Episode #40 Making Diabetes Work for You with Tori

Katie: 0:00

Lawdy, Lawdy, lokk who's forty it's this episode, that's who? This is episode 40 of the sugar mamas podcast. And today I'm talking with Tori. Tori is a fellow T one D mom, whose son Jax was diagnosed with type one right before. He turned a year old today. We'll get to hear Tory story and you'll also get to hear Tory and I discuss how important it is to make diabetes and your insulin work for you and your child. Instead of the other way around, we also spend a little bit of time talking about childcare in general and mustering up the courage to leave your T one D with someone else other than. That's not always easy to do. I think Tori would be a fabulous mom to follow on social media. If you need some encouragement and help, especially if you're the mom of a T one D toddler, you can find her on Instagram. Her handle is at Tori tackles too. I will link to that in the show notes. This is definitely an encouraging and empowering episode, and I hope you enjoy it. You're listening to the sugar mamas podcast, a show designed for moms and caregivers of type one diabetics here. You'll find a community of like-minded people who are striving daily to keep their kids safe, happy, and healthy in the ever-changing world of type one. I'm your host and fellow T one D mom, Katie Roseboro. Before we get started. I need you to know that nothing you hear on the sugar mamas podcast should be considered medical advice. Please be safe, be smart, and always consult your physician before making changes to the way you manage type one diabetes. Thanks. Hey everybody. I am here with Tori today and Tori, I didn't say this before. Cause we were chatting a little bit just a second ago, but this is my first recording that I've done in like two months, because I just kind of made the decision over the summer, not to record anything while my kids were home from school, which made life a lot easier. But so if I'm a little rusty, I apologize, but I'm excited to have you on I'm like, oh, I got to get back into the swing of things with my recording. I will have already told people a little bit about who you are, but I always like for people to introduce themselves. Cause you can do it better than I can. So introduce yourself and tell us your connection to type one diabetes.

Tori: 2:25

Yeah, my name is Tori and I have a three-year-old type one diabetic, and I also have a one and a half year old as well as being pregnant with my third baby.

Katie: 2:36

Oh, you. are okay. Congratulations. Wow. That's great. I have three and three's great. It's not always easy, but it's, it's a lot of, it's A good

Tori: 2:45

A little nervous,

Katie: 2:46

Yeah. When's that one do.

Tori: 2:48

March. So I'm newly, newly

Katie: 2:50

I was going to say, yeah, you got a ways to go. Okay. Well, why don't you tell us a little bit about your it's your son, right? That has type one. Okay. Tell us a little bit about his diagnosis story.

Tori: 3:02

Yeah. So he was 11 months old and I noticed that he was a lot more tired. He was taking a lot of longer naps, but I just assumed that he was going through gross birth as babies do. So and that probably started around 10 months old and he was also wearing a lot of diapers and drinking a lot of water. I had recently weaned him off of breastfeeding because I was pregnant with my second child. And so I just kind of wanted the break and my supply was kind of dwindling. And so I had gotten him on donor milk and he was just going through so many bottles. And so I was like, okay, you can drink water bottles of milk. And he was just constantly eating and all of those things, you just think, oh, he's a growing baby. And I thought he was just the healthiest little thing. And he started to look a little leaner, but kind of a backstory. He had been in the 100 over at the 100th percentile since he was four months old. I mean, at his four month old appointment, he was 15, 15 pounds or 16 pounds. And by six months he was 25 pounds. He was huge. He was huge. And so I remember at his nine month appointment, he had kind of like let's vote. And he was around 28 pounds and I was like, oh my gosh, he only gained a couple pounds. Great. We're staying under 30. And so I remember at 11 months old, I had taken him into the pediatrician because he had been constipated for a little while. And so for a good two to three weeks, I remember thinking, oh, like maybe it's just all the new foods I'm introducing. I've kind of started to introduce whole mill. Maybe the dairy is not sitting with him. And just little things that were kind of excused for awhile for being hot baby. And I remember taking him in and the doctor was like, well, just give him some juice and hopefully it'll pass. So I did. And I remember the next day he had this, these horrible dark circles under his eyes. And he looked sick and I had never seen this baby sick. So that day I was like, you know, well, he doesn't have a fever. Maybe he's teething crying a lot. We'll take him out five. And it was like a 90 degree day. And I remember taking it to the splash pad, the local splash pad. And I was like, oh, maybe he just pulled down and, you know, play in the water and perk right up. And he just stood there crying. And so I took him to read as Italian, nice, so much sugar. Right. And I was like, you know, maybe I'll just treat him to an early birthday because he was turning one in about a week

Katie: 6:10

a half.

Tori: 6:11

Right. So,

Katie: 6:13

So

Tori: 6:13

so we take him to read his, and that night he froze up. I was like, oh, maybe I did something wrong like a couple days ago. Maybe that's why he looks sick. That he's getting food poisoning. And then that Nike threw up in the bed the next day. He just couldn't hold anything down. So this was on a Tuesday that I took the slash. So now Wednesday I call his pediatrician again, I go, he's getting worse. And so I, she hasn't come in on Thursday. And at this point he is just looking so much leaner and she didn't even take him back. She just said, you know what? I don't want to charge you. Like, you know check-in fee. I'm just gonna have you guys go to a gastroenterologist at the children's hospital tomorrow morning, which would have been Friday because she was like, you know, he's not going to the bathroom and he's throwing up. Maybe it's like a bowel obstruction, but no one ever thought type one diabetes. Right? So we take him to the doctor or the gastro on Friday morning. And at this point he's breathing extremely happy. And he wouldn't wake up and he was just looking very, very Melanie malnourished and and it was just a period from like Monday through Friday, you know? And so we take him in and he looks at him and puts them on a scale of his 21 pounds. And that's why I wanted to let you all know that he was 28 pounds, you know, that that month. So he had lost and they actually weighed him on that Monday when I take them into the pediatrician for the constipation. And he was just 28 pounds. So in between Monday through Friday, he had lost that much weight went from 28 to 21. And

