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- [00:00]
A
Welcome back friends. You are listening to the Juice Box Podcast.
- [00:13]
B
Hi, I'm Sabrina Zevi's mom and we're here talking about my son.
- [00:23]
A
Have you tried the Small Sip series? They're curated takeaways from the Juice Box Podcast, voted on by listeners as the most helpful insights for managing their diabetes. These bite sized pieces of wisdom cover essential topics like insulin timing, carb management and balancing highs and lows, making it easier for you to incorporate real life strategies into your daily routine. Dive deep, take a sip and discover what our community finds most valuable on the journey to better diabetes management. For more information on Small sips, go to juiceboxpodcast.com click on the word series in the menu. While you're listening, please please remember that nothing you hear on the Juice Box Podcast should be considered advice, medical or otherwise. Always consult a physician before making any changes to your healthcare plan or becoming bold with insulin. This episode is sponsored by Able Now Tax Advantaged Savings Accounts for Eligible Individuals with disabilities. If you or your child lives with diabetes, you may qualify for an ABLE account because of ongoing medical needs and many people in the diabetes community do. With ablenow you can save for future expenses without affecting eligibility for certain disability benefits such as Medicaid. Learn more and check your eligibility@ablenow.com you spell that a b l e n o w.com today's episode is also sponsored by usmed.com juicebox you can get your diabetes supplies from the same place that we do and I'm talking about Dexcom Libre, Omnipod Tandem and so much more usmed.com juicebox or call 888-721-1514. The podcast is also sponsored today by Omnipod5. Omnipod5 is a tube free automated insulin delivery system that's been shown to significantly improve A1C and time and range for people with type 1 diabetes when they've switched from daily injections. Learn more and get started today@ omnipod.com juicebox at my link. You can get a free starter kit right now. Terms and conditions apply and eligibility may vary. Full terms and conditions can be found@
- [02:36]
B
omnipod.com juicebox hi, I'm Sabrina, Zevi's mom and we're here talking about my son.
- [02:47]
A
His name is. Say again?
- [02:49]
B
Zevi. Zevi like Zev, but legally it's Zevi
- [02:52]
A
with an I like drove the Zevi to the levy, but the levy was drunk.
- [02:56]
B
Yeah, exactly that.
- [02:57]
A
Gotcha.
- [02:58]
B
I never even thought about that. But yes.
- [03:00]
A
Oh that's nice.
- [03:02]
B
Yeah. Now I'm Gonna have to play that song to him.
- [03:04]
A
How old is that?
- [03:05]
B
He's two and a half.
- [03:07]
A
Wow. And your first?
- [03:09]
B
My first and only because your first.
- [03:12]
A
Why the only part?
- [03:13]
B
He's just spectacular, and I can't imagine. I don't know.
- [03:18]
A
Need another one?
- [03:19]
B
Yeah, I don't need another one. He's. He's. I'm also 40 years old, but not, you know, I don't know. He's just everything that I could imagine.
- [03:28]
A
That's lovely.
- [03:29]
B
The most spectacular little boy.
- [03:32]
A
How do you get to being pregnant when you're 38? What's the pathway to that?
- [03:36]
B
Well, everyone thought, I think I was going to be just like an old maid. Never married and met my husband kind of late and got pregnant. We started trying about three, two months after getting married because everyone told me it was going to take, like. It could take a year. Got pregnant, like, almost immediately.
- [03:59]
A
Ruined that for your husband, huh? Yeah, yeah.
- [04:01]
B
So jokes on him.
- [04:03]
A
Yeah, yeah, yeah.
- [04:04]
B
So. And I was very up in the air about, like, even during labor. I was like, get him out of me. I didn't know if I wanted. I love kids. I was very on the fence of, like, do I want to have a child? Because I was 37 years old at the time. He was born, like, two months before I turned 38.
- [04:22]
A
Yeah, that's. Talk about that for a second. That's a long time to, like, settle into what life is. Right. And then suddenly.
- [04:28]
B
Sure. No, I was.
- [04:29]
A
You let the boy in, and then you let the boy in for real, and then you have a baby come out.
- [04:33]
B
Yeah.
- [04:33]
A
Yeah.
- [04:34]
B
I'm very. I mean, I dated a lot, and I'm very. Just comfortable in my life and independence and. But also desperately wanted to meet someone and then kind of gave up on that in a certain way of just, like, I'm just going to enjoy myself. And then pandemic hit and we met, and just very, like, natural progression.
- [04:55]
A
Were you disappointed or happy when he turned out to be somebody you could marry?
