Scott Benner 10/7/19 Scott Benner 10/7/19

#268 DJ Jazzy Jeannie and the Aubrey Tribe

Jeannie is a unique mom of a blended type 1 diabetes family…

Blended, not stirred

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

Scott Benner 0:00
Hello, everyone and welcome to Episode 268 of the Juicebox Podcast. Today's show is sponsored by Dexcom on the pod and dancing for diabetes, you can learn more@dexcom.com forward slash juice box, my omnipod.com forward slash juice box or dancing the number for diabetes.com. In this episode, I'm going to be speaking with Genie. Now genie is the stepmother of a girl named Aubrey who has type one diabetes. She's the foster mother of a girl named jazzy who has type one diabetes. She's the mother of a couple of adopted kids. She's a wife, she's everything. It's amazing. This episode starts with some discussion around what it's like to have a blended family and how to manage between. Well, you'll say what am I gonna do tell you the whole story right here. It's like a game or see a movie trailer, and you get done watching it, you think? Well, no, I don't need to see the movie. I'm just about to do that right here I was about to tell you the whole story. Just listen. While you're listening, remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise. And always consult a physician before making any changes to your health care plan are becoming bold with insulin. Those of you who have not checked it out yet on Facebook bold with insulin, but there's a private discussion group, just for podcast listeners to help each other and discuss some of the ideas that we talked about here on the show. If that sounds interesting to you check it out. There's 1100 users already. Hi,

Unknown Speaker 1:38
I am live in Arizona with my husband and we have five children. Can I stop for a second? You said Yeah, I am. Then it cut out. And then you said the rest. So I'd have everything by names just start over.

Jeannie 1:53
Okay. Hi, I'm, um, I live in Arizona with my husband and our five children. We have two daughters right now that are type one diabetic and three younger ones that are all adopted, but not type one. Our oldest is my stepdaughter. I bought him was diagnosed when she was 14 to 17. Now, our second oldest is type one. And she's actually our foster daughter who just moved in, in October.

Scott Benner 2:23
So there's so much interesting stuff to talk to you about. So I can't wait. I'm very excited, actually. So tell me first. Before we get started, you should know that I didn't have the heart to tell Jeannie that her name kind of blanked out the second time that she introduced yourself just kind of made me chuckle and I kept it to myself. Anyway. I'm about to ask Jeannie a question. And then the podcast get started. Did you contact me?

Jeannie 2:47
I did. I was asking you. Hey, I'd like to listen to a podcast of another blended family. And you're like, I don't have one you want to do it.

Scott Benner 2:56
I plan Did you write into the podcast?

Jeannie 2:57
I was like, Oh, okay. No, I

Scott Benner 3:00
wanted to listen to one Scott not be on one.

Jeannie 3:03
Right. I was trying to get advice here. Give it so hopefully nobody thinks I have great advice.

Scott Benner 3:09
Well, it is my experience that your experience will be good advice. And our conversation might lead to something that you hadn't thought of before because I might say something silly that strikes a chord. But this is what we're going to do. I'm going to orient myself, because my brain doesn't work as well as it should. Okay, you are married to a man who had children when you married him?

Jeannie 3:33
Yes. He had one daughter. Yes. Aubrey is our oldest

Scott Benner 3:36
Aubrey Okay. And then you came in? Did you make the babies with him?

Jeannie 3:41
A couple of them? No, no, no, I have no biological children. So our oldest is my stepdaughter. Okay. She was three when Matt and I got married. Right? So I've been around forever. And then we have our foster daughter and then our younger three are actually all adopted.

Scott Benner 3:56
Okay. So foster daughter comes second.

Jeannie 4:00
No foster daughter moved in about six months ago. Okay.

Scott Benner 4:03
See, see I'm doing this.

Unknown Speaker 4:04
Yeah. All right. Let

Scott Benner 4:05
me start over. You marry a gentleman. What's his name? Do we say his name? Matt. Matt. we marry Matt. Matt has a three year old daughter. Do you know what I got to get a pen? Hold on a second.

Unknown Speaker 4:14
Sorry.

Scott Benner 4:15
I don't get it. Hold on. Matt. daughter was Aubrey. You're not impressed that I remember Audrey's name from 18 seconds ago, but trust me, I am. Thank you. Then you it. Do

Jeannie 4:29
you adopt one child? To start we adopted? Yeah, we adopted it and then at birth.

Scott Benner 4:35
And how old was Aubrey when you made the first adoption?

Unknown Speaker 4:39
He was seven.

Scott Benner 4:40
Okay, so four years later, you adopt?

Jeannie 4:45
adopt hildon got him at birth. Then you get the adoption bug and you keep going. The younger two are actually biological siblings. We got them at the same time.

Scott Benner 4:54
Okay. How long? How old is Aubrey then.

Jeannie 5:00
She is head.

Scott Benner 5:01
See how I'm just gonna throw everything into Audrey's. Yeah. Okay, so like that. No, yes. As with anyone else, so Okay, so now alberi seven we adopt the baby already is 10 we go, you know, we haven't done in a while adopted a baby, let's get to this time,

Jeannie 5:18
right? For children. Right, and we think we're done.

Scott Benner 5:22
And you're rolling, you're rolling along and you're feeling pretty good about things. And now Aubrey is how old today?

Jeannie 5:28
Today? She's 17. She was 16 when Jazzy, our foster daughter came home.

Scott Benner 5:32
Okay, so you and you took in a foster child last year Jazzy, and jazzy has type one as well. Yes. All right. Everybody's take a breath. We're gonna start start over again. Now we got this all straight. Okay. Okay. And by we I mean, I finally understand that enough to talk to you. Perfect. I don't know how perfect it is. Maybe I could have just read the email. Dancing for diabetes is an annual showcase of Central Florida dancers that has raised nearly one half of a million dollars for type one research. The 19th annual dancing for diabetes show will be held on Saturday, November ninth, at the Bob Carr theater in Orlando, Florida. Tickets for the show range from 15 to $35. Each. Just go to dancing the number four diabetes.com. Click on the newsroom tab. And there you will be whisked away. The exact place you'll need to be to buy these tickets and have a great day. Dancing for diabetes is my favorite diabetes charity. good at dancing the number for diabetes.com. I am adopted. And I am grateful to the people who adopted me. And I think it's a beautiful, wonderful and loving thing you did taking anyone's children and because let's face it, our own children are irritating. And in other people's children, you think God they could end up being irritating in different ways that I'm not accustomed to. Right. It is a big leap. And it is it's an amazingly warm and wonderful thing. So thank you from all of us adopted people for being one of those people who might adopt somebody.

Jeannie 7:10
It's actually been a fun journey.

Scott Benner 7:12
So imagine it has so let's sort of unpack that a little bit. So what's it like bringing an adopted baby into a house for you? Boy, I know that's not the right place to start. Here's the right place to start. What's it? What's it like being a step parent?

Jeannie 7:28
So it's different today than it was when Aubrey was three. When he was three, there was a lot It was hard. Not because of Aubrey Aubrey has always been an easy kid. She's such a good kid. And she always has been. But we just kind of we got married and instantly it was custody battles and arguments. And that was hard because I'm not. I avoid confrontation like nobody's business. So that was hard. But being a stepmom to Aubree she's been great. She is always a sweet little girl. She's grown up to be a good, beautiful young woman. She's like, the day Honestly, I can look at her like, we're just a fun person. Like I really enjoy her company. So Aubrey is amazing. The other stuff that comes along with it, it's been hard. Blended families are hard, I think in every way. And

Scott Benner 8:15
and, you know, we're trying not to I don't wanna hurt anybody's feelings or anything. But I want to understand the concepts. Right. So yeah, there's a custody battle. Does that mean that you're just trying to become apres mother or the father is trying to get sole custody or what was trying to happen right there.

Jeannie 8:31
Oh, when Matt and I got married, he only had three nights a month. Oh, not because he did anything wrong. But he was told that was normal. And I walk into picture. I feel like that's probably not the norm for a dad who's lives in the same city and is a good guy. So we started the process. And now today, we have have to was always our goal. We never wanted to take her away from her mom. She's a good mom, who's in the picture, and we actually get along great now. But at the time, was young and there was a lot of stuff and everybody was still on edge. And you know, Bart,

Scott Benner 9:02
how old was Matt, when you married him?

Jeannie 9:05
I want to say 29 or 30. Okay, so

Scott Benner 9:08
he wasn't he wasn't young, young, but he was no right. And he had a three year old. Can I ask how long? He was divorced from apres. Mother when you met him or when you married him?

Jeannie 9:20
Um, okay. So it gets complicated, right. So we met. We met up in Alaska, actually. He was already friends with my sister and brother in law. So they after that was left and the divorce was happening. They brought him to Alaska. They're like, yo, you need a break from Arizona. Come get a break from Arizona. And, you know, come to our little sister's wedding, not mine, another little sister. And so I was up there like, Hey, your friends Give me my date to the wedding because I'm not gonna bring any of the guys here.

Scott Benner 9:48
And so Alaska, I'm assuming.

Jeannie 9:51
Right? Yeah, he's like, I'm gonna go to Alaska. That sounds like I've never done that. Right. So he goes to Alaska and we keep talking. And so technically, he was still married. While we talked, and the divorce was already in place and getting processed, and so we got married, we dated for nine months, some of that long distance and then I moved to Arizona. So we he had been officially divorced, I think for six months of that.

Scott Benner 10:14
Okay? She's been very careful to make sure that you all know she's not a homewrecker.

Jeannie 10:18
I know I am. I was not in the picture.

Scott Benner 10:22
I just love that you went from Alaska to Arizona. We're just like, incredibly cold, dark place. Now let's go to a bright hot place.

Jeannie 10:31
Right. I know. I am by nature. I love green. And I love Alaska. So all of our vacations tend to be green and mountains and very nice. Get a break from Arizona.

Scott Benner 10:43
Okay, so I feel like I'm understanding and and I get I get your point too, because I've you know, I've been a stay at home dad for 19 years. And if you told me that I could only be with my children 28 days of the month, I'd be very blue. If you told me I could only be with them two days a month, I'd be very upset. Like there'd be no it. I would want them to be with me constantly. I think a person who's not in a divorce situation. Who likes being around their family could never understand. Like, oh my gosh, like, they won't always be with me. And so again, I get Audrey's mom saying no, probably Yeah, right. I I would too. I I could be the nicest person in the world. I'd be like, I don't want no, I don't care. I wanted to be with me

Jeannie 11:25
right now. And then once we had held at home, I it took me a little while I was like, Oh, I get it better. Yeah, of course. Yeah. I'm

Scott Benner 11:31
not giving this kid to somebody else.

Jeannie 11:33
Already super hard. Yeah, I get it.

Scott Benner 11:35
So how long does that take to become comfortable?

Unknown Speaker 11:42
Just the blood. Just know the 5050 split how

Scott Benner 11:45
long until you're not pissed about it one way or the other? No matter which side of it you're on?

Unknown Speaker 11:51
Um,

Jeannie 11:54
it took a few years. I had somebody give me advice. It took us good two years. So as the two year markers like it is not better yet. What is happening? What's wrong with all of us? I think it was probably, you know what I think a big turning point was, at one point, we had all the kids, we had our kids at a private school. And they had their son at the same private school. Well, our boys held in and their son. So Bobby's mom, and stepdad, their son is held in the same class as our hildon. And they're actually in the same classroom. Okay, at that point, we were just bomb. When we did stuff for the boys we do. Plus parties and field trip, and it just had to be okay, like, our boys were friends. Yeah. What do you though, right? Yeah, we just had we we all chose this school. So we just had to be okay with that. And how is I think?

Scott Benner 12:41
I'm sorry. Go ahead. No, I was just gonna say I was gonna ask how Aubrey dealt with it. Was she on a similar timeline? Or did she go more quickly or slowly?

Jeannie 12:50
re was really unaware of any issues that we had, which is what we wanted, we were all actually always really good. On both sides, no matter what was going on about not talking bad about the other one, and respecting the other parents. And if Aubree was saying some sexual I would call her like, Oh, you could not talk about her mom that way. And I think that her mom's the same way. Aubrey was, I hope she describes it as being unaware. I didn't realize there were issues. Until a lot later, you're high, you know, older ages, filler. And afterwards as as things aren't like that anymore. You can give her some historical if she asked me even now try not to asking pointed questions to them. Yeah. But again, is he loves her mom. And she loves her stepdad and her brother over there. So yeah, we don't ever want a recession. But if she's asking questions, she's 17. We can tell her the truth show us she's asking hard questions already.

Scott Benner 13:45
So now, apres diagnosed with type one At what age at 1414. So not that long ago, three years ago,

Jeannie 13:54
coming up on her a three year diversity in May.

Scott Benner 13:56
Okay, so you are in a situation that people ask me about a lot. And, and so, I mean, you're covering, you cover a lot of bases. So, so, the one so you've talked about now how to, you know, share custody in a way that doesn't cause harm? Right. Right. Right. And the idea that it takes time and that you have to be you have to care about what's best for the child and and not not so worried about yourself, which is a difficult thing to do as an adult, my one of the more adulty things that I've had to do is ignore how I felt for someone else. Right? I mean, that's just counterintuitive in almost every way. You know, when your kid goes away to college, it's, you know, here's how I feel, but that's not what's right for him. Oh, you know, and so, there's a lot of that in there. So congratulations on being an adult because it's not easy. But now, here's the next thing. She's diagnosed with a disease that takes an incredible amount of understanding time and management skills. I just hearing from a mom this morning, about I split time with my, my, you know, my child's father and I appear to be a little more, you know, reactive to type one then it is. So I guess the first step is did does that happen? Like, like, how do you I, gosh, where do I even want to start Hold on, let me just like re scramble my brain when the diagnosis happens is are all of you in the room at the hospital

Jeannie 15:38
so that that night actually chaperoned a school class trip to Knott's Berry Farm. So we had Aubrey the whole weekend before. And we noticed things that were I had never heard of type one. So I wasn't connecting that it was that. So we got back. We're like, sort of the doctor. So mom took her mom took her to her local pediatrician. It's the day of her eighth grade graduation, and they do his private school. So they did like a big cap and gown. She was libertarians, big deal. He takes her to the doctor and back gets a text from mom, saying they're saying she has type one diabetes, I have to take her to the hospital. And so Matt, that plays everything down. Because if it's scary, he doesn't know how to deal with it. So he's like, well, I'm sure it's not that big of a deal. Like they're probably overreacting. We don't know. Any type one diabetes.

Scott Benner 16:25
Type One type, like 50 is probably bad.

Jeannie 16:28
Yeah. Yeah. But I've never heard of it. So it can't be that big.

Scott Benner 16:32
I can't even hear my stereo when it's turned off. Right? This is probably fine. Right?

Jeannie 16:36
Right. So he tells me this, I google it. I'm like, you better go to the hospital. So I haven't you know, another kid to pick up. Cool. So like, you go, you need to be there. He's like, Okay, I guess I'll go We'll see. See what this is about. And they get to the hospital. And they confirm, yeah, this is high blood for sure. And they teach her how to do an injection of insulin. Very, very basic information. She was not indiecade thank goodness. And they sent her home. And she graduates from eighth grade that night. And is this looters? torian it gives her speech shot her way, you know, yeah. So that they had contact with an endo who we were eating, I think a couple days later. And he moved appointments around and was able to get her in, I think about the very next day, but the next one and so Matt was out of town, he was out of state already because we didn't know we had this appointment. So for that appointment, and from all the training, it was either me and you know, mom, and stepdad or all four of us.

Scott Benner 17:35
And what do you do when the information strikes you differently than it strikes someone else or you absorb it quicker or slower than the other person like because I it makes me think of a time that Arden's blood sugar was very low. And she was young. And we're in the middle of the night. It's you know, God knows three o'clock in the morning, we have her like in her diaper wrapped in a blanket sitting, you know, seated on the countertop in our kitchen. And there was this I had a food my hand and my wife had a food in her hand. And both of us believe that we had chosen the correct food to save our daughter's life. And we stood there and argued about which one it was. And and either of them would have worked by the way. And yeah, neither of us was right or wrong. But you have this incredible feeling like I've been taught and I know and this is my inclination. So this is right. And if you are disagreeing with me, you are attempting to kill my child. Because you go from like zero to a million miles an hour, right? Like, right,

Unknown Speaker 18:36
right. So

Scott Benner 18:37
yeah, I am interested. Did that happen? Did you guys learn together? Did you learn separately? Um,

Jeannie 18:44
so they gave us training. And we did all of that together. All of us were there learning about glucagon and all that so so we learn all the basics together. And I think at first because mom is a nurse. Alright, so I come back, bro. And Matt naturally does because he's like, it's medical. You know, we'll figure it out, of course. But let's go for the way to just kind of make a lot of the decisions at first because she does. She wasn't familiar with type one. The geriatrics but we're like, but she has a medical background, so it's going to make more sense to her faster. And so we took a backseat to a lot just kind of let her take a lot of those decisions. Obviously she's here. Every was here at the house. We made decisions. We weren't calling mom in the night. Um,

Scott Benner 19:29
but she I think the leader of the diabetes tribe, you're like, let's make that President. Right.

Jeannie 19:35
Yeah, it wasn't even discussion of a natural you guys.

Unknown Speaker 19:41
Yeah, yeah.

Jeannie 19:42
I was trying not to step on it. I'm Aubrey and I love her. I know, I know. She's gonna get the best care. So why would I step on toes make this about me needing to be involved, right. So I did that for a long time would fall for perceptions and just give us half a bill. And mom would make the appointments and we would go and we were involved and we care for her. But we didn't. We didn't really take the lead on anything for a long time.

Scott Benner 20:13
Okay, so so you, you basically did what I suggest a lot of families do in, in, you know, classic situations, which is someone should be in charge, and someone should be learning it. But in the background that you can't have two voices yelling at the same time, right? You very netsy now, it's funny you describe yourself is like, it's confusing, and it's blended. But you guys make a lot of good decisions along the way. Like there's any point in your story. So far, we've been talking for 20 minutes. At any point in the story. If you were, you know, someone who pride a man away from her husband, then you guys wouldn't all be sitting in the room happy together. Right? All right, right. If Aubrey says mom didn't have, you know, a medical background, you guys may have all like, fought for a piece of the pie when it happened. Like many like you had a lot of good luck in this very confusing situation. And you made a lot of good decisions so far.

Jeannie 21:10
Yeah, yeah. I feel like Auburn's gotten the best care possible to do. Yeah, because we do work. We do work well together.

Scott Benner 21:18
It's obvious. Yeah. I mean, it's unless you're lying about something, but I don't think you would be.

Jeannie 21:22
I mean, we don't always agree on everything. Because we're different parents, different parenting styles. But as far as diabetes, you

Unknown Speaker 21:29
guys got,

Jeannie 21:30
yeah, you're on this page, I believe. And it actually wasn't until I started listening to your podcast that I'm like, I feel like we could do better. I feel like we could put numbers lower. I feel like you don't need to be scared of keeping her lower. So and then I'll be nicer talking about it more money. What about this? What What would you what kind of just little older at that point she'd been diagnosed for about a year. She's pretty independent with a lot of it. Because she goes back and forth, I think and, and naturally, she's like, well, I'll just do it. I know how,

Scott Benner 21:56
how did how does Audrey's mom take it the first time you say to her, Hey, I have some ideas about obvious medical care. I learned online from a stranger. Right? Well,

Unknown Speaker 22:05
I actually have it said that.

Unknown Speaker 22:07
Okay.

Jeannie 22:10
I talked to Aubrey about it. Because at this point, opera is pretty independent. I'm like, What would you think about trying to keep your numbers lower? I feel like maybe we were doing the safety thing we were taught. Keep it around. Oh, 170. That's safe. Lower than 80. That's scary. She could die. Like you. They do that because they don't know how involved you're going to get. They don't want your kid to die. So they do teach you the basics. And but from listening to podcasts, and I had to start with certain certain episodes, we'll send her like I would listen to this. But just Aubrey and I texting about it and talking about it. And it kind of has naturally now stepped. I wouldn't say I'm four involved in her mom, but I'm a lot more involved than I was.

Scott Benner 22:53
Because you've changed your management ideas, right? You've gone from like, let's put the insulin in and we'll test again in a few hours to let's be a little more fluid and reactive. And, yeah, that takes and Okay, so you guys are doing it together. You know what, and help me a little bit when you say you split time? 5050 it's, it's weekly. Right? Like there's a couple days here that a couple days. There are week on week off. Oh, it's one week and then one week? Yeah. Okay. Oh, so that's not as jarring as, like three days than two days. And like all those broken kind of

Unknown Speaker 23:29
Yeah, some

Scott Benner 23:30
people's custody agreements are are mind numbingly confusing. You know, ours was sure for a long time. So you learn from that? Did that change? Because you learn from it or because Aubrey got older or what? What's

Unknown Speaker 23:47
the schedule?

Scott Benner 23:48
Yeah, like kind of instead of bouncing back and forth, what made you go to week on week off.

Jeannie 23:51
But actually, when Aubrey was younger, we stopped fighting for custody and fighting because it was about eight. And she was kind of starting to notice that, you know, issues between parents. And so Matt and I decided he don't want to ruin her childhood. We don't want her whole childhood wrapped up in custody battles. And we don't want to keep fighting with her mom. So we actually settled for about a third of the time when she was eight. So it was a really confusing schedule. And you bounced around who's here Wednesdays then every other weekend, but not Thursdays, like it was super confusing. So it wasn't actually until Aubrey was 15 it was just a couple of years ago where she was like, he went to her mom and said I want more time with my dad. I don't want more than you. Yeah, she

Scott Benner 24:29
got to make the decision then.

Jeannie 24:31
It's not that we don't want anymore but we don't want her whole childhood ruined because we had advice. Somebody told us along the way. Hey, yep, Ella hood is so fun and getting as much time as you can great, but they're going to be an adult a lot longer than they're going to be a kid and if you ruin their childhood with custody battles, they're not going to want to be there if they're an adult.

Scott Benner 24:50
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Jeannie 26:44
Right? So we kind of took that to heart. And we're like, Okay, so once in time, right. But let's just make that, you know, utilize the time we have and your family when she's here and just keep it you know, we're still even when she wasn't here. It wasn't technically our time, we'd go to the class parties. But it's not like we were absent. And she wasn't here. But it was a super confusing schedule that we were able to simplify just a couple years ago, because Aubrey kind of sided.

Scott Benner 27:07
Yeah, good for you. That's excellent. Okay, all right. So right. There's a lot unpack I know, I'm getting it. Don't worry. And Okay, so let's go to this for a second. What about the podcast made sense to you? Like, what did you hear that you thought? Wow, that's sounds reasonable. I should be trying that.

Jeannie 27:29
I think the first thing that we tried, and it was Aubrey and I talking about what do you think about this idea of Pre-Bolus saying, there's nobody to talk to us about that. And I thought it means, you know, as we kind of, I know, I'm not saying that they because but I actually listened to somebody. I don't know. Jenny, Ellen or Jenny. He said you Well, if I'm this high, I posted. I'm done. This is I wrote it down. And let's start here.

Scott Benner 27:53
It was that with Jenny Smith to see the NHS. Yes, I think it was Jenny. And she kind of just gave like a some sort of a breakdown for what she does. Yes. You thought okay, well, it's a place to start. Yeah,

Jeannie 28:03
I took that. And with that, let's start here and try this. And so that's now our resist school. And she's texting me daily, not just when she's with us, like her and I are texting back and forth is she's like, Okay, I'm at this and I can feel the CGM. Hey, you have lunch in 20 minutes, pretty high. So let's go ahead and give your bolus is this now on even. So we just kind of started from there. And, and, and I will say I'm the only stay at home parent out of the four parents. So she needs supplies to school or she needs something. I'm three miles away. And I'm the one that she would call. Because I'm right here. So naturally, I stepped up more in those things, just but it's just Aubrey and I kind of decided, yeah, let's lower let's lower your threshold. Why are Why are we waiting till 170.

And she'll go home and tell her mom and it's not a secret of a home and talk to her mom about it.

Make sure she's aware of the Hey, I'm lowering my threshold. I'm gonna get my alarms earlier. But because I'll be so independent a lot of times it's just every fixing. Even I try to give her when she was first diagnosed and first got to see him she would have four parents texting her. Are you okay? And she didn't like that.

Scott Benner 29:14
Yeah, it wouldn't either. Oh, my gosh,

Jeannie 29:16
I know. So don't have to learn like okay, face to try and do this before any of us stepped in and now I think it's just mom and I.

Scott Benner 29:24
What, um, what does she running? She has to she have a pump. He has a pub, she has the T slip. Okay? And she's using si XCOM Yep, they're great. I just happened to I was just at the on the pod headquarters the other day, and I got to see some software that's about to come out where they're gonna there'll be you'll be allowed to have followers. So you'll be able to see when the insulin went in and stuff like that. And and how

Jeannie 29:51
Yes, but she was talking her into the army. Yeah, I tried talking to her to the Omni pod when I first picked out a pump and she's like, oh, No, now she's saying it. I can't even get another one. Now she's waiting till next August is for players to get the Omni pod. Gotcha. Look out sometimes they have switching specials where they they kind of help you

Scott Benner 30:11
get out. Oh, yeah. So if that pops up, that's a great idea. Um, I just was just bringing it up because I think it's amazing to now people will be able to see like, Oh, I, you know, I sent a text and said you should bolus this much. And now I can see it actually happened to me, which is great. You know, she's doing well on her own. And long have you been at this kind of new way of thinking about it?

Jeannie 30:37
Maybe a little less than a year. Maybe about a year ago, I kind of was like, why don't we try this stuff?

Scott Benner 30:44
Okay, so what are you seeing in changes and variability like, you know, from highs to lows? And what are you seeing anyone say?

Jeannie 30:53
A one has come down. I cannot Honestly, I tried to send data appointments, cuz that's one of our blended family things. And like, you know, you go to appointments, it just is easier with the personalities, I think, for him to go and just kind of relay the information. See, I sent him so he'll often be on his phone the whole time texting me, okay. They said everyone sees this. Okay. They said this. keeping me in the loop.

Scott Benner 31:17
walkie talkie with the button pushed?

Jeannie 31:19
I know, I know. And this last point, I know this last time I went to actually went because he was out of town. I was like, I don't know, we should probably just do this. It's much easier than you trying to remember what they say. I'm

Scott Benner 31:30
gene said that most boys are just boys. You know what I mean? I know. It's hard to break them of some of their boy things. I know.

Jeannie 31:36
He's a great dad. But he's like this medical stuff. I just don't get it all. So I mean, for sure. Here at the house. I am the one getting up with the girls in the middle of the night. It's, you know, I'm the hands on one with all the diabetes stuff here at our house. So he's like, it just makes sense for you. Maybe because they weren't buying you should just do that. It will be fine to pass it off. So we'll see. Until we're able to see has come down. He feels more confident. And I know she's catching things. She's increasing her. Faisal. She's spending it she's doing you know, she's we're just learning so much more.

Unknown Speaker 32:15
It's good, but she's confident.

Scott Benner 32:17
And she didn't have any trouble. Like, what was her first inclination when you said, hey, maybe we could stop your blood sugar from getting so high? Was she like, yeah, right on or did she?

Jeannie 32:26
She's like, yeah, she's all about slightly competitive. We had all kinds of setback a little too much. And so when I was like, let's try this in this. She's like, Okay, good. I'm glad I'm not expected to do that myself. Because she's back and forth. There's only so much control any of us can really have. Hmm. So I think we had all maybe put it on her a little too much. Yes. It's just

Scott Benner 32:50
my opinion, that interesting. So I've spent a lot of time talking about that recently with different, different people. So a nurse brought up to me it's something I was talking, I was speaking at a thing. And I mentioned that, you know, that there was a question that came from the audience. Well, how involved are you in this? And I said, Well, I'm I think I'm appropriately involved considering my daughter's 14, and she has a disease that requires you to use manmade insulin to keep it common. Like it's, I think sometimes people want to be removed from it

Jeannie 33:22
is a super responsible kid. So it's easy to think, oh, oh, this

Scott Benner 33:25
Yes. It's, it's it's the same. It's the same gear that causes sometimes parents to make this mistake in a larger family. So if you have a kid who maybe struggles with homework, you can't and you have one that doesn't, you give all the help to the one that struggles, and then the one that doesn't, sometimes it's like, I would like help to. Yeah, it would be nice, you can overestimate how well you're doing right. And, and I think that something I used to see online more than I see now, is that people want very much to give their children credit for their bravery, which shouldn't be undervalued. But at the same time, I like to remember that people aren't brave because they want to be there frequently, when you're brave, you're brave, because you are forced to be right you know, so it's fine to say look at them, you know, stiff upper lip, they're doing great and everything but that doesn't mean that it's not difficult or that they couldn't use help. And right, I was speaking just this past weekend with Jeff Hitchcock, who is the you know, the founder of children, children with diabetes, the friends for life conference in all those places. And he was speaking about research that he's seen that says not only should parents stay involved if they want to healthier child with type one, but much longer than you think even into their 20s they could still very much need your assistance you know in some way. I'm not saying you should still be telling them that you know, dinner's six units, but but you can't. It's not It's not the story. thing you should just extract yourself from.

Jeannie 35:02
Right. And I don't think any of us did it intentionally. But I think over time I was like, Well, she's going back and forth between home and and now that if she wasn't low, we wouldn't texted big. Are you okay? Do you mean anything? And I'm still up in the middle of night if she needs a juice box, it was last night. But it was just natural thing. And then when I stepped back in, I almost didn't she never told me this, but I just felt like it was almost a relief. Okay. I'm not on my own yet. Like, it's not all on my shoulders a little bit. That's right. Yeah. So I tried to stay involved.

Scott Benner 35:31
So let me ask you this. When you texted me, or when you emailed me and said, I have questions. I hope somebody from a blended family could come on and answer what were your questions? Have you been thinking to yourself, you know, these closed loop systems are starting to come out for insulin pumps. On the pod is saying that, you know, their horizon system will be out in 2020. And other companies are following suit. That all these systems use the Dexcom CGM, and I don't have one. Have you been thinking about that? Have you considered that the in pen? Even if you don't want an insulin pump? also works with the Dexcom? Or what about just the Dexcom? Right? What about just the continuous glucose monitor that allows us to make decisions here at my house that are astonishing. For instance, Arden went to a homecoming dance on Saturday. We didn't go with her we didn't worry about or my wife actually dropped her at the school and then went out to dinner with a friend. Nobody's sitting outside of the school hoping nothing goes wrong or waiting for a panicked phone call about my blood sugar's low, or what do I do? Nothing. My daughter was free to enjoy the dance. And every once in a while my wife and I just picked up our phones and checked on her. Now my wife was checking on her from a restaurant nearby. I was four hours away at my son's baseball game. We were both watching Arden's blood sugar, so she could free and easy enjoy a high school dance. And we did it with those share and follow features that Dexcom offers that's available for Android, and iPhone, you're gonna want to go to dexcom.com Ford slash juice box to find out more about the Dexcom g six continuous glucose monitor. The diabetes world is moving forward. And it's moving forward with Dexcom. There are links available in your show notes and at Juicebox podcast.com. And I understand that this might be a big move for some of you. And it might be nerve wracking. But please take it from me. Don't be scared. Dexcom is amazing.

Jeannie 37:31
I guess I was wanting to see how another family handles like, oh goes to the appointments, like I told you about like I tried to back off, but really I'm the one involved. I go and ask the questions. So I'm giving Matt nabru questions to relay about insulin stuff. And they come home and they're like, Oh, she said something about that.

Unknown Speaker 37:49
helpful. Do you want me to move it all back to Alaska?

Jeannie 37:53
I know, I was like, could I write you a list and have her just fill in the answers? I don't know. So. Right? So when I went this last time

Unknown Speaker 38:01
to send with

Jeannie 38:04
please give me write down the answers as she says them. So I wanted to see that whose options because we would run out of things and mom would have a ton of it. So had to set up our analysis. Now we kind of set it up where we'll pick up an even months you pick up in the odd months because you're getting plenty like they gave us a huge prescription we will kind of have a stop now. But let's just that way it's not I don't go to fill one in 30 filled.

Scott Benner 38:27
We kind of have a drawer and it's not there or break this balance between these two homes.

Jeannie 38:32
Yeah, who really wants insurances and supply companies like those those things that I was like, the day to day stuff like 30, blended family stuff we've been doing for a long time. But this stuff is new. And I think we've kind of settled into a routine even since I emailed you a little more of one of what what are we Oh, man is the diabetes stuff. I would

Scott Benner 38:54
like to suggest that you people are pretty good at this. You maybe should ask yourselves a little more when you have questions because I actually know a person whose child gets shuttled back and forth a couple times a week and they won't even let clothing go to the other house. Yeah, your kid shows up in an outfit. And when they get there then begins to use the clothes from the one parents house and when they return to the the initial home they came from, they have to return in the clothes that they showed up in because the one person can't trust the other person not to just start hoarding all the clothes and not giving them right. Yeah, that you magic. I mean, jeez, I just, I would just bang my head against the wall continue.

Jeannie 39:35
Oh, that's tough, difficult. And there's I don't know. And I will say we have one of the better blended families. I know there are tons of bad ones out there and it would be way harder. So we are blessed. If I need to I can send mama texts say what I need to make a decision now about play order, right? I just thought recently, hey, this is how much the supplies are. They want me to place the order right now. Do good with that. You know and I'm okay she's okay with me doing that. You guys can kind of just text back and forth and

Scott Benner 40:01
you're in contact and

Jeannie 40:03
yeah, we don't do it a ton. We don't need to do it a ton right? Um, but we can so that needed to accept dad or mom. It's totally fine like we can do that.

Scott Benner 40:12
So back to how you were wondering about who should I send the appointment you just made a decision send somebody to the appointment, you're seeing how you're going now you're considering adjusting it a little bit. Yeah. So is the real advice to people. Just try something and and then stay fluid about it. Like don't don't set it down and keep moving. I guess, though, if

Jeannie 40:33
you just don't know ever since. So different, but I guess I would just do whatever is best for kids. I asked Aubrey, but this last appointment I went to him like, is that a big deal? So because of that if I don't go dad can't go so neither of us go. And it's like we're missing information we need right? She's like, No, you should totally go and it was fine. Like, why would you not go? Now she's like, you should probably just go to all of them. Okay, so

Unknown Speaker 40:55
why what else? Anything else?

Jeannie 40:59
I don't think extra so you don't

Scott Benner 41:02
know what we think? What were you wondering back then? What were you hoping? Oh, flip podcast about hear somebody say that would make you go? Oh, thank goodness, somebody finally said this to me. I can just do it like this.

Jeannie 41:14
That's a lot of it was just the logistics of it. Like I want to make sure I wasn't overstepping. Because she has a mom. I'm not trying to. I'm not. I'm not mom. Right. But in our house. I'm wrong. That makes sense. Like, well,

Scott Benner 41:26
it not only my essence, it leads me to a question. I've been dying to ask you since we've been talking. Oh, come into a child's life when they're three. I assume. While we're not measuring. You love Aubrey just as deeply and thoroughly as her mother does, and probably in the same motherly way. Right. Like you don't.

Jeannie 41:47
Yeah, I love Aubrey, just like all of my kids. Right? Like there's zero. Wait, I don't just think was at all and so that's why we stopped them. Like why are you know, I can do this? Like, I'm not gonna be hard for me to love another case. Look, I do like, No, no, yeah, sure.

Scott Benner 42:01
Let's just keep going now, like it's filling up. But But no, I mean, I want people to understand that like, I mean, listen, I'm 47 my mom's in her 70s. She doesn't treat me one ounce differently than she does her that my brothers who are you know, natural to her. And, and so it is really to be it is really to be understood that you are in an incredibly difficult situation, the same incredibly difficult situation that our mothers and although her mother's, we had to score them, hers might be a little higher since right? She came from her, you know, but still, you're both living with almost the exact same feelings for this person who gets bounced back and forth who's been diagnosed with Type One Diabetes, who you want to take really good care of. And so to show

Jeannie 42:45
Yeah, I think so. I think she would recognize that too. Yeah, at this point, she would agree that I love Aubrey, and we only want what's best for her and we, you know, yeah, totally that I'm, I don't know, I don't know how to describe my role. And like, Well, I'm not your mom. Right. But I do all the mumps stuff.

Scott Benner 43:01
A lot of the time all the feelings.

Jeannie 43:04
Yeah. It's an interesting role. I don't I never pictured myself being a stepmom and I didn't have a stepmom. So I, I honestly have sought out other moms. How do you do this? Because other moms because like it's this is hard to share a kid because like you were describing how long does ownership I didn't either. Like I said what she should be here. Right? In my heart. I wanted her there all the time.

Scott Benner 43:24
Everyone feels like that. Yeah, yeah, that can't be the situation unless you just got way progressive and moved into the same house, which would be freaky. And I would absolutely watch that TV show. By the way, if you guys did that. Let's kind of jump off of Aubrey for a second. Sorry, Aubrey, we're done with your now and and and ask and I hate to skip over the twins, but they don't have diabetes. So yeah, we're not completely skip over them. But how does it come to your attention that there's a child in the foster system who has type one?

Jeannie 43:55
fully random. We have a friend who was a caseworker is not Jesse's case. But she has a caseworker and had met jazzy you know, just through different things. And she in passing says to me, she knows we have adopted she knows as well like, in passing. You guys ever take a 13 year old with type one. She's been in a group home for three years and she's such a good kid and she just wants a family and, and she knows me well enough that I looked at her and said, I think that sounds great. But you know, Matt, probably gonna say no, I'll run it by him. Because I'm all about that's always been like nope, we're done. More is enough. We're totally done. Let

Scott Benner 44:32
me jump on that side for a second. I my parenting style is I begin with no, everything is no if you said to me, Hey, Dad, the house is on fire. Should we get out? I'd be like, no. And then I back down from No, I go through all the bad reasons. I'm uh, I think backwards, I think through things. And maybe maybe this is I don't know if this is consistent with men or Pete. I don't know what it is. But I start with why I wouldn't do something and I get to why I would. End So while while Kelly starts with why we should do something, and well, you know, in the case of wanting a dog never got to the part why we shouldn't. And that's why I now have dogs that I take care of stares at me,

Jeannie 45:12
I think. Yeah, I think Matt and I are similar where I'm like, Yeah, let's do it all in

Scott Benner 45:16
a nice young girl in the group after three years, she needs a family. We're a family. Let's do it, man. He's like, what about the money and the insurance? Like, right? Yeah, yeah, I say I always say By the way, if I was married to someone exactly like me, I'd be really broke, like, because you know, it or not like, because I make good decisions about some things and other things. No, I'm incredibly cheap about some stuff. And incredibly not about other things. Right? Like, yeah, last weekend, I took an incredible amount of pleasure in finding socks that I liked in a Bible and get one free situation. And I mean, to the point where I called my wife, I was, I was away, I was off watching my son play baseball in a, you know, and my wife had to go back a little earlier than I did. So he had a day off. And I sent her a text message. jokingly, this has been recorded around the time that we we find out about the owner of the Patriots and his visits to the massage parlors in Florida. And I said to my wife, I said, Some guys might be out getting a massage, and I put it in quotes. I'm like, I'm out getting buy one, get one free. That's so proud of myself, because I have found socks with just the right bounce and cushion at half the price. And so I but then, you know, if I see something that I think is valuable, I don't stop and think about it. For some reason. My brain is like, split right down the middle,

Jeannie 46:40
you know? Yeah, I can do that. This is an investment. Cape, I believe that this is a testament, but your person's thoughts. So

Scott Benner 46:49
we cannot invest in your purse. Yeah. So okay, so you, I'm assuming, get mad alone in a room and talk him into jazzy right? Is that how you handled it? Well,

Jeannie 46:59
we know I didn't have I come home and I honestly, but I told her I would mentioned it. I Oh, I'm honestly already on board of the idea. But I did not. I did not think I did not think this would get even a discussion. So I mentioned that we were watching the kids swim in the pool. So we're watching the younger three swim. And we're just sitting there. And I'm like, so you know, Ellie mentioned this girl. And you know, she has no group home and she has type one. She's had it for a while. But he starts asking me questions. And he's like, we should ask her I don't like, I don't feel like I should text her questions unless we're considering this. And he's like, well, how can we not she has type one. I'm like, Are you serious? Really?

Scott Benner 47:39
mad? Because that has experienced the change of knowing someone with Type One Diabetes. Like

Jeannie 47:44
he's all alone. Yeah, I'm like, Oh, okay. So we call Aubrey down to talk to you. Like, am I in trouble? No, I'm talking to us. Oh, what do you think about this, and I read logistics of our house, she would have to be the one to share a room. Never. She's never in either home shared bedroom before. She's never had to she's always been the oldest and things so we call her down. We tell her about jazzy. It's like, we're doing it right. I'm like, okay, you both need to stop and think this through. Like, I feel like this is another response I expected from either of

Scott Benner 48:18
us funny how you turned on a dime. And you're like, Hey, you people are being way too reactive right now.

Jeannie 48:25
Because I know I'm all in. I'm like, Aubrey, and like, it's such a sharing a bedroom, you're sharing your siblings, when you're not here half the time, she'll still be here. When you're sharing your grandparents. You are everything dad, nice. She might end up being a better kid than you. And you might slide down the list. You never know. Right? Totally. I think I'm pretty sure Matt says something like that. They're very sarcastic, um, even was like we need it. So I made Aubrey take a few days and spot it. But in the background, Matt and I were talking and asking questions, caseworker, we do. And she's answering questions and telling us more details and as much as she could. And so I was actually about to leave for Africa with our church for 10 days. Like, let's not meet her right now. I don't want to meet her and then disappear. That's not good for her. So we waited till I got back and met her like Lou next week. Right? And and we were introduced, so I already had a couple families fall through that started the process and into their minds, which is heartbreaking. And so we're Palm Desert amazing. And they introduced us as they just they have an IRA type one and they just want to mentor you and just be another person in your life that could help you with your type one. And so we took her out to dinner under that. Oh,

Scott Benner 49:41
sure that that that veil of you know, not not not wanting to put her in a situation where she could get let down again.

Jeannie 49:48
Yeah, totally. We just wanted to protect her and meet her. And I think before we even met her met, I knew we were do this. We knew that this was gonna happen, but we're not gonna put her in prison. You could be hurt again. So we waited a while we visit with us to like our volleyball game and kind of hang out. And at one point we were driving because we had our agency, it was just kind of visits more and more. And we were given a lot of flexibility on Oh, something's happening in the group home, you want to do that great. But if not, you're gonna come over here. Great. And we start flip overs like that. And at one point, we're driving, and I'm like, so that I would like you to bend. And whatever that looks like, if it's adoption, great. If it's, you want us to just foster you. Great. If you want us to help you reunify as moms, this is something we can help mom learn how to do great. What do you think about that? She's like, yeah, I'll move in. really casual about it. And I'm like, Oh, I'm like getting all emotional. This is like a moment. And she's like, yeah, that's fine. I'm

Scott Benner 50:44
like, whatever, lady that sounds good. Yeah. And

Jeannie 50:46
I think now that I know her better. That's just her her way. Even though she was emotional about it, she wouldn't have told me at that point. She didn't know me well enough. So we get to know her and she moves in? Well, gosh, I got that. We met her in September, she was moved in by the end of October. So we rearranged rooms and bought beds and baby town.

Scott Benner 51:09
And how long ago was that now?

Jeannie 51:11
Uh, this past October?

Scott Benner 51:14
Oh, hold on a second. Six months, really? was halfway there.

Jeannie 51:19
Sorry. I thought you might ask. I think I did the math yesterday.

Scott Benner 51:24
Look at you. You actually looked at the you're like, let me look on the calendar and see. And overall, how is it going?

Jeannie 51:32
So I'm great. Yeah, he's a good kid. He's a, if it was easier, I would think taking it like she's a good kid. Not that she's not a 13 year old girl. Because there's all kinds of other just parenting stuff that comes with that. Yes. Um, but even beyond type one, there's stuff. And we're adjusting. And the kids are cyllage. I mean, we changed the birth order. So that's a huge thing for kids, especially adoptive kids.

Scott Benner 51:58
So it didn't you slit in an older person, right?

Jeannie 52:01
Yeah, yeah, we change birth or suggest fits between, you know, older too. And it hasn't been our dynamic, but it's going well, like so with Aubrey it took it's taking more time for them to just get to know each other because she's gone every other week. So she's taking more time.

Unknown Speaker 52:16
So it's a huge dynamic to seven. It is it is

Jeannie 52:19
all of a sudden you're like and you're sharing a room have fun. Yeah. And they're both doing well with it. I think jazzy was more easily 30 are in a room with three other girls. She is federally Alright, find some

Scott Benner 52:31
space. She's pretty good. She's pretty. Yeah,

Jeannie 52:33
whatever the week, she has her own room. That's great. Um, so the younger kids will search them with the idea. I'm pretty sure our youngest honor the six year old. She's like, okay, so witness my new sister moving in. Like just, this is just like, Okay, this is just something mom and dad do just, you know, okay, we're at home and it is perfect. And they moved on.

Scott Benner 52:54
Do you imagine that you'll adopt her eventually, if things continue.

Jeannie 52:59
you're open to adopting her over the age of 12 in the Arizona Foster, as I say. And right now her first choice is to reunify with mom because they have not severed. Right. Okay. Um, and so she still does visits with mom every weekend. And I think it's moving to severance. I I actually am the one that kind of fought for them. Not just last court date, cuz I was like, You guys aren't giving her a chance. We just got her a CGM. We just are getting her technology. What if monkey handled this? Right? I mean, I asked jazzy if I was allowed to say these things. That Yes. And actually, after that court day, when I thought I was doing such a good thing, I thought I was helping her out like we could help her reunify, we just want what's best for her. Of course, if that's adoption, like that's fine. To help mom learn how to finish diabetes. Great, we will do that. After that visit, mom start pushing jazzy really hard to let us adopt her. Because I think she knows she's not going to figure it out. It's been three years. And there's other things like jazz, jazz is not a US citizen. But this would get if we adopted we'd get her citizenship, like things like that.

Scott Benner 54:01
But I don't think mom can provide for her. Is that like her mother might feel like, even though she might want her back. There's a better life for her with you.

Jeannie 54:11
Yeah. And I tend to describe that to jazzy as, hey, look at the younger two, their mom loves them. Their birth mom loves them, but she picked us because she couldn't afford to feed them. Like, that's what your mom's trying to do for you. I think in the best way. She knows how. But you're when you're 13. And you're hearing nothing from your mom. That's

Unknown Speaker 54:29
so hard, like rejection that so hard.

Jeannie 54:33
It's so hard. So you know, we have that stuff and that stuff comes up. So I was shocked. That was the case. And now we're kind of backpedaling, like, Okay, if that's not an option, then yeah, we're open to adopting and we still are but just has it cited basically.

Scott Benner 54:47
So in six months, what kind of an impact Have you had on Jazz's diabetes care?

Jeannie 54:54
Well, so I will say her last endo from all accounts Everything I've heard was not as good as our current endo. we've switched her, okay. That alone I think she would she she would feel like she went to no appointments and got beat up and yelled at for an hour, or 15 or 20 minutes and told she's not doing good enough and then get sent away with a prescription. He never suggested a pump. He never suggested the CGM. She's had this since she was seven. He saw her for three years and never once suggested technology or gave her any praise.

Scott Benner 55:29
Yeah, that seems common for a lot of people. Oh,

Jeannie 55:33
I it makes me so mad at him.

Scott Benner 55:34
You get good or bad some

Jeannie 55:36
that seems to be we kind of in the group home suggested they're like, you know, they don't get he she doesn't like him. So if you have one in mind, I would swear so we just automatically switched her the one that we love that you love. And so we've gotten her CGM is doing MD eyes which I'm he was on board when it was going to be the Omni pod. But her state insurance won't cover the Omni pod. So we kind of switch gears and I'm like, Well, what about the T slim? And now she doesn't want to do it. So I'm not sure why. I'm not sure. And I told her this. I can tell you I think it's a little bit of a control thing. There's a lot of unfamiliar stuff going on right now. A lot of change. So this is familiar doing shots is familiar. And she's doing fine with it. So why why rock the boat

Scott Benner 56:18
would start with the CGM in the situation anyway.

Jeannie 56:21
Oh, holy. Yeah. That was my first thing. Right? Yeah.

Scott Benner 56:24
She'll figure out what she wants to do next.

Jeannie 56:27
Yeah. And so yeah, so we let that go. And even her doctors like I'm gonna push you a little bit for the CGM. But if you're getting insulin in you, and it's going well, for a while, isn't crazy through the roof. The group home did a fairly good job at managing her sugars, but they kept her on a pretty low carb diet as well, which, you know, jazzy didn't like. So we're trying to like, figure out the new way of doing but it's just a it's a new mindset to like, she came home one time from a visit with mom and said something I'm like, well, you're coming home for moms Really? Hi. How can we how can I help you figure that out? She's like, since one of my high and her numbers were 50 and 300. And I'm like, you don't think that's high? Like just her whole mindset? Yeah. Is it's been trained by other people. And now I'm trying to, I don't know that's super high. Like,

Scott Benner 57:14
wait, oh, shells to Wait, are you Wait, are you helper, kind of bring it into a more reasonable range, she's gonna feel it's gonna feel differently. She's gonna be excited, you know?

Jeannie 57:24
Well, she has such a poor immune system. And she's already had her up. She's been hospitalized, I believe in dk 11 times. Prior to the state. He was removed only because of diabetes. There's no, there's nothing else. It's because she kept ending up hospitalized with diabetes. Her mom still has brothers. She says brothers that mom is raising. So it's not a bad home. She's not a bad mom. So be the first one to tell you. My mom is a good mom. She just I just couldn't figure it out. And I think it does a language thing that makes it harder. Yeah, and things like that. So you'd be the first one to defend her mom. And so I will for her. She's not a bad mom. She just couldn't figure this out. And Jessica doesn't open the hospital. And the state's like, we can't do this. Like she's gonna die. Right? At least at least. Yeah. the least bit in one coma. Like it's been bad.

Scott Benner 58:14
So funny how she was in a situation that was so crazy that between 250 and 300, and seemed really, like, I think, an incredible improvement. Oh, yeah.

Jeannie 58:24
You should have seen it. When I said that. That was high. She looked at me like I had three heads.

Unknown Speaker 58:27
I'm like, Lady 500 times.

Jeannie 58:29
That's right. That's exactly right. I'm like, this is high that I've had to kind of back off. I don't want her thinking I'm hounding her all the time. I don't want her feeling like I've moved you in here to fix this. Like, that's not why we brought her here. Like we really feel like she's supposed to be here. And I think at some point, I think at some point, she will change it will decide to let us adopt her. I don't want to form a relationship around. I'm fixing your diabetes. Because that's not it. We love jazzy. Sure. We want her here long term.

Scott Benner 58:57
Yeah, the narrative is the narrative is complete and encompassing. And then she gets to decide from there, you know, what that means moving forward. I mean, who knows? Right? She could pop up six months from now and be like, hey, I need to keep my blood sugar at 120. Now all the time, so I'm gonna go home now. And like, and that could happen as easily, she could say, I've fallen in love with you guys. And I want to stay here or anything in between that, you know, and it's really wonderful of you, by the way to give of yourself like that, knowing that it could possibly go the other way. because that'll hurt if she leaves.

Jeannie 59:32
Well, yeah. And we've, we've hold her like, whether you move back in with mom or not. But no matter what you decide, like, we hope we'll still be your people. I hope you'll still let me manage diabetes, have Mama's understanding it or take you to appointments or be at your wedding? Like if that's what we already that's great.

Scott Benner 59:49
Right. So it is hard, but you have more you have more for her if she wants it.

Jeannie 59:54
Yes, yeah, exactly. We've told her over and over again and everybody would like her to choose adoption, but it's a lot of pressure. She's known us for Six months. So, once more time, we understand that

Scott Benner 1:00:03
I wouldn't let you pick my takeout at this point, you know? Exactly.

Jeannie 1:00:07
Where people, right? Yeah,

Scott Benner 1:00:09
no, I Well, again, amazing because it's a it's a different it's a different gear you have to allow yourself to be open to the idea of being hurt or helping someone that you know may not want it or may not, you know, may not stick around or all the things that could possibly variably happen to open your heart up like that is it's dangerous.

Jeannie 1:00:33
We've only done it with this one kid we got licensed for her. So the people who do this foster care thing all the time on a rotating basis, I have friends who do I actually hold the respect a whole new level of respect since I've been doing this with one kid, and we really don't tend to open our house up to more we have five kids, right? Um, yeah, people who do this say is special?

Scott Benner 1:00:54
Yeah. Okay. Well, we've learned a lot. I usually just say that at the end, but we've we there was a lot in there, I would need to ask you, if we didn't talk about anything that you were hoping we would talk about?

Unknown Speaker 1:01:10
Um,

Jeannie 1:01:14
no, I don't think so. I was gonna say, hey, actually, you I hear all the time on this. Talk to people that like, oh, are in the witless insurance? Well, that wouldn't let us get a pump for six months, right? We found a loophole. And it may not work for everybody. But we got every pump. So they had the six month rule within three months, I think. And it may not work for everybody what we did the Medtronic 30 day trial. That was the first pump, we heard about the 30 day trial. And when we went to go get the T slim. They're like, Oh, you have to wait six months, we're like, but she's already been on a pump for 30 days. They're like, Oh, well, then you're familiar with pumps, okay, and they just let us get it.

Unknown Speaker 1:01:53
That's silly.

Jeannie 1:01:53
I don't know if that will work for everybody. I'm not promising it well, but it's worth it.

Scott Benner 1:01:57
Well, I will give my advice on the subject, I think you should stand in front of your endocrinologist and say them write the prescription for the pump. Right, please. I'm getting a pump, I appreciate that you have a static rule, I don't think it applies to our situation, we'll be fine. Like, you know, please don't worry, give me the prescription, and then stare at them. It's like when you're trying to get a car at a cheaper price. You don't get in any negotiation I want to share. After the ask is made, whoever speaks first loses. So all you have to do is say we want to pump now we're not willing to leave here without the prescription and then have the nerve not to talk again until the doctor talks. Because when the doctor talks are gonna go okay. Because what else are they gonna say? Yeah, right, it's, you just have to, you just have to be a little, a little steadfast, you know,

Jeannie 1:02:52
people that are able to get it and know or because their interest because for us, the end would have written it, it was the insurance that wasn't gonna cover it. So

Scott Benner 1:02:57
people that that have an insurance problem that's different, the endo could then probably write you a letter of medical necessity that would get them around that rule. And if they don't know about that, they could spend five minutes figuring it out. And

Jeannie 1:03:08
we didn't know that right?

Scott Benner 1:03:08
But if but you have to be careful that in a lot of practices, they just have this arbitrary time. And you don't get a pump until you know some date on the clock. Which by the way, at the very beginning of this episode, you talked about the idea that like somebody told you it takes like two years to get comfortable with the mix family. And then when that didn't happen, you were like, Oh, my God, what happened? I got to two years. That's such an arbitrary number. Someone spoke. Yeah, no,

Jeannie 1:03:33
yeah. I had I had clung to that I was supposed to be better by now what is happening?

Scott Benner 1:03:38
I did the same thing with diabetes. I randomly assumed it would take a year for me to understand diabetes. And on the day, I'm not even kidding. On the day of the year. I was like, I don't feel any better. I don't understand.

Jeannie 1:03:51
Somebody put that in your head. And then you know, I really did. I was like, I don't like conflict. This is comfortable. So tears in this is supposed to end. Yeah, I did it. So yeah, no, I feel like I wasn't. I mean, for them it worked into here. So that was fine. But I shouldn't have taken it to heart so much.

Scott Benner 1:04:06
Thank you for you, by the way, too, because I remember being newly married and there was already a lot going on there. If you would have thrown something huge like this into the mix. I don't know how, how I would have handled that. Exactly, you know, yeah,

Jeannie 1:04:18
I look back and I'm like, wow, that was kind of chaos. You're trying to adopt it. Like it's as the customer settles, it's nothing that I do is easy. Like even our adoption stories are crazy. And our stories are normal.

Scott Benner 1:04:30
I will say this I find I find about being married that when you have a common enemy. It's much easier. I always find when my wife and I don't have a common foe. Then we look at each other and I'm like, Huh, I wonder how we could fix each other. I'm like, No, like let's let's focus on this over here we go. Yeah, it's oh my gosh, that's awesome. God I can't thank you enough for sharing. This is one of the more exciting stories. I think that is that's ever been on the podcast. So thank you very much.

Jeannie 1:05:04
Well, you're welcome. And it was I mean, fun talking to you actually briefly met you when you're here in Phoenix. So was I delightful? You were very delightful. Yeah, we were in your class. That was the thing. You just you were just here for it.

Scott Benner 1:05:16
Okay, so I came out to the type one nation event in Arizona,

Jeannie 1:05:19
and Aubrey, Aubrey and I were there.

Scott Benner 1:05:21
I did a panel with a couple of nurse practitioners and someone from the jdrf. Then I did my own build within something in a slightly smaller room where a woman would have made you bold with insulin into a camera. That was not my idea.

Jeannie 1:05:33
Yeah, yeah, we were in there.

Scott Benner 1:05:35
How am I doing there? Be honest.

Unknown Speaker 1:05:37
Oh, you did? Great.

Scott Benner 1:05:39
Thank you did great. Did it actually move you forward? Did having all that information and kind of a compressed time and hearing me say it in slightly different ways was invaluable?

Jeannie 1:05:47
So a lot of the stuff you said I had heard I listen to podcasts. Okay. But Aubrey has all your podcast she has not even close. So it was really beneficial for Aubrey. And I could like poker music. Yeah. I could have been telling you he says that like

Scott Benner 1:06:00
so tell me something because I'm terrible at this. Did we actually shake hands and say hello,

Jeannie 1:06:04
briefly very briefly.

Scott Benner 1:06:06
They yank you around I get you get drugged from room to room. Oh, I

Jeannie 1:06:09
know. You're a lot of people talk to you. So I just briefly said Hi, I'm you're interviewing me next month. I'll talk to you later. And you're like, Okay, talk to you later.

Scott Benner 1:06:15
Remember that? I wish people like I flew in the night before they take you to a dinner. Get now you're in a suit, kind of like you know, just wandering around meeting people. And then you have to say something and then they whiskey back to the hotel. You have to go to sleep because you have to get up incredibly early in the morning. I think I spoke three times in a under a six hour period. And then when my Were you there at lunch when I spoke then or had you left by them?

Jeannie 1:06:42
Yep. No, we were still there. Okay, so

Scott Benner 1:06:43
I spoke at lunch. They took me off the stage. I grabbed my bag. Literally they jam me in a car drove me right to the airport and dumped me out at the departure thing. Yeah. And so I was just by the time I sat down on the plane, I was like, Oh, my God, my head spinning.

Unknown Speaker 1:06:57
So right.

Jeannie 1:06:57
I think you had mentioned on Instagram or something. It's gonna be a whirlwind trip. I don't I can't hang around very long. So I knew you weren't gonna I know. It was a quick trip. So I didn't expect to like a long conversation. I

Scott Benner 1:07:08
told them. I told them, they asked me back. I said, I really I hate running out like that. Like I really do. I always try to make sure that isn't the case. But my son's birthday. And his very first college baseball game was the next day.

Unknown Speaker 1:07:21
Oh, fun. Yeah. So I was running back home for that.

Jeannie 1:07:23
Yeah, no, the whole event was great. ever done it like that before. And we both really enjoyed it. And we'll do another one. That shop

Scott Benner 1:07:31
I thought I thought very nice. I didn't the one that I think of is the sort of the crown jewel of these things at Southwest Ohio. We do an amazing job. But I thought Arizona did did a really splendid job. It was laid out well paced. Well, you know, it was it was really great. We're gonna do another one. By the time this comes out, I might have done it already. So it won't be worth mentioning. But okay. I really appreciate you coming on. Thank you so very much.

Unknown Speaker 1:08:00
Yeah. Thanks for having me.

Scott Benner 1:08:03
And thank you to Dexcom dancing for diabetes and on the pod for sponsoring the Juicebox Podcast. Please go to dexcom.com forward slash juice box my omnipod.com forward slash juice box or dancing the number four diabetes.com to support the sponsors. Those links are available, you know when you type them in at Juicebox podcast.com right there in the show notes of your podcast that thanks so much for listening. I'll see you on Friday with another episode of Ask Scott and Jenny actually, I think I might do a defining diabetes this Friday. I think it's gonna be a defining diabetes. I don't know. And now I feel like I shouldn't have said anything. I'm panicking. I don't know what to do. I'm just gonna

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Scott Benner 10/3/19 Scott Benner 10/3/19

#267 Ask Scott and Jenny: Chapter Three

Answers to Your Diabetes Questions…

Ask Scott and Jenny, Answers to Your Diabetes Questions

Let’s talk about standard deviation and target range.
Let’s talk about Loop and absorption time to better understand food impact, glycemic index and extended bolus.

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Scott Benner 0:00
This episode of The Juicebox Podcast is sponsored by in pen from companion medical. Please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise. And to Always consult a physician before making any changes to your healthcare plan, or becoming bold with insulin. MDI users, this one's for you. How would you like to live your life less complicated? You can do that within pen in pen is a reusable injector pen that has its own smartphone app. They talk to each other through the Bluetooth. that Bluetooth is magic, isn't it? You know what the app does? I'm going to tell you a lot of battle over the next few weeks on these Friday shows. But for right now, dose calculator dose reminders reporting actually tells you if the temperature of your insulin has gone out of range. Not only that, it connects to your CGM. Ooh, I got you there tonight, an app on your phone that connects to your continuous glucose monitor that connects to your insulin pen. Now you want to know more about indepen don't you? Check out companion medical.com. Welcome to ask Scott and Jenny. In today's episode, I Scott and Jenny Jenny Smith from the diabetes Pro Tip series in defining diabetes. You know Jenny, Jenny works at Integrated diabetes. She's a CDE, a registered pump trainer CGM trainer dietician, she has type one. Her favorite candy is dark chocolate peanut butter cups. And if Jenny was a professional baseball player, she'd be Hank Aaron.

In today's episode of the show, Jenny and I are going to be taking questions from you the listeners. In this episode, we're going to talk even more about understanding standard deviation and absorption times for loopers. Now that absorption time for lupus thing, don't get confused and think if I'm not looping, this doesn't work for me. It's also going to be able to inform you about how to understand your extended boluses. Trust me, it's all about timing and amount.

mirdif asks one interesting journey after we did standard deviation in a defining diabetes. I get this question a lot now. So obviously we there's something we didn't say there. We caused more questions than then

Jennifer Smith, CDE 2:42
then I think I read this one, what three day

Scott Benner 2:45
target for standard deviation? And if you set your targets tightly for alert purposes, will it look like your standard deviation is greater? Will that not affect the value of murder? We did talk about this in the office? Because I've had the same thought. But I won't. Yeah, I'll let me go over it one more time in case we missed something in that episode.

Jennifer Smith, CDE 3:03
Yeah, so standard deviation really speaks to the variance up down. So even if you had your target set, let's say, in your CGM, you have your target set from 80 to 120, let's say a very tight target, okay. But you have this roller coaster that's happening this up, down, up, down, up, down, up down, you know, from, you know, on the low end, maybe in the 50s. And on the high end, maybe up to like the 120s, you're still you're going to have a higher standard deviation, because the variance even within that target that you're still meeting, you're still having a roller coaster. Now the standard deviation is going to get higher. If you have more variance, let's say even if you're your target is that 80 to 120. And you're going from 50 all the way up to 300. And way back down and way back up to 250 and back down, then the standard deviation is even going to be larger than it was with a roller coaster within a target. The aim for standard deviation. I'm always kind of cautious to say we're aiming for a standard deviation of this solid rock, you know, this one number. The lower the standard deviation, the better. That's that's the easiest way to say I mean, if you're looking at a standard deviation of 70, you've got a heck of a lot of variance you do. Your CGM graph probably looks like a roller coaster at an amusement park, right? That's not what we want to aim for. Even within a tight target. You still don't want all of this happening. You want more gentle rolling hills from you know within less or within a tighter range, right? That's going to bring the standard deviation down. So if you have you know, a target range set from 150 to 180. And you're meeting it and your standard deviation is 21. That's a beautiful standard deviation, but your target is leaving you high. Right? So you're doing a good job of keeping things to a minimum as far as excursions, but you just need to ratchet your target down to keep that same low standard deviation. So I hope that makes sense. I'm going

Scott Benner 5:29
to share what we do because it's by no means the rule but it's a place where I've become comfortable with living life and finding a balance. Right. So Arden's target is set at 70. And 120. I'd love to be between 7120 as much as possible, it's not as much a target as it is. alarms for me, like when do we have 120? So I know what to do, right. I love for Arden standard deviation to be lower than it is. But in honesty, I tried just not to go over 40 Like that's like, and that's not great. Yeah, but it's, it's I shoot for more like 35 I try not to go over 40 If you look at Arden's graphs, they're interesting in that 18 hours of the day, her blood sugar is like 80. You know, most of the time, there's two meals that are varying cause a variance Right. And, and she'll jump up usually, it's like 181 60, conventional pumping, I was able to get down a little more quickly. But we're doing now not as fast. But conventional pumping, I didn't have 18 hours of ad that was solid. So in my mind, it's a bit of a trade off, and I'm learning how to do the meals better. I think that you should think about standard deviation more in the context that Jenny put it in. You don't want it to be 70. Not good. Right. But if you're shooting for 20%, or something like that, probably not that realistic. So I've heard under 40. I don't know where I've heard that from is that a reasonable like Mendoza line for

Jennifer Smith, CDE 7:13
under 40? Absolutely. I mean, if you're really it, I usually with the with the people that we work with trying to aim for, you know, the 30s or without consistently running just way too low with little deviation, the 20s can be great, as long as like Arden is kind of hovering at that at with little deviation. Great. That would be awesome. You might be in the 20s. But you know, 30s is kind of where we aim. Overall, with a little bit lower or whatnot. Depending on what situation in life you might be at two, with the women that I work with through pregnancy, we aim lower, tighter overall everything.

Scott Benner 7:55
Let me give you an example because I'm looking at a live grant for art and for 24 hours, right? So in the last in the last one day Ardens a one C has been 5.8 with an average blood sugar of 119 that put our standard deviation at 42. Now if you go out over 90 days, Arden's averaged a one C is 5.6. Over 90 days, her average blood sugar's still 115. But her deviation will probably go up. It does. So it goes it says 45 Over the last 90 days now we are still learning some things and so we have some more prolonged blood sugar's but for instance, in the last seven days, her standard deviations 38. Right. So as I get better at it, you know, over the last 90 days, because you know of this loop thing, you know, you see it come down, I will get the deviation consistently under 40. I think it's going to be more consistently like 35 Once I figured out the meals, but then, you know, I think Jenny's Right. Like once you have the tools in place and things are working. I see standard deviation not as a target. I see it more as See, I don't want to call it a report card, because I don't mean it like that. But I think of that more something you look at later to say, oh, things are getting better, not something right day to day. It's like a comparison

Jennifer Smith, CDE 9:19
almost to say this is where I was this is where I am now. Oh, it looks like it has improved.

Scott Benner 9:26
I would look at if you're looking day to day, I just look at average blood sugar, and I try to keep it lower. And then I look at at deviations like high high deviations. Obviously I don't want a low blood sugar. So I don't have a lot of problems with lows. But I don't want to see big spikes that lasts too long or big spikes. Right. So Meredith, I hope that answers some question and then I'm about to tell you something about in pen. And I think I should first warn you it's possible the information could blow your mind. So I don't know what you want to do put a hat on or hold your hands in the side of your head or something like that, but When you Bolus within Penn say you're having some food, right? And you look at your plate and you're going 10 times, you decide that's 35 carbs, you go into the in pen app, tell it 35 carbs, and it tells you how much insulin to inject, right? Hold yourself tight now because the here's the rest of it. Now pen users, no, you have to prime your pen a little bit. So you prime the Impend, and then dial up the insulin that the app tells you, let's say it tells you a 3.5 units, you inject those 3.5 units, the in pen actually can see the difference between the prime and the 3.5. And it doesn't. So you know, I'm saying like, when it's calculating how much insulin you have, it's not saying like 3.5 plus the priming amount of insulin it know, how does it know? The fascinating, right, like just boom, I don't understand. I mean, for a pen user, or somebody who's doing injections, this is an incredible leap. Your insulin on board is being kept by an app on your phone. And it can see the difference between the priming of your pen and the Bolus. Get out of here. You obviously need to know more companion medical.com. There's links in your show notes at Juicebox Podcast comm. And one more thing, starting I think next week, maybe the week after these ads are actually going to be a conversation within pen user and world champion, paddle boarder, Fiona wild. Fiona is going to tell us what she loves about it. And it's enough of me telling you what I can, you know, read in a PR kit. Let's hear from a real user. I'm wondering about carb types, oh, entering into a loop. I get confused about what to put when I'm eating a combo meal. For example, what if I'm having pizza and fruit or a burger and veggies or, you know, like yogurt fast carbs plus protein? She said I thought maybe since Jimmy was a dietitian too. This might be something she can help decipher how to Bolus for different combinations. So what Matty's bigger question is and how this will work out for the rest of you is she's really asking about absorption time, I think in loop right, to

Jennifer Smith, CDE 12:15
an glycemic index to a conventional pump system. Yeah, in game

Scott Benner 12:19
conventional pump system, it's going to be glycemic index. And the idea of extending boluses or temporary or something like that. So it's, it's crap, slightly different tools, same reason. But to give people context, you don't listen, who don't use the looping system, you will tell the loop Hey, I'm eating 35 carbs now. And then you have to tell it how long you expect it to be in your system, how long you expect it to take to absorb is that one hour, 30 minutes, two hours, three hours, like that kind of thing. If you get that absorption time wrong, when you put the setting when you put the carbs in the loop, it really big causes a lot of high blood sugars when you get it wrong the wrong way. So do you have any thoughts on this? Because I'd actually love to hear them. I'm gonna sit back and listen like a listener for a second.

Jennifer Smith, CDE 13:03
It's a very good question. I think that the icons that are within the fast moderate and slow groupings, if you are a looper and using them are defined by like a glycemic index nature, right there fast ones are going to get absorbed pretty quickly loop says they're two hour moderate or like a three hour really slow, which would be like high fat, really high protein kind of meal would be a slow absorption, right? icons like a lollipop, a taco or pizza. Okay. Now, most mixed meal, she brings up a good question. Most mixed meals that are a content of carbohydrates, and protein and fat and healthy fiber. Good example being something like grilled chicken, steamed veggies, and maybe like quinoa or brown rice or something like that, right? That's a good mixed meal, a three hour absorption would be a good place to start. It's mixed. You've got a little bit of everything. Now, on the flip side of that, let's say you have like a thumb size of grilled chicken, one broccoli spear and a plate full of brown rice. Hmm. Question time there is based on the content, right the content but the portion that's the glycemic load. It's not only glycemic index, but it's the amount if you've got a plate full of high index carb that you're eating, very minimal little other things that's no longer a combination meal. That's more like a two hour that's like it's fast now rice is as an example in this can be a can be a bad example because some people's experience with rice can be longer impacting same thing with pasta. Some people get really quick impact from pasta some people get really like long drawn out. And I mean if I went into it further, some of It has to do with cooking method and again what you eat with it and whatever. But in a simple answer, most combination meals that are not heavy simple carb should be about a three hour absorption for our absorption would definitely be those Merle meals like she's saying, let's say I'm eating a big old cheeseburger and french fries but I'm also having an apple on the side, that's still a fairly long digesting meal. A trick or a tip that might work it let's say you're eating the apple First eat the apple, put it in as a 15 gram you know kar Bolus absorption two hours. And then when you go ahead and Bolus for the rest of the combo meal, or go ahead and rest as the rest as a four hour absorption. That way, you're kind of addressing both types of food and the way that they may be being digested because of how you've kind of eaten them. Whereas the apple at the end of the meal sitting on top of the burger and the French fries and whatnot. Group it in and to for our absorption.

Scott Benner 16:10
I was gonna I was gonna say to rice so at home. I only use a basmati rice. It's okay, and that does not impact Arden nearly like if we were to go to a Chinese restaurant, she was just going to grab like white rice, right? It's just it's easier. You know, bread with no high fructose corn syrup. Great way to cut yourself a break. And pasta, I use dreamfields It does not hit Arden nearly like other pasta does. Both in intensity and time. So there are sort of ways to like cheat around it with certain foods and what you said about about cooking methods I just made I just made another another note for myself about something we could talk about in the future. Because that's really interesting.

Ask Scott and Jenny was brought to you today buy in pen from companion medical, please go to companion medical comm or click on the links in your show notes of your podcast player, or the ones you can find at juicebox podcast.com. For more information. Just think about what it would mean if your insulin pen could keep track of your insulin on board and so many other things. Just like a pump. The impact is fantastic. It's like that little train that just keeps going get any mean climb and Chugga chugga chugga that thing you don't I mean, it's like no stopping us. Now that's not the train. But if the train could sing, you know if the little engine that could could sing I imagine it would sing ain't no stopping us now. What would that even sound like? I'll leave you with that thought. As it fills your head all day long and torments you. You know what? That's not fair. You need to get that out of your head. Do this instead, think about this companion medical.com with links in your show notes for juicebox podcast.com

About Jenny Smith

Jennifer holds a Bachelor’s Degree in Human Nutrition and Biology from the University of Wisconsin. She is a Registered (and Licensed) Dietitian, Certified Diabetes Educator, and Certified Trainer on most makes/models of insulin pumps and continuous glucose monitoring systems. You can reach Jenny at jennifer@integrateddiabetes.com

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Scott Benner 9/30/19 Scott Benner 9/30/19

#266 Whatever You Are, Be a Good One

That’s an Abraham Lincoln quote…

Lincoln has type 1 diabetes, heart issues and a good mom.

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Scott Benner 0:00
Welcome, everyone. This is Episode 266 of the Juicebox Podcast. Today's show is sponsored by Omni pod Dexcom and dancing for diabetes. You can find out more about the Dexcom g six continuous glucose monitor@dexcom.com forward slash juice box. You can see what's going on at dancing for diabetes dancing the number for diabetes.com. And to get your free no obligation pod experience kit from Omni pod. That was the link Miami pod comm forward slash juicebox. There's also links in your show notes at Juicebox podcast.com. Once in a while somebody has to go over and above to be on the podcast. They use their phone in an airport waiting for a flight. A person has sat in their car in the summertime with the air conditioner off so the sound would be good. Talk to Tommy on his way home from the endocrinologist. But Stephanie, Stephanie really went over and above because Stephanie recorded almost the entire show, before I had a mechanical failure with a computer, and then she started over again, even though her life had gotten crazy. So this one's gonna be a little interesting for you because there's gonna be background noise sometimes once in a while you're going to hear Stephanie driving, you're going to hear children playing in a playground behind her but a law makes sense. And I believe that the situation that Stephanie is in while she's recording goes to her story. All right, I'm going to give you this rich tapestry of emotions and sound and feeling information. Right after I say nothing you here on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your medical plan. We're becoming bold with insulin.

Okay, um Arden's asking me about lunch. I'm sorry.

Unknown Speaker 1:51
She's like,

Scott Benner 1:53
she says, I'm not that hungry. So I'm like, What do you mean by not that hungry?

Stephanie 1:59
I think it's gonna be like the story of our episode.

Scott Benner 2:03
This one's gonna be it's gonna be interesting. So while I'm doing Arden's lunch, let me put everybody's mind in the right place for this episode. I have recorded I think about 280 episodes. You haven't obviously heard them all of this podcast. I've had no mechanical computer failures during the recording, ever. And Stephanie and I were probably about 15 minutes from being finished recording her episode when everything froze up and crashed and did not flash save the way it was supposed to in the way it's set up to. So we're gonna start over again now. But now as we're starting over, we're up on the time where I'm like, Oh, I know. I've set this one will be perfect. I'll finish right doesn't have to do Arden's lunch, and everything. So now everything's a little hodgepodge. In the time, Stephanie has left her son Lincoln, his preschool, where she hangs out outside to help manage him while he's there. And driven home to give the dog groomer, the German Shepherd. She is now headed back to the preschool. Are you back yet?

Unknown Speaker 3:05
Elma,

Scott Benner 3:06
almost 70s goes back to preschool. And then I'm going to finish up Arden's lunch here. And then we're going to start speaking again and we just need to get that out of the way because I didn't want you to feel weird. Like you had to talk like you hadn't said something before. So start over, everybody in on the on on what's going on, and we'll be able to work that way. So, while Stephanie's driving, I'm going to figure out what are the means by it's lunchtime, but I'm not that hungry.

Stephanie 3:32
Not for by

Scott Benner 3:34
And trust me, the answer I'm going to get back here is going to be unpleasant. I said, What do you mean by not that hungry? What will you eat? Maybe? And she said a little, which is a designation of an amount of food. And that doesn't help like snack on I'm not having the sandwich. Okay, well, you know what? I can I can work with that. Let's Temp Basal in grace. Let's go 50% 50 No, I'll tell you why. 95% for an hour, and Bolus right now I'm taking this sandwich out of the bag. Let me think of what's in there. Not many grapes but some blato cookie 12344 units or a couple of little chips five six, not the sandwich banana 7890 I'm gonna say I'm gonna do 11 units 70% now, the rest over Turn on any red Tell me when she's done eating. Tell me when you're done eating.

Unknown Speaker 5:06
What are you just gonna polish your half of what you would

Scott Benner 5:10
know. So there's more going on than you know. So Arden left this morning. I said, Boy, this day really is messed up is Arden left this morning I said, Hey, you only have 25 units of insulin left in your pump. So it'll get you to lunchtime, which is right now. And what I said was we'll be able to Pre-Bolus with your old pump, I'll be done recording the podcast and I'll come over we'll swap the pump out. And and you know, we'll, we'll keep going. Instead of that happening. Please take a moment to visit dancing for diabetes.com dancing the number four diabetes.com You can also find them on Facebook and Instagram.

Unknown Speaker 5:50
Instead of that happening.

Unknown Speaker 5:53
Luckily, I guess

Scott Benner 5:55
artists to school and decides that it's muffin day chocolate chip muffin day.

Unknown Speaker 5:59
Uh huh.

Scott Benner 6:00
So those muffins are like crazy that they have the school. So I had to do a really big bolus just for the muffin probably like 12 units in total. So we did that was two hours ago already. And so we went over and change the pump A while ago. So we don't need the we don't need a new pump. Now she has a new pump

Unknown Speaker 6:21
on the break.

Scott Benner 6:22
But she's a little I can't tell if I'm having trouble getting the pump site going. Or if it's the muffin. So she's like 150 and kind of stuck at 150 right now. So in a second I'm going to find out because the muffins pretty much gone at this point we're gonna find out if this Bolus doesn't get her going in the right direction, then it's a different issue, but we'll run it Yeah. And I don't think it's that way. I liked where we put that pump. It's and it's doing well. We've been using it and having luck. I just think that it was a new pump on top of an incredibly Carbo rific. muffin was probably that was bad timing. I'm honestly thinking keeping it at 150 is a is a hell of an accomplishment, actually.

Stephanie 7:03
Right? Yeah. Lincoln steady at 116 right now. So let's see if that juice bot that juice box catches up 10 minutes.

Scott Benner 7:11
Do you think he's gonna go back up?

Stephanie 7:13
Oh, yeah. Because he he went he bought, like starts falling he falls fast and hard. And so, um, there's many times where we've corrected and we've gotten really dangerously low, like in the 30s. And then it's just like, a struggle to get him to stay at 80 because I think it's really hard on your body to like recuperate when you're

Scott Benner 7:36
bouncing. It's tough for sure.

Stephanie 7:38
It's tough, hard, but you know, with him being so little to get his body to like balance back out. And and he doesn't talk so ask him how you feel doesn't really get anywhere. get us anywhere? No, yeah, for some reason Lincoln has chosen not to talk.

Scott Benner 7:54
Oh, so let's let's we're gonna reorient everything ready. Sorry. Everyone, this is Stephanie. Stephanie. Hello. Stephanie has four kids. her youngest, Lincoln has type one diabetes for about a year and a half ish. He has other medical things going on too that we're going to talk about for a second. Right now he's in preschool. And he had a bit of a bit of a falling blood sugar was falling really fast. And you gave him one or two juices for that falling butcher,

Stephanie 8:26
I he was on the playground actually. So I just like popped my head over the wall until the teacher he needed a juice. And she gave him a juice when he was 153 double arrows down because I mainly follow the arrows. And he was 109 double arrows down so I said I think you need to give them another one because I don't know if he was running around a lot on the playground that was like with the bazel that probably kicked in at the same time causing him to

Scott Benner 8:53
no job now he's 160 and stable but you're expecting to go back up and you're scared to put in again So know that at the moment.

Stephanie 9:00
Yeah, like I won't give them any influence right now. But if the arrow angles up, I will I just kind of I feel like a stalker at the school sometimes so they just hang out in the parking lot.

Scott Benner 9:12
Now here's my assumption, right? You're trying to give Lincoln some like normal thing he's gonna go to preschool and have a little bit of socialization and play and have fun and do the things you would have done with him had diabetes not come up? Correct. But you don't have enough comfort with they obviously they're a preschool they're not you know, they don't know.

Stephanie 9:32
In Arizona, the public schools offer preschool

Scott Benner 9:36
Okay, so it so it but you just don't feel comfortable with their knowledge about diabetes.

Stephanie 9:41
So he Yeah, so he's in a developmental preschool because he doesn't talk and so he there's a lot of AIDS and you know, great teachers and staff there, but because it is a public K through fifth preschool or school, they have a nurse on staff, but the nurse and I did not have A good start to him coming on the school campus. And so our last conversation was not nice. And I basically told her that she needed to stop talking to me and that she never had permission to touch my son or ever give him insulin. And even if he's an emergency situation, you are not allowed to touch him and just call 911.

Scott Benner 10:24
What what I'm so interested

Stephanie 10:26
with the ending of our, our last conversation, and since then she's quit.

Scott Benner 10:32
Did you Okay, assuming it wasn't you that made her quit, but she was probably having other problems as well. What led to her? What led to you guys having that conversation?

Stephanie 10:42
Until when Lincoln Lincoln started school in November, because when they turn three, the day after they turned three, and they can start school. I planned on staying at the school Never did I ever intend on like just leaving and be like, I'll be back in three hours by. Um, so I just like lightly touched up with the nurse like how I treat him, which is kind of like I, I just kind of treat as needed. Because he's so little, he doesn't talk and you know, the amount of food that he eats is, is, you know, like what a bird eats all the time. He was he was 89 and steady when I dropped him off the first day, but I was like, and they were about ready to go on the playground. So I was like, I'm going to give them some applesauce before he goes on because 89 unsteady on a 301 playground is a little low for me. And I don't know how he was going to respond to being at school, right? So I was watching it with the applesauce. And I figured maybe he brushed it like 150. And it went to like 190 200. And then like, before I even knew it. He was like 400 like high until the oh my gosh, this was so fast. But I think it was an adrenaline that like kicked in new new thing, big playground, lots of kids who's running around screaming. And that was like my very first experience with him being in a school with the gentleman and I didn't know. And so I told her that I'm gonna go give them a half correction. So I just gave him one unit as like because they This is a false rise. Like he's going to come back down. And she, so she was like, freaked out that he went that high. And I think well, you wouldn't have known this. If he didn't have his CGM on. It's just the technology we know. So now we can fix because I'm pretty sure any other type one diabetic, you know, they either rise or fall with adrenaline, you just don't see it. And so that was the day. Basically it kind of like I took them home. And as soon as we got home, he was 130 unsteady. Like it was just an hour that it took for him to level back out because it wasn't food. It was the adrenaline. And I wake up at six o'clock in the morning with this voicemail, and it was nurse Cathy, that I wasn't allowed to bring Lincoln back to school, that she's uncomfortable with him being in school with those blood sugars, and she feels that I don't give him adequate care. Oh,

Unknown Speaker 13:09
uh huh.

Unknown Speaker 13:10
Because though we,

Stephanie 13:13
because he jumped up,

Scott Benner 13:14
but you're saying that the applesauce was so like, so he's at 89 you put the applesauce in the applesauce has no time, even though it's like, like sugar water. It the jump was so immediate that you thought this couldn't be from that even know. Right. Right. Okay. And so you got to see something else you try it you addressed it sounds like you did well with it and came back to a nice number. So yeah, so she saw something she didn't understand and decided that it was your fault that she did that she didn't understand it. I got Yeah,

Stephanie 13:46
which I never gave her permission to. Like, I was like, I'm not gonna let just hand this all this stuff over to you and expect you to understand. Like, I'm gonna stay here, I'm gonna, you know, treat him and make sure things are fine. Like, I'm not gonna set my son up for failure, the first day of preschool.

Scott Benner 14:03
And I'm sorry, was it your intention? This hasn't been long, right? Like, how long ago was this?

Stephanie 14:09
This started like November.

Scott Benner 14:11
Okay, so a few months ago. So what was your intention back then? To find? I don't know, like some sort of like a, like a nice balance with this, this nurse and to eventually for you to not be the person who's sitting in their car, or were you always thinking I'm just gonna stay here and take care of this. What was your plan there?

Stephanie 14:29
Well, my intention was like after, you know, giving them brief, like education classes on how to handle it. I would just stay close, like, I live like seven minutes from the school and there's grocery stores and stuff. So I would stay really close if needed. Because he only goes to school for two and a half hours, three hours, like not a lot was going to happen. But if I would call and say I think he needs a bolus, give him X amount of insulin, I would just expect them to do it. But it just didn't work out that way. And so that morning, I actually went to the district office and sat there. And I was like, I'm not leaving until someone talks to me like, This isn't how this works. Like, she can't tell me I can't bring my kid to school. Like he gets adequate care. Like he has a good a one. See, he's three. And this was his first day I was I didn't know how he was going to respond. Like, it's going to be trial and error for a few months, because I don't know how it's gonna work. And so basically, they said, you know, they're going to talk to the nurse, and they're going to work it out with, you know, the districts because they've never had a parent that didn't want to follow doctor's orders. Is what they told me. And because I don't want them to follow the doctor's medical plan.

Scott Benner 15:50
And so what happened, because I think this happens to a lot of people, the doctor gives you a pretty basic like 15 carbs, 15 minutes correction, like those, like, you know, kind of just, you know, basic ideas. And you went into look, we have a way we do this, and I, you know, I'd like to make it happen here. And wow, that wow,

Stephanie 16:08
the I'm sorry, the medical plan is like when you go to any doctor, you only correct every three hours, right? You don't stack insulin. And if he's low, you know, you give him you know, 15 carbs, you wait 15 minutes, which we all know is either too much or like it takes longer than the 15 minutes to respond to the 15 carbs, depending on what it is. So they had another executive meeting and it was me the nurse and two directors in this meeting. And during this break that I didn't take Lincoln the school, the nurse called his endo, and had like a very detailed conversation with the team at the hospital and I was really offended and I felt very violated by that. Because I was like, the doctor doesn't care for my son. This endocrinologist has never given my son a shot of influence. He has no idea how my son responds to insulin on a day to day basis. The endo doesn't tell me how much to give my son I make that choice, not the endo. How dare you guys have a conversation with the doctor without me on the phone? He doesn't know anything. But I think they take that as me being like, like disrespectful or argumentative towards the doctor's care. Yeah, because I didn't, I was like, that's not what we're doing. You're not going to give my son and son and that was never like your net. And she wanted a vial of insulin on at Campus. It's like, no, he has a parent. I'm not not giving you a vial of insulin.

Scott Benner 17:46
You know, it's funny. Six months ago or so, our dad started getting treatment for like a shoulder like a chronic shoulder injury. And, you know, there was some getting set up with a note for Jim, like, she goes in the gym, she just doesn't kind of use her right arm while she's in gym. She said to me the other day, she's like, you know, playing one handed. I'm an incredible wiffle ball player, I was like, congratulations. But But in the beginning, I guess the nurse didn't understand the orders completely at school.

Unknown Speaker 18:16
Oh,

Scott Benner 18:18
and I get this like, like phone call from her. And she's like, Hi. I didn't quite understand the orders from the doctor. And I was like, oh, what don't you interested? Because Oh, it's okay. I know people at that practice. So I called over there and got it all straight. I was like, You can't do that.

Unknown Speaker 18:32
I was like, never legally allowed don't like never

Scott Benner 18:35
do that. Again. She's just trying to kind of honestly care what you were trying to do. And you might this bit may have been the most well intended thing in the world. I'm like, you don't call my kids doctors and talk about them. Like, that's not okay.

Stephanie 18:48
And I don't know why people would think it would be, you know, I know mad. And I called the American Diabetes Association, because I wanted to understand the legal rights, like of the school and of my son and as his care like his parents. And they said, because once I dropped my school off on a public property, or like a government property, the care provider, which is the nurse is allowed to call another care provider, which would be the endo to have a conversation about my son's diabetes, it's legally allowed. I was so upset. by it.

Scott Benner 19:25
I don't know if that's, you know, that's fine. Like if that's if that's allowed, legally, it's fine. I still told the nurses like don't ever do that again. Like if I know something asked me. And if I don't have the answer, I will find out for you. But you're not getting involved in this and he knows why that's such an odd leap to make I because you know, I too Is it infers, it infers that you don't understand. So she needs to go around you to the person who really understands. And I think we all know and diabetes specifically, you're very much more likely to understand And then somebody else, you know, you know

Stephanie 20:02
that Yeah. And that's what I told her. And so this last, you know, this meeting, she told me that basically, I had only been doing this for a year. And then I really probably didn't understand it. And you know, she had been doing it longer, and which she was a cardiac nurse. So it's totally different than a endocrinology appealed. And I basically was not very nice. And I was like, I think you just need to stop talking. I'm going to stop you right there. And don't ever touch my son, ever. He's never, you're never allowed to give him insulin. You're never allowed to do a finger poke on him. I will, I will stay close to the school, I will monitor his needs. And if there's ever an emergency, don't touch him and call 911. And that was the end of our conversation. Really? Yeah, no, it was done. Third day of school, never again. And I was really heartbroken. Like, I didn't take them back to school for two weeks. It just like ripped off so many scabs. And it really like sent me in like, not, not a depression, but I was just so offended by the whole process. Like her calling has ended her saying I didn't know what I was doing. Like her questioning the care that I gave my child like it like, like, do you know how many sleepless nights I spend watching this Dexcom? Because I don't I didn't know what it was doing. And I was trying to figure it out and learn and oh, it it really like, put a dagger in my heart for a minute.

Scott Benner 21:31
And by the way, a year with a three, a two year old with diabetes is worth 10 years of being a cardiac nurse and understanding diabetes. I mean, because we all know how well doctors and nurses handle blood sugar's when you're in the hospital to begin with, is that that's probably her idea coming from a hospital setting, which is, like you said, and I yeah, every every three hours will check and you know, as long as he passes out, we're good. And that's you know, yeah.

Stephanie 21:58
And I told her I was like, I lived in the cardiac Grubbs for a year because Lincoln had open heart surgery when he was eight months old. And I told her like cardiac is nowhere near comparable to endocrinology, like diabetes and Lincoln's open heart surgery are in two different worlds like, and and I'm blessed that Lincoln's open heart surgery was was a very good success. And it went well. And he recovered and hopefully Fingers crossed, he won't need another one. But I would do another open heart surgery before doing diabetes any day hands down.

Scott Benner 22:34
It's quite it's because yeah, that's, that's a telling statement. It really is.

Stephanie 22:40
I mean, diabetes is literally a minute by minute or deal. You know, cardiac, at least what Lincoln experienced, you know, we dealt with the lasix and the cardio angio like we didn't he didn't have cardio angio but echocardiograms all all the time and the constant monitoring of his blood pressure and all that stuff. I'd rather do that then the diabetes any day. Yeah.

Scott Benner 23:03
Well, it's a lot. It's a lot of work. And at least there's consistency with some of that other stuff, right? That always open to interpretation, or I wonder how it's gonna go this time. And I do have to say, especially with a smaller kid, the fluctuations are just, they're never ending sometimes. And and they really do test your they test your Will you know what I mean? Like, you're like, Oh, I figured this out. And then it changes, you know, Google. Yeah, right. Thanks. Yeah.

Stephanie 23:30
I mean, then the nights where he's like, steady, and he's like, 130, the whole night. I'm like, it was a miracle. And the next night, it's like, alarms are going off every other direction. And I can't figure it out. And I am afraid to give him too much of a correction. And then as it

Scott Benner 23:44
gets bigger, by the way, like that'll, you know, he puts on body weight and everything like that all gets so much easier. What are your expectations for his speech? Is it something that's new things coming? Or is there like, Is it a physical issue? Or if he's just not ready to talk yet? Or do you not know?

Stephanie 24:01
I really don't know. Like, some my five year old husband is autistic. But he's like high functioning. He can talk and communicate any socializes and he just has more like this and three sensitivity issues. But he was delayed speech as well. So of course, they're constantly checking to see if he has autism, or that's a question that's in the air right now. But I really believe that Lincoln doesn't because his cognitive thinking is there. But I don't know. He just, it's something that he can control. Like, he can't control a lot of things right now, like how he feels or the, you know, the site changes and the finger pokes. Or if, if he's just like, No, I'm not talking.

Scott Benner 24:49
It's an I mean, how, in your estimation, what's the timeframe for you to start getting a feeling for what that is? Or do you know we didn't know

Stephanie 24:58
well with autism? I mean, I knew at a year and a half that something was different. husband didn't talk, but it was more vocal like he made sounds for the things that he wanted. Like he wouldn't say soup, but he would slurp like, I need soup. And like he had sensory issues. So like he didn't want to put shoes on and didn't wear clothes. And like it was more of that combative stuff, where Lincoln doesn't care. And Lincoln can put puzzles together. Lincoln can sit and watch a movie Lincoln can, like do memory and match games. He just doesn't talk.

Scott Benner 25:34
Yeah. So if he was speaking even a little right now, you don't think these questions would be up in the air?

Stephanie 25:40
Yeah, I don't I don't think that they would ask me as often as they do. They think that there's, you know, a sign for autism. If he was saying more words, but he just and he may, he says five words. Ouch. Ouch. It's one of them. When he gets like a site change. Every Blue Moon he'll say No, mom. He doesn't really say dad, he said Spider Man three times. And that was it. And that's pretty much it. Like he just does not talk at all,

Scott Benner 26:08
which spider man got him to say Spider Man was doing the spider verse.

Stephanie 26:13
He was spider man for Halloween. And he said it three times. And then that was it. He never said it again.

Scott Benner 26:18
Well, that yes, we did that. I have to ask was that a moment? Like, oh, he's gonna start talking. And then he just stopped?

Stephanie 26:24
Yeah, I mean, I was so excited. jumping up and down. I'm like, we're gonna, we're gonna move on from this, we're gonna start talking. And that was it. He never said again. I was like you a little brat. So I think he knows how to talk. I think he just is like, What for? And I do think that maybe he's a little delayed from like, all the medical trauma that he's been through, you know, open heart surgery. And then he's had the two procedures last year, and then the procedure this year, and then the diabetes was kind of found in all that mix. You know, his poor little bodies been through a lot in order to survive.

Scott Benner 26:59
And so what Stephanie is alluding to, and it's not fair to her, because we're having two different conversations, one of them it's not recorded one that is but so Lincoln had to have out his tonsils and adenoids. Right, that one, and he had so many cavities, I guess that you he had to be pulled over for a dental thing, right?

Stephanie 27:22
Like, I don't know. I mean, I don't know if it is diabetes related because the dental stuff started before we knew he had diabetes. But he just was born with very little enamel. And so his teeth were just like deteriorating in his mouth. But then we were diagnosed with diabetes, and then the tonsil surgery, and then the diabetes, or the dental kind of got pushed back a couple months. And so by the time that we could get into the hospital and get clearance through endo and cardiology, he had four of his front teeth removed and eight root canals. Yeah, and then we just had another person. Yeah, and he just had another dental procedure two weeks ago. And it's always an ordeal like we're always admitted in the hospital that night before to check a monitor blood sugar. And then, you know, they take him back and put them under anesthesia and do like a deep cleaning. And they did two more work now.

Scott Benner 28:20
So she's Yeah, he has been through a lot. Honestly, he needs spider man.

Stephanie 28:26
Yeah, he needs a spider man and his wife.

Scott Benner 28:30
Well, okay, so I'm gonna try to like revisit this a little for you because Stephanie did something that I think is pretty great. So she found out that that her son needed open heart surgery prior to his type one diabetes. She looked around locally did not find a doctor that she thought was was, you know, the right person to do the job. And tell tell them how you contacted a doctor all the way in Boston and you're way out on the west coast. I like this idea. I want to make sure that I don't forget to mention the ease of use of Omni pod every once in a while and and today's gonna be that day. This past weekend, my family went to visit our son at college. So you know, we stayed in a hotel and you know, everything was a little kind of packed in and rushed around every once in a while you were going from here to there and working out of bags and stuff. So one morning we got up and I said to Arden I said hey, you see there's only like 30 units of insulin left in your pump. We're gonna have to change at some point this morning. But we were going to visit my son was doing some sort of a run or something and we were going to see that first. We thought the pump was gonna make it the answer was gonna make it to lunch, except that my son's event kind of got stretched out which led us to a snack and then all the sudden the pump needs to be changed. Arden changed her insulin pump standing at the back of like the tailgate of my car. And it may be took two minutes. I think that was it. A little cooler with some insulin it took the insulin out filled up the pump prime the pump, suck the pump on, push the button, injected the canula and finished cleaned up. That was it. We literally did it in a parking lot with people streaming by I don't think anyone noticed. That's how quick and seamless the process is. If you want to find out more about the on the pod, you should go to Miami pod.com Ford slash juicebox. And at that link, you can ask on the pod to send you a free no obligation pod experience kit, where you can actually try the pod on for yourself. Now you don't have to try it on standing behind your car in a parking lot. You could probably do that your house. But if you wanted to, you could. And I don't think anyone would notice my omnipod.com forward slash juice box.

Stephanie 30:45
After we were told that link, you know, it's time for Lincoln to start preparing for open heart surgery. We were given two referrals locally. And you know, good old Google. I did a lot of research on the doctors here and just decided, you know, that wasn't the road that we wanted to go. So we picked out three hospitals it was going to be la Philadelphia, and Boston and Boston being number one because there's number one pediatric cardiology Hospital in the world. And so I got just enough digging, and I did some background search and found this thoracic surgeons email and I emailed them and said, Hey, this is my son. He needs surgery. These are the things he needs fixed and repaired. Can we schedule surgery with you? And within like a week, he responded back and he's like, yeah, I have July 13. Open. And I was like booked. And we just hopped on a plane. And we were in Boston for nine days while he was recovering from

Scott Benner 31:48
like Expedia for open heart surgery just now. Yeah, click on this link here. And they'll get back to me with their offer. And then we'll go forward. That was there really is great. It Yeah, it

Stephanie 31:58
was it was. I mean, it was a blessing, because the surgeon actually only had to do a partial open heart surgery. So he didn't have to open his whole sternum. And he was only in surgery for like three and a half hours. And when he came out, he recovered. And I mean, he was only in ICU for like 24 hours. So and then we just went down to the recovery forum hosted ago.

Scott Benner 32:25
How long ago was that surgery?

Unknown Speaker 32:27
July 2016?

Scott Benner 32:29
It's the follow up like for something like that? Do you still have to follow ups? Or is he finished?

Stephanie 32:33
We do know. So what they did, Lincoln had three holes in his heart, one of them being very large VSD. They repaired those, but the biggest concern was he had it's called a muscle bundle. So basically, like it's all these like fiber endings that kind of make like a web inside your heart or consider like a cyst. And it was blocking one of his valves. So they had to go in and cut into the heart, muscle and tissue and remove that cyst and digital app. So the biggest fear was damaging, like the electronic operating system of the heart. And so if they did, you know, dug too deep or missed a spot, I mean, he would have needed a pacemaker. So that was kind of my fear of finding the best of the best that I could find to remove that. But it can always grow back. It could grow back. Yeah, so we get an echocardiogram done, like between 10 months and a year. Now, we just go back to the cardiologist and make sure that, you know, the holes are staying closed, and there's no tissue damage there and that the bundle isn't growing back.

Scott Benner 33:44
Wow, that's a that's a lot to go through. And then how long after the surgery, did the diabetes pop up?

Stephanie 33:52
Um, so we celebrated a year, you know, celebration with Lincoln surviving the open heart surgery. And then kind of immediately after that, he started just getting like not acting himself and kind of being sick. And so that was like, I'd say, July, August. And then in October is when I think the DK said and he was really sick. And so, the week of diagnosis, I actually had taken him to five different doctors, and just pretty much begging them to look at my son. I took them to the cardiologist, I took them to the EMT, my pediatrician even took him to like quick care. took him to one other doctor. I couldn't I can't think of who it was, but I was like something is wrong with my son. He's vomiting. He smells funny. I'm like smell I would put his face in their nose and I'm like, smell him. He smells funny. He had this really bad yeast infection which we had never experienced before with him. And just all the telltale signs like and nobody caught it.

Scott Benner 34:58
Yeah, but but now You didn't know what those signs were you just know. really sick. This is obvious somebody told me What's wrong?

Stephanie 35:06
Yeah, I thought I really thought because he was scheduled to have the tonsils and adenoids removed that it was just a really bad like strep infection or some type of infection with the tonsils and adenoids because they were so big. And he kept having the chronic ear infections. And, but then I started getting scared. That was that infection affecting the heart. And so that's why I took them to the cardiologist. And they did like, you know, their little scan and they're like, No, he's fine. There's nothing wrong with the heart. And so actually, Thursday night, I was sitting on the couch with them after he just threw up all over the house. And I got, I got him a smoothie, which was probably full of sugar. But because his tonsils were so bad, he was choking on everything. So I thought, well, at least if we get you a smoothie, you'll get hydrated and get some calories in you because he had lost so much weight. And I was just sitting there and I had this like, inner voice. Tell me, Stephanie, this is bad, and your son is going to die if you don't get him help. And I kind of like brushed it off. And then the next morning I woke up and he was panting, his breathing so heavily. He couldn't he stood up and fell down. And I was like, Oh, no. So I immediately like just threw him in the car. And as I'm driving to the hospital like that, just sheer panic is coming over me again, because I'm like, Oh, please don't be the heart Even though we just went to the cardiologist. And how am I going to get him to Boston for the surgery, and I get we, once we get to the hospital, we're automatically like, put in a room because of his history. And the PA Watson and I told her like, I need you to listen to me. My son is going to die if you do not help me. Something is wrong with him. He smells funny. So I go through all these symptoms, and it's vomiting but no fever. And you know, he's been on antibiotic and nothing's helping. And she's like, Okay, well, let's run some blood tests. And we'll see what that says. So the first panel came back. And at this point, we had been there for five hours, and he had been fasting. And she's like, well, that panel came back fine. And, you know, there's really nothing so it's just he probably just needs that surgery to have his tonsils removed. And I was like, No, like, You're not listening. Get another physician in here. I'm not leaving something is wrong. And she's like, Okay, well, let's wait for the second panel to come back. in about five minutes later. There were people just like wide eyed buzzing around the room. And they're like, we're gonna do some more tests that didn't come back. Right. And I'm like, and I keep asking like, what do you mean didn't come back? Right. What What's going on? And, you know, your immediate immediately thinking horrible things. I'm thinking cancer, I'm thinking like, some infectious disease, like I never once did, I think diabetes until they checked his blood sugar. And it said, 310 and I kept looking at them like, what does this mean? Like, what is a normal blood sugar? What are you looking for? And, and then like a whole team of like, official, like big time doctors came in, and they're like, your son is a type one diabetic. And we're emitting into ICU right now, because he's NBK.

Scott Benner 38:06
That's it, you got a double extra stress, he died.

Stephanie 38:13
I will never forget that moment. Like, I was hyperventilating. My husband had just gotten off work. So he met me there. I gave Lincoln to my husband. And I was like, I'll be right back. And I walked out in the parking lot. And I vomited. And I just like fell to the ground, because there's just like, we just like survived open heart surgery. And like, we just did all this stuff. And now this like, it was so like, it knocked me to my knees, because there's a cow, we gonna deal with this. And that was Friday. And on Tuesday, my son was diagnosed with autism. So in one week, like our whole world, just like crashed, even even going back, it's still super emotional, because, like, we're just spinning out of control.

Scott Benner 39:01
Everything else going wrong at the same and at the same time. So you're telling me that a year after heart surgery on a Friday, you find out first of all, you you go, you're you're running the doctors, begging them to help nobody's helping you finally say to yourself, alright, I'm going to go to the hospital, the hospital, the hospital tells, you know, the whole time you're there, you're thinking, this is something to do with his heart. This is really bad. You know, it's taking you back to the other spot. They tell you nothing's wrong, you persist. They come back, they say diabetes. And then and then 1234 days later, your other son's diagnosed as having autism.

Stephanie 39:38
So my son was diagnosed autism four days prior prior.

Unknown Speaker 39:42
Oh my god. Hmm.

Stephanie 39:43
So on a Tuesday, my son was diagnosed with autism. And we kind of already knew like, it wasn't a secret but just to have that like it verbally said to you, your son has autism and has ADHD like he has like a bunch of diagnosis. And so that's our own They're sudden, and then on Friday, you know, meanwhile we're dealing with the autism. You know, Lincoln is like dying. Like there's he's just deteriorating minute by minute. And so find him in the, in the Children's Hospital and they say that to us. So yeah, it was. It was a rough. I think I walked around in like a cloud for a good month or two because I just didn't know how to how to handle life grieve and process all this stuff going on.

Scott Benner 40:30
Well, I think it's even more impressive that you figured out the diabetes on the heels of the autism because you could have easily said to yourself, I you know, I there's no more here like, I can't keep looking for problems in my life. I have enough and and, you know, but I guess he just was so bad off at one point, you're like, like, I don't care what anybody is saying. He's obviously dying. Yeah.

Stephanie 40:51
Yeah, no, I knew he was in a bad play. I mean, just looking at him. You know, like the panting and he couldn't hold himself up and like, everything if he bone was like, protruding out of his body. And, and I mean, it was very obvious that he was gonna die.

Scott Benner 41:08
Remember Arden, like those in the hours prior? I remember Arden, prior to diagnosis. I remember her like when she was walking like that feeling like she was dragging herself. Like there was just a forcefield in front of her like, she could barely get herself to move forward. And then she'd stopped frequently while she was walking like this was just too much for now. Yeah, it's really terrible. But you are, I don't want to say but because it's, that's not something you just give away. I don't think emotionally and move forward. But are you having any luck kind of moving past that part? And?

Stephanie 41:41
Oh, yeah, I mean, every time it you know, I think that definitely is, you know, ulimate that I don't think I could ever, like get over like being a parent. Like, there's a couple moments in life that you just look back on that just, you know, knock you to your knees again. But we're good. Like we've traveled Lincoln's been to Mexico, we go to California, I have taken him on a couple trips. We've definitely mushed forward.

Scott Benner 42:08
Please don't forget to visit dancing for diabetes.com. And check them out on Facebook and Instagram. That's dancing, the number four diabetes.com.

Stephanie 42:22
I kind of hit that rut. Nothing was really happening. And I was just really struggling in the summer because I couldn't figure out how to manage diabetes with our hot summers and putting him in the car when it's 110. outside his blood sugar would tremendously drop. I couldn't figure out the pools. And I was just like, so bummed. I'm like, Okay, this is not as easy as I thought it was going to be. And so I just kind of hibernated in the house. And then I took a weekend to go hang out with my best friend in San Diego. And as I was driving there, I was like, I'm going to listen to a podcast, and then that's when I pulled up your podcast, and it just kind of re charged me laughter I listened to one episode, it's like, oh, my gosh, I got to go home, I could fix this. I know how to do this now. And so thank you. Yeah, it really, it just kind of feels the fire, right? Like, I just needed that community of friends. And and even though you're, the people that you put on, aren't my friends, but it really feels like I have a team supporting me and people's ideas to bounce off.

Scott Benner 43:26
That is very nice to view to say, I appreciate it. A lot of people think their stories aren't valuable. But I'm like, eventually your story will be part of the fabric of why people listen to the podcast, and they will get something from it, you know, and there's no way to you you kind of don't get to decide what your story is to somebody else. And you just putting it out there is the best way to go. I'm I'm thrilled that you found it. And then it's been it's been this valuable for you.

Stephanie 43:51
Yeah, like, I feel like, you know, we were through because he had those two procedures really early on in the year last year, right after being diagnosed. And so every procedure changed, his insulin needs drastically. And so it would take like, I don't know, three weeks to figure it out. And then we get in a good spot. And then he would see the procedure done again. And so then or he gets sick or, you know, something like that. And so it took me a while. And so when I found your podcast, I think is a one fee was like 9.8, which was a lot of work on a little kid that doesn't talk with all of this stuff going on. And and we just had an endo appointment in February and you 7.5 so I'm pretty proud of it. It has been. Yeah, it's been a lot of hard work. And he just had his procedure in February too. So I mean, I want to get them lower, but I think it's hard with a three year old who doesn't talk and you give them food and he falls asleep. So first,

Scott Benner 44:50
let's say first of all, two things. That's a great number. You know, for anybody, not just for your son who you know is young and doesn't talk and you know, the That's just that's a fantastic accomplishment. So, you know, having a goal of being lower, is really going to be about you making like fine tuning adjustments about him growing and getting bigger, you know, being more communicative, like all the things that it's going to take, you know, to start, like cranking that number down. But you're, you shouldn't feel like, you shouldn't feel like, wow, I need to get lower you should, you know, I think that I guess the way to put it as is that people always say like, I want to lower my eight, one, C, and I think no, you don't really you do, but you don't. That shouldn't be your goal, your goal should be to make small changes that keep your blood sugar from spiking, and from falling lows, that you don't have to re add food. Like when you do that, you get better and better at it as time goes on. And your agency as a consequence of that comes down. Like I always tell people, I never think about rnc one say, No, no, no,

Stephanie 45:55
I yeah, and I understand that part of it. But it's just kind of like, validation that all your hard work is like it's actually showing and it's bettering his health, like,

Scott Benner 46:05
I feel good, when we get the number, don't get me wrong. But in the day to day, management of Arden's like blood sugar, I don't think like I have to do this or hurry once he's gonna, like be something I just think of, you know, each, you know, a spike by spike below, just over that blood sugar is trying to go up. Now I'm gonna take care of that, you know, we're, like, we talked about at the beginning about doing a pod change over top of a carb heavy thing today, and now aren't eating and I'm still being aggressive, and we're holding their blood sugar at bay, it's at 180 now, but now she has a full meal in her room, you know, I'm not gonna, I'm gonna do my best to not let it go higher this week, we just added more insulin a moment ago, you didn't hear it happen, but we're gonna keep pushing until we can get it back. Get our level again. And I'll never think about this moment ever again, you know, like, it's gonna keep going forward. And if you keep making those addresses, that's how you get to where you want to be. You know, I know there are always people who listen and hear art and say, one see is lower, and think that our blood sugar must be constantly, you know, like, 85 or 90, and it's just isn't the case. It's 180. Right now, it's something, you know, timing of something just didn't go well, for us today. We're gonna get it out as fast as we can. That's it

Stephanie 47:19
right? And and I always feel like people always want to know, like, what's his number? And I'm like, well, it's number one, I could tell you, but in a few minutes, it's going to change because we're going to go outside or he's going to eat and like, it's never about just what it is. At that moment. It's looking forward and making sure that in an hour, we're still going to be able to keep it balanced, or, you know, make minor adjustments, because it's not always the number that I'm concerned about. It's the direction of the arrows to that I really, I really follow.

Scott Benner 47:49
Absolutely. There's a Yeah, I mean, it's it's the speed and direction of your blood sugar. And how are you keeping it where you want it to be?

Stephanie 47:57
Yeah, and I think every, like, person's needs are different. Like, we just had an endo appointment, which I mean, I don't really understand, though, I heard you saying you don't know what the whole point of them is. And I kind of feel that way now right now. Like we go and he's like, you do this really hard. What you do is a lot more work. And I and I was kind of taken back because it's like, well, how else would you do it because if I only bolus Tim every three hours, like he would be all over the charts, but because I give him those micro boluses. So for him, you know, anywhere from point 10 to point five, you know, just these little bits, every you know, throughout the hour, like I'll do it two or three times as he's eating or as he's playing, you know, on the needs of adrenalin or the hormones or, and I'm like, but how else would you do it and I'm fortunate enough that I I work evenings so when I go to work my husband you know takes over so we don't really have a lot of caregivers and my father in law does it and we do have some babysitters that help and I don't allow them to give insulin but I always set him up kind of for success when he's not when I'm not with him and he's alone with someone I mainly just at that point, you know, have them treat as needed with lows.

Scott Benner 49:15
Can you believe how much help the Dexcom g sixes in Stephanie's life? between being the three year old and preschool and surgery and everything else that happened? Just amazing. You heard her say earlier. Most people's blood sugar's probably jump up the 300 and no one ever knows. How long do they stay there hours till somebody checks again. But you don't have to live like that with the Dexcom. The Dexcom g six continuous glucose monitor can tell you instantly that your blood sugar is not reacting the way you would hope

Unknown Speaker 49:47
or

Scott Benner 49:48
it can tell you that it is reacting the way that you hoped and provide sort of a comfort and a calm and ease and an ability to forget about diabetes for a while. No matter where Dexcom is helping you in your life. It was We'll help you. Right now today. Arden has a cold, it's just a head cold. It's nothing crazy. But she's requiring more insulin. And we've been able to let Arden live her life normally today. And by that I mean food, lunch breakfast or inside pancakes today already. Today off from school, she's downstairs now working on a little lunch. And even though she needs a lot more insulin today than she normally would her blood sugar's 140, I'm looking at 146. And it's coming back down a little bit. But it hasn't gotten any higher than that. Now, if I would have just used the regular amount of insulin that we normally use in these scenarios, her blood sugar would be much higher. But Dexcom told me, Hey, this isn't working. And I was able to readdress, I implore you, check it out. dexcom.com forward slash juice box, look into the G six continuous glucose monitor. That'd be the best thing you ever did. If you can't remember the links, they're also at Juicebox podcast.com. I can't agree more. I mean, honestly, to call it harder, I think what they're trying to say what I think that they're saying harder and meaning you're involved more often. But being involved, being involved less often, to me is harder, because it's difficult for me for my kids blood sugar to be 300. And then they'd be 50. And then to be 300. Again, like that's hard.

Stephanie 51:23
You know, and that's what we were experiencing doing that every three hours, like, you know, he'd be 300. And then I give him a unit and then he would be 50. And then I'd be treating the 50. And then we'd be 400. And it just never was like even in even if it's even in 200 you're learning to coast. Right? So if he even is what we're aiming for not this spike all over the place. And that was that? are the keys never balanced. I don't even know what you're talking about. Like to me never in a good spot.

Scott Benner 51:53
Yeah, right. To me. It's much simpler, and less, you know, taxing on my time and my thought to see a 130 diagnostic. Oh, let me just bump that back again. Anyway, oh, and then it would be to just put in insulin, close my eyes. Hope for the best test again, three hours from now let's see that because it throws you into that power every time you're like, Oh, geez, I did what they told me to do. And now his blood sugar's 300. And what am I going to do, because he's 300. But he's gonna be hungry again soon. So and you get into that horrible just that rollercoaster ride, which really is no better way to say it like your high and your low and it's up and it's down your stomach and your throat and your heart and your stomach and you like it's it's always like that. Yeah, give me five minutes where I have to say, All right Bolus extra here. Let me pay attention to it for a couple minutes. See if it stops the way I expect it to. And if it doesn't, we'll put in a little more. That, to me is so much easier, and a better way to live a more delightful way to spend your day. Yeah, they

Stephanie 52:53
feel better. I don't feel I mean, I feel better when I know that he's in a steady range versus like, this spikes all over the place. I mean, I literally start like, if I'm not with him, I'm calling my husband, did you give him influence? Did you give him mental and give him this much give him this like, and I don't stop because it's just like, no, like, it's just not gonna, it's gonna crash as soon as the insulin catches up, because there's nothing really backing that rise at that point anymore.

Scott Benner 53:16
Exactly. You're missed. And trust me again, please, as he gets older, as you get, you know, more body weight, all the things that come with growing, this becomes less and less a part of your day, to the point to the point where it just doesn't, it just doesn't happen the way that you're describing anymore, you'll find a balance.

Stephanie 53:34
I can't wait. I'm like, come on second grade, because you said you started typing Ardo when she was in second grade, until I'm like, in second grade, I'm gonna start texting him and telling him because I don't know, at this point, like if I could ever really trust the nurse, because they're all going to want to do the three hours and I'm just like, no, that's not how we're going to do this. Like,

Scott Benner 53:54
and even that, even that aside, even if you found a fantastic nurse, there's still going to be in that situation where like, well, there's certain times I go to the nurse's office. Yeah, you know, and so whatever my blood sugar is, when I get there is what it is. I mean, like you're looking at what's happening with Arden's lunch today is a great example of how texting is helping, like we really are in the middle of the it's a quagmire, like it's just there's too much. It's just such a messed up situation. You know, she needs a new pump. So we put the pump on but it she's already eaten something with a lot of carbs. And now we've done a pump change on top of a large carb heavy thing in our system. And we're trying to get it going in the right direction. But it's just it's we're not winning the battle at the moment. And before I know what happens, lunch happens. And so, you know, I thought we were there. We were at 150. And I was like, Well, I'm getting it, it's moving in the right direction. But it turns out I wasn't and then lunch happens. But if I just if I go back three hours from now and do whatever we did, do how much more insulin we've used since then, like Arden's blood sugar would quite simply be 450 right now If I waited three hours for her to go back to the nurse, and instead we're just in a sucky 190 blood sugar that's gonna take a little time to get down to huge difference being just having that communication.

Stephanie 55:12
Yeah. And so I'm going back to when Lincoln had his dental procedure. A couple weeks ago, there was the following endocrinologist that came in, and she was like, go, we're going over the protocol and, and it's a big battle every time I go to the hospital because they want to administrate insulin, I'm like, No, he has a pump on I monitor his insulin. Basically, you're here just to hook up the IV. That's why we're here. And they're like, Oh, we've never had a patient do this. They always are astounded by his technology like the Dexcom. And the Omni pod, which I'm just like, This isn't like new technology, I don't understand what Yeah. And they're like, we've never seen someone with all this technology on we don't know how to handle this, or the protocol. And procedures aren't up to date or current with technology, which I find very, very frustrating every time we go. And so the doctor came in, she's like, so if his blood sugar hits 300, we will take his insulin pump off and give him a shot of insulin. And I was like, why would you take his pump off? Right? It's probably going to go that high because of the anesthesia. And if it does, I will just pull this in with the pumps, and then we'll wait and it'll come back down. And she's like, so are you refusing medical care? No, I'm refusing you to take my son's pump off and give him a shot of insulin. Well, the pump could be the pump could be key, she told me and like, but the pumps working right now. And if the pump is king, so just take the pump off and put a new pump on. No, you're not you're not taking its pump off chill. She got really frustrated me. And she's like, so you're refusing medical care, as I guess that's what you want to call it. I'm refusing for you to take his pump off. There's no reason for his pump to come on.

Scott Benner 56:51
Feel free to call it whatever you want. And, hey, I'm refusing to accept your under your misunderstanding of why my kids blood sugar might go up. Isn't that amazing? Like if the blood sugar goes up? She left right to a mechanical failure of the pump is the answer. Not Yes. All the bazillion things that could happen to push his blood sugar?

Stephanie 57:09
Yeah, like he's going to surgery with dextrose running through his system. So yeah. And they they always like decrease when he goes in for procedure decrease insulin, or they shut it off. Because they don't want to do anything while he's in there. So yeah, when when he actually came out of the procedure, he was like, at nine with an arrow angle down. So I was like, you need to get that extra. So on him now, like he's gonna drop really quickly. And so with that, running through a system, and we weren't really bolusing, we were just letting the bazel run in the background, because I don't know how dextrose is good. Like, I don't know how much the bolus for that. So he did hit 300. And I gave him you know, a small correction not a full one, because I wasn't, I don't know what, there's nothing in his system that's really causing this high. And it was just the anesthesia and the dextrose. And probably the you know, trauma that his mouth just went through. And she came back in, she's like, should we give him a shot? I'm like, No, he's gonna come back down. It's just takes, it takes time for influent to work, you should know this, like, and he had all that dextrose running through the system, like, he's okay. Like, and I don't want to force him to have to drink juice again, because he just had a procedure done, like in his mouth, let's just let it be. And he was fine. Like, he came back down and everything was good. But every time I take him to the hospital, I get this, like pushback about his technology and the dexcom and the insulin pump. And I feel like I'm you, you know, you have to really advocate and really not argue but you know, be smart about it and just say no, we're not doing that, or no why question. Why are you doing that one time I took him in? He was 75 because he was vomiting and he kept vomiting like four or five times a one day and 75 and it couldn't keep juice in the lady came running in to put on an IV fluid. And I was like, No, you can't give him that. He's like he 75 if you have sugar dextrose Yeah, you can put that but you can't put you know, sailing on him right now. She's like, he's high. I think though he's 75. Like if you if you give him that you're going to bottom out in 30 minutes flat.

Scott Benner 59:11
Wow. It's just it's mind boggling to think of all the different misunderstandings that you've like, witnessed. And these Yeah, these people have enough power over you to then say, well go ahead and tell me you're refusing medical care. So I can chart that you're refusing medical care.

Stephanie 59:26
Yeah. And like, and it's like, but you don't understand the technology. Like you're not understanding me and I all I'm like, I'm afraid that it's like if there's ever an emergency and my husband had to take him because my husband never really does. You know, he usually stays home with the other kids or he's working. I do all of the medical stuff. Or the doctor stuff. Something Yeah. And the advocating he just he just says yeah, whatever she said cuz she'll kill me and you so do what she

Scott Benner 59:57
like and you think he would just go with the medical People because he wouldn't have another basis for understanding he would think, well, I gotta go with him. I don't know.

Stephanie 1:00:06
I think he would who was like, Oh, they said, hook them up for an IV. So they know and he'd let them do it and, and where I'm like, no. And I think I told them four times, no, you're not giving him fluid until his blood sugar is over 100. Like, it's 75. And he's, he's three, like, he doesn't talk, getting him to eat and drink on demand is not possible. And he has been vomiting all day. So if you have that extra fluid running in the background, I know what's going to happen. So water is just going to, you know, drain them. So I think the biggest thing of dealing with a chronic illness is just knowing your child or yourself and knowing that advocating for yourself is not necessarily being wrong,

Scott Benner 1:00:51
right? No, you have to you absolutely have to stick up and, and speak up. I want to know where at the end of the hour and you've basically spoken for an hour and 45 minutes outside. I appreciate that. But I want to just check on you sort of at the end here a little bit. All right. How are you doing? Do you stop and think about yourself? Or are you just gonna see how long you can keep all these kids alive before you drop dead? What's your plan?

Stephanie 1:01:15
No, um, you know, I still work and, and I really love what I do in I think that is like, because I'm a hairdresser. I've been doing it for 1415 years. And, and I get to go and socialize with my friends, basically people that I've done for a long time. And, and I think that is I mean, it's my saving grace. It's my escape. And we do my husband and I do do like, we switch weekends. Like oh, this is your weekend to go do girl time. This is my weekend to go do a guy's night. So yeah, we do a lot of mental escape. Like even if it's going to the movies by yourself on a Saturday like we we do give that each other that breaks because it is it's, you know, meant mentally exhausting, and especially managing for kids and to have them special needs is it's a lot. It's a lot of battling. I feel like I'm always battling a doctor and battling the pool. Yeah. And I'm just like, when is it going to be easy, but you know, I feel I'm I feel like I've always kind of been a warrior in that sense of where I just don't do that. I don't go left. Because you say go left for you.

Scott Benner 1:02:27
I'm glad. Are you excited about you? Have you said you have Dexcom you have on the hunt? Are you excited about the idea of them working together and making?

Unknown Speaker 1:02:33
Oh,

Stephanie 1:02:34
I am. So I am so excited. So I do I did sign up for dash. So I'm waiting for that to come out. And we are just now upgrading to the G six transmitter. So I'm really excited for that. But yeah, I'm ready for horizon to come out. And you went to the Phoenix summit, right? The jdrf summit?

Scott Benner 1:02:54
I did. I went out and I spoke I spoke three times in six hours at the jdrf summit in Phoenix. I

Stephanie 1:03:00
know, did you I think I shook your hand when I first walked in. But I felt like I was stalking you. Because I went to all three of your How do I do that? Let's

Unknown Speaker 1:03:09
get really good.

Stephanie 1:03:12
Yeah, you know, I feel like for you, it must be really challenging because so many people want to ask you questions. Like there was one lady that just went on and on about here. She was just like, so frustrated, and you kept trying so many times to be like, maybe I can't help you with a cure. But I can help you with your blood sugar. Like, do you want to talk about your blood sugar, but but I can't help you with a cure? And I was like, Can you stop talking and taking up his time? Like we're not we're not gonna talk about QA today? Can we talk about like blood sugar and bazel the scenes about that this

Scott Benner 1:03:41
would probably not get me invited back. So we're in this I'm sitting on a panel. My first one was a panel, right? And we were there to answer questions. And so you know, somebody raises their hand. And if you go to enough events like that, you'll see that there are some people there, they just really want to be heard. And there's no like they're not following along with what the rooms therefore what the people are there for. They just they want to say what they want to say. So she wanted to start, you know, chirping about, I was promised a cure and it's not, you know, like that. And so she kept you know, you think at some point, okay, they're gonna get it and they're gonna stop and you're gonna move on and get to everybody else. But she wasn't giving up. So I don't know if you caught me. But I leaned over to the person who was next to me on the panel, and I whispered in their ear, and I said this, one of us is going to have to stop her. Is it going to be you? Because if it's not going to be you, I'll do it. Oh, and she's like, No, no, I said, Okay, I will and you just have to know how to so I kind of I hate to say it, but I just kind of spoke over a little bit and stopped her and then try another question to get it moving it but she did chew up it. That's the problem with those things is that the time is not enough. And so yeah, this was um, you know, this was a situation where you had an hour to ask for people questions, and it would have been nice to let all the people answered there as many as it could. Instead, she chewed up on of time, my problem then in the next settings, is it in 45 minutes or an hour? The stuff I'm really there to say in fairness takes an hour or so plus, then it invites questions afterwards. So I'm always talking incredibly fast. And and you know, sometimes the further you get away from the east coast, and you're speaking quickly, you go south, you go west, people are like, Hey, calm down, buddy. And I'm like, No, you don't understand. I got to get a lot out here in a short amount of time. But, but I am glad you so I'm glad you like that. I really am. And thank you for

Stephanie 1:05:33
Yeah, yeah, no, I I went last year. And last year, I felt it didn't really, I felt really bummed that I wasted my Saturday going because it didn't really apply to little kids. There was nothing geared to little kids or just how to treat you know, how to change or, you know, treat bagels. And this year, I felt like with you being there, and then Forgive me, but the guy that did the triathalon marathons. Yes. Yeah. Right. He was there. And that was exciting to hear his accomplishments. And so so I think this year, they did much better. And I was really happy that they had a lot of, like, pediatric endocrinologist there. Because last year, they did it. And I was just like, well, what's the point of me being here? Because none of it was like, send your kid off to college. How did you sports? Like, none of it apply to having a type one topic? Not one. One thing? Yeah. Sounds like what's the point of us being here?

Scott Benner 1:06:24
What we got a lot of great feedback. I know, I got good feedback on my stuff. And and the jdrf has gotten back to me and said, they've gotten good feedback about the stuff that I spoke about live is there. So I think they'll I think that, you know, hopefully, they and other, you know, chapters will think more about letting people leave with real actionable tools, you know, not just like, Oh, you know, we talked about encapsulation. Well, that's great, that's 15 years away, if they cure if they figured it out today, encapsulations, 15, or 17 years off, or something like that, which is fun to hear about for five minutes, but not for an hour. And, you know, like, people need something they can take home with them and put into play, you know, and so yeah, that was my pitch. When people asked me to come out, it's like, you know, but I tell them is I'm gonna, I'm gonna speak about stuff, and give people a real chance to make an impact in their health and their life and their happiness and everything and,

Stephanie 1:07:17
and not be so afraid. Yeah. I mean, the I mean, the doctors, I mean, this just may be like, like you say, like, the don't die advice, but they really like been bound up with that in itself. Like fearful when you get home, you're like, I don't want to be responsible for killing this little kid.

Scott Benner 1:07:34
But when you don't, but you still need to understand how to use the insult. You can't just throw your hands up and say, well, well, I guess whatever happens happens. And so yeah, that's that I had a great time. I told them immediately, I thought they ran an amazing event. I thought it was incredibly well. Set up and organized. And it ran great. I said, I'd be thrilled if you want me to ever come back. I'd love to come back again. I thought they I thought they did a really great job. I was also equally as impressed with Southwest Ohio man they have they really do something great out there. Yeah. So you know, I'm up for anything. If you're interested in having me speak, reach out.

Stephanie 1:08:10
I would love to No, it was it was awesome. And I really liked that you were there because it was a different spin on what was available, what was speaking and so to have, have you out there who's not a doctor, and you're not a diabetic, but you're a caregiver. And that's what a lot of those people are, we're all caregivers. And, and we're here and we don't know what to do, like the constantly like looking for the next best advice or next idea.

Scott Benner 1:08:36
It's great to hear from other people and see what they do too, and see if you can incorporate some of it into your plan. So

Stephanie 1:08:42
yeah, and the one thing I do want to say to parents out there that have not or that are non diabetic, where your son CGM, or your child's old CGM for a week to see how a non diabetic blood sugar works, because when I did that, it totally changed my perspective on diabetes.

Scott Benner 1:09:00
Because people's blood sugars do go up.

Stephanie 1:09:02
They do go up and they go really down and like it bounces around and I'm like, oh, okay, well, if I'm healthy, I don't have diabetes, or pre diabetic and mine is mine doing it. So I mean, I went to 150 eating yogurt. And so now I don't really eat yogurt anymore. Because like, obviously, that's hard for my body, but just to see how it changes and how I like if I can change and feel things like I went to like six. All night one time when I was sleeping. I was like, oh, and I'm fine. And I'm alive. And yeah, so he's 75 and he's low sleeping. He's okay. Like, it's I don't really need I can shut the bazel offer, you know a little bit and let him go back up. But I don't need to wake him up and correct it and make it go to 150.

Scott Benner 1:09:43
Yeah, knowing knowing what you're talking about goes a long way to doing something it really does and a great way to do it. I've heard a lot of people say that and I haven't had the opportunity to but I would certainly if I could get a hold of the technology. That was extra. I would love to see that. You know, so yeah.

Stephanie 1:10:00
He was getting ready to expire. And we had to do once a week left on it. And I just downloaded the Dexcom app on my phone. I was like, Okay, I'm gonna try it and see what happens. And I was such a little chicken when I had to insert it myself, but

Scott Benner 1:10:12
did it and put it on someone else, right?

Stephanie 1:10:15
Oh, I had to count. I was like, Okay. 123. Okay, we will do it at 10.

Unknown Speaker 1:10:22
But well, thank

Unknown Speaker 1:10:23
you, Stephanie.

Scott Benner 1:10:24
Thank you. I really appreciate you coming on.

Stephanie 1:10:26
Yeah, so thank you, and I can't wait to hear more. Take care. You too. Thanks. Bye.

Scott Benner 1:10:33
So Stephanie is obviously a fighter. There's a lot going on in their life. And there was a lot going on this day. I appreciate you guys listening. I try really hard for the sound to be great on the podcast, but I just didn't want to not give you this episode. I feel like what Stephanie went through today recording the show once and having to record it again. Now in our car, outside of our son's school, it's just to me, it showed a tenacity that I wanted you to see. So hopefully you could listen through the background noise and and see what I was trying to show you.

Thanks so much to Dexcom on the pod and dancing for diabetes for sponsoring the Juicebox Podcast. Thank you very much to you, the listeners and everyone who's supporting and sharing the show. Don't forget this Friday, another episode of Ask Scott and Jenny will be available. If you're not following the show on Facebook, check out app bold with insulin on Facebook and on Instagram at Juicebox Podcast. Facebook's really great. There's a really big contingent of you guys in a private Facebook group. So you join the ball with insulin group and then ask to be put into the private side of it. Where there are thousand people helping each other with questions day to day stuff about basal rates and stuff like that. It's very cool. Very communal. I like it.

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