Katie: 8:06

of weight in a kid that small, well,

Tori: 8:09

yes. And so the doctor didn't think anything of it because it's an 11 month old weighing 21 pounds, I guess. and she looked at me and she was like, what's wrong? And I was like, he weighed 28 on Monday. And so she weighed him again. He was 21 pounds and she was like, okay, that's a big weight difference. And the gastro checks his stomach out and he says, you know, he looks fine there, but has he always looked so so muddled his fin, you know, and I didn't know what that word meant. And he goes, look at all his veins, you can see every vein in his body. And and I was like, wait, you're saying he's dehydrated. And she was like, yeah, he's very dehydrated. You need to take him over to the hospital, like right now, right now and get IBS. And at this point I was like, I went from the PD efficient twice to the gastro, and now you're telling me I need to take my kids to the hospital. Like, is he that sick? And I, I just still, wasn't thinking of. Because I had never, I had never met a type one diabetic. I had, I had no knowledge of this disease. And so we take them in there and they get a bed right away. There was no waiting in the emergency room. They called them in and said, you know, this there's a baby coming over there right now. So we go into the emergency room and they get them into triaged and they're taking, they're doing everything they can to get to me. And he was so dehydrated that they called it in the, you know ultrasound team and trying to get an IV going. They finally get one and they go and run the blood. And now it's been about three hours in the emergency room and I'm still going, it's this constant, like, this is because it's constipated. Right. And they're like, no something different. Something's going on. And I'm like, is he going to be okay? And they're like, we're doing the best we can. And he is just fighting them, but then passing out and fighting them and holding this 11 month old baby down. And it's just like breaking. And and he was very like hungry and he wanted to eat. And so he was crying and like looking for like pouches in my bag. And I was just like, no, just, just chill. And and so then finally they get the Ivy going and someone runs in and they go are either of you type one, diabetics, My husband and I look at each other and we're like, no, what does that mean? And they were like, well, his blood sugar is well over 300 and you guys are going to the pediatric ICU right now. And that's, that's how they approached it. And all this looks like is he going to die? Like wanting to know a lot of how to how to respond. And so finally they had a counselor come in and they transferred us over there. And finally, once he was all set up with the IB insulin going, they explained everything. And we were in there for a good 24 hours. And then we got transferred to. Regular floor and we learned everything there was about type one diabetes.

Katie: 11:06

Yeah, so it took doctors to twice to the pediatrician once to the gastroenterologist and then even a little bit being in the ER, before somebody actually checked his blood sugar, like kind of put the pieces together and, and check that. And I don't know a few things I find so interesting about that story is that he, I feel like that not that I've heard a million diagnosis stories, but that is like the quickest decline in weight that I've ever heard of. I mean, that, that a week, like seven pounds or eight pounds in a week. And I feel like, I feel like I've heard so many stories where doctors miss the diagnosis and which, you know, I think, I think people assume that doctors just know everything about every single diagnosis, which really just is not. The case. I mean, you kind of specialize in one thing and if you don't see a lot of type one diabetics, and it's not really on your radar, but I guess the reason why I'm saying it is I had a guest on not too long ago, same thing, like doctor missed it. And I feel like we all need to be advocating at our pediatrician's office for that to become like, just a part of a regular well visit every year, or, you know, if there's any behavioral changes, you know, Hey, let's just do it. How easy is a finger stick? I mean, I know kids hate it if they're not used to it, but it's just such an easy thing. Anyway, it's just so interesting to me that it went missed by, by that many people. I also find it interesting that they came in and asked you if you or your husband were type one diabetic because you know, I don't know, it just doesn't necessarily run in families. Do you guys have any history of auto-immune diseases in your families

Tori: 12:49

we don't. My dad did one of those, you know, DNA tests. They is where you can find your family tree edit. Did tell him with like, cause 23 weeks, that celiac runs in his family though. So, which was very interesting because we don't know anyone in our family that has celiac, but yeah, it's it said that it was in my dad's student mind, so yeah, so maybe, maybe it skipped a few generations, but you know, there was interesting things going on with my grandfather who could never control his diabetes. And so we wonder sometimes if she had, you know, some late onset diabetes, he never had an unhealthy diet. Never really. Looked like he'd get type two diabetes, but

Katie: 13:37

yeah,

Tori: 13:38

maybe, maybe was him.

Katie: 13:39

maybe, it may be misdiagnosed. I mean, who knows? We could speculate all day long, but I was just

Tori: 13:44

absolutely. And that would just, you know, kill me to try and pinpoint it. And it took me a good few months to stop trying to, because, you know, I hear if kids like your daughter older diagnosis which is not even helpful. But I hear of adults getting type one, but it's a very few handful of people being type ones before even hitting their first birthday. And it's just, it, it was very heartbreaking for me to, for that to happen so young. And I felt like my first take on motherhood. and I'm now, you know, handed this huge, huge group, huge responsibility. And I was also at 20 weeks pregnant when he was diagnosed. And so I had a lot of questions and. Is this something that, you know, my, my children will get like all of them and like, how does this happen? But my, my one-year-old find right now.

Katie: 14:40

that's good. So tell me a little bit about that. About. Well, okay. So my pers me personally, I did not enjoy being pregnant ever. I have three kids and I didn't enjoy the pregnancy for any of them. Love the kids. Obviously I loved them enough to do it, you know, three times total, but I just didn't like being pregnant. So when you say you're 20 weeks pregnant and you've just been landed, this T1 D diagnosis in your 11 month old, like, what was that like for you? Were you having a good pregnancy? Was it just, what were you

Tori: 15:13

Um, I was, but it definitely was what spiraled things out of control. And my grandmother who had Alzheimer's was living with us and I had a dog that had some temperament issues and was kind of getting old. And so that was. Well, the, one of the very first things that happened in my friend, Nancy, that was kind of like you know, hit, hit me hard. So that happens at 20 weeks pregnant. And then my grandmother passes away at 30 weeks pregnant. And then at 37 weeks pregnant, I had to put my dog down. And so there were a lot of things that happened throughout that pregnancy, where I had just so much emotional turmoil and definitely dealing with the type one diagnosis on top of those things was pretty overwhelming.

Katie: 16:08

Yeah. What it, what does it even like to have a child that young with type one diabetes?

Tori: 16:13

So He was kind of learning how to eat still. So that was difficult. I mean, I remember they were giving us, you know, okay, well, he's gonna be beyond, you know, one unit for 30 carbs. And then you call us in and let us know how things are going. And we'll change things as we go. And I'm looking at them like half the sues lands in their lap, how am I going to depths this? And there was a lot of spoonfeeding. I like 13 months old because I was so afraid of not knowing how much, you know, how much food was going in his stomach and not landing on the floor. And so I was becoming a little bit of a control freak and being like, okay, this is 30 times. Like none of it can land on the floor. Like I'm gonna feed you, giving him like chicken nuggets and like anything processed and. after a certain point and actually listening to juice box podcast. I really, I really tried to pull back a little bit on my controlness and trying to trying to remember that this is going to be forever. And if I let this drive me insane, I'm, I'm going to go crazy. And so I learned how to manage insulin and And try and just look at the food and know, okay. Some of it's not gonna get in his mouth, so I'm going to do a shot here and then watch his Dexcom and then do a shot there. And we were actually NTI for a good year Because they were just concerned with a big old army hogging on him. Or if I chose something else, just him being so young. And, and I was comfortable with MVI. He was diagnosed with a 12% A1C and at his first appointment, three months in, he got down to 6.7 and after a year he was down to 6%. So we're so so they were comfortable with getting them on an Omni pod after a year. And we'd been on, it said sporadic for 'em it's been two years now with, with diabetes. So,

Katie: 18:33

for a year in Omni. You've been Omnipod for a year.

Tori: 18:35

yes. Yeah. So, I mean, he's now at 6.5 A1C. It definitely went up because he's a three-year-old

Katie: 18:43

yeah. Yeah. Ours went up to after we got on the pump and I think that's something that people need to know, because I think everybody's under this impression that you're just going to put a pump on and your numbers are just going to automatically just fall into this nice, perfect line. And It is. it is a steep learning curve when you get on the pump. And I mean, it, it was, that was hard for us. And then summer hit and I thought summer was going to be great cause she was going to be home with me and we could manage it even tighter. And Ooh, summer was hard. Summer was So, hard. Just the lack of routine and, you know, anyway. Okay. so do you. Which do you prefer? I mean, you've kind of been doing both for equal amount of time. Which one do you like better?

Tori: 19:27

so I do like being on big for him beating, being on the Omni pod because after he turned two he was getting a lot more vocal about hating shots. He was running away when he would see me pull out the pen and he be afraid of getting in the high chair because that's where I would give him the shot so that he was kinda like strapped down. And it was just getting very difficult to even like pre bolus because I pull it out and then he was. I get upset at getting a shot and then he'd immediately think like, well, I'm going to get food. Right. And I'd want to wait about 15 minutes. And I explained all this to the doctor that I just want to be able to like dose him before I even mentioned food because he's a two year old. Right. And so They finally felt comfortable getting him on the Omnipod and, and it's been so great just to remotely, you know, go see them without him even knowing I'm doing it. And then say like your numbers look good. You're ready to eat. And so that's been really great. And he takes it like a champ. I mean, he gets a little scared when he, when I pull everything out and goes, no, no, no mommy. But otherwise, I mean, it's, you just distract him and he deals with it. So it's, it's been really great. But like you were saying, people get very. Confused on the fact that the pump isn't magic and learning how to do things. I mean, we've looked into the thing because he's on arrows, not, not dash. And so looping just, it, it looks like a great thing, but with him being three years old, he still is on such a little amount of insulin that I just get scared of letting it kind of pull him down if he was to get high and then dealing with a low and it's stopping. And I feel like it would be stopping and starting and only attacks.

Katie: 21:28

Hmm. Yeah. I don't know. I don't know a ton about looping. I'm actually going to talk to have a recording with someone in a little bit that's whose

Tori: 21:37

It's interesting. think, yeah, I think it's something that we might look into, but he, I feel like would be out of honeymoon now, but even being out of honeymoon, I mean, you don't use for. Six or seven units a day total.

Katie: 21:53

oh girl, we can blow through that and

Tori: 21:55

tiny. Yeah. Yeah. I mean, it's, it's a teeny amount of insulin. Otherwise he just falls and I don't mean to, he's always constantly running with active insulin and stuff. And so it's interesting how little insulin is used with children that

Katie: 22:12

Yeah. Yeah. And I take it. He's on a CGM.

Tori: 22:16

Yes. That's

Katie: 22:17

Yeah. I think you maybe said that before. Well, what do you feel like you've, w let's talk about your biggest challenges first, just with, I mean,

Tori: 22:27

Yeah.

Katie: 22:28

I don't know, as a mom, that's done it three times now. I feel like having a toddler is hard enough. So you throw on T one D on top of it, and I just can't even imagine. But what do you feel like your biggest T one D challenges have been far?

