#1584 Tiger By the Tail

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Andrew, living with T1D for 31 years, and his wife Gina share their journey after their 3-year-old daughter’s diagnosis—while raising a toddler and expecting another baby.

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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
Here we are back together again, friends for another episode of The Juicebox podcast.

Andrew 0:15
My name is Andrew gears. I was diagnosed at the age of seven or eight in late April, our three year old daughter, Brooke, unfortunately, got diagnosed as well.

Scott Benner 0:27
If your loved one is newly diagnosed with type one diabetes, and you're seeking a clear, practical perspective, check out the bold beginning series on the Juicebox podcast. It's hosted by myself and Jenny Smith, an experienced diabetes educator with over 35 years of personal insight into type one, our series cuts through the medical jargon and delivers straightforward answers to your most pressing questions. You'll gain insight from real patients and caregivers and find practical advice to help you confidently navigate life with type one. You can start your journey informed and empowered with the Juicebox podcast, the bold beginning series and all of the collections in the Juicebox podcast are available in your audio app and at Juicebox podcast.com in the menu. Please don't forget 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 healthcare plan or becoming bold with insulin.

This episode of The Juicebox podcast is sponsored by Medtronic diabetes and their mini med 780 G system designed to help ease the burden of diabetes management, imagine fewer worries about Miss boluses or miscalculated carbs thanks to meal detection technology and automatic correction doses. Learn more and get started today at Medtronic diabetes.com/juicebox today's episode of The Juicebox podcast is sponsored by the contour next gen blood glucose meter. This is the meter that my daughter has on her person right now. It is incredibly accurate and waiting for you at contour next.com/juicebox this episode of The Juicebox podcast is sponsored by the twist a ID system powered by tide pool that features the twist loop algorithm, which you can target to a glucose level as low as 87 Learn more at twist.com/juicebox. That's twist with two eyes.com/juicebox. Get precision insulin delivery with a target range that you choose at twist.com/juicebox. That's t, w, i, i s t.com/juicebox,

Andrew 2:47
my name is Andrew gears. I was diagnosed at the age of seven or eight, so I've had that type one diabetes for 3132 years now, and about 1212, to 14 months ago, in late April, our three year old daughter, Brooke, she unfortunately got diagnosed as well, which kind of came as a shock to all of us.

Scott Benner 3:08
And Gina's here too, your wife. So Gina is Brooke, your only child.

Speaker 1 3:13
No, Brooke is our oldest. We have another child, Graham, who is two years old, and we have another baby on the way. Do any week now?

Scott Benner 3:23
Oh, I saw you on camera. I just thought you had a big lunch. But does that what's going on?

Speaker 1 3:28
No, no,

Scott Benner 3:30
I wasn't confused. Well, congratulations. Thank you. That's lovely. Do you know what you're having?

Speaker 1 3:36
No, we're going to be surprised with this one. I think it's our final so we have boy girls. So we figured this would be a good last hurrah to be surprised. Did you know

Scott Benner 3:45
The first two when they were coming? Yes, yes. So have you shared at all with Andrew? Like, does it feel similar to one of them or the other one the pregnancy?

Speaker 1 3:54
I'm thinking it's girl. He is thinking, I think more boy. But also he's got such a special relationship with Brooke, which will come out through our conversation, that I think he's afraid for it to be another girl and to split his, you know, and you're you have a daughter. So, I mean, the daddy daughter relationship is, is very strong.

Scott Benner 4:16
It's fun most of the time. Yeah, although I'll tell you Andrew, as they get older, they they push back. So

Andrew 4:22
I both. I have a co worker. She always says, I enjoyed these first 11 years, because then our son's name is Graham. She goes, Graham's gonna become your best friend. So soak up these first 11 years, because that pendulum swings pretty quickly and aggressively.

Scott Benner 4:34
My son and I make the I'm scared face at each other once in a while. But no, no, it's that's lovely. Congratulations. How long you guys been

Speaker 1 4:41
married? We've been married six years. Six years this August. Awesome.

Scott Benner 4:45
That's great. You guys, you got busy and got started making, making a family, huh?

Speaker 1 4:49
Yeah. Well, we got together in our 30s, and we lived, you know, in Chicago. That's where we met. That's where Brooke was born. And then we moved to Louisville, Kentucky. So, yeah, you know, we kind of got all the fun out of the way early on, and we were ready for family.

Scott Benner 5:09
I just want to say now that you've mentioned Kentucky that I saw on the internet, I think it was yesterday, somebody took a replica of the General Lee from the Dukes of Hazzard and jumped it through a square over a fountain in Kentucky. Is there any way you knew that that was happening? I don't know how big

Andrew 5:24
Kentucky is. I did only because, and I'll be shocked you, and if you say that you were aware of this, I got a like, an Instagram reel, or a couple co workers had shared a video, because I do some work in that area. It's in Somerset Kentucky, okay? And I know the exact location where they did that. So I had a good chuckle thinking, God, that would have been fantastic. I was out there watching that live, but that's that's about an hour and a half from us. I have

Scott Benner 5:47
to tell you, prior to me seeing that video yesterday, my only story about Kentucky was at a waffle house, but this was a much better story. Also, did you? Did you see the video the cameraman that just got out of the way at the end of

Andrew 5:57
it? I didn't see that part. I just saw him just completely take off, airborne through that blue fountain. And I thought, okay, that is like the Sunday

Scott Benner 6:05
it comes crashing down on the other side. The guy loses it. It starts heading to the left. And there's a guy on the side of the road with a camera on the street, and he is committed to getting as much of that as he can, because he grabs that camera, jumps out of the way the last second it's I would have been gone much quicker than him, is what I'm saying. But nevertheless, casualties, no, they looked like it went okay. I think one of the doors fell off, but other than that, so I'm gonna just bounce around the way this occurs to me. So, Gina, can you tell me a little bit about what you recall about your daughter's diagnosis?

Speaker 1 6:35
Yeah. So, I mean, I remember it like when she was born. I was traveling for work, going to Chicago, and I was in Chicago prior to Brooke's diagnosis, we had noticed some erratic behaviors from her, and I just kind of chalked it up to toddler threes. You know, they say terrible twos, but really it's like terrible threes, just tantrums, and, you know, they were just becoming really extreme, really aggressive, crying, hitting, just more so than I thought was maybe normal. You know, our nanny, who happened to at the time, be a type one diabetic as well, had asked me, you know, have you ever thought about checking Brooke's blood sugar? Or do you ever think that Brooke could be diagnosed with type one? And this is something Andrew and I honestly never talked about when we were having kids dating, the likelihood of our kids ever getting type one. So I remember telling her No, but I'll, you know, run it across Andrew. And I remember vividly having the conversation with Andrew, do you think that Brooke would ever get type one? And he shot it down immediately. Absolutely not. No. And that was kind of that we never talked about, like checking our blood sugar, nothing.

Scott Benner 8:00
Can I jump in and ask Andrew, did you shoot it down so quickly because you didn't want it to be true, or because you didn't think it was a

Andrew 8:06
possibility? No, I just never thought there was any chance. I and we'll get into this, I'm sure. But I think that's why the day of her diagnosis, I just, I mean, I was stopped and stuck like a deer in headlights, feeling so exposed and ignorant, because it had truly just never crossed my mind, not for a single second. You know, Gina even references that specific conversation in our kitchen where she said, you remember the one time I asked, like, hey, what do you think the odds are that any of our kids would have type one diabetes? And he said very quickly, like, oh, zero, yeah. No chance. You know the way the doctors had kind of explained how my diagnosis had occurred, which I'm sure we'll get into at some point, I just thought it was, you know, no hereditary component, a series of events, a possible sickness followed by some emotional stress. But I never that never crossed my mind when we talked about family, growing family, the last thing that I ever thought about was potential type one diabetes presenting itself in any of our children. Yeah,

Scott Benner 9:07
do either of you have other autoimmune issues in your family line or personally,

Speaker 1 9:11
Andrew's mom, Andrew's family has autoimmune his mom is celiac. She's got shogrims. His sister celiac. They both have hypothyroid. Her brother was celiac.

Scott Benner 9:28
You have type one. Do you have anything else, Andrew, besides type one?