- [05:01]
B
Oh, no. Very. I. We said I love you within two weeks. It was, like, very. It felt very natural. I don't know. Like, just felt good. Yeah, it was very easy. And I had been on so, you know, been through so many things where it just felt, like, hard. And it's not supposed to be hard. It's supposed to just feel like, you know, the person. Yeah, no, I. I wasn't, like, forcing anything. I didn't have, like, a timeline, you know, I just wanted to be married to my best friend. I think at the end of the day, you know.
- [05:34]
A
You know, I know, like anger or sadness that it didn't happen sooner. You're just happy it happened.
- [05:40]
B
No, not at all.
- [05:41]
A
Good for you.
- [05:42]
B
I was. I mean, for me personally, I don't think I could have shown up as a mother and, what, in the same way, in my 20s or even early 30s.
- [05:54]
A
Okay.
- [05:55]
B
I needed to, like, travel all over the world and grow my business and just get more and more confident in who I am, if that makes sense. I. Yeah.
- [06:06]
A
You're an only child.
- [06:07]
B
No, I'm the youngest of four girls.
- [06:09]
A
Wow. Oh, youngest of four.
- [06:11]
B
Yeah, I'm the youngest of four.
- [06:12]
A
You grew up. Nobody was even paying attention to you.
- [06:14]
B
No, everyone paid attention to me.
- [06:16]
A
Really? Tell me a little more.
- [06:18]
B
It was just kind of the running, you know? Yeah. I don't know. I was. I was like my mom's tag along and always spent time with my parents. And, you know, I was very big into sports. And I don't know, I just kind of. I was like a nerd, but like a sporty nerd and just kind of like, kept myself in certain ways.
- [06:37]
A
Yeah.
- [06:38]
B
But no, I'm. I'm very much the baby of the family. And in the good ways and the bad ways of like. Of course you're saying that, Sabrina, you know, that kind of.
- [06:47]
A
The other three are like, you know, I don't know what she's talking about. I believe this summer I will be married for 30 years. And last night, my wife, we were getting ready. I just built a recording studio in an office.
- [07:03]
B
Oh, nice.
- [07:03]
A
Yeah. To move everything into. So it's up to the part now where we're getting it painted.
- [07:08]
B
Okay.
- [07:08]
A
And my wife just come. We are not talking about it at all. Like, it's not happening. She walks into the room and she says, oh, you know, the guy's coming over to paint soon. And I said, yeah. She goes, I was just in the powder room. I stepped right in front of her sentence. And I said, on the left side, there's a piece of trim on the wainscoting that needs to be caulked underneath. And she goes, oh, my God. How did you know that? I said, well, sweetheart, we've been together for 30 years. I was like, you don't think that you and I see things, like, kind of the same way now? Which is frightening because we are completely different kinds of people.
- [07:40]
B
Yeah.
- [07:41]
A
And this is not an easy. It's not like there's a giant crack on the wall. There's a tiny little line underneath of a lip that if I'm being honest with you. You'd pretty much have to be leaning forward while you were sitting on the toilet to see.
- [07:53]
B
To say. I. It's the details. It's the. It's every. I. I get it.
- [07:56]
A
No, I. Yeah, my wife, like, she looked like, like a little girl for a half a second when she looked at me. Almost like she was like, oh, this is a good guy. Like, that was. It's a weird. It's weird where you see, like, things like that kind of pop up after you've been together for a really long time. Anyway, I said, see, we. We agree on all kinds of stuff. And she goes, don't get carried away. And I was like, okay. So anyway, so baby goes in, starts cooking, comes out. Was the pregnancy easy?
- [08:23]
B
Easy. Medically speaking, I just was so nauseous and morning sickness all day, every day pretty much until he came out of me.
- [08:33]
A
Okay.
- [08:34]
B
And it just was instantly gone. But it was very tough. Like, I felt like I was, like, dying for two months in the beginning. Barely got out of bed, which is, like, big for me because I'm very active. And then slowly kind of got a little bit better. But. But no, I mean, I'm not exaggerating when I say, like, during labor, I'm like, even my mom was in the room with us, and she's a photographer, so she was like, this is like her Super Bowl.
- [08:57]
A
She's finally.
- [08:58]
B
Oh, yeah. She's, like, in there. Well, he's like, I'm pushing. He's almost out. And the. The. The midwife. I used a midwife at the hospital. And she was like, oh, you can't record this. She was like, oh, okay. In my head, I'm going, oh, she's going to record this.
- [09:11]
A
No, of course I won't. Don't worry about it. It'll be.
- [09:14]
B
Yeah, but, you know, I'm literally yelling, like, going, I just get it out of me. Like, I don't even want this.
- [09:19]
A
You know, Give it back. Did someone keep a receipt?
- [09:24]
B
No, it was. Yeah, I mean, that was. I went back and forth for almost the whole pregnancy of, like, I think I want this. I don't know. And then as soon as he came out, I was like, oh, my God, he's just amazing.
- [09:35]
A
So that's what gets thrown inside of you, right?
- [09:37]
B
Yeah.
- [09:38]
A
So, okay, so husband's side, your side. We're looking for any autoimmune issues, anything like that.
- [09:44]
B
Autoimmune is my side. Only recently have we real. Like. So my mom is celiac. Kind of started Around Covid, she's had a lot of health complications, but before that, not really, like, no diet. I mean, my dad has, like. He's not. He doesn't mean he doesn't take care of himself very well. So he has kind of, like, teetered on, like, you know, being diabetic type 2, on and off, but not. It's not, you know, it's not type one, and it's.
- [10:15]
A
We don't have thyroid vitiligo, kind of.
- [10:19]
B
See, that's the thing is I didn't realize how many autoimmune issues there were until I started to understand autoimmune.
- [10:25]
A
Yeah.
- [10:26]
B
So my sister, one of my sisters has Hashimoto's, and. But she was diagnosed, you know, three, four, I don't know how many years ago. So it wasn't. It wasn't always, like, on the forefront. I didn't grow up with it thinking like, oh, this is, you know, I was. I kind of stumbled on my autoimmune. I have, like, a tissue disease. It's called, like, limited sclerosis.
- [10:47]
A
Okay.
- [10:47]
B
But I don't have present as, like, many normal symptoms, but I just have, like, a lot of, like, joint and muscle pain, which is a whole other conversation in your podcast, actually kind of like, open my eyes to, like, using something that I'm. We're, like, experimenting with right now, which is wild. Oh, yeah. And I have, like, absolutely no weight to lose, so it's. I am micro. Micro dosing the micro dose to see, and it's still affecting me almost too much. Like, I've lost too much weight in two weeks.
- [11:15]
A
Yeah, you just got to keep eating.
- [11:17]
B
It's very hard. I am so. I felt like I'm pregnant again, honestly. And it's like I'm like, force feeding myself. Yeah, it's. It's been very hard.
- [11:24]
A
I have to tell you that last night, Arden's finishing up a semester, so she had, like, tests yesterday. She comes home, she's wrecked, right? She's like, I have a headache. I didn't eat. Like, I'm like, you know, Kelly's like, I'm hungry. I was. I was like, I could eat. And then I get a text about, like, what do you want? This text chain is clearly showing everyone that no one's cooking, right? Like, someone's trying to figure out where to go get food. I just want some dead flesh. I don't really care what it is. Even my son was like, I'm in. Because, you know, he usually is like, no, you people. Like, I'll Eat on my own. But we stood around trying to imagine what to eat, and everybody was like, I don't know. I don't know. Like, nobody could. And it's the glp. Like, everybody's like, I don't know.
- [12:05]
B
Well, the. The whole intention for me is it's supposed to. There's a theory that it's supposed to reduce inflammation and everything. It just feels like I ran a marathon every day for, like, the past almost two years, and I haven't. I mean, I have done some kind of workout during the day, but, like, nothing. Like, I, you know, I'm taking. If the lowest dose, I think, is, like, 2.5, is, like, the smallest, I'm taking 1.25. And I still think it's too much.
- [12:30]
A
How are you injecting it?
- [12:32]
B
Just in my belly. And I. Which is a good thing in some ways because I'm showing Zevi, because we don't really give him. Maybe given him two or three injections since the hospital before he got it. He got his pump in the hospital.
- [12:43]
A
I'm saying, are you drawing it out with, like, an insulin needle?
- [12:45]
B
I'm drawing it out, yeah. I'm using, like, my little, like. Yeah, I'm. With our syringes.
- [12:50]
A
Yeah. I mean, are you. Have you tried less, like, than even.
- [12:53]
B
I tried even less this past week. Yeah.
- [12:55]
A
Okay.
- [12:56]
B
I have a meeting. I have an appointment today with the Endo. But it's just kind of. Yeah, it's like a really. A rheumatology issue, but we're going this route just to, like, an experiment for like, a month or so.
- [13:07]
A
No. Sure. Do you think it's touching anything?
- [13:09]
B
I kind of do because I don't feel the achiness in, like, my knees and my ankles as much and. But it's. It's hard. I just can't. In some ways, I feel a little bit better. In other ways, I'm, you know, my sleep is, you know, pretty disjointed, natural, you know, normally now. So.
- [13:27]
A
Yeah. Because of the baby. Yeah.
- [13:28]
B
I don't know. It's. You know. Yeah. But I never even thought about it until all your episodes because I was researching. Not that Zevi would use it right now, but, like, maybe, you know, in the future it would be something that would reduce, you know, his insulin needs. And. And then I kept kind of, like, going down a raw rabbit hole and then kind of stumbled on. And I presented it to the rheumate. She's like, I don't feel comfortable. Like, I don't know anything about it, but will you reach out to the endo? And immediately she was like, let's try that. That sounds, you know, let's give it a shot. Let's try it. Yeah, I'm willing.
- [13:58]
A
Yeah. Yeah. And you're. Listen, I'm gonna make a leap here, and if I'm wrong, I'll slap my own hand. But some anxiety for you.
- [14:05]
B
I'm a neurotic Jew. Yeah, I'm, I'm.
- [14:08]
A
I didn't want to say it. When I heard Zevi, I was like, I know what's going on here, but I'm very.
- [14:13]
B
I. I'm like the most chill, anxious person you'll ever meet. I could care less about so many things, but, you know, yeah, I'm just naturally, you know, I'm very type A. So, yeah, no, I.
- [14:24]
A
So let me share something with people. So when you, you pop, you all you guys, when you come on to record, like we talk for a few minutes before we start, it's mostly to get technical stuff together. And you popped on and I could see you, which is not everybody is even like, has a camera on. And I'm. You're sitting in front of a laptop, so I don't want you doing that because it doesn't sound good. And so I'm trying to pick through what's going on. And I realize that you're on your laptop because you want to be able to watch your son's blood sugar on your phone. As I told you earlier, ABLE NOW is sponsoring this episode. ABLE now, of course, tax advantaged ABLE accounts for eligible individuals with disabilities. If you or your child lives with diabetes, you may qualify for an ABLE account because of ongoing medical needs. Many people in the diabetes community do. With ABLE now, you can save for future expenses without affecting eligibility for certain disability benefits such as Medicaid. And thanks to updates to federal law, ABLE accounts are now available to more people than ever before. That means more individuals and families can use ablenow to save and invest funds in. An ablenow account can be used for a wide range of everyday needs, including education, transportation, healthcare, assistive technology, and more. There's no enrollment fee, and you can open an ablenow account with a small initial contribution and build from there. Learn more and check your eligibility@ablenow.com that's ablenow.com a b l e n o w dot com. I used to hate ordering my daughter's diabetes supplies. I never had a good experience and it was frustrating, but it hasn't been that way for a while. Actually, for about three years now because that's how long we've been using USMED, usmed.com juicebox or call 888-721-1514. USMED is the number one distributor for Freestyle Libre Systems nationwide. They are the 1 specialty distributor for Omnipod Dash, the 1 fastest growing tandem distributor nationwide. The number one rated distributor in Dexcom customer satisfaction surveys. They have served over 1 million people with diabetes since 1996. And they always provide 90 days worth of supplies and fast and free shipping. USMED carries everything from insulin pumps and diabetes testing supplies to the latest CGMs like the Libre 3 and Dexcom G7. They accept Medicare nationwide and over 800 private insurers. Find out why USMED has an A rating with a better business bureau@usmed.com juicebox or just call them at 888-721-1514. Get started right now and you'll be getting your supplies the same way we do.
- [17:17]
B
Oh yeah. I don't stop watching it. I sit in. I mean, it's been like a whole thing. Even like at the yoga studio I go to is I, I, you know, I wrap it in a T shirt and I like hide it. Cause we loop so like I can see everything. Now the other, you know, beforehand it was like harder. Like, you know, following is, you know, the technology. I find that, yes, as much as I need the mental break. Well, like for that hour I'm swimming or working out or whatever. Like I get like one hour every 24 hours kind of to myself. Yeah, maybe. And I find that I'm able to step in and take over and manage him so much better. When I've been watching the trend. Like, okay, I know that he had this for breakfast. How did it affect him when I gave him 11 units today instead of 12 units, but I gave him two blackberries, you know, before I left. And now he's tr. Now he's five points. Okay, maybe if I gave him this and I like, I don't know, it's like an experiment every day.
- [18:10]
A
But I diluted insulin so they're not confused while you're talking.
- [18:13]
B
Oh, yeah, yeah, yeah, yeah. Sorry. That's a huge thing. So he's on U10 diluted. He's been on that since diagnosis as much as every, you know, I've. It's been encouraged like, oh, well, maybe it could go, you know, go to U25. Our pumpkin regularly throughout the night will give 0.05, you know, just to kind of keep him stable. And I give him 0.1. I probably give him 70 doses throughout the day. Like big doses, tiny doses. I manage it like I'm the algorithm.
- [18:40]
A
Oh, you. You're gonna make yourself crazy.
- [18:42]
B
I'm gonna make myself crazy. But he's, you know, for the most part, minus here or there, he's pretty stable. And it's very hard anticipating a toddler, so I know eventually it won't be this difficult, but. But yes. No, I. I am his pump.
- [18:58]
A
Yeah, well, listen, I did it for a long time, too. I can't. I can't scold you, so.
- [19:02]
B
Yeah.
- [19:02]
A
How come while we were getting set up, your. Your husband's with him and that in just. In the last 15 minutes, you've described this boy as, like, perfect. This. You met him, you knew right away, he's your best friend, blah, blah, blah. And then you just need an hour to talk to me and you don't. You can't trust it or. What's the thing? Today's episode is brought to you by Omnipod. We talk a lot about ways to lower your A1C on this podcast. Did you know that the Omnipod 5 was shown to lower A1C? That's right. Omnipod 5 is a tube free automated insulin delivery system and it was shown to significantly improve A1C and time and range for people with type 1 diabetes when they switched from daily injections. My daughter is about to turn 21 years old and she has been wearing an Omnipod every day since she was four. It has been a friend to our family, and I think it could be a friend to yours. If you're ready to try Omnipod 5 for yourself or your family, use my link now to get started. Omnipod.com juicebox get that free Omnipod 5 starter kit today. Terms and conditions apply. Eligibility may vary. Full terms and conditions can be found@ omnipod.com juicebox yeah, well.
- [20:15]
B
Well, we just had a little. I don't even know. I. There's been, I think three nights since we've been home from the hospital. I mean, he's been. This has been going on now. We're on like over a year and a half now of. Of diabetes stuff. One time I was so sleep deprived after the hospital, I think two weeks in, I dosed him eight units diluted instead of eight carbs. And that completely. That was the most insulin we'd ever given him. So we were like having like a complete. I mean, granted, that's like a quarter of a banana in the middle of the Night, you know, like, even. That's even too much. And then last night, what I had kind of mentioned was. And my husband woke me up to be like, there was 192 carbs were inputted. I don't even know how because I only dosed him 0.2. So I think that it somehow, like, with the phone, because I leave the. His transmitter open. I don't even. I still. I can't try to figure. I'm trying to, like, recreate it because it even gives you a warning, like, are you sure you want to do this? And I'd have to press yes. And like, that's not how I dose him at night. So I'm so confused. So we're fighting a low blood sugar right now, so not watching the sugars is okay.
- [21:24]
A
A couple things I don't know.
- [21:25]
B
Yeah.
- [21:25]
A
How low is he?
- [21:26]
B
He went. I mean, the Dexcom was saying 42, but I was starting to feed him half a juice box grapes leading up to that. It's just like 10 units in the middle of the night is a lot diluted again.
- [21:39]
A
Do you want to look right now? Take the phone away and check his bloodstream. Go ahead.
- [21:43]
B
It says 55. Hold on. He. Leo's probably okay, but all his Popes were, you know. You know, it. That's a. That's the issue with technology, right? So Dexcom could say 51, and he was at 68, you know, so I'm constantly cal. You know, recall recalibrating, but he should be okay right now. We gave him some maple syrup, which we almost never give in his gum. So, um, it was.
- [22:05]
A
How long has he had diabetes now?
- [22:07]
B
So he was diagnosed at 10 months old. So it was September 2020. 2024.
- [22:17]
A
What do you. What do you weigh at 10 months old?
- [22:20]
B
Oh, my gosh. I should know this. It's 28 pounds right now. I don't even know. 19. 18. 18 pounds. I don't even know. No, that's too much. I don't know. Something like that. 15 pounds. I mean, tiny. He. I had noticed maybe like, about four days beforehand. Five days. I remember him napping, and I kind of like. Or he was, like, playing around, like, kind of rolling around. And I was like, man, you're kind of, like, losing some of your baby weight, you know? And I could, like, kind of like, see his rib cage a little bit more. And he's. He's my husband's side in terms of like, you know, he is, like, you know, little chubby cheeks, and his arms have some, like, Cushion to him and he's just, oh, you just want to squeeze them. And I didn't really think anything of it. You know, we honestly stumbled. Like, I had no idea. Like, I didn't even know what diabetes was. If I'm being frank. I truly had no idea what insulin was. This was. I laughed when our pediatrician, I brought him in. So it was, I think on a Thursday he started having this like, you know, the breathing. And I thought that because he had fallen into like his play mat and I was like, man, maybe he like punctured a lung. You know, I'm like a first time parent. So everything's like, I don't know, you
- [23:34]
A
know, I hear you. He probably fell and got some crazy disease.
- [23:38]
B
Yeah, exactly. So I'm, you know, but at the same time I'm like, I'm, you know, I'm with him every second of the day, so I'm just watching him. But that afternoon, we live very close to the beach. So I walked him down to the beach and he's like crawling into my lap to like lay down like the whole time. And I'm going. And he's like falling asleep. Like we had just woken up from a nap. He's like doing his head shaking, like to fall back asleep. And I say to my husband, like, something does not feel right. Like, I don't. This doesn't make sense to me. Like, what is his breathing like, his belly? Like, does he, does he have rsv? That's what also popped in my head. So I reached out to his pediatrician. We went in that Friday morning worried, you know, about Monday morning, like if I waited the whole weekend and what if he had a virus? You know, not that you can really do for anything for a virus, but never, you know, never like to know.
- [24:29]
A
You don't want to get stuck over the weekend not having access.
- [24:31]
B
So I, we, I took him in and I actually let him nap in the car on the way to the, like, I was driving circles trying to get him back to sleep. And then I took him in and, and he was like, you know, awake. And they're like, I was apologizing. Gwen, I know I'm wasting your time. I'm really sorry for like rushing in, you know, and there he, the doctor came in and he was just stumped. And he's just sitting there, he's like googling. And he looked at me and goes, he had you. He either needs a chest X ray or he is diabetic. And I like laughed. I was like, he's not diabetic. What are you even talking about? You know, look at his little chubby cheeks. I know his little chubby cheeks. And, and I was going to rush halt because so. And then bad news, their test strips had expired because they never check blood sugar in their office. So they tried like three different times and everything wasn't working. And I was going to run home to grab a glucose like meter that I had from pregnancy because I refused to do the glucose drink. So I was just checking my sugar.
- [25:36]
A
So wait, so you took it, you took the doctor seriously?
- [25:38]
B
Because it's funny because no, I took the doctor seriously. I. He said, he goes, you need to go to the emergency room right now. I'm going to call Ms. And I say okay.
- [25:45]
A
I just think it's interesting because you again, I know you for 23 minutes.
- [25:49]
B
But yeah, you feel, I usually don't listen.
- [25:51]
A
Yes. You feel like a person to me who would have looked and been like this googling. He has no idea what he's talking about. I'll get out of here and figure this out on my own.
- [25:59]
B
But yeah, no, I, I know I, I normally I'd be like, yeah, I'm not really going to do that but okay. But I get in the car and I start, you know, kind of like, like my mind's running. And he had fallen asleep on the way of course because he's a DKA to the hospital and I even let him like sleep for a few minutes in the car seat and then I like was like I should take him in. Like you know, we get in, we're in triage, they're trying to tell me to go home. They're like, nothing is wrong with him. He is so healthy. You should go home, you're gonna waste your time. And I was like, my doctor really, really, really wanted me to get his blood sugar checked. Can you just do that or chest X ray, you know, and, or yeah. And they're like, truly, you're wasting your time. But if you really want to wait. Okay, Sabrina.
- [26:50]
A
Neuroses to the rescue.
- [26:52]
B
I know. Thank God.
- [26:53]
A
Saved the boy. It's gonna kill you. But it saved the boy.
- [26:56]
B
No, I, I mean, because he perk. You would have. He hides it very well. Like it's very hard to know when he's not feeling well. Which. Yeah. So anyway, so my husband shows up. We're just kind of playing in the like kids room. An hour goes by. I have probably bothered them, I don't even know three or four times. Like can you please check the blood Sugar, can you please, you know, can you please do this? They come in, they swap for Covid. Everything else, we go back into the little whatever, you know, lab area, and they check, and I see 5:40 pop up. And I'm like, I don't understand anything about blood sugar. Right?
- [27:33]
A
Yeah.
- [27:33]
B
And I'm like, but that doesn't. That doesn't make sense because that's not what my blood sugar was when I was checking it.
- [27:38]
A
Right, so you had something to compare
- [27:41]
B
it to a subconscious person, like, I understand. I know wellness, but I. This was like so out of my wheelhouse of like, he's a baby. I don't know, you know, and they think their machines are broken, so they rush us to another room, and then it's even higher. And then all of a sudden it just. So we went from.
- [27:58]
A
You should go home to where. Where little Zevi would have probably died in his crib, by the way.
- [28:04]
B
And he would have. He probably would have died within a few hours. And you would have no idea because he was just like, you know, smiling and playing with us for the most part, you know, other than the, you know, one of the ER doctors came in being like, this is impossible, you know, and then they must have called the children's hospital, and they didn't even want a chance taking him in an ambulance, so we got helicoptered over there.
- [28:30]
A
They went from sending you home to putting him in a helicopter?
- [28:33]
B
I know. Yeah. No, it was very. He was. I, like, I don't sit back and think about. I mean, I think about it in, like, when I'm like, snuggling him at night kind of thing, you know, I just don't. Yeah, I, I. Sabrina would. Worst, worst afternoon of my life.
- [28:54]
A
Yeah. Okay. Well, the worst day is when you met the boy, because that's what put this all into motion. But you, you were so okay by yourself, by the way. Dating a lot, having a good time. You probably had a fabulous little place you lived in and. Right.
- [29:06]
B
But yes. No, I loved my house kind of business.
- [29:10]
A
You said you have your own business. What kind of, like, what type of business is it?
- [29:14]
B
So I'm a writer by trade, but Covid really changed, so I was stopped, like doing like marketing. You know, I'm a. I. I have rental properties, so I have like a little like, you know, rental landlord business of sorts that allows me. I'm like full time mom, but you, because of. You know, I can work for my phone unless I have a move out clean or something, or, you know, there's a Sewage leak in a unit, which happened a year and a half ago.
- [29:40]
A
I was going to say, you didn't just make that up.
- [29:41]
B
No, that was a whole thing. But very few days a year do I, you know, leave Zevi for, you know, five, six hours to. To get to a property if I can't, you know, obviously take them. In those kind of situations.
- [29:53]
A
How, how much of his diagnosis story f how you are today or is this how you would be? And I'm not judging you, but no,
- [30:00]
B
this is how I would be. But it honestly, I, you know, I mean, trust me, it's like a people criticize. I, I appreciate how I am because I wouldn't, I wouldn't be able to manage him. I mean, listen, compared to. It's incredibly challenging with an infant, it's incredibly challenging with a toddler. I mean, the couple hiccups the last couple weeks have been going to his friends and then setting them, setting like snacks out and like not understanding how much is he gonna eat of that and then bolusing too much and then not bolusing enough and just, you know, just. It's very chaotic feeling. It's not like, enjoyable. You know, for me.
- [30:42]
A
You are gonna go through every station of diabetes, almost like every freaking one of them.
- [30:49]
B
And I understand every different like phase has its own challenges, for sure. I mean, I've seen the different. It's. But in a nor, you know, I mean the kitty. I mean, we, we stay away from wheat products. I just find grain to be so difficult to manage. I mean, we, I mean, we've stayed up 10 hours one night after pizza. It was just like, this is not worthwhile in my, like, my opinion. It's. It's so chaotic. And then the fear of like a really a dangerous low.
- [31:21]
A
Well, it's such a small amount of insulin too, that does such a big. It has such a big impact.
- [31:26]
B
Exactly. I mean an extra 0.1 can. Last summer. My parents live in Michigan and we were out there for a week and we weren't looping at that time. We were on just the OP5, OmniPod 5. And in the middle of the night, out of nowhere, his Dexcom wasn't connected. It was like a brief sensor issue. And for some reason the pump was giving him autobolusine 0.3, 0.2, 0.2, which is not again diluted. So that's.03002, like teeny amounts of insulin. But for him, in the middle of the night, it's massive. And I didn't wake up to an alarm until he was around 60, gave some juice, didn't stop, was 44. And then I fingerprint and he was 22.
- [32:17]
A
Can we take a left turn for a half a second? For those of you listening who don't know Jewish people, some of my wording will sound weird to you, but Jews in Michigan. So like, and Zevi, are you guys like Ashkenazi or Hasidic?
- [32:31]
B
No, not at all.
- [32:31]
A
No.
- [32:32]
B
Not religious whatsoever? Yeah, no, we're, we're Ashkenazi. I'm very culturally Jewish. Both sides of my family are like, very Jew, like Jewy of Jew, but not, you know, at the most reformed temple. Zevi means wolf, which was like I. Each family member in my family, like growing up, we had like these animals at our lake house, like painted on a cabin, and I was the wolf. It was kind of thrown out as a suggestion by my mom for a name. And I only know of one Zevi.
- [33:03]
A
Okay. Because you threw me when you popped on the camera. That was your hair. And then you said his name was Zevi. And I was like, none of this is making sense to me. So I. And by the way, my friends who are listening, who are Jewish, are so proud of me right now for pulling this apart. And the rest of you are so confused. So I'm sorry. Yeah, yeah.
- [33:18]
B
So confused. Yeah. So confused.
- [33:21]
A
But okay. Okay. Awesome. So you just like the name?
- [33:24]
B
Oh, I just love the name. Yeah, I just thought it was unique and it, it in Hebrew, it's like stands for loyalty and family. And I wanted to name it, name him in a way, like honor my dad's parents.
- [33:38]
A
Oh.
- [33:38]
B
Had not yet been like recognized for by the other grandchild, like in their names.
- [33:43]
A
Oh, I see.
- [33:44]
B
And they were very, very family oriented, very loyal. Like that was kind of, you know, what, you know, defined them so lovely. It was, you know, kind of a tilt to my dad.
- [33:53]
A
So tell me how you see this going, because I imagine you have game plan this diabetes out to your death and already figured out who to put him with if you go. Like, you probably got this worked out six ways from Sunday. So.
- [34:07]
B
You know, it's funny, I don't. I future trip, but I'm not like a. Like I used to just book a one way ticket somewhere and just like arrive in Guatemala and be like, where am I staying?
- [34:19]
A
Yeah.
- [34:20]
B
So I don't always. I have plans for sure. It's more just like, I know this is working right now, if that makes sense. But I think about him. My goal is to involve him as much as Possible. Like, he knows how to check his sugar. I mean, does he do it perfectly? No, you know, he kind of moves his hand too much, you know, But I. He helps me with his pump changes. He helps me with his Dexcom. He knows all his, you know, everything that's going on. For the most part. There's a lot of guessing of what he'll tell me what he wants to eat, but it's like, but are you going to eat that or are you going to decide in two minutes that you actually want apple and peanut butter, but I only dosed you for the scramble, you know, that kind of thing. So as he gets older, I think that part will feel a lot easier that the dose is not. I'm going to give you 12 units, and if you don't dilute it again. So 12 sounds probably massive for his size, but it is a big dose in breakfast. But breakfast, he just needs like, two, three times more than any other time of day. But if he doesn't want that, then I know that he's always going to want, like, two grapes, you know, and also, 10 units is big. There's. I don't carb count, really. I mean, I kind of do, but I don't. I don't use, like, ratios. I kind of, like, look at. I don't know. I have, like, made up my own way to do it.
- [35:34]
A
You're Villa Sing.
- [35:36]
B
I literally vibe bolus. I kind of look at it and I go, well, you have this much on board. You were just running around. You're about to sleep in two hours. I don't want you to have too much in you, but I need you to have enough to avoid that. And then I think that you're gonna probably want some Larabar. And maybe, you know, maybe you'll have a little bit of this. And this looks like two units, but this really needs five units. And I don't know how to explain to someone how it. Which is the reason that no one else can really take care of him.
- [36:02]
A
There's too much nuance. And. And I would IM too, that it's probably the height of. As soon as you figure something out, something changes too.
- [36:09]
B
Everything changed. I just also discovered. I think this is what it is because I can't make sense of it otherwise. I thought he was getting sick constantly, like almost getting sick, but not showing symptoms. I didn't know that you could have growth hormone spikes during the day. So all of a sudden at like, around 10am not every day, just all of a sudden. So I have to like, be ready for it. He could need an extra 8 to 10 units. But I also. That one time that I was like, okay, this is it. And I bolus six units up front, he tanked. Because it wasn't that. That day. So there's just so many.
- [36:43]
A
You what? What's the U. You're using the Humalog U10.
- [36:49]
B
So it's 1 10th. I'm just gonna look at his sugar real quick. Okay. He's up at 1083 now.
- [36:53]
A
So he's using U10 right now.
- [36:55]
B
U10. Yes. 1 10 the strength of normal hemolog.
- [36:59]
A
Right. So a. A unit of your bolus insulin is
- [37:04]
B
0.1 for most people.
- [37:06]
A
Is point one for most people. Okay.
- [37:07]
B
Which is like. So when people say to me, like. Like, I. I follow a lot of different. Like, type one. That's kind of how I use social media. It's either that or, like, parenting. Like, put this activity together in the morning kind of thing. I surprise them every morning with something. So I follow type one stuff because it's very educational. So, like your podcast, Facebook group, and the diapers and diabetes one and mom's a type one. You know, that kind of thing. And then I follow some, like this Addie T1D. I don't know what her thing is, but I like watching her stuff because
- [37:36]
A
she has dark hair, right?
- