was eight pounds, six ounces, very healthy. breastfed ate everything. No allergies, no health concerns and nothing. At 10 and a half months old, I noticed that he was a little constipated. And that was that was the sign that kind of started getting me thinking about things. So at a week before his birthday, I remember on a Monday or on a Friday, I called a pediatrician. I was like, Hey, can I get in the office on Monday? Cuz he hasn't pooped? So they're like, yeah, I mean, we can check and see if his stomach's hard and, and whatnot. So then I go in there and they go, Oh, he's just you know, a little blocked up I think just get him some prune juice and pure and puree now mind you, I'd never given this kid juice or even pureed food. So this was what got him into DK, I believe. So then

Scott Benner 39:18
you think the the the sugar from the burns is what pushed him away?

Tori 39:22
I think so. So well, that and on Tuesday, so the day after the appointment he was he weighed men on Monday, 29 pounds. The day after the appointment we went to do you have a Rita's Italian ice scenario? Let me know what that is. I love Rita's.

Scott Benner 39:39
So Rita's originated in Philadelphia, right where I grew up. My wife actually knew the family that started the company.

Tori 39:46
Yeah. So that morning, he'd been a little groggy and I remember telling my dad and like, I just needed to get out of this house. I'm way too pregnant to be dealing with this fussy baby. That's turning one Soon and I guess he's teething. But he's just he won't stop crying. So I'm going to go to the splash pad. It's really hot. It was a nice 90 something degrees and mid end of May. So we go to a splash pad and my baby's always been very, very happy. Just a hyper happy baby and he just wanted to stand there. He wasn't walking yet, but he was crawling and he would stand independently. So he's just standing there like, I don't like pie in the water and he just cried. So that I'm like, okay, whatever. We'll go to breeders and get some to Lottie and I'm giving him spoonfuls of that and I have a picture of me spoon feeding him in the stroller and looking back now I'm like, how did I not know? Because his eyes were sunken. And he had like these darks, super dark circles, and he just looked really emaciated. And I was like, something's wrong. I think he's just tired. Maybe he's not sleeping well. And then that night, he threw up is the first time ever if he had grown up. And so that goes, I don't I don't get it. Why is he? Why is he throwing out? What do you feed him? I was like, I mean, he had sugar today.

Scott Benner 41:17
Like how that immediately goes like, Hey, would you do to my kid? Do you give him some? Yeah. You're like, I did give him sugar. I actually gave him like soft serve mixed with water ice. So

Unknown Speaker 41:27
yeah, I

Scott Benner 41:28
mean, if I'm being honest, I'm really pregnant. I wanted him to stop.

Tori 41:32
Yeah, I wanted to give him a nice little tree feed. I felt like the slicker and the ice like it would move his gums.

Scott Benner 41:39
You're the only one that has to be pregnant, or excuse me constipated. You're

Tori 41:43
like, yeah, I'm pregnant.

I'm mind you. We still like he had prune juice and his sippy cup, and he wouldn't drink it much. But he then he started to like, get super thirsty and wanting to drink all of it. And so I'm like, That's weird. You didn't like it earlier today. But then on Wednesday, I'm doing I'm sitting on the ground playing with him. And he crawls over to me and he starts breathing really, really heavy. So I call the pediatrician. I'm like, something's wrong. He's throwing up. He's breathing really heavy. And he's very lethargic. And he doesn't even want to crawl now. And he just wants to sleep all day. And so she's like, Okay, come back tomorrow. And we'll see what's going on. And they didn't actually wait a minute or anything they just said. Let's have you scheduled to go to a gastroenterologist at Children's Hospital on Friday. So now we've gone Monday through Friday. With this, you know, baby that still hasn't pooped. He's now getting way sicker. And Friday morning at the gastro they weigh him. And he is and mind you like all throughout those. When Tuesday, Wednesday, Thursday, Friday morning. He's throwing up everything he eats. And so we're getting very concerned. And he goes, Well, there's nothing blocked in there. Let's weigh him. And he's 21 pounds. I lost eight

Scott Benner 43:09
pounds.

Tori 43:11
Yeah. And I remember holding him being like, this is this is scary. Like I was crying now. And unlike I don't know what's going on with my baby. And he goes, does he always look so his skin so modeled? And I was like no. And they go well, he's very, he looks very hydrated. I said, Well, that's impossible. He's always drinking water. And he's always being like he pees through snipers nonstop. So he's like, you just looked at me. At that point.

Scott Benner 43:38
Can I ask you do you have the it's a recent thing. So you might have the memory? Did it? Was there ever a voice in your head that thought my kid is dying? Or did you did you actually think that?

Tori 43:52
Yeah, on like Thursday, because he was just falling asleep in the highchair. I was feeding him some more Korean puree. Nothing ever said diabetes. I just thought he was dying. And so on that Thursday, I remember feeding him and he just fell asleep eating. And I walked over to my husband and he was like, um, I think we need to go to the hospital. And he was and he's very, no, no, no, he's fine. He just has a stomach. And I'm like, this is not a stomach bug. And, and so he kept on trying to reassure me like, everything's fine. But we're going to the hospital, you know, we're going to go see the gastro, they're going to figure it out. And I was like, Okay, well, that whole night, that Thursday night, he was just waking up full of pee full of thermoweb. And I was like, I don't get it. So then Friday morning. They tell us he's very dehydrated, and you need to go next door and get good the emergency room and get hooked up with IV fluids. So now we're like getting the runaround and we're like, oh my god. Like, what are you gonna find out what's wrong? And so I'm like, I'm not leaving this hospital until we know exactly why he's not having a bowel movement. And why he's, you know, so dehydrated, so to speak, because I didn't think he was dehydrated. Like first time Mom, I didn't realize this scan wasn't supposed to be modeled all the sudden. So then we get hooked up with the emergency room and they're trying to find a vein and his veins keep collapsing because he's so dehydrated. And there they have the whole IV team, pinning him down, he's crying, then he's passing out and then he's crying some more. And we're crying. And someone rushes in after they did a blood test. And they go, either of you diabetic. And we just looked at each other. We're like, no. And they go, well, his blood sugar is 360. we're transferring up to 50 right now. And they didn't tell me. They didn't say it in a very, like, bedside manner. They were just like, he's pretty sexy. We're going to pick you up. Okay. And then he just runs out. And I was like, What?

Scott Benner 46:00
What does that mean? Quick? I'm sorry to do this. Because Arden's text me Never mind the abbreviations. nvm, right. Yeah, all right. Sorry. Just got old there for a second. Like, it's an N and there's a V, and I forgot, it feels like there should be an M in it. Sorry about that. That is stupidly, like my daughter's diagnosis. Like your details are different. But the the salient points are the same. And so I'm assuming for many, many people, but yours went on for a while, like you didn't know and you kept taking him to places and they were just like, Oh, you know this that this that? What's that? When you go back home right after the fight, you want another thing? And another thing that isn't correct. I don't like that's a weird feeling. Right? Like that. Like it's gonna be okay. Like person in charge said don't worry. And and Whoa, but everything in you is kind of yelling like, no worry, this is wrong. It just there's nothing right about it's fascinating that they didn't see that I mean, a nine pound weight loss for 30 pounds is a third of their body weight. And born that that, in general, you would think that would put a person right into a hospital for a battery of tests. On that doesn't make that mistake. It just, it's unmistakable that like that. That's what should happen. And I like that your husband recognized Hey, it's hospital time, but it's gonna be fine. It's interesting. Yeah, he went into like, hey, Tori, don't worry. Just because the guy who's never once wanted to go to the hospital thinks we should go to the hospital. That's not a reason to get upset. But he was panicked, obviously, if that's what that's what he was considering to. So veins are collapsing. Nothing's working. He's completely dehydrated. What was his blood sugar when they figured it out? You know?

Unknown Speaker 48:01
360?

Scott Benner 48:04
oddly, not that high. Unless, unless it's been 360. For how long? How long do you think that have been going on?

Tori 48:10
Well, his a one C at diagnosis was 11.9. Okay,

Scott Benner 48:15
so quite a while.

Tori 48:17
Yes. So I try and go back and I try not to like get myself worked up over it. But I try and go back in pictures and try and see when it might have started. And I just can't tell because he'd always been such a happy plump baby.

Scott Benner 48:33
possible to that his blood sugar was bouncing around, maybe it would jump up stay up for a while. And then it may be his you know, his pancreas would be like, you know, come back online for a little while, bring him back down. Because the one thing I don't know. And I wonder how we could find out but in a in a if you could get a healthy pancreas, BOD in the body of a healthy pancreas up to 360. And I don't know like somehow like turn off the pancreas for a little while bring it up to 360 let it stay stable there. When you turn the pancreas back on. How long would it take a healthy body to bring a 360 back to you know at because that really is what you're talking about? You're talking about a body that doesn't have diabetes, that all of a sudden has it and then all of a sudden doesn't have it again while this pancreas is sputtering you know, to its demise. And and that's just very um, that's a weird thought I've never had before. But that didn't mean like I went because maybe he would bounce and stay there for a few hours and then come right back to normal again. Like maybe there'd be no way for you to notice. Really?

Tori 49:40
Absolutely. I believe so too. Yeah, I don't know. He never had a healthy diet or an unhealthy diet either. So I was very I didn't feed him. A lot of you know, snacks. Um, it was I was that mom that was like, Oh no, my kid will never have juice. That's horrible. So then when he was diagnosed, I was like, Well, I mean, I think he'll drink juice. And it's like, Well,

Scott Benner 50:11
turns out he's very sweet. And most people like it Arden, you know, interestingly doesn't like sweet things. Yeah,

Tori 50:17
yeah. So Oh no. Now Jax loves them because it's a hot commodity, and

Scott Benner 50:23
you're able to turn them around pretty easily.

Tori 50:25
Yeah, now now. He's all about it.

Unknown Speaker 50:29
Okay,

Tori 50:30
so horrible. I can't even eat in front of him.

Scott Benner 50:33
Do you ever do wonder about the baby? Do you?

Tori 50:37
I do a lot. Because, yes, we did not have diabetes in either side of our family that we know of.

And so we're very

uneducated on like, what type one totally means. And when he's diagnosed before he's even a year old. I'm like, Well, what does that mean for my, my other baby that I'm having? So throughout this whole training period at the hospital, I'm going What about this one? in me? It's gonna. And so they're telling me the percentages and stuff and they're like, you might not even have anything to worry about what the next one? This is just, you know, an anomaly. And I'm just thinking to myself, but why one years old?

Scott Benner 51:24
Did you? Did you try to like buy like extended warranty on the back? Like, listen, I usually I don't buy the warranty. I just figured, like, if I dropped my iPhone, I'll buy another one. You know, I never dropped my phone. I'll be okay, but I'm gonna get it on this one. If you don't mind. Where do I

Unknown Speaker 51:41
sign up for?

Scott Benner 51:44
Now, it's it's the, it's the so early in life thing that's shocking. Oh, I can tell you that. In the middle of July of 2004, my wife and I had bought a house. Maybe two years prior, we lived in a condo we were we lived in an apartment. She got pregnant, we moved into a condo, the condo like appreciated out of nowhere. So we ran away and sold it really quickly and bought what I kind of lovingly referred to as this East house in my town. Like just it was the only one we could really afford, right. But it was on an acre of ground, which is which is incredibly uncommon in my town. So our goal was always just keep doing better. And one day, we'll knock that house over and we'll build another house on this piece of property. But in the meantime, we were making babies and trying to make money and you know, all the stuff you do. And we had gotten, you know, we made Arden on purpose in October so her birthday would be in the summer, you've probably heard me tell that story. So we've got a summertime baby. We're gonna do a summertime birthday party, and we get her a pony for not not like we didn't buy her a pony. We got a pony came to the house and gave pony rides all through the party that was outside. And we were ruining our lawn, and we didn't care. And we were just like, this is like we got a house. It's outside, we got a summer baby. Boom. So I have pictures in my head and on my computer of my daughter in a dress, looking really excited and kind of scared riding around on a pony in the backyard. And maybe a couple of weeks later, she's standing on a, you know, at a beach vacation. He looks like she looks like an extra on the walking dead. Like, she just it looks like somebody's greater skin, took the weight out of her face, found the way to take the life out of her eyes. She could barely lift her limbs or walk around. And she was like quite literally dying right in front of me like your son was and I never thought of it that way. I never looked at her and thought kid seems like she's dying. I just thought, um, it's weird. She's losing weight or she's tired or she's sick or all the reasonable things that bounced around in your head. But then once that's over, it is one of the very next thoughts you have once you've got the diagnosis of like, no, that's not fair. She's so young. Or you know that that shouldn't happen to a young person, but stuff like that happens to people of all ages.

Unknown Speaker 54:28
Absolutely.

Scott Benner 54:28
Yeah. And I agree with your your assertion by the way that you know, while a person who's diagnosed that your son's age, who doesn't receive the care that you're giving him, that might not be a great thing that he has diabetes at such a young age because then if there are complications, they're going to happen sooner in his life, but but but to your assertion that he might grow up very well, not knowing a difference, and therefore unlike the people who you met, you know Maybe won't have a horrible version. That's your hope like and that that's a reasonable hope. It really is. I think you're doing such a good job. It's fascinating. Okay, no, that's fascinating because like, I can't believe you're doing it but fascinating because of how many people I hear talk about. I have a baby. This is so difficult, you don't understand. And I'm like, No, I do understand because I had a baby a diabetes, too. But But like, not a not a, you know, not one that you were counting their age still in months, but pretty close. Like, so I know. I know what it's

Tori 55:33
like to to makes me even, like more afraid because I have a niece who is newly too and she is so choosy.

Unknown Speaker 55:46
Yeah. And I just could not

Tori 55:48
imagine if she was diagnosed at at the age she sat down.

Scott Benner 55:52
Right? I please Do you have any idea how many times like I tried to make like a joke out of the fact that Arden was getting a shot like I'm like a it'll be okay. Like big smile on my heart, my heart inside completely broken. And I'm just like, it's gonna be fine, big smile. And then she'd be like, look at me and laugh and then just take off.

Tori 56:11
You know, he's starting to do that. Now. You're starting to do that, where he sees me prepping the needles. And I I'll get the pen in my hand. I go, you ready? You ready to eat? And he he smirks at me? And then he runs around the Capitol quick. And I'm like, no, no. And I throw him over my shoulder and I pull the diaper down the shot on the butt. I'm like, well, when he you know, is too heavy to get thrown over my shoulder, you probably need to get that point

Scott Benner 56:35
there. So that hit so there by the way, is a is an experience. A lot of people don't have the one of like actually being able to hold a person while you're giving them a shot. Yeah. Or, you know, as Arden got bigger, there were times like she'd run up on the sofa. And like, you know, and she tried to get away and I'd like, you know, crawl after, and then I'd like get her. And then there's then then reality comes into play. You're holding a needle. And yeah, and they're swatting around like, like no, and and you think it for me, at least one of my most panicked thoughts was, what if the amount of insulin I intend to go into her isn't what goes in, what if she bumps the plunger while I'm trying to get near or she pulls away sooner. And now the next what I felt like was like, now the next three hours of my life are going to be wrapped in even more uncertainty. Because

Tori 57:28
so happens a few times. We were trying to train my parents to be able to do all the diabetes care while I was in the hospital with the baby, the new baby. And so I'm 38 weeks telling my parents, hey, you need to know what to do so that we can be at the hospital giving birth. Yeah. And and not being wondering, you know, hey, how much do I go for? And so so I have my mom, giving him a shot. And she first off doesn't take the cap off the needle and she like goes to give it to them and like what are you doing? And and now now I'm holding taxes are like, you know, strong and and, and Jax is trying to whittle away from me and I'm like, take the cap off and she's like, okay, okay, am I gonna poke myself and I was like, take it off. And then she doesn't dial it. And I'm like, Oh my god, you have to dial it. She's like, You're making me nervous. But I was like,

Unknown Speaker 58:36
You're making me nervous.

Tori 58:37
You're making me extremely nervous because I'm gonna be giving birth and you're gonna be texting me. Hey, how do I do this?

Unknown Speaker 58:43
Look at the killer.

Tori 58:45
Yeah, I'm like, you have to listen to me. So I she finally got it. But then she took it out right after she did it. So then like a little bit squirts out. So and I'm like, now what you do? Yeah, you just did half a shot and I gave him like one unit. So I don't even know if he got anything. He's like sat there staring at the Dexcom like, Did anything go in nap Jackson's like, he like get some eggs here. So let's get any strawberries. Now,

Scott Benner 59:15
the cool thing about that experience that I had you had is that in the moment, it's ridiculous. And you know, frustrating. But But last night, so you guys listening? Haven't heard this yet? Or maybe you have, um, you know, I don't know, I record a lot of these things. So Arden has a friend named Jani, who's 15 and also has type one diabetes for six years. And Johnny's control was not great. She'd be over 400 a couple of times a day for extended periods of time, even though she had an insulin pump and a glucose monitor. And, and she was really trying to and that's the other thing that's really important. She was not passive. She was doing what she was told. So you'll hear this on her episode because I've been recording with her little bits at a time as we move forward. But I met with her one time over FaceTime, we made changes to her settings, got our blood sugar down, talk to her about Pre-Bolus saying, you know, didn't, I walked her through the steps it was, it was weird, it was almost like I was like giving the talk that I'm going to give on Saturday when you see me, except I would give one part of the talk. And then she'd go live a day. And then I'd give another part of the talk. And she'd go live a day. And we were sort of doing it like that. So anyway, in four weeks, four weeks, I'm going to her episode of go up before this, so people should go back and find it. In four weeks, her a one c needed to be tested again. So she had had an A one c done live for two months, spoke to me live for one more month had a one seat on again. The day I started talking to her, her blood sugar was no lie constantly over 250 frequently over 400. And she went from an 8981 C to a 6981 thing. He is so good at taking care of her diabetes, right? So it turns out that all the she was very willing to make the effort she just kept, you know, making the effort with the wrong with the wrong ideas. She was she was looking at multiplication and trying to apply Division Two it like it was just you know, she was just all in the you know, right church wrong pew. And so yesterday, and I'm following her DAX calm, but I never really pay attention to it, because she's just doing a really good job. And I'm just following it till we're done recording. So I have contacts more than anything while we're speaking. But she she has not needed my help in a long time in weeks. And I don't offer her any advice, usually. But last night, I finally looked, and her blood sugar had been over 304 hours. And so I just texted her I was like, hey, okay. And she said, I'm not feeling well. I mean, I said, you mean you're sick? She goes, I don't feel good. No, I don't feel good, because my blood sugar is high. And, and I'm just not used to this anymore. And previously, she talked about how great she felt now, and her focus was different, just that her attitude, like everything about her life had changed, you know, or just for the better. And so I said, Okay, and I was able to like in a split second, figure out what was going on and fix it. Because I've lived through that moment of like, Is there something there isn't there and like, I can finally see that there isn't without knowing. And so I just said to her, I'm like, you know, your your pump sites bad. I said, so she had described making a large bolus that didn't work. And I was like I said, change the pump, double your bazel for a couple of hours. Let's Bolus a little bit of insulin. And I think it took us about four more hours to get her back down to being level again. But but it's that experience that lets me see bad pump sites now. Do you know what I mean? Like Like,

I don't need to know what you did before. Exactly. To know if what's happening is what should be happening. I hope that makes sense. Right? So she said she put in seven units, where a lot of people would be like, Listen, I can't bolus more. I'm like, I get that we change the pump. But I can't bolus more because I put in seven units. I looked at like that seven units is not working. I don't I don't care about that seven years, I'm pretending that doesn't exist. And that most people would get involved in like, oh, there's insulin on board, I can't do anything. And then suddenly that 300 blood sugar would be go from a few hours to a day. And then it would just keep running and she'd go to sleep and it would go up and see how you get out of rhythm really simply. Anyway. Oh, yeah. Anyway, I get her down and I get her stable. And I told her I said I'm not going to text just like let's talk for a second. So we FaceTime. And I looked at her and I said I want you to remember something. Those 300 blood sugars, that doesn't happen to you anymore. So when so when it does, it's not you, it's something else, you have to start looking beyond you you made the right decisions. If the insulin went where it was supposed to go, this would not happen, right? And she's like, okay, and she looked at me and she's still 15 you know, and I'm like, this is not what happens to you anymore. Because what had happened was she saw her blood sugar go up and even though she had this great success for these four weeks, what she thought was okay, like she just got she was logged into it right away in two seconds again, like they're just I must just not be doing the right thing. And, and it was I was eye opening for her. And I think for me to see that happen to her how quickly she snapped back into believing. This is just my life. It was was really interesting. But anyway, I think you have to have those experiences. Your mom has to go through that so that you know you She better at it now your mother?

Tori 1:05:02
Yeah, well, so when, when I had the newborn, his name's Brolin and I had bro in. Jack's had been, he had 300 blood sugar's the day that Rowan was born. And I said, You must have not done basically this morning, you must have not dosed him right for his breakfast, something went wrong. And I'm sitting there holding my newborn at the hospital saying this. Well, he had hand foot mouth. Little did we know. And so he was sick. And they're like, I had to give him an insulin shot again at the hospital and like, they're like, well, we just gave him some insulin that morning. And I'm like, maybe it's more. So

Scott Benner 1:05:41
that's what Arden got right before she was diagnosed.

Tori 1:05:44
Oh, it's horrible. And so he didn't have a rash yet. But the next day, they call me and they go, Well, he has some, you know, a rash on his butt, and like around his mouth and on his hands. And then dad's home with him on Friday morning, he calls me and we're about to get discharged. And they go, he's like, well, that rash. It's, it's worse. And I'm like, oh my god. Well, so they took him to Florida to my uncle's. He has like a huge 30 acre lot on his home, his homes on 30 acres. And so he just got to run around and play. And they took care of the diabetes management. So well. They just had to kind of

Unknown Speaker 1:06:24
live get thrown into it. Yep.

Scott Benner 1:06:26
Yeah. Yeah, there's a person on line right now, who posted in the private Facebook group, and they're like, I don't understand I'm not having the same success as everybody else, then when you really stop and look, they hadn't been at it for very long. So I just said to him, like, Listen, it's not a great answer. But you're gonna have to do this a few times before you get it right. Like you don't just, I don't mean, it's not paint by numbers. It's not like,

Tori 1:06:47
I haven't been in it very long, either. Um, but I think having the strength to just like, let go of the fear around diabetes helps a lot.

Scott Benner 1:07:01
What was that one of the things that really moved you in the right direction is just not being afraid.

Tori 1:07:05
Yeah. Because he's a kid. Lowe's actually worked in our favor. Because he's always hungry. So when he goes to, you know, if he's coasting down at 7970 a, I'm like, perfect. Here's some fruit. Bite of my feet. Yeah.

Scott Benner 1:07:26
But for clarity, you're not constantly feeding lows. You're just sort of, right. Yeah, your graphs are way too smooth for that to be the truth.

Tori 1:07:35
Yeah, I got to a point where I wasn't afraid of that happened. And, and we don't have like, double arrows down. Unless I totally flipped on dinner. Um, but he, he's to a point now where I mean, if, if it's been three hours since he ate, and I want to give him something, I'm, I'm not afraid to give him a little bit of extra insulin, half a unit to a unit and let him eat a snack with carbs. And the hospital still to this day is very, three shots a day. That's it. Breakfast, lunch and dinner. I'm like,

Unknown Speaker 1:08:11
oh, what

Scott Benner 1:08:12
do they say to you for how you are doing things? Do they give you any trouble?

Tori 1:08:16
No, no. They asked me what is what are his ratios. And that happened maybe the the third month when we went again. And they saw just how well we're doing. And they're like, so what are you doing? I'm like, well, so his ratios are this but sometimes they're that if he's really activates this. And they're like, Okay,

Scott Benner 1:08:40
good. No, yeah, you're paying attention. It's uh, yeah, but it's also nice to hear that they didn't you know, because too many people report back that, you know, they have this the kind of success that you're talking about, and then doctors are like, no, you're using too much insulin. They take it away from you. Like, you know, yeah, I get scared of it.

Tori 1:08:56
Yeah. Anyway. Well, so because like I said, they they don't like me giving him extra shots for snacks and stuff. But I I made them aware that I'm watching the back phone all day long. And I'm he's always he's a growing baby. And he wants to eat and he's getting really tired of cheese sticks.

Scott Benner 1:09:18
Exactly. And it's and that's important. We don't bring that up enough Is this your children need to eat? You know, like they're trying to grow their bodies are trying to get bigger and if you're having to restrict certain foods or foods at all, because you're not able to manage the insulin well, then there's another day now you have a different problem is the kid you know, not saying is malnourished, but definitely not nourished the way you're you were hoping to or that you would have if you weren't worried about the insulin.

Tori 1:09:44
Absolutely. Yeah. That's so cool.

Scott Benner 1:09:46
I'm glad for you that the podcast was helpful. It really is nice.

Tori 1:09:50
And I mentioned at my last, his last endo appointment. They were telling me about the Atlanta summit and I said, Oh yeah, I definitely want to go I listened to Juicebox Podcast and they're like, oh, That makes sense.

So they were aware.

Scott Benner 1:10:04
So the hospital. So this happens more and more, which is really kind of kind. I was told recently by somebody that they went to their endos appointment. And the person just said, Listen, I just let me just ask you, do you listen to the Juicebox Podcast? And the woman said, Yes. Why? And she was, I can just tell by your graphs. And I was, I was so touched by that. I thought, that's really, that's really cool. You know,

Tori 1:10:31
they told me as his last appointment when we were discussing you. This is the best graph that I have ever seen. From one someone that's not been diagnosed more than a year and to just his age in general.

Scott Benner 1:10:47
So in seriousness, then, don't don't just say the podcast, but like, what do you attribute that to? Do you tribute it to knowledge? Or comfort? Or is it a blend? Like I want people who are listening? who are, who are healthcare professionals to understand what I believe, which is that if you tell people the right thing, it doesn't matter how early you tell them, but I want to know what impact before I let you go like, I want to know how, how it shaped you.

Tori 1:11:17
Like, what your podcast has done for me, just in general? Yeah, like, What does

Scott Benner 1:11:21
you know, what does the information like so so here's the thing, you really haven't been around diabetes that long. So he wouldn't know. There's a an old school idea that you don't tell people too much too soon, you get a you get a little bit of information, and then you get a little more in three months, then you get a tiny bit more than three months, and in a couple of years, then we can start talking about you know about and by then my contention is, what that builds is fear and a lot of psychological angst. And so it's hard to get you back from that, then I I'm a bigger fan of getting the information out in front with good explanation about how to use it. Not technical explanation or mathematical explanation, but like real like real world ways, because I even I sat next to a physician recently, who loves the podcast, and wants to move the information from the podcast to people at his hospital, and even doctors that are training at his hospital, which I was really overwhelmingly touched by. But still in that conversation, there was an assertion that the information that I'm sharing with people about how I manage my daughter, that's not something everybody can understand. And I don't I don't know if I agree with that or not.

Tori 1:12:38
Like I had to keep on listening. And and you had mentioned in a podcast that you just put up the other day like you just have to listen and listen and listen and something's gonna you know, pay you and i think i think it really helped me to want to live day to day and really look at the grass Dexcom but I need information from the get go. I need to know exactly what to do. I am very type A personality. There's like this big thing about like Enoch grams and I'm a type one in a gram. And

Scott Benner 1:13:19
Bruce past that. What the hell is that?

Tori 1:13:22
It's like personality. I'm on

Scott Benner 1:13:24
the internet. Don't worry. Hold on a second. Type. I found that already. Hold on. Oh, I see. The Nine intagram type descriptions reformer helper achiever, individualist investigator, loyalist enthusiast, challenger Peacemaker. Which one are you

Tori 1:13:44
a performer? So type one.

Scott Benner 1:13:46
I got it the rational idealistic type, principled, purposeful, self controlled and perfectionist. Whoo, I wonder which one of these you tell me about that one? Yeah. decide which one of these.

Tori 1:13:58
Yeah, so with with that personality when, when he was diagnosed, and I would see that the blood sugar is where I wanted it. And especially after I got the dexcom and I'm trying to figure out his ratios and the hospitals just telling me to hundreds, okay. 180s Okay. And, and I'm like, that's not okay. It's not and so I'm racking my brain around how do I get these ratios to where I want them to be? And by listening to your podcast, it's little bits of information from other people and what they do and how, how their day to day goes. It's one made me feel like there's

people going through the same thing that I'm going through and people that

had the same frustrations. Does that make it a little doable,

Scott Benner 1:14:52
either? Yeah. Okay.

Tori 1:14:54
For sure. And so I was like, there's like, just because he's a baby doesn't mean that I can't have a great alien. See. And so

I don't like to be frustrated. And

my husband would see me sitting there racking my brain, looking at every single graph and going through the clarity reports, and he's like, just it's diabetes, just get over it. Things are gonna get out of your control. Sometimes I was like, Well, no, no,

Scott Benner 1:15:24
no, they won't. And by the way, you're under my control. You don't even realize it.

Tori 1:15:29
Like, I tell you what, I'm not home, when to give him the insulin. And then as I'm watching, I say, Now feed him. And so like I do,

Scott Benner 1:15:36
I'm in bigger picture to not just the diabetes, but yeah, hey, listen, this, this intagram thing. I'm concerned that I might have multiple personalities, I'm alone. things is that is the Does that ever happen?

Tori 1:15:48
Yeah. No, it does. It does. You can be a couple different things. Okay. But there's like a primary one that you gravitate to best. So I would totally take a test

Scott Benner 1:15:59
because as the reformer, I am not a perfectionist. I am self controlled. I'm sometimes sometimes personal, purposeful. I'm actually a very principled person. But I am. But I have my limits. So I always tell people, I've definitely never said this here before I live my life under like, very basic rules. Like I don't I don't treat people the way I don't want to be treated. And I don't lie. If I can absolutely help it. That's those are pretty much my life rules. But now the helper caring, I am caring. Let's see, demonstrative. I'm super emotional, generous. I don't know people pleasing. I definitely am possessive. I don't know what that means exactly. Like of people or things I don't care to. I mean, I, the people around me that I care about, I want to be close the achiever pragmatic type, adaptive, excelling, driven, and image conscious. I'm not image conscious, which you'll see this weekend when I allow you to take a picture with me, and I look terrible in the photograph, and you're still allowed to keep but I'm driven about things I care about. And things like things I don't care about. I don't care about law. Am I adaptive? I don't know. individualist. traumatic. Oh, I'm so dramatic, self absorbed at times. And temperamental, super temperamental. I'm all of these things. I have a mental illness is what I'm learning here. Isolated, secretive. I'm not isolated or secretive, innovative. It's funny because of the podcast being innovative, but I don't think of myself as innovative, engaging, responsible. I'm responsible. I think I'm delightful. It's delightful, engaging the same thing. anxious and suspicious. Hmm. I'm not anxious. And I'm not suspicious. I know you people are out there trying to screw me. So don't think I'm scattered or distractible. I love to the enthusiasts. Now you guys should check this out. You can definitely distract me. And I'm not very versatile, spontaneous. I think I pretend to be spontaneous. That makes sense. I do it down here. self confidence. I project self confidence. But I don't personally feel self confident. I'm not decisive. I need to think things through from like, 9000 different angles. will fold no confrontational, less as I get older. And Peacemaker. agreeable or not agreeable? complacent. I'm not complacent, reassuring. I'm not necessarily Oh, so the peacemaker is Peacemaker for other people. Like how does your how does how you are impacted people around you? Is that kind of the idea that?

Tori 1:18:54
Yeah, I took it that way. Yeah.

Scott Benner 1:18:56
Yeah, you took it. So you didn't seem insane. You took it that way.

Tori 1:19:02
I mean, the cool thing about these is that you can take it with your partner and like, understand each other better, because when they do something like when I'm a perfectionist, next we like Well, that's just her just gonna stare at that clarity or for for days, and so she figures it

Scott Benner 1:19:18
out. How long have you been married?

Tori 1:19:20
We? Well, we we say that we're husband and wife, but we're getting married finally. All right.

Scott Benner 1:19:25
Don't worry about that. How long have you been together?

Tori 1:19:29
It'll be four years. Okay. Yeah.

Scott Benner 1:19:31
So when you're together longer, you might have this experience if I brought Kelly up here right now, and told her for instance, that I am. Let's see, hold on. Let's pick one that, you know, there was one

Unknown Speaker 1:19:46
how I

Scott Benner 1:19:46
know. Yeah, but no, if I if I said that I'm driven, exempt, for example, she would completely disagree with that. And she would not let me have my belief that I'm driven. She would stay here. beat out the idea from me that I'm driven. She's like, No, you're not. And then she'd give me examples of why not. And then I'd give her examples of why I am. And she'd say, Ah, don't argue. And so then she just she's, you know, she's a different view of me than other people do. Which I think I think is good. Sometimes it's grounding to not Yeah, somebody agree with you all the time. All right. Is there anything we have not said that you want to say?

Tori 1:20:25
Um, well, is a one C was 11.9. diagnosis and three months in, and having the dexcom for only two months, we brought it down to 6%.

Scott Benner 1:20:36
That's amazing. What is it now?

Tori 1:20:39
Is next I know, appointments next week, and I have a feeling it'll be there. 6% still, because we have been dealing with a lot of toddler sticky. Um, so the, you know, gas has been a little wonky. But I think it'll be around 5.7 to 6%. On sugar main, it tells me like it might be around 5.7. And the clarity report says 6%. So I mean, we've been really steady right around there. I think

Scott Benner 1:21:07
that's lovely. I also think it's amazing that people who listen to this podcast are like, you can hear in your voice, the disappointment of saying 6% just, I don't know, things have been going wrong. So

Tori 1:21:21
blood sugar, it's been like around 150 or a few days and

Scott Benner 1:21:27
Arden's last day one, see that they now they play that game that, you know, I don't think they do it with everybody, but they're like, what do you think it's gonna be? And I said, five, seven. And she goes, she goes, why? I said, we were five, five last time. And yeah, and I said, and I don't, I'm being genuine from it. I don't really see the difference between five, five and five, seven, I'm, I'm in that space. I'm more concerned about variability and like limiting spikes and lows and things like that.

Tori 1:21:53
Yes. And I was looking at that as well, and our standard deviations around 30.

Scott Benner 1:21:59
But the thing is, is when she said, Why do you think it's gone up? I said, God, we've had a lot of problems this time. And she laughed at me. She goes, so you've had a lot of problems, have you? And I said, Yes. And she goes, and you believe that you're a one hurry once he's gonna go up point two. And I was like, Yeah, but I think that, you can look at that and think of me and you as crazy. Or you can look at that and see it for what it is, which is that we're, I can speak for myself. I'm so confident in what I'm doing, then that I Arden's a one sees not going to just jump up if we continue to do what we do. And so we're talking about tighter tolerances, because that's where the tools we use live, you know what I mean? Like, I, there's there, it would be inconceivable of me, for me to believe that her agency could, for instance, go from five, seven, this time, to six, five next time, like I don't, yeah, that couldn't happen. Unless something catastrophic happened to our insulin delivery, or her health or something like that, like in a normal regular situation, it's not going to move around like that. And No, you don't. I mean, like, it's sort of like, when you get in a car with somebody who's been driving for 30 years, you're just like, this rides gonna be fine. Like, you know, like, they've just, they, this is how he does, you know, like this

Tori 1:23:22
happened, the hospital told me, they were like, well, you might not always have such a tight range, because he is going to keep growing, he's going to keep, you know, going through growth spurts, and eventually puberty. And I do understand that and right now we're in a very blissful stage. But with the honeymoon ending, we're on like, a one to 50 ratio just like a few months ago, I'm gonna get,

Scott Benner 1:23:44
I'm gonna tell you with your understanding of how the insulin works. I would say that, from a, from an emotional standpoint, I think that's good advice for you that it could fluctuate around, that's not gonna be for sure. And, and I will also tell you that on the hopeful side of my betting, I don't think that's gonna happen to you. So I think you know what you're doing. And so, so when insulin needs increase, I see it right away. Yeah. And you'll increase with it. What, that's what we did. What happens to most people is their insulin needs increase, and they spend a good three to six weeks really trying to pick the situation apart.

Tori 1:24:21
Yeah, no, it happened like like, two days, I saw that we weren't doing the same like we were giving the same dinner I some days, I'll get the same dinner and over and over again until I get it right. Do exactly what I did except add another unit. And so that's what I did. And so I I noticed that last night, it worked out in my favor, except he had like a little bit of a protein and fat spike three to four hours afterwards that went in and took down right away. And then this morning, for example, it was like a one to eight ratio. And I was like, that's because I didn't give him 10 extra cards. Like I would have and I just did an extra unit and, and I said, Well, Mom, here's a fruit pouch while I do this podcast, he goes low.

Unknown Speaker 1:25:10
He didn't

Tori 1:25:11
study at what a weight right now,

Scott Benner 1:25:12
that is great for people to hear you made me feel like I've let you go after this because I actually have to record another one today. But that what you just made me feel like was I've been watching for all mankind on Apple plus. And it's sort of a fictional retelling of the space race. And you made me feel like we that you were in the capsule, running a test. And you got outside of preference out of parameters. And you just were like, do it again, like to like with the with the same meal over and over again? You're like, that didn't go right. We'll do it again. tomorrow. We'll do it again tomorrow. And and it works. Like I mean, can't do everybody can't do exactly that. But yeah, but just the idea that you realized, like, I just there's something there's a small adjustment in here. Let me make it again. And then you figure it out. And then those adjustments work for other meals. Am I right about that?

Unknown Speaker 1:25:57
Oh, yeah, well, yeah.

Scott Benner 1:25:59
Okay, cool. All right. Sorry, listen, you're chatty. So obviously, we can do this forever. But

Unknown Speaker 1:26:05
I'm gonna go interview

Scott Benner 1:26:06
the hold on a second,

Unknown Speaker 1:26:09
I am gonna interview

Scott Benner 1:26:13
Rick Doubleday, he's the chief, something officer from Dexcom. And that'll actually be out tonight. So there's gonna be a an episode with him. And they got a guy from on the pod. And they're going to talk about the agreements, they all just signed together, about working together for the horizon closed loop system. And, and I guess the Dexcom guy will probably talk about the, the other companies that they have agreements with in place for G six and G seven for people to be continuing to develop, you know, closed loop algorithms for the different pumps. So cool stuff. All right. I really appreciate you doing this. Thank you so much for coming on.

Tori 1:26:54
Thank you. See you in two days. Yeah.

Unknown Speaker 1:26:56
Oh, that's right. Oh, I'll see you then. All right. All right.

Scott Benner 1:27:01
Little did I know that would be the last time I'd ever speak in public. Anyway. Oh, thanks so much to the Contour Next One blood glucose meter go to Contour Next one.com forward slash juice box to get that rockin meter. And of course the T one D exchange. Absolutely anonymous, super safe. HIPAA compliant. worth your time. T one d exchange.org. forward slash juice box. Guys, do you have a great doctor that you'd like to share with someone else? Or are you looking for one I am in the middle of building an amazing list at juice box docs.com you can take a doc or leave one just like that little Penny thing. You know, at the gas station. Take a penny leave a penny. This is the same thing except with doctors juicebox Doc's calm.

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