Andrew 9:31
Not right now, but I'll be honest. You know, Brooke's diagnosis has made me think I'm much more adamant about annual blood tests, getting the comprehensive panel taken care of, but right now, just type one, and I'll be honest, I look at what my mom, sister and brother like, what their diets entail, and their strictness around intense celiac as well. And you know, I always look at it and say, like, Hey, I just have to give some insulin. I can still eat whatever I want, but as long as I exercise and. Give insulin. So everyone's got kind of their challenges, and you got to play the cards that you're dealt. But at the end of the day, that's that's something that's definitely top of mind nowadays. So just being aggressive and out in front with that, with Brooke over the years, and making sure I'm getting my annual blood work done, and you know, our son, Graham, and our third child that's to come here in the near future, just making sure that we're doing what we need to do to detect that early and often, I think, is of paramount importance

Scott Benner 10:26
for us now. Gina, there is there any autoimmune on your side of the family? No, nothing. No. IBS, eczema, anything?

Speaker 1 10:34
No. I mean, the kids is babies, like Graham right now has eczema, and Brooke has had some eczema, but like nothing, that's extreme. I mean,

Scott Benner 10:43
I'm interested in my one question before I move forward, is the the friend that was like saying to you, like, do you think there could be type one? Do you think they were trying to hint to you that they thought it was type one? Or do you think it was just like an actual wonderment of theirs? I wonder if that's a thing that could happen. No,

Speaker 1 10:57
our nanny, I think she was expressing her concern that her behavior seemed out of the norm, and she's here today. She's watching the kids right now, and she's honestly a godsend. Her name's Donna, and I think she was brought to us, you know, for honestly, this very reason, if not, and many others, but lucky to meet her, yeah. So I'm in Chicago, and Brooke is with Donna Graham. Is not even a year old. He's 11 months. And something happened in the morning where Brooke just had, like a knockout tantrum that just didn't warrant any kind of reaction that she was giving Donna, sure, and Donna just something in her was like, This doesn't seem right, and she took it upon herself. She knew she was overstepping, but she's like, I just, I can't she finger poked her, because Donna is the type one, and she finger pokes herself all the time, and the meter just registered high. Is

Scott Benner 12:01
it just random that Donna has type one diabetes? Yeah, yeah,

Speaker 1 12:04
yeah, huh? How cool. Yeah,

Scott Benner 12:07
it's crazy, yeah.

Speaker 1 12:08
So you know, her meter ran registered high. So she's like shaking. She calls my mother in law because she was afraid to call Andrew, overstepping. And then the possibility of sharing this news. And my mother in law was like, Did you wash your fingers? Wash your hands, to make sure that you know there's nothing sticky on there. Did it again? And I think it was either high or force something crazy. High. Donna

Scott Benner 12:37
said, this isn't my first day. I know what I'm doing, but I'll do it one more time. Right, right?

Speaker 1 12:40
Yeah. So then, you know, my mother in law was like, call Andrew. He's, you gotta call him. He's got to come home. So she made the call to Andrew, and then I, I get a call from Andrew. I think I've silenced him first, because I was in a meeting, and then he's like, call me back. And I was like, Oh, that's not great. And he's just kind of rambling and crying. And I'm like, what? And he just tells me, Brooke has diabetes. Oh,

Scott Benner 13:09
gosh, how did that, like, hit you? Did you believe it? At first,

Speaker 1 13:13
I was numb. I was really calm. I was really numb. I was shaking because I wanted to get the hell home. You know, I got to the airport right away. I got on a flight right away. I remember calling my mom, and this is what he told me, I get to the hospital. I just see my baby in the hospital bed, Andrew's crying, you know, he's like, uncontrollable. And it didn't really hit me until we were checked in at Children's and, you know, she started to, like, claw at the door, wanting to go home, and she just didn't want anybody touching her anymore. She didn't want any more finger pokes and and then I'm like, thinking to myself, this is our life now,

Scott Benner 14:03
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Andrew 16:30
And I get emotional now sure about it. Think all of the above. And I knew when Donna called us, or called me, I should say about an hour away from home, and, you know, she was getting a little long winded, and I just said, Hey, I, you know, do you mind spit it out? I feel like something's coming. And she said, you know, essentially, hey, when you left, as you could see, she was having terrible, a terrible tantrum. And what Gina had left out was we were on a family vacation in Florida, and the week prior to that, she'd send me videos. I flew back a week early to work, and they stayed down there for an extra week with Gina's parents, and she was sending me videos and said, you know, these are so abnormal. And of course, at this stage, she's eaten, you know, chocolate chip mini muffins for breakfast, you know, Skittles for lunch. You know, just normal stuff. So in that moment, I think there was a lot going on. I think first and foremost, I was thinking like, How in the hell did you miss the exact signs of her diagnosis that you had? Yeah,

Scott Benner 17:27
I wanted to ask you, do you know, I mean, you were young, do you remember anything about your own

Andrew 17:31
I remember two specific events. I remember going to the barman Bay. I think it was Barnum and Bailey, you know, the circus, yeah, when, when it used to be actual animals at them. And I remember drinking. I still have the cup at my parents house, but, you know, one of the extra large cup had a tiger tail, is the cup holder, and still at my parents house. But, you know, those are pretty large, and I was just downing drinks. I mean, Sprite after sprite after Sprite, then water after water. My mom wasn't a registered nurse. She's retired now, but for a few nights leading up to that, that circus, she told my dad, you know, I think he's got diabetes. He's up urinating, he's drinking so much, no bed wetting, nothing like that. But just, you know that the telltale signs that are present, but it's just hard for people to act on right until there's an actual diagnosis. So I remember that, and then I remember one day it's been too weak to go to school, and I remember the finger poke at the doctor's office. It was like five something, getting to the Children's Hospital, and then, you know, I was in there for, I think, about five nights, I want to say, with Brooke. Luckily we caught it early enough, where it was a one night stay at the hospital. It just felt like two weeks as I'm sure any parent who has a child with type one diabetes that that probably resonates with them. But, you know, in that moment, I just remember thinking number one, like, how, how in the world we were just cracking jokes about her bathroom usage. She was potty training. And then every 20 minutes she'd be on her little, you know, little toddler toilet filling the thing up, you know, that was the first thing that just really pissed me off. I was angry at myself. And then number two, when Donna had called No, just thought through all of, you know, the challenges and just yeah, you feel like some of their innocence is just kind of stripped and stolen, you know. And you look at a three year old and how did that happen, and why? And the mind is, you know, it's a powerful thing. You know, luckily, when Gina got there, she's always kind of been the rock, and she jumped to it. I was kind of frozen, stuck, you know, just letting my mind race a little bit. And like Gina had just mentioned, that first night in the hospital bed boy, when Brooke was kind of clawing at the door. And you know how regimented it is during the diagnosis period? Hey, here's her food. She has 30 minutes to eat. In 30 minutes, we're going to come back, take the food and give her a shot. And it was, you know, just the reality, like, wow, in the moments notice, like, things have changed very drastically, and this isn't temporary.

Scott Benner 19:57
So how was your experience growing up with. Have fun. I give my parents