Tori: 22:42

I think I have a lot of fear of the unknown as he grows up, honestly. He won't know a life without it. And I sometimes think that's a good thing, but I also wonder, I mean, how he'll take it and how he'll manage it. And that just kind of scares me that he'll be on insulin since he was barely one years old. And, you know, if he doesn't manage it properly after 12, 13, 14 years old, and he starts getting rebellious, he can have complications as early as in his twenties. And so that fear was in my mind immediately. I mean, that's why it was so important to me that he managed insulin properly. I manage insulin properly, properly from the beginning. So that was one of my biggest emotional hurdles getting through that and being like, okay, I need to stop thinking about the negatives and think about the positives, but and the positives are there. I mean, sometimes I, I actually am grateful for type one because. You see a lot of kids parents giving their kids whatever, to whatever they want and to smell candy, just, you know, don't cry. And I, I look at him and I'm like, he loves his playing water and he likes to eat this banana for, you know, low snack. And I'm very grateful that it's made him A, not so picky kid because, you know, he couldn't get certain things. I didn't want to give us things. That's a positive that I've found, but as far as things that have been really challenging I think I think there's like jealousy and people getting to, you know, have a normal chance at raising their toddlers and not having to deal with, you know, the, the, the thinking. The wondering what his sugars are and letting anyone watch their kids.

Katie: 24:46

yeah,

Tori: 24:47

So that's just,

Katie: 24:49

yeah, yeah, That is. That is hard. I, I catch myself in that negative thinking to just, or not negative thinking, but just the, the worrying, you know, just about like same, same exact thing. I mean, my daughter is, is older than your son. She's nine, but I still think about like, oh gosh, what if she turns into a rebellious teenager and, and and you know what, she wouldn't be the first and she certainly won't be the last and there's been many T1 DS that have come through that and, and gotten their act together afterwards. But I don't know. I just have to remind myself that worrying about that. Now isn't going to change anything about how you think about my day or my future or her future. So I just try to live it one day at a

Tori: 25:35

And I think that's important. I think. In this day and age right now, there are a lot of people like yourself. Like like a lot of, a lot of people are coming out with letting people know of how to properly manage insulin and how to get along with, you know, parenting a type one diabetic. And it's important to have this community of people listening to other people's stories so that they can be a better T and D parent. And to, to acknowledge that doctors sometimes don't give the best advice. I remember when he was diagnosed, they were saying that 200 is totally fine. Right. And it's not, it's not. And I think it's important for people to talk about that and be on podcasts and talk about how you want to strive for the best sugar as possible. And that's how we're going to raise our kids to, to, you know, survive this.

Katie: 26:33

Yeah. To hopefully have a future without complications. Totally.

Tori: 26:38

Absolutely.

Katie: 26:39

I definitely would not be comfortable with Sarah being at 200 all the time. I mean, we hit 200

Tori: 26:45

And it happens. Yeah, absolutely.

Katie: 26:48

I'm looking at you breakfast cereal, my arch, my arch nemesis. But we hit it and, but I'm, we can get it back down and we can, we can get it back down pretty quickly and then get into much, much better numbers. So Yeah, I definitely agree with that. Like 200 is not the place you want to be forever, but

Tori: 27:07

no. They were, they were saying my range for him at, at a year old was 150 to 215

Katie: 27:16

is that just,

Tori: 27:17

they didn't want it anywhere close to a hundred because of lows. And it was, you know, when I realized. that one 50 was actually high considered high. And if you stayed at one 50 forever, like you will have complications. If that's, you're like, oh, that's an amazing number. And you just live there and higher. I was baffled and, and I remember thinking to myself like, okay, like doctors are there to make sure that your, your child does not die and that you can leave the hospital safely. And it's up to you as a parent to make sure that you strive for better. And you strive to have normal A1C is and normal sugars that a type, a non type one diabetic would have. And there are a lot of people out there that, that don't, don't take that seriously. And I think it's important to to strive for that and make sure that, you know, you're making, you're making your best effort to Have lower, lower numbers and not be afraid.

Katie: 28:29

So I'm curious to know, have you kind of gone back to your, the endocrinologist and like just kind of advocated for better numbers and tried to educate them, I guess is a good way to say it. I mean, have you tell me how that conversation

Tori: 28:48

it was very, yeah. So I remember looking, they looked at his graphs immediately when they saw that I had gotten it down to 6% and they were like, you're having a lot of like amazing grass, but we're concerned about lows and the desktop clarity to saying it was 3% under 70. And like between 50 to 70, under 3% in three months, I was like, that's, that's not a lot. And And they were, you know, concerned that I wasn't feeding him what he wanted. So that was their biggest concern. He's living a normal life. Right. And I was like, he eats pizza, he eats birthday cake, he eats goldfish, whatever he wants, he gets it. So, I mean, please don't worry about that. And so they were very pleased with that, but one of their big concerns, honesty was just that he was on a diet and I was like, no, like he's had on a diet, I just use common sense. And he doesn't drink juice and milk all day long. But yeah. So I think, I think sometimes they're afraid of not letting your kid be a kid first and that's that's, that is important. But if you know how to manage it some well, like you can let your kid be a kid. So but I remembered letting them know that. I was not comfortable with 150 being his low alarm. And that I was definitely okay with him being a hundred because he has to text calm. Like I am not afraid I'm going to miss a low it's going to be okay. And so they kind of backed off at that point. And I actually have met a few moms now that have a T1 de chil child and one that I was actually working out with. So her daughter was actually diagnosed the same exact weekend as jacks. So that was really cool to see. So we were talking about, you know, oh, she's still in honeymoon. No Jackson isn't anymore. Oh, you got the pump. You did too. So a lot of the timelines were around the same time. So she was actually letting me know how she was so afraid of doing things against. the endo. and it wasn't necessarily against, but she'd say, oh, hit, she, you know, I feel like she needs a A higher basal rate and I I'm waiting for the doctor to let me know what it needs to be. you know, she was two years in as well. So I remember I told her, like, you know, you can change that on your own. Right. And she was like, well, they're going to get me, like, they're going to be mad at me. Okay. Thanks. So like, you don't have to wait for the doctor's approval. Like it's your child, you advocate for them. And you, you, you know, that she needs a higher basal rate. So just change it, just bring it up like a couple points and see what happens. And if she goes low, change it back down a little bit, a little bit less than what you added. You'll be. Okay. And so that's kind of. Why I want it to be on podcasts and why I want to talk to other T one D parents letting them know that you're there, you're your child's best advocate and you know what? Your child needs more so than a doctor, because they're your, child's just a name to them. And you see that kid every day, you does that kid every day, you know what

Katie: 32:18

Yeah.

Tori: 32:19

and to have confidence in

Katie: 32:20

Yeah. And I would encourage anybody that kind of has that mindset about like, oh, I don't, they're going to be mad at me. You know, talk to your, talk to the endocrinologist about that and tell them, you know, I don't want to wait, you know, even a couple of days or a week for somebody to call me back and tell me how to adjust his ratios. And in Bazell like, give me some guidelines that I'm comfortable with and you're comfortable with, on how I can make small decisions to make changes, to see if it will help, because Yeah. that's, that's what I do too. I mean, I mean, I really respect our endocrinologist. We have a great team that we see and I feel like they're very encouraging, which I appreciate. They've never like beaten us up over anything. They're always willing to listen to me and let us try new things. But at the same time I do, I am not calling them.

Tori: 33:13

no, I would be calling them daily.

Katie: 33:17

I would be

Tori: 33:17

I would be calling them daily if that was the case, because, because that was something that I think a lot of people don't realize about diabetes either is that diabetes changes by the day. I feel, especially when your child's going through grocers, having different activity levels, going through an illness, you have to make changes on the fly. And if you're waiting for that doctor to tell you what to do, and they get back to you three days later, that that advice that they doesn't mean anything than it did three days ago. It's totally different

Katie: 33:50

Well, and I know everybody's different, but I mean, when I make a change, I make a, I make a really small change. Like I'm not, I'm not haphazard or reckless about like we're taking the ratio from one to 15 to one five, like, no, I'm, if I change a ratio, it's by one point and then I see the next day, how that goes. If it's still was a hot mess, we'll do it. Another point. If I change a basil rate, you know, the smallest, I change it by 0.05. Like, you know, you units an hour, like that's how small of a change I will make at a time to see. And you know what that 0.05, I did that a couple of weeks ago with Sarah's numbers. Cause they were crazy at school. They were crazy high and I increased it by just that that's the smallest amount you can increase it by on the Omnipod is 0.05. And I just did that across the board and it made a humongous difference. So even just that small change made a really big difference. But Yeah. I mean, obviously people need to probably, if they really have that much fear about making decisions for their kids ratios and rates and Bazell and all that stuff, then talk to the endocrinologist about it because I'm sure they would love, they are swamped. They would love for you to be more independent with your decision-making. Like they, they would love it. I'm sure.

Tori: 35:11

Absolutely. And I remember when he got the army pod and she told me, you know, call me back. And two days the trainer tell me back in two days and we'll make any adjustments. And I said, do I have to call back and do dates? And she looked at me and she said, based on his A1C, I'm sure you'll figure it out. And, and so it's little things like that where I, I encourage people to really, you know, just utilize Facebook groups and utilize these podcasts like yours and listening to other people's stories. 'cause I think that right there gave me confidence when I saw someone talking about like, oh, I should change something. And I said to myself, wait, people are changing things on their own. And, and I thought, wow, like if they can do this, I can, I can do this. And, and the fact that there are books out there, like How to be a

Katie: 36:09

I think like a pancreas.

Tori: 36:11

think like a pancreas. Yes. And I, yes. And, and so all of these tools out there are there to help you really take control. And if, if it was such a taboo thing to do it yourself, there wouldn't be, will be these tools. There wouldn't be pumps. I mean,

Katie: 36:33

Yeah. You're you're exactly right. Yeah. I love that book. That's I feel I call it the T one D Bible because that's like my that's like my reference book when I needed an actual physical object to go look at it. And then I loved the juice box podcasts too. I mean that you will learn a lot in a short amount of time by listening to that podcast. And Yeah. that's one of our favorites in our household too. So check it out.

Tori: 36:57

And, and I was actually on his podcast and I loved, I loved talking to him about everything, but I definitely wanted to reach out to you because Moms moms, need to talk to each other and moms need to hear other people's stories. And I think it's important to kind of relate to other moms thoughts and stories and listening to other people's children's diagnosis. It's, it's a tight community and I wouldn't be able to do this without the support of.

Katie: 37:31

Oh, I a hundred percent agree. You're going to have to tell me what episode number you were on his podcasts. Cause I, I may have already listened to it actually, but we'll see. I don't know. He there's like hundreds and hundreds, so

Tori: 37:45

It's a million.

Katie: 37:46

haven't listened to it just cause I don't think I've listened to every single one yet, but that's fine. That's great. Okay. Let's see. So you told us about your biggest challenges. I just, before we move on, I find it interesting that your biggest challenges were all like more mental and emotional, which I feel like really resonates with just moms in general because you know, we, I feel like whether you want to stereotype moms or not, we are usually the more emotional of. the half of a pair. Right. So I just find that interesting that it wasn't like. You know, anything to do necessarily with type one management. It was just about the mental and emotional burden. Cause it is so much, some

Tori: 38:29

Yes, because I knew, I knew that I could handle it. It was a challenge that I accepted immediately and I knew, okay, well, I'm going to strive for the best. And I'm very all or nothing. And this was something with my type, a personality that I could go, okay. Like this is perfect for me. And, and so I, I was always trying to perfect it and it helped me on both ends. I mean, being a perfectionist to get that A1C down, but also to teach myself not to be a perfectionist and to say, look, he's going to have crazy numbers. Like I need to let myself be okay with that sometimes. And, you know, work on getting it down. And the fact that I CA that he's never been higher than 300 since diagnosed. This is something, you know, that I have to keep my reminding myself that that's a good thing. And I listened to a podcast from spot today, even, and the guy was telling us, you know, about how she lived for 15 years with probably between 200 and 500, his, his entire youth. And that was, you know, back in the seventies. And so I think the, the management style, especially with all today's technology, I mean, it was, it was fine, but definitely what you were saying. It's more emotional for the mothers and technicalities. My husband was like, okay, I have to give a shot. Okay. fine.

Katie: 40:08

and management in the house. I

Tori: 40:11

I do. He was definitely nervous about a pump because of, you know, new technology and, oh my gosh, like a needle was way easier. But I was like, not really pump is amazingly easier. You don't have to chase your child down. Like, I think it's great. But yeah, just like the process is confusing sometimes to my husband. Like I just, you know, setting up the different numbers and being like, okay, set a 10 phase of this and do this. He's like, no, I just want to be able to give a shot. but I mean, he does great. And there's been times that I have to go and do stuff and he's with him and he won't text me and just we'll manage it on his own. And I'll look at the graph sometimes be like, oh, oh, he's throwing high. Like give him, give him another unit. But other than that, I mean, he

Katie: 41:05

Yeah, well, that's good. That's good. I know my husband usually does a really, I feel like my daughter always has great numbers when she's with my husband and I do like 98% of the T one D management. And I'm like, what is. going on, man? Like anyway, story for another day. Right. But yeah. I'm grateful. I have a, somebody who's willing to partner with me in this cause, man, it's a tough, tough burden to bear on your own. So I'm curious about childcare since your kids are so young, do you work outside of the home?

Tori: 41:39

I don't, I'm actually a realtor, so it actually worked out great because I will typically schedule my home showings for times that are on weekends. Husband. Can we be with them or after bedtime or I'll be able to drop the kids off with my parents and then go and show a house. So I typically work it around my schedule or just even take them with me. That's been great, but I've chose to be a stay at home mom. And I was actually very very relieved after this diagnosis that I was a stay at

Katie: 42:14

Yeah. You're a Work from home. mom, you

Tori: 42:17

Yeah, yeah, yeah.

Katie: 42:19

two jobs, realtor. And it's an interesting time to be a realtor speaking of, oh my gosh. Is It crazy? And where you are? It's insane in Florida. Everybody wants to move here, which I don't understand because Florida is a hot mess right now with the pandemic, so,

Tori: 42:34

Yeah. Some of this Georgia,

Katie: 42:36

Okay.

Tori: 42:37

this word, But yeah. I mean yeah, childcare is definitely something that I have been nervous about letting other people watch. I have never even let I let one friend watch him and he refused to eat and he was going low and Bless her. She kept calling me and say, I don't know how you do this. I feel like he's going to have a seizure any minute. And I was like, oh my gosh, you won't eat anything. And she was like, no, he keeps saying he wants to play. And it's been very difficult in that sense with type one. With him just being so young and not understanding like, Hey, like, I don't understand why you don't even want candy. Like please eat.

Katie: 43:19

well. What did it, what happened? What did he eat? What happened?

Tori: 43:23

She eventually got him to eat like some fruit. But he had some active insulin in his system and he was running around like a chicken with his head cut off because he was so excited playing with his friends and all that playing was just making him low, low, low, low. And so he did, he like ended up staying for the whole two hours around 55. And, and he would eat, he would come up like to 70 and then keep falling. And then she would like try and force like a pouch down his mouth and he would take a sip and then like throw it away. She was like, no, please eat. And eventually I finally got there. I was like, drink this Coca-Cola now. He was like, oh, I'll drink that. And I was like, oh my God

Katie: 44:13

Yes. Oh my gosh. He probably shaved a few years off your friend's life. It's like, never

Tori: 44:18

Yeah. Oh, she was like, I don't know how you do this. And I just, I told myself like, don't put her through

Katie: 44:24

yeah, but don't you feel seen a little bit. You're like, see, it's

Tori: 44:28

Yeah,

Katie: 44:29

it's so hard.

Tori: 44:31

it is. It's, it's very hard. And I think one of the biggest challenges I've had with letting people watch him and, and wrote, like, I have a lot of friends that say, please teach me about diabetes so that I can help. And while I do trust that they would understand it. And I have a very large group of amazing mom friends. I feel this weight that it's not their responsibility. and it's very hard for me to let go and let people try, because I don't want them to feel like that friend that I had watched them that one day she felt so responsible for his life, more so than any other child, you know, just randomly coming over their, to their friend's house. And I felt bad. I felt not shameful, but, just almost, almost like. I felt bad for her, not even my child, but I felt bad that she had to go through that mentally, because I don't want anyone else to go through that mentally. and So I just have a lot of days where friends go, Hey, I know you have a show. I play like, I'll help you watch Jackson. And I think to myself, like, I don't want to put you

Katie: 45:52

Hmm. Yeah, I hear ya. I feel like you kind of have to though, I mean, you know, to give yourself a break, especially with the, you got a third one on the way, like you should take, you should make a little PowerPoint. I've actually thought about doing this. I should, I really should because I still we're. We've we've had diabetes now for a year and the grandparents are always so willing to help us, which I'm so grateful for. But I feel like I still need to kind of like sit down and like give them like a little crash course. So I do want to like make a PowerPoint presentation to kind of have for them. Or if we, I feel like we rarely have to actually hire childcare just because. Well, like my oldest is in fifth grade, so I feel like they're getting a little older anyway, but also we just have so much family in town, which is a huge blessing, but anyway, if we ever did need, or even teachers like a crash course for teachers at the beginning of the school year the show I just published today that I put on the Raquel from type one together, she was telling me that the college diabetes network, whatever university or college is close to your city, like to look into that, to try to find a college student with type one who would feel comfortable babysitting. Anyway. Yeah. just because I feel like, I mean, I think, I think caregiver burnout is just as real of a thing as T1 D burnout. So we got to take care of

Tori: 47:18

And I will say that. Something interesting that happened right after I gave birth to my second, it, it was thrown into my lap that I had to let my parents take over for a week because not only did I have a newborn, but Jack's came down with hand foot and mouth the day that my newborn was born And I was so nervous that he would give it to the baby. Right. And it's a very contagious disease. So I was living actually in my parents' basement at the time we just moved and bought our first house this past spring. but, so anyhow, they had this great idea that they were going to take jacks for a week down to my uncle's farm. He has 30 acres of land. And they were going to go there anyway. The weekend that Rowan was born. That was in Gainesville, Florida. And so at first, when they approached me with, you know, taking him for a week so that he could, you know, have the hand foot and mouth down there and us just get time with the baby. Yeah. They don't have any animals. It's like a wedding venue. So yeah, so he has a whole wedding venue for anyone that's looking to get married in Gainesville, Florida. And it's called little, little house farm. I'm horrible. But but that farm is mostly just for marriages wedding ceremonies. And so they run a whole business there. But you know, I was like, well, just take tax down there. And if we'll run around and play, they don't have any weddings this weekend. And so I approached it to my husband and he said, absolutely not. And then I'm holding the baby Jackson's upstairs where like sanitizing everything in the house. And finally my husband was like, okay, I really don't want the baby to get this. It's like, yeah, I don't either. He was like, I, I don't know how we're going to separate them in a house. Maybe he could stay upstairs with your parents, but if they're leaving, then I guess, you know, we have two kids down here. And so we finally packed him a bag and I had my parents, you know, I went upstairs and while the baby was sleeping and gave them an entire crash course. And thankfully they did know a little because we lived there, but I still had done everything. I mean, it was a whole basement apartment downstairs. And so I sometimes went weeks without even seeing them. but I gave them an entire crash before, as I had them. Like they had not even so much as given him a shot before really. Maybe once or twice at the hospital. And they were learning as well since we have them come over, but have, is like having them give insulin shots to an orange and just did doing all the different techniques that they taught me in the hospital and told them how to change a Dexcom, how to, you know, change things on his Dexcom. If they needed to like set the alarm higher. And I let them go with him and he was gone for a good, you know, six days. And that was so hard not being able to like see every meal that you had and not doing the management and concentrating on the baby and, and you know what, he came back alive and he, he never had any issues down there. He might've gone down to like 50 at one point. They handled it and they did an amazing job. He never went high. And so I think that was important for me to, to be pushed into that position of letting, letting, my parents

Katie: 51:17

Yeah. Yeah. I, we, in what you just described though, the crash course you gave them is the crash course that we got. When we, before we left the hospital with our type one diabetics. So, and we kept them alive for the first six days and beyond. So

Tori: 51:33

Yeah, yeah.

Katie: 51:35

Grandparents can do it, childcare can do it. It's super intimidating. I mean, I, I w I was so intimidated when we first brought Sarah home. It really was like having a newborn child and again, all over again, like having to learn it all and the fear of like, not knowing what you're doing and everything. Yeah. But they made it yay. Grandparents.

Tori: 51:57

Yes.

Katie: 51:58

That's great. Well, okay. Tell me about what do you think your. Biggest successes have been with T one D management. I mean, you do not have an easy job with a three-year-old and a one-year-old and a baby on the way. So what have your, what have you been some of your greatest successes you already mentioned, mentioned your awesome A1C is

Tori: 52:18

yeah, I think some of the successes have just been learning, learning how man, how, how insulin works has been the biggest, the biggest thing. And I think that being a toddler and having a 6.5 A1C is great without any type of diet necessarily. I mean, he had pizza tonight for dinner and he's hanging out at 75 right now. So I think that that has been one of the things that. I've been very proud of myself for letting him have a normal toddler life while having normal. much.

Katie: 53:08

Yeah. That is no easy task. So well done.

Tori: 53:12

Yeah.

Katie: 53:14

Well done. Is there anything else you. want to add? I, what, what do you ha, like what kind of advice, what would be your best, you. know, one or two tips for parents that are managing type one and a toddler?

Tori: 53:28

I think the biggest thing is remembering that every day is going to be different and, and I think it is, I mean, everyone has different management styles and everyone is going to do what works best for their family. But if you typically ate a certain way before that was. The average normal American life. And it scares you that now your child has type one diabetes, and you're trying to find the next best thing to, to, you know, manage your child's blood sugars. I think it's important too, to learn how to manage insulin first and foremost, so that your child can eat dinner with you and your child. 10 doesn't have to have so many new changes in their life, because that was one of my biggest fears, how I would approach birthday parties, how it approached just typical daily life. I mean, I wanted my child to have birthday cake when we kind of a perfect, and I didn't want to be that parent bringing our own food and homemade cake that has, you know, no sugar. And so I think one of my best. One of my best tips would be to do your research and to read everything you can about insulin, because when it comes down to it, type one, diabetes is about managing insulin. And if you can do that, your child will have a very normal, healthy.

Katie: 55:12

I mean, I think that you really can continue to live life just the way you were living at before. You know, if you can, and it's not easy. I like, you know, you say that and I say that, but it's not like I just magically knew how to do all these things. I mean, I've had to, like you, like, we've already talked about, I've read, think like a pancreas I'm on my third, go round on that book. And I have listened to podcasts and you know, you, you kind of have to be a student of your child, but if that's what you want to do, you can figure it out. And for the families that don't want to do that by all means, don't do that. Your life is probably easier than my life.

Tori: 55:50

Yes. And I think that's super important too, to do what makes you the most comfortable if eating keto makes you more comfortable because you don't want to have to look at birthday cake and go, oh my gosh, how do I dose for that? Don't don't make yourself stressed out. But if it's breaking your heart, there are ways around it and you can, you can

Katie: 56:09

Uh, absolutely. I'm such a what's the word? Stubborn. Maybe I'm a pretty stubborn person, which people might not gather that from my posts, but, or my podcasts, but I feel like when I like, like for instance, birthday cake, like I look at birthday cake and it doesn't scare me I'm like, I will dominate you birthday cake. Like we will conquer you and maybe not this time, but we will eventually conquer you birthday cake. So it's, it's doable you just to it's trial and error and it's not gonna be perfect the first time for sure. But if you want to, if you want to be able to do those things, you can learn how to do them. For sure.

Tori: 56:47

Well, my big awakening was definitely when he was diagnosed a week before his first birthday. I remember. So I was planning his smash cake and then I was like, oh my God, my child can't have a smash cake. And so I immediately like hit the Facebook groups and was like, oh my God, we've been diagnosed a week. And I want my kid to have birthday cake for his first birthday. Like, I don't want to be different. I don't want my child to be different. And that was like one of my big aha moments right away, right away. And so, so many people sent me to different podcasts and different Facebook groups. And we're like, you can do this. Like you can just, just dose, just give influence score. And I think because he was diagnosed at such a pivotal time and it sounds so silly. To say that, but it was, you know, important to me for my child to get as much. And so I did like a cupcake instead, but I, I learned how to pre-bill us immediately for that, that cupcake. And, and guess what, he never went high or low or anything. And, and that that, right there, I was like, oh, he can't eat that. I just have to know what to do. And so I, like I said, it's, it's important if it's important to you make it your goal to learn what to do.

Katie: 58:10

That's great advice. Perfect. Wonderful. Anything else?

Tori: 58:16

I think we've

Katie: 58:17

Yeah, I think we have to I always love chatting with moms. You know, I have, like, I feel like lately I've had a lot. of healthcare professionals on and which they're awesome too, but sometimes it's nice just to like chat with another mom. That's living the T one D life alongside me. So

Tori: 58:32

Yeah. And I think your podcast has been helpful and just listening to other, you know, health professionals and listening to your diet, your daughter's diabetic story. Diagnosis story was made me cry and, and I was, I, I remember reading, listening to it and thinking, oh my gosh, like I want to tell Jackson story because someone else out there will listen to that, listen to your podcasts and have a baby that's diagnosed. And I want them to know that they're not alone. And it's a, it's a young life young diagnosis, but

Katie: 59:10

normal.

Tori: 59:10

live a normal,

Katie: 59:11

Yeah. Yeah. I mean, that is a hard age to get diagnosed. I would have to imagine. But I feel like there's pros and cons too, to each age. You know what I mean? Like with. It's sad that he'll never know a life. without diabetes, but at the same time, he'll never know a life without diabetes. So he doesn't really know what he's missing. My daughter does know her life before diabetes and she grieved the loss of that. But at the same time, she's very, she's so much older. She's so independent with it. I'm already, I mean, you know, w with my help, of course, but she's, she's taken so much ownership ownership of it. And I have a lot of, you know, parents say like, oh, I can't wait till my kid gets to that age. So anyway, I just feel there's pros and cons to every, to every

Tori: 59:57

Yeah. And I do think about your daughter's age. And one of the things that a nurse told me when he was diagnosed with, you know, you don't feel lucky right now, but you're, you're one of the lucky ones. Now I looked at them sobbing with my, they will, you know, 20 weeks pregnant belly. Like, how am I lucky? And, and to. He's Not going to grieve his life. You're going to grieve it because, you know, you know what, it was like being able to feed them whatever's on the plate, but you're going to still be able to feed them on your plate, just give insulin. And I was like, true. And they were like, you know, we have kids coming in here at 13, 14 years old getting diagnosed. And it is so sad and, and listening to that kind of gave me perspective. And and I thought to myself, wow, like if I was diagnosed at 14, 15 years old, I wouldn't know what I would do with myself. And, and so I definitely feel for those mothers and I feel for those kids I feel for your daughter and I, I think to myself, okay. Like he was a baby, like he's going to live a totally normal life in his eyes.

Katie: 1:01:07

I agree. I think the teen. Maybe be the hardest I would have to imagine, but I don't teen moms, I have not forgotten about you. I have a I'm I'm working up a series for teens in my head. I think that would be very helpful. yeah. And it would be helpful for me because I'm not, I'm not too far away from that. I need to do it for my sake. I need to do a teen series. So if you're listening and you have some interesting insight into the life of a teen T one, D you go ahead and email me and let me know. All right. Sorry. Well, let's, let's wrap it up here again. I've loved having you on Thank you. so much for, for being on the show and sharing your story. And I look forward to keeping up with you from here on out.

Tori: 1:01:48

Yeah, definitely.

Katie: 1:01:50

Bye.

Tori: 1:01:50

Hi.

Katie: 1:01:56

That's it for our show today. Again, if you want to find Tori on social media, head on over to Instagram and search for at Tory tackles too. I hope you guys enjoyed that episode. I just want to thank you guys so much again for spreading the word about the podcast. I can tell by the download numbers that it's growing and people are learning about it and they're tuning in and the feedback I've gotten seems to be all positive. So I just want to thank you again. If you haven't already, you can subscribe to the show wherever you listen to podcast. Apple podcast, Google podcast, Spotify, Pandora, Castbox it's in all of those places. And once you pull up the show, you click subscribe or follow, or sometimes I think it's connect depending on where you're listening to the podcast, but Wala you'll be subscribed. And then every week it will be automatically downloaded. So you can take it on the go. I hope you guys have a fabulous week. We are heading into holiday season. Aren't we? Halloween, Thanksgiving, Christmas, they're all right around the corner. And I just cannot believe that we're almost done with 2021. I saw a really funny reel the other day that said something to the effect of, I cannot believe we're only four months away from 2022. I'm still trying to process 2020. And I just feel like that couldn't be further from the truth. Great. Time is flying. Alright, have a great week chat with you soon.