Andrew 20:01
all the credit in the world. It wasn't a factor. I mean, I had the lows. I had the highs very early on. I remember in second grade, in order to do sleepovers and overnight camps for soccer and basketball, it taught me the importance of being able to kind of control your sugar, check your sugars, give insulin, give your shots. It was insulin and mph at the time. So, you know, my mom would roll it up in an aluminum foil label, everything, the notes on when to take it so it was present, that's for sure. But, you know, I didn't have an understanding around it. I still remember coming back from the hospital and going back to school. Yeah, you know, no one could eat or drink during class, but the teacher had juice boxes and peanut butter crackers in her drawer. And I remember that first day walking up there saying, I need another Juicebox and another pack of peanut butter crackers. And the teacher said, Hey, you're you're all out. I don't know. I don't know if that's the way it's supposed to be, but I just remember thinking like, how great is this? I can eat and drink in class, and no, no one else can, you know? So I'd say the first few months was learning, and then my mom saying, hey, probably breaking it down in more of layman's terms, so that an eight year old can understand right when that is designed. And the question I always ask myself is, could I feel a low blood sugar at that age? Because what I always tell Gina is our lives, and any, anyone who has a toddler or a baby, I just remember life becoming so much more independent when I could feel low coming on or a high that was hitting me. You know, your body just kind of tells you what's going on. And, you know, I always look at it during the rough patches, like in the middle of the night, when we can't sleep because all the sirens and the alarms are shooting off from her phone, Brooke phone, my phone, you know, you feel like you're in the middle of a war. Yeah, I just keep on saying like, we're we're getting there. You know, you see a three year old become a four year old, and the growth that takes place. And, you know, in my mind, I'm just thinking, we're in the thick of it right now. As anyone with a like, I said, a baby, a toddler, an infant, probably is, but once that individual's body can say, hey, I'm low, I'm high, your body wakes you up naturally. When you do go low in the middle of the night, that happens for you? Oh, gosh, yeah. I mean, I didn't use a CGM in a weird way. I remember listening to the podcast with, I think it was Noah Gray, the chiefs tight end, but where he talked about the blessing that he's been given with diabetes. And, you know, I chuckled at that at first, and I was thinking, like, boy, this guy is he's got more faith than I do. Let's put it that way. I looked at it like the one positive that has come from Brooks diagnosis is it has forced me to use updated technology. I always despise the CGM because the readings wouldn't be accurate with a finger poke. I'd go into exercise, the CGM would say I was 140 within 10 minutes, I was taking like a glucagon pack to get my sugar up to where I need it, and there's a 60 point differential. But you know, through Brooks diagnosis, I didn't want her to start wearing a CGM with a no on a three year old that patch takes up looks bigger, yeah, takes up an entire butt cheek or the back part of her arm. So, you know, in solidarity more than anything. But then through her getting it, it has been a blessing with, you know, control when my a 1c is finally where it should be, and as hers comes down, my comes down. So,

Scott Benner 23:06
yeah, let me ask you that, like, so I get that while you're growing up, your mom says, you know, hey, you can do anything. We're going to play sports. We're going to do a list. You just need to do these shots. When I tell you to you do that. But outcomes wise, what was your a 1c like, as a child and through, like, high school, into college. Oh, I'd have to

Andrew 23:23
take a look at that. I mean, even recently, I look at the last trend chart, because I took a screenshot to compare my chart with my results to Brooks. You know, I was consistently, I'd say the last few years, eight, one to eight, five, okay. I'd always tell myself, that's not bad, because the endocrines would say, oh, you know, pretty good. You should use advanced technology, closed loop systems. And I'd say, Yeah, thanks, but no thanks. And that was the end of it. So

Scott Benner 23:47
even to up to recently, you were an MDI, were using a pump. I've always

Andrew 23:51
used a pump, okay? And my interference said, Hey, man, you got a Ferrari, but you got cloth interior, roll up windows and no radio you gotta use,

Scott Benner 23:59
right? Let me ask Gina. Now he's sitting here telling this story about growing up and all this. Do you know any of that before Brooks diagnosed? Is that a thing that you guys actually spoke because it occurs to me that if you got married a little later in life, that might be a thing you don't talk about.

Speaker 1 24:15
So I remember his mom telling me the story of him getting diagnosed and just this little tough guy walking around the hospital with his, you know, his IV card, and just, you know, determined as hell, which is Andro, it always sounded like from the stories. I mean, yes, he had diabetes, but he was never deprived of anything. So in terms of food, like,

Scott Benner 24:43
yeah, and that was more, how you how she told the story, yeah, now that your kids had diabetes for how long? Just 18 months, yeah, since April. Yeah. Do you look back and wonder, where were all those other stories were? How come they didn't those stories didn't get

Speaker 1 24:57
told, you know, I mean, now. We share now we swap more stories, for sure. And you know, I give Anne so much credit because she didn't have the technology that we have. The fact that you wouldn't even know what your child's blood sugar was, and you were just always going in and finger poking. Imagine that, right? You know, is kind of crazy.

Scott Benner 25:21
Yeah, it's interesting how the technology changed everything. Yeah, prior to diagnosis of Brooke, if Andrew had a story about, like, a kid in school that said something about him, about diabetes, or a time he got really low, or, like, did you hear about any of that as a thing you knew and it just seemed like this anomalous thing, or is it something you didn't speak about. Today's episode is sponsored by Medtronic diabetes, who is making life with diabetes easier with the mini med 780 G system. The mini med 780 G automated insulin delivery system anticipates, adjusts and corrects every five minutes. Real world results show people achieving up to 80% time and range with recommended settings, without increasing lows. But of course, Individual results may vary. The 780 G works around the clock, so you can focus on what matters. Have you heard about Medtronic extended infusion set? It's the first and only infusion set labeled for up to a seven day wear. This feature is repeatedly asked for, and Medtronic has delivered. 97% of people using the 780 G reported that they could manage their diabetes without major disruptions of sleep. They felt more free to eat what they wanted, and they felt less stress with fewer alarms and alerts you can't beat that learn more about how you can spend less time and effort managing your diabetes by visiting Medtronic diabetes.com/juicebox

Speaker 1 26:48
No, so, I mean, while we were dating and everything, I remember, like, you know, we would have like, a night out of drinking. I would always get like, low blood sugar in the morning, and he would finger poke me in the morning just to see what it was, and he's like, Yeah, you're not low.

Scott Benner 27:05
You're fine. You're just hungry and hung over, right, yeah, right. I do

Speaker 1 27:09
remember vividly, though, a story he told me of when he was traveling and we were dating, where this was probably one of his worst lows and the scariest low he had. He was dreaming, and it was me in the dream telling him he has to wake up. You got to wake up, go to your backpack. And he was so low, he like, was able to manage to get to so when I hear that, I'm like, oh gosh. Like, yeah, you know, because he's never made it a big deal,

Scott Benner 27:39
and I'm sorry. I feel like this is important, this first marriage for both you, yes, yeah, yeah. So this was like, you guys were busy building careers and doing stuff like that, yeah, yeah. Okay. And when you're dating Gina, does it ever occur to you, like, if I'm marrying somebody with red hair, my kids might have red hair. If I'm marrying somebody with diabetes, they might have diabetes.

Speaker 1 28:00
I mean, I thought about it more, but to myself, like I never brought it up to him, because it was something he never, he never talked about. He never talked about his diabetes as like a deficiency. You know, it was never, it never held him back in any way. I mean, he's physically fit. He's an athlete. He played d1 soccer, yeah, it was never an issue, okay? I mean, he would have cocktails on our honeymoon. We went to Italy. He ate pasta, you know? I mean, so it never limited our experience. So

Scott Benner 28:36
looking back now with your your new life experiences, do you think he should have told you more? Is your level of understanding of diabetes prior to Brooke and after? What's the swing? Do you know what I mean? Like, oh,

Speaker 1 28:49
it's extreme. I mean, so when we were in the hospital, I had told the nurses and the educator, I'm like, talk to me like I don't know anything because I don't know anything. Like, I never understood carb counting. I mean, I still was like, not even understanding like, and I feel silly saying this now, but like, when you give insulin, it's because you're, you know, you're too high, not because you're low. And you eat because you're low. You know, I never even understood what he was doing.

Scott Benner 29:22
So Andrew, my two part question is, is, did you not tell her that stuff on purpose? Or were you not really that keyed in? Like, is this a situation that, like, after Brooks diagnosed, you learn so much that you look back at yourself and think, God, what was I doing before this? Or did you know and it just wasn't a thing you shared?

Andrew 29:38
No, I never concealed anything. I've shared this with Gina. I have learned more in the last 1415, months from her diagnosis than I have in the combined 3031, 32 years that I have had it because you're worried about her now, yeah, that's an understatement. Yeah, that's a given. So when I was growing up, I mean, it was different. And this is funny, because, like, my mom brought my diagnosis pamphlets from like 1992 thinking that they could be beneficial for Brooke. And you've talked about this on previous podcasts where, hey, if they're low, give them 15 grams, and wait 15 minutes if they're still low, give give them 15 with, you know, suggestions on insulin shots, because this was before technology was available, but the game has changed so much in terms of just resources and educational content that are out there. Finally, I always tell Gina this, I said I've learned more from the Juicebox podcast, and I sincerely mean this, than the 20 plus endocrine centers that I've gone to with all the different areas I've lived. And that's not a knock on any of them, but sure, I think traditionally, people just want to avoid hypoglycemia as much as possible, and that's it. And I think that was evident when you when we went in for Brooks first, you know, I don't know if it was three months or six months, but her follow up and her a 1c was like in the high eights. And they said, Oh, this is great, and she's in range 55 or 60% of the time. And I said, I know it can be better, like I'm seeing people on the Facebook group and on these podcasts that are achieving, you know, unbelievable numbers in the mid fives and low sixes with toddlers like this can be done. So I think it really just lit a fire under my rear end to making sure that, hey, I'm going to do everything in my power to make sure that she gets a head start with this where her a 1c is in great control. We develop those habits early on. We're definitely getting better. We haven't arrived, and I don't know if anyone ever truly does, because the disease state changes

Scott Benner 31:34
and flows too. Man, like sometimes you got it, and then the next month you're like, what happened? Do you know what your a 1c was before her diagnosis. Her a 1c or mine, yours before her diagnosis. Where were you settled in at 8.1 and what are you now? Five, seven? Wow, wow. That's crazy. Good for you. You

Andrew 31:51
know, I got an insulin pump, metronics. First one, it was like this intense indigo blue. My thought it was cool as a 13 year old and big old block. But, you know, that didn't, that didn't, that didn't have a closed loop system or anything, no really intelligent about it. It was just one large, massive insulin shock, for lack of better words, with a basal. But you know, ever since switching over, really understanding how a CGM works, again, I do ask myself, like, if I understood that it's not reading the blood, but it's reading the tissue. And if I understand that, there's usually a 10 to 15 minute delay, 15 minute delay, what I've stuck with that 10 years ago, when an endocrine was successful with getting me to initially trial it, you know, these are the things I'm glad I slowed down, and it was nice, you know, Gina is much more patient than I am. So really saying, hey, if this could benefit long term, we need to, you know, give it a try. And

Scott Benner 32:40
it would be nice if they would realize, like, Look, someone had to go first, right? Somebody had to make a CGM, and it was going to be what it was going to be, right? But there should have been some sort of plan in place to say, we're going to slap this thing on some people, and it's not going to be the magic that they expected to be. Like, I guess they didn't know. But like, now, in hindsight, there's so many stories, like, a bad CGM experience puts people off for like, a decade before they try it again. That's not uncommon, right? That story of yours if, like, Okay, I tried it, I didn't like it, or it was super inaccurate, or woke me up in the middle of the night and wanted me to calibrate. All that, whatever this story ends up being, there's a giant like, some people called that first Medtronic CGM they would like, playfully call it like a, you know, a harpoon. And then, yeah, that's not a playful thing to call something. Now, their new one, there's Templar one, which is, I think, just about out now, like looks like the rest of them, looks like a Dexcom, looks like a libre like little, tiny thing, you know, but, yeah, put you off for such a long time. So are you telling me that, like, when she's diagnosed? Do you think, Oh, my God, my a one season the eights. This is how I know how to take care of diabetes. This is what's going to happen to Brooke. Or were you still like, this is good. Like, they told me, I'm doing okay. No,

Andrew 33:50
I knew an eight was high average at best. Yeah, exactly, yeah. Air quotes over here, as I say, average. But you know, in hindsight, my overnight high, so the amount of time I'd wake up at 181 90. Now that I'm on a closed loop pump, you know, I wake up like 110 without doing anything, and I just think, like seven to nine hours, six to eight hours, however many hours that is. But that's at least 25% of the day where you can be in the low hundreds. That's a lot of time. You know what I

Scott Benner 34:17
mean? You're saying, even if you reach that 180 overnight, you don't wake up at it because it's pushing it down the whole time.

Andrew 34:23
No, I will. I've become a little obsessive with this now. Like, it's become a game where, like, okay, you know, where can I keep my three day average on my g7 or, like, on the tandem app, like, can I get it to 100% in range? So, like, if I start flirting with my high limit on my CGM, which, you know, again, even the simple trick on that episode, I think it was you and Jenny who did it, but where you talk about changing the preset high number, where, why 180 or 200 whatever it is, if you set it at 140 and you're heading in that direction, you know, you can kind of bump and nudge it in the right direction. So, you know, implementing stuff like that has worked. And then if I notice a trend, because a lack of extra. Size, or maybe more of like a starchy carby meal before bed, I'll set an alarm like, you know, if I'm, let's say 160 I give whatever the tandem suggests, maybe a few extra tenths of a unit. And then I'll set an alarm for two hours just to make sure that it's heading down. And if not, I'll kind of, you know, bridge Bolus a bit more to get it where it needs to be. But it's, you know, it's become almost like a competition, which, you know, that's why it's down to a five seven at this point.

Scott Benner 35:25
And Gina, does that surprise you about his personality? No, here's my question. Why do you think he didn't do it previously?

Speaker 1 35:31
I think, I mean, he's also very stubborn, and I think he had one bad experience or then, you know, he just gets turned off, and it's kind of very hard for him to revert, you know, to change his mind about something, you know, this kind of competition side that you're hearing of him. And this, you know, obsessive compulsive. He also has it with Brooke and her diabetes, yeah, which is a little hard for me, you know, as the mom again, I don't know what they go through, I don't feel what they go through. And this is where my experience, you know, is is different than his. You know, Andrew has played such a big part in caregiver of her diabetes that it's been a big adjustment for me, especially as a mom. You know who you know knows their children's cries, knows what they need. It's like mother's intuition. That is not at all the case right now. Why

Scott Benner 36:31
is it hard for you? Is it hard to see someone besides you know what to do for her? Yes, yeah, okay, absolutely. You liked it better when he was just a dummy over in the corner and you were, like, handling everything, yeah,

Speaker 1 36:42
you know, like, you know, I nursed her, you know. I mean, I did everything, and he, you know. I mean, he always had a special relationship with her, but now it's on a whole nother level, and I love that for them, you know, everyone tells him when we tell people, yeah, we have a daughter with type one. Oh, my husband's actually type one too. Oh, wow, that's so great. You know, that's great for her. He's like, Yeah, but no, I think yes, because he has already so much knowledge, and he's gained so much from your podcast, more than I have, because this is his language. This is what he knows. And he's also in the medical field, so he just gets the stuff little easier, a lot, yeah, a lot easier than I

Scott Benner 37:29
do. Okay, did you try bold beginnings? Yes,

Speaker 1 37:33
yes. And I do. I listen to it when I'm on the treadmill or taking the kids for a walk, and I love all of that, and that's been so helpful for me and understanding. But like, he knows how to go into the Omnipod and set the settings and change this and change that. Whereas I'm a little bit more like the doctor's telling us we need to kind of do this way, oh, he is very much more like, no, no, I'm pushing back. I don't like this. I know it can be better where I'm very thankful for him, because if he didn't have diabetes, I don't know if we would be like this.

Scott Benner 38:09
Yeah. How it would be for you? Have you ever had to help him out of a low Has he ever had a seizure or been unable to help himself?

Speaker 1 38:15
No, okay. He's never had to use a glucagon pen, but you have them? Andrew, yes, yeah.

Andrew 38:21
Since Brooks diagnosis, I started, I was gonna say you didn't have one before, right? There was a gap from 1996 to 2024 let's, let's call a spade a spade. But I, you know again, that I always wondered, like, why do people need this? When I get a low in the night, like, I'll wake up everybody and everybody is different. So like, I'm fortunate, my body was very in tune, especially with lows. I mean highs. Like, I used to be able to sit around probably mid twos, low twos all day long and not realize it. But the lows, my body was always very attentive and responsive. Only twice did I have episodes where and both happened after flights, which I'm still trying to crack the code on something happens on flights where, like, even if you're high and you give insulin, it doesn't want to come down on the flight, but when you land, like, 45 minutes later, it's like it hits with a double whammy. And those are the two times I had scary lows. I'd say those were dangerous lows. But luckily, no seizure, no medical attention needed. It was just putting as many Skittles and a Swedish Fish in my in my mouth as I could. And just, you know, chew, swallow, and just know that in the next 10 to 15 minutes, the sweating will stop, I'll be able to feel the fingertips all that sort of stuff. But wow. I mean, those were road the two incidents, both after airplanes, which now I'll put my my pump into activity mode. I tend to go in a little bit higher. I don't let it give auto corrections, so I'm starting to figure that out. But something with gravity or flights or the pressure in the cabin, yeah, I

Scott Benner 39:50
think the pressure, we have an episode somewhere, but the pressure can push the insulin through the tubing, and so you end up getting some insulin that's in the tube. So if you're on a tube pump, you could end up getting more insulin that way. That's

Andrew 40:03
probably exactly what it is, because I've always been on one,

Scott Benner 40:06
yeah, that could be that, for sure. There's a thing they don't tell you. One thing

Andrew 40:10
that Gina had said, I'll never forget this. She made a comment, she's been fantastic, like I I sympathize with anyone who walks into this situation without any kind of previous experience, because it's a lot and, you know, to your question earlier, I think you had said, like, hey, what you know, did you think about telling her? The reality is, like, no one really understands diabetes unless you you have it or you're intimately involved, whether it's your child or spouse or someone living with you, like, there's, there's so many ebbs and flows to your point that a lot of times, I just there wasn't a point in chatting about it, because the person typically confused type one to type two, or the conversation would turn to like, Well, do you eat a lot of candy?

Scott Benner 40:51
Yeah, yeah. So you didn't mind her knowing. You just thought, like, maybe there's not going to come a lot of it, of that conversation,

Andrew 40:58
yeah, that and it was never real. It's not like I hit it, like she saw my pump on, you know, our first date, hey, I'm gonna give insulin real quick, which, you know, it's, it was just part of me, and that's how I look at it. With Brooke is like her baseline will be having type one diabetes. She won't look back and say, like, I have a co worker who got diagnosed after he was in the Navy and got it while he was in the Navy. Yeah, that'll get you out of the Navy. So, you know, understanding what life was like before that or after it. Like, the good news is this will be her baseline. So I look at that as a positive

Scott Benner 41:29
tell me the difference between before you started listening to the podcast and now? Like, what do you do now that you didn't do before? Like, this is a big change. You moved your A, 1c almost three full points. So what would you tell people was the difference?

Speaker 1 41:45
Well, and I'll just chime in too, yeah, please. Brooks a 1c is 5.7 Okay, and she was like, probably, I think she was nine when she got diagnosed. So I mean, all of the things that Andrew has learned through your podcast. I mean, yes, our endo team has been lovely. I think we've now found a doctor that we will see consistently, but the tips and tricks have not been from them, okay, it's been from your podcast.

Scott Benner 42:16
Okay, yeah, yeah. And, but you know what I mean, Andrew, like data specifically? Yeah, here's my first question. Is, what you're doing now, more or less effort than before, less is the short answer. Okay? And is it because you're putting the effort into more valuable places?

Andrew 42:33
Yeah, I care. Finally, you know, I was never one of those who hit a rebellious day saying, Woe is me. I'm not going to live my life and not going to live my life and not care about this. I'd still give insulin, but I wasn't given insulin 10 to 15 minutes before a meal, right? If I was going high, I'd give a unit. I'm trying to think what I used to do with the Medtronic pump I had when I didn't use the smart feature, but I'd give it. I checked my blood profiles, 214 it would have insulin on board, but didn't make any auto correction. I just give, you know, to me, that's another two units, and if I started to go low, then I'd pop a yogurt pouch or some Swedish Fish, life saver, whatever it was in my bag. But I was Yo yo, and a lot more. So for me, I'd say, becoming a little more consistent with what I'm actually eating now too. And thanks to the CGM, you know, I realized the effect that certain foods have on me now. So like pasta. I'll eat pasta if I go to a restaurant and the pasta looks good, but for the most part, I steer clear of it, just because I can control the sugar the first maybe hour to maybe even three hours after I eat it. But middle of the night, I look at and I'm like, How did I go up to 275, yeah, you know, the closed loop still got me back down to like 121, 10, with due time. But I'm just starting to realize certain foods hit me a little bit differently. We talk about the complexities of the disease state. The hard part is, I was at dinner with my coworker. He had tuna sashimi and, like, some kind of steak. So to me, I wouldn't give anything. He gave two and a half units, and I said, for protein only. Said, Oh yeah, this will spike me throughout the night. So, you know, next thing I know, I'm experimenting with seafood and steak like, will this drive my sugar up? And it really didn't. But, you know, I share that story just because it's just different one person to the next. So, so for me, the pre bolusing was huge.

Scott Benner 44:16
Okay, not a thing somebody ever told you to do, or a thing you knew to do that you didn't do.

Andrew 44:20
I believe when I was younger, my mom, which would have come from the endocrine and said, like, let's try and do this 30 minutes before you eat. But I was eight, you know, 1012, I said, Okay, I'm just going to start eating because I'm hungry. And, you know, I think that was the end of it. I think as a parent, you don't want to restrict your kid too much. I totally get that, yeah, and that never changed. You know, through my teens, through the college years, through the post college years, still going out eating whatever that was, one small thing that the trend with the arrows, like understanding what an arrow straight up, an arrow to the right, like I'm more comfortable and very confident in bumping and nudging that down now and catching it with a gummy or two. Or a little bit of yogurt when I see it start to take off, maybe a little bit more aggressively than what I had hoped, and to what Gina had had said earlier, like, we do the same philosophy with Brooke now, like even today, she has a granola bar every day for breakfast, like some banana chocolate. Try and keep it as unprocessed as possible. We have it down to a near science, I'd say. But today, for some reason, she went up to 240 So Gina had text me and said, Hey, did you give her a different bar this morning? No, it's her usual one. And I look at the follow app and she's 252 60. So I said, Hey, do me a favor. Rage bolster with one unit. We'll catch it when it's on its way down. But you know, the same things that I've learned just from listening to the podcast we're putting into the actual play with Brooke now and again, she went from a 9192 I forget what it was, where they were saying, like, Oh, this is good to you know, hey, let's really be adamant. Let's figure out what's working what's not. Let's start trialing some things. Like, I know there's room for improvement, yeah, for a four year old like their their diets not as regimented as an adult. So trying as best as we can to apply what we can without we want her to be a normal toddler. There's no doubt we're never going to be the parents, and I applaud those that can do this, but she's not going to have, you know, greens and protein, like she's going to eat what her little brother's eating, or she's going to have cake at the birthday party, and we look at each thing now, as you know, not really a failure, but a lesson learned. So like now, we know when we do cake, maybe we need an extended Bolus, or maybe more more insulin upfront or with more lead time, but that was a painful lesson to learn. I'd get so frustrated and irritated at the erratic blood sugars early on. And you know, to Gina's point, she's trying to figure things out, right? She has no idea what this disease is, because she's never needed to know it.

Scott Benner 46:47
Can I ask you, Gina Andrew leaves for a week, goes away from work, how much of this can you accomplish? Or do you just go into like, does it become him helping remotely? Or do you just accept different outcomes?

Speaker 1 47:00
Oh, it's a little bit of both. So it's like, if I'm, you know, if Andrew's traveling for work, I mean, even, like, so now I'm fully staying at home with the kids, which has been great. But I tell them, like, you know, let me drive. Like, I know I'm not going to be yes, chime in. But like, let me do it a little bit. And if I make a mistake, I learn from it. We'll fix it. We definitely communicate together. He gets a little bit more upset. He would like me to or he would like her to stay pretty strict with what we know works, and we know not every day is going to be the same, even if she eats the same foods, okay, but at the end of the day, she's also four years old, and the granola bar she liked today, she's maybe gonna like tomorrow, right? So I just sometimes, I also have another kid here, a two year old, and I just sometimes I just don't have the fight in me. So

Scott Benner 47:58
Andrew, Does that scare you? Or are you up tight and you can't be flexible?

Andrew 48:02
Depends on the day you catch me, I guess. But I think I was out for a full week in January, and she ran it perfectly. Yeah, she does a fantastic job. Now, honestly, I'm more of a passenger. I mean, I still have the follow app up quite a bit, just kind of, kind of looking at it, because she Brooks doing summer camp. Now that was a little bit of a concern, because, you know, the swimming in the water phone doesn't project the sugars, and she still can't. I always ask her when she's low, hey, how do you feel? And she can't really articulate that yet. I think once she said, I feel fuzzy. So I was like, Okay, we're getting somewhere.

Speaker 1 48:38
She felt wiggly, wiggly.

Scott Benner 48:41
Yeah, I think I've heard wiggly before, good. I mean, she's so little, right? Like, yeah, the word she has her are pretty limited. What's her understanding of her situation?

Speaker 1 48:51
Oh my gosh, she is so aware. And it's almost like, and I hope this never changes, but it's, she's, you know, she'll tell people I I'm a diabetic, and this is my Omnipod, and this my Dexcom, and now I have one, and we just recently changed to one phone, so we are just, you know, graduated to the one phone. Oh, yeah, sure. Not using the controller anymore. Was a bit of a nightmare, because re learning the algorithm, and she was yo yoing, and we didn't have the auto correction turned off.

Scott Benner 49:26
Oh, she's on the pod five then, yeah, correct. Okay, and Andrew, you're using Moby. No, I use tandem tea slim too. Okay. Did you upgrade the new control IQ, the the new algorithm? Has that been different for you. I was

Andrew 49:41
Medtronic all my life. I was laughing when he said, the harpoon like first thing, when I saw the auto inserter similar to the Dexcom g7 where, like, it's, it's standardized. It's a uniform application each time. You know, I was used to for 34 years. Using that Harpoon, you got to angle it right with that long needle, where, if it hit, like. Man, if it hit the wrong spot, that thing would hurt. I switch over the tandem T slim too, because again, I was in that mindset of like, hey, if Brooke is using all this closed loop technology and our devices communicate, I I need to be able to understand that and experience it myself. So I did tan MT slim two. And then for the CGM, we both use the Dexcom g7 Yeah, because the g6 when we started that was, that was a bear. I remember you had to use the gun to insert it and then attach the adapter as well. Kind of pop

Scott Benner 50:30
it in, yeah? You pop the transmitter into the sensor bed. Yes,

Andrew 50:33
yes, but that the pop would freak her out. So we did okay, two or three tries with that, and then I had messaged the Facebook group out of curiosity, like, how are people doing this with toddlers? Our three or three and a half year old just freaks out, and it's, you know, the tears I have flashbacks to when we got back from the hospital and Gina had said, I don't know how we're going to do this. I literally just had to pin her down in the pantry to give her an insulin shot. Lo and behold, like the g7 something had changed with the software, where you could use it now with the PDM, but also have an iPhone for I forget what it was, but we switched the g7 early on, just because that one step application process was a game changer, and that pop that the device makes it was just so much more subtle and gentler. I think mentally for her to overcome that was significantly easier. Okay,

Scott Benner 51:23
it makes sense to me. Gino, yeah. Gene, what's your level of comfort? Like, seriously, like, Andrew just disappears. He poof, he's gone. You're good. You think you could do this forever?

Speaker 1 51:34
Yes, I just don't have, like, I mean, I know I would get it, but like, the the pushing back of like to the doctors, and I know this can be better. I mean, I know I would be able to take that on. That's my only thing, is just really understanding the technology of it, like the Omnipod, like nobody ever satis, like when we got her on the Omnipod, this was so frustrating. We got the transmitter phone, and then we find out you don't need that because you want to do the follow app like nothing was or maybe it was communicated to us, and we were just in such a fog of like, follow it. Well, yeah, but I'm like, What in the hell? Like, nobody is making this easy.

Scott Benner 52:22
You know, it definitely isn't easy. None of it's easy,

Speaker 1 52:26
you know. And like, we're buying these devices, and, I mean, you know, we're fortunate where we can but like, if somebody wasted their money on that, and that's like, a $200 expense like that was just so frustrating to me, or the Pre-Bolus seen and, you know, setting the target range, you know, your target range shouldn't be 300 like, that's absurd. It should be, you know, realistically, 160 nobody's ever talked to us

Scott Benner 52:53
about that. That's crazy. You're at a pretty made a reasonable size, like Children's Hospital and everything when you were diagnosed and all, and your endos seems to know what they're doing.

Andrew 53:03
Well, we never deal with we, I don't mean to interrupt, but we didn't really, we didn't really deal with endos, to be honest. We had a variety of care team personnel, but we had brought that up as a concern in our last appointment, so we have one now, but

Scott Benner 53:16
nurse practitioners, people, yeah, and

Speaker 1 53:18
your messaging through my chart, and they won't, you know, get on a call it, yeah, it just didn't. We didn't feel like we had individualized care for her, where we just had a doctor that was getting to know us and getting to know Brooke, yeah, and we expressed that. I mean, it got to the point where I had called Andrews endo from when he was diagnosed, is still practicing up in Cincinnati Children's, and I reached out to them, and I'm like, I'm going to make a damn appointment with him, like, if we need to go to Cincinnati every three months, that's whatever. Yeah, but I think we're on a better track now, okay, but I mean to answer your question, could I do this if Andrew wasn't in the picture? Absolutely do I think I would do I think I benefit having Andrew as my partner in doing this without a doubt.

Scott Benner 54:12
Yeah, no, obviously I just wanted to, yeah, kind of understand where you were, where you're at in the whole thing. Yeah, yeah, Andrew. So can I ask you, do you think you were motivated like to do better for yourself so that you knew what to do for Brooke. What's the thing that pushes you deeper than just, oh, my daughter got diagnosed, so I paid attention to like, what do you think the psychological component is of you saying I've been 8.1 my whole life? But that's not okay, and I can fix it like that.

Andrew 54:39
I think priorities change, obviously, especially as you know your family grows so, you know, trying to be as healthy as possible, just so there's no long term medical issues. And again, we're not talking about an A, 1c that was 12 or anything, but you know, with due time, like in a one season, the eights and nines, you're probably at higher risk. Less than someone who's running typically in the mid

Scott Benner 55:01
fives. Let's put it that way. So yeah, I'm gonna say definitely. So

Andrew 55:05
you know that was in my mind of like, okay, like, start embracing the technology and give it another shot. Why not? There's nothing to lose. And then I also look at it just solidarity is not the right word, but being able to show like, my daughter as she gets older, like you can have outstanding care and still do what you want to do, eat, what you want to eat, exercise as much as you want to exercise. You know, almost the role model thing comes into play. And just, you know, I want her to to see that it doesn't need to be restrictive in any way whatsoever. Yes, you're going to have the highs and you're going to be moody, you're going to have lows and feel very off and tired afterwards. But you know, outside of that, like it shouldn't restrict you in any way whatsoever. And I don't want her to grow up thinking that, you know, for some reason she can't do something because of fear that her sugar might be going high or low. So yeah, I'd say two things, really just the long term vision of making sure that I'm around as long as I possibly can be with no complications from it so I can, you know, continue to have fun with my kids. And,

Scott Benner 56:11
yeah, you know, your average a, 1c slightly over an eighth. Your average blood sugar is like 185 your average blood sugar now is probably more like 9092, something like there, like that, which is crazy. You cut in half. Yeah,

Andrew 56:24
yeah, absolutely crazy. And, you know, full transparency didn't really make too many changes to the diet. I mean,

Scott Benner 56:30
pre bolusing, stopping highs, if they happen, looking, looking, basically, I'm going to adopt you, Andrew. I'm pretty sure I'll send Arden to Gina. You mean, you're pre Boston your meals, and you're looking in again after you eat to make sure nothing's going crazy and and adjusting it if you do bingo, yeah, you got good settings, that's

Andrew 56:49
it, yeah? And then I changed my high alert. Personally, it's, it's 140 now, yeah,

Scott Benner 56:53
you said it was more like 200 before, right?

Andrew 56:56
Yeah, it's like 180 or 200 but still, like on the episode I listen to, you know, if it's if it's 180 I think it was you who said this, if it's 180 and you get those alerts like, why not at 140 when you can detect that it's starting to trend a little bit higher, you know, catching it 40 points lower than what it normally would trigger an alert for. I don't see there being much downside. So I did that. And then, you know, hopefully, at some point maybe, you know, we make that 131 20, the more episodes I listen to, and the more people I chat with that I've met. I don't know if that's the right word, but communicated with through the Facebook group like it is crazy how good some of these parents are with backtracking. I was sending Brooks auto logs when we couldn't figure out her Omnipod and she was running high. I was sending someone auto logs. She's not a medical professional. Never, never claimed to be, but her daughter's name was Kate, so hopefully, if she's listening, she understands the impact she had with us, finally understanding the Omnipod, but she could back math the auto events to figure out, you know, if her insulin sensitivity ratio needed to be tweaked, if her food to car or carb to insulin ratio at a specific time needed to be massaged a little bit. But it's fascinating like this, the group and the educational resources that are available through that

Scott Benner 58:11
so those beautiful diabetes dorks out there. Good job, Kate, that's awesome. Yeah,

Andrew 58:16
exactly. So it allows people like me to nerd out and, you know, try and try and get our daughter scare one step

Scott Benner 58:23
further. Yeah, I'm gonna say honestly, if Kate's listening, she should contact me. I'd have a conversation with her about that. That'd be awesome. I

Speaker 1 58:29
mean, it was amazing. I will tell you what he was showing me, and I was and then it was also kind of annoying, because nobody had ever told us to change her auto correct amounts, like it was set at point 05 and it's like, well, she's constantly getting these little bits of insulin. Why not just take her to point five?

Scott Benner 58:52
Yeah? Plus she's gaining weight and getting bigger, she goes right, like, that's probably happening all the time, changing her knees, yeah.

Andrew 58:58
Let me real quick. You know, I don't mean to interrupt you, but I just remember

Scott Benner 59:04
figure out if that's because you got married late and you're an adult when you got married, or if genius told you to apologize when she when you cut her off. But that's awesome when you do that every time. Yeah, yeah, also, and in fairness, Gina, you're like, nine months pregnant, so, yeah, you know what I mean? Like, I might pay for this in 30 minutes if I don't. No, no, no, you could get hit with a rolling pin or something. I don't know how it goes exactly in 2025 sorry,

Andrew 59:28
but when she because everyone raved about the Omnipod and when she got diagnosed, I wasn't even on board with the CGM because I wasn't wearing one yet. And again, the optics of that on a little three year old body, I'm like, I had a really hard time during diagnosis. I remember, I'm not a very anxious person. I have never had a panic attack, but that first night, when you know she's she's fighting us tooth and nail at 2am to check her blood sugar and crying, and you're their parent, like you should be a safety net, not this. Is this source of fear of what's going to happen. And I remember we checked Brooke's blood sugar, and it was like 92 and for the first time in days, I was like, hell yeah, she's finally in a normal range. And Gina said, that's fantastic. So we both kind of put our heads down and go to sleep, and I'm like, Wait, is that fantastic? She's had diabetes for three days. I have no idea how sensitive her body is to insulin, how much insulin is on board. Is she actually trending down rapidly? Because she'd be 50 in the next 30 minutes, and we're going to sleep through, you know, the mind starts racing. So in that moment, I realized we have no choice. We're going to have to get her on a CGM. And I said, but absolutely no to an insulin pump. The visual of that would just be a reminder, and I'm sure you're thinking a reminder of what I think it's really just just guilt of the hereditary.

Scott Benner 1:00:48
This is the part where I kind of want to finish up because, like, I've been waiting to ask you for a while, or do you feel are you? Do you feel shame? Do you feel guilty? Like, what's the feeling that comes with all this?

Andrew 1:00:59
I think ignorant would be the first word that, like, I just remember being stopped out of my my tracks and thinking that there was never really any kind of hereditary component. I thought when I got diagnosed it was a fluke, I swear, I think the doctor had said, like, it's probably from the combination of, yeah, I had, like, bronchitis, which turned into pneumonia, I want to say, but it was right after my grandpa had died, who I was close with, so they'd kind of served up like, you know, extreme sadness followed by an intense sickness might have attacked the beta cells and the pancreas, something that didn't make too much sense at the time. I still never heard that philosophy to this day, so who knows. But

Scott Benner 1:01:38
let me tell you this. I've heard people tell stories about having traumatic events and then having a diagnosis after but it's my expectation full well, like whether it's an illness or a traumatic event, that you did have markers for type one diabetes. It's not like somebody ran around the corner yelled boo and you got diabetes, right? Like you? Yeah, right. You may have had one to, you know, however many number of markers I'm going to tell you right now, with all that autoimmune on your side of the family, nothing about your diabetes or your daughter's diabetes surprises me, not at all. I talk to a lot of people like I could have bet 50 bucks on this one. You know what? I mean, it's not crazy at all, but, you know, fair enough. You get sick, you have a sadness, like, you know, like, that kind of stuff happens. You've got the markers already. Here you go. You have type one telling people that that doesn't mean that anybody else isn't going to get it. It's fair. Like, there's, it's still a relatively low, you know, percentage. Like, please don't hold me to this. I think, like, there's a one in, like, maybe, like, a certain percent chance for the regular population, and that chance goes up, but not even that significantly, if you have type, if your parent has type one. But I'm telling you, like, what are you Irish? German? Irish? Sure. Yeah, yeah, I could tell by all the celiac in your family there was Irish in you. Like, I mean, that's how many people I've spoken to like that doesn't surprise me at all.

Andrew 1:03:03
Yeah, that's crazy that there's, you know, you can tie it down at the Gina's

Scott Benner 1:03:07
Got nice dark hair. She might be the only thing holding this off. You know what? I mean, Gina, what are you Italian? Greek and Italian? Yeah, like, she might be helping a little bit. Who knows? But, you know, I mean, that's not a hard and fast rule or anything like that, obviously. But I speak to a ton of people and that part of the world, you see a little more autoimmune issues. And then, you know, come over here, and you know, that gets mixed your mom, your dad mix up there, and you know, there's a lot of autoimmune like, all that thyroid, all that celiac. I mean, it's coming Gina, what's what's the bathroom line look like after Thanksgiving dinner? Is it crazy?

Speaker 1 1:03:45
Well, you know, yeah, I mean, it's all gluten free at their house. So you

Scott Benner 1:03:49
ever said this out loud? Andrew, I've never heard more people talk about anything than your family. Have you ever heard that

Speaker 1 1:03:57
one? No, that's really funny.

Scott Benner 1:03:59
Andrew, you're not in therapy, right? No, I can tell, because you're telling, yeah, yeah, oh, don't worry, she's gonna keep encouraging you. Because when I asked if you were ashamed, you used a different word, but you are describing shame,

Andrew 1:04:11
yeah, I think I used guild that was going to be my, my second, you know, descriptor, yeah, you know, like, it's hard to not look at it that way, where, you know, and not just for Brooke's purpose, like I look at again, I keep coming back to the complexities of it, and just knowing the load that Gina was going to have to it landed on her plate, did nothing to deserve that. And I just thought through, you know, in that moment, I also think, like I realized, through the last 30 plus years of having it, like some of the struggles, the mood swings, just different events that had come up to realize, like, you know what? There have been some, some moments of heavy lifting with this, that that

Scott Benner 1:04:49
have sucked, yeah, oh, there's no doubt. Can I tell you something? My daughter's gonna be 21 in a couple of weeks. She's had diabetes and she was two. We're pretty good at this, right? Like, we're in a train. Transition period right now, Arden is getting older. She's doing things for herself. There's, you know, she's having her moments where she's figuring things out, and blood sugars are higher than they would be if, you know, if it was me doing it, but it's a transition period, and she still has an Arden still going to keep an A, 1c, in the sixes as a college student, taking care of herself like everybody's happy, don't get me, but there's still moments, you know what I mean, where, like, you say something, and she's, you know, being her own person, and not maybe being as, you know, quick to move on something, or taking something quite as seriously, or whatever it ends up being. And, you know, once in a while it comes up and you start talking about it. Well, my wife and I spent the day together yesterday. We were all over the place, going to different stores. We were just in the car a lot, and we were talking about it, I mean, and we've been at this now for, I mean, she's two, she's 21 minutes for 19 solid years, and we were both crying in the car by the time we got home, like, just trying to talk through how hard this is, you know, like I said to my wife last night. I'm like, I am so sorry. I was like, I would have never asked you out if I knew all this was gonna happen, but I felt like I did it to her just by asking her out. Like, you know what I mean? So I know how you feel. But also, if you ask my wife, she'd say there's a lot of autoimmune on her side of the family, so she feels guilty being dude, it's not your fault. Like you didn't you had no idea. And it's not like, you like, we're like, oh, Gina, let's have a baby. I'm going to try to make one with type one. Let me really concentrate here. Yeah, if it wasn't this, it would be something else, man. Like, everybody gets something, is the thing. I think I've, I think I've come to believe,

Speaker 1 1:06:33
I mean, with Andrew, like, there's never been one moment where I've been like, You caused this, yeah,

Scott Benner 1:06:39
but you feel like that though, Andrew, right?

Andrew 1:06:41
I do. And then, you know, also in conversation, when people make that comment, like, Oh, so you have it. And I'm thinking, correct, but we're talking about two different events here, right, right, exactly. And so,

Speaker 1 1:06:52
yeah, it's like, you always want to chime in and say, well, there. It doesn't mean that he has it, she was going to get it, or that Graham is going to get it. I mean, I will be very honest with you, though, I am terrified to figure out if Graham will have it or if our third will have it. And we did go down the path of T cell and doing the blood test. You know, in talking further with the endo team, Graham is two, so he can start the testing, but if he tests for two antibodies, there's nothing I can do for him, because he's not eligible for teas all yet. Not old enough. Yeah, I'd rather have ignorance right now. You know what I mean, like, just don't let me know anything yet. Yeah, that that thought is

Andrew 1:07:36
always lurking like Graham, I'll never forget this, like three weeks ago, started to have some pretty crazy outbursts. More More so than your, you know, traditional two year old boy, and he came up to me with three consecutive, like, yogurt, yogurts, whatever it is. And I'm thinking that's a lot of yogurt for a little body to be putting down. And he was still, he came with a fourth and was still freaking out, and, like, had a tantrum. And I'm thinking, oh no, you know there's, there's no way, and Gina wasn't home, and I thought, Hey buddy, I apologize in advance, but let me see your finger. And I finger poked him. And in that moment, like, again, I was like, everything from Brooks diagnosis came back to me, and I'm thinking, I, I don't know if we can go down this path again.

Scott Benner 1:08:19
Hey, listen, brush up on thyroid symptoms too, because, I mean, it's a fair bet with your family too. You know what I

Speaker 1 1:08:26
mean? Well, she did test for a marker for thyroid, but dead. Keep in

Scott Benner 1:08:31
mind, yep, going forward, that thyroid symptoms can come and your test results can still look quote, unquote, in range. So if you have thyroid symptoms and a TSH over 2.1 then it's time to start finding a forward thinking endocrinologist to manage your

Andrew 1:08:51
thyroid. Say that one more time. Those parameters thyroid

Scott Benner 1:08:55
symptoms, like, like, I don't know, Andrew, there's a ton of them, but off top my head like no matter how much you sleep, you can't get rested. Your hair is falling out. You're gaining weight for no reason. Your fingernails are brittle. You're having trouble regulating hot and cold. You're having mood swings that you can't explain, like those things and a TSH result over 2.1 if your TSH is like 3.5 and you go to the doctor and say, Hey, I'm having some thyroid symptoms, they see a 3.5 most doctors are going to say that's in range. It's not that, but interesting. I'm going to tell you right now. Go listen episode 413 and let that lady explain it to you. So, yeah, so keep an eye on that, especially with kids, it's hard to tell. I mean, I'm sure they're going to test her every time they do a blood test for thyroid. Moving forward, if they don't, they should be, yeah, they said that they are going to do it yearly, yeah. Well, every time they check her blood, I'd have her, have them do a thyroid also, just figure out where it is now, so that you can next time it goes, like, Did it go up? Did it go down? Like, is it swinging around? Crazy, anything. Mean that maybe draws your attention to it and for yourself too, Andrew, I mean, a lot of people on your side of the family also. I hate to say this, but because of the construction I told you about, we're gonna have to be done. I'm sorry, normally I'd go a little longer with you, but we, we stretched out a little bit, and I'm having a little bit of work done in my house. So it's about, it's about to get real Bangy in here. So I'll just let Rob leave the banging in. But let me let you finish. Is there anything that we didn't talk about that we should have, anything you feel like you left out?

Speaker 1 1:10:28
Not from, I mean, not from my perspective. No. I mean, I know that Andrew probably has a ton of questions about more diabetes and managing and things like that, so he'd probably love to email you.

Scott Benner 1:10:40
Don't email me. Andrew, no, I'm just kidding. You could come back on, or you can send me an email if you want, you know, like if you want to come back on sometime and talk, like, management stuff, we can absolutely do that

Andrew 1:10:49
too. Yeah, I look forward to that. I appreciate the time. And more than anything, we just appreciate the community and the people that have kind of become part of it, because that's that's helped us out, me too, in more ways than words can say. So we appreciate you. Man, no,

Scott Benner 1:11:01
I appreciate that you said that I spent the last week on a cruise ship with a bunch of listeners. Really, that's pretty cool. Yeah, we did a cruise. We just got back, about 100 of us on the cruise ship. It was awesome. Awesome enough we're gonna do it again next year. But,

Speaker 1 1:11:16
yeah, you've built a pretty incredible community. I will tell you that. Thank

Scott Benner 1:11:20
you. I appreciate it. But sitting there really getting to know people like that in person, over meals, over days, and then kind of coming together on Friday with Erica. Came on, Erica from, like, all my mental health stuff, and she came on the on the ship, virtually, and we almost ended up being like a group therapy session, and people were just baring their souls, sure, yeah. I'm telling you from like, parents of kids, parents of young kids, parents of teens, parents of adults, were there and up to I want to say that the oldest type one on the ship was 75 with us. Like, we had such an eclectic group of people, and they just went around the room and started talking, and every story was somehow really different and really same at the same at the same time, yeah, and I just watched one mother, and I'm gonna try to get her to come on. I won't say her details, but the entire week, I thought she was mad at me every time I because I did a lot of speaking, I get, like, three hours here, two hours there. Like, I was always looking out into the crowd. When you do public speaking, if you've never done it before, like, usually, like, if you're up on a stage, I just pick a friendly face on the left and a friendly face on the right, and I talk to those two people, and everyone in the crowd thinks you're looking at them. So you don't lose you know what I mean? You just find two people who think you're funny or engaging, and you just keep going back and forth. But when you're that close to each other, like in a more of a conference room setting, or, like, you know, sometimes it was like a little ballroom. One time we did it in this, like, little restaurant with, like, all this neat seating and everything. And you kind of can't do that because people are a little up on you more. So I kept avoiding this one woman because she looked mad at me. And it wasn't until the very last part of the very last thing that we did when she got the microphone to speak, and I realized she was just holding in a ton of sadness, oh yeah. And then she just let it out, and I watched her feel better for saying it. And then people gave her great advice. People hugged her. They came up to her, they supported her. It was awesome. Oh, I couldn't believe. Like, there are times like I'm going to take a minute after we're done here, and I'm going to think about what you guys said, and I'm going to feel overwhelmed and lucky that I pulled this whole thing together. Then that happens to me a lot, making the podcast and seeing people online, but being in the room, yeah, oh my god. Like I was, everyone was crying. It was, you know, just cathartic and lovely. So anyway, it was, it was awesome.

Speaker 1 1:13:47
Well, you've been tremendously helpful to us. So I mean, there's hundreds of 1000s of people out there that you don't even get to talk to every day, that are communicating back and forth with each other via your

Scott Benner 1:13:59
platform. I have a hard time wrapping my head around it most days, but, yeah, it's pretty amazing. This helped. Like, standing in front of people, I not that I haven't done it at like, I'll go do talks, but they, they last a few hours. So not that they're not people when you get there, but you're so rushed that everybody's just, like, an what are the kids call that the characters that walk through your video game? Like, you know what I mean? Like, you know, I mean, like, there's just a bunch of people there, but you can't really focus on many of them. Get to talk to some of them. But this i i made very certain I ate dinner with every person over the six days where we were there. Very awesome everyone. And it was, it was just a really wonderful experience. So I appreciate all the people that came and all your kind words. Thank you very much.

Speaker 1 1:14:42
Well, we've really been looking forward to this. This is a big fan girl moment for us. So Thanks, Scott. I didn't

Scott Benner 1:14:48
know Andrew was fan growing, but that's awesome.

Andrew 1:14:50
Oh yeah, oh yeah. He's like,

Speaker 1 1:14:53
your number one fan girl. He's like, so Scott said this, and bold beginnings, and Gina, watch this. And yeah, it's

Andrew 1:14:59
like, when. You and Jenny on an episode once. I'll let you go after this. But she had said, You're joking around like your husband probably is wondering who Scott is, and I'm sitting there at dinner that night, like, and then Scott said this. Scott said that I'm like, I bet Gina is sitting here wondering, like, who's Scott again, and why are you spending so much time with us?

Scott Benner 1:15:13
Six more weeks, Gina is going to be like, if Scott can't breastfeed this baby, I don't want to hear about it. Yeah, we appreciate it. Of course. I wish you a ton of success with the upcoming birth and congratulations again. It's really exciting. I don't imagine you're gonna name the baby, Scott, but if you do, please let me know. Never, never. Say Never. Thanks, Scott. Hold on one second for me. Guys, you're very welcome. Hold on one second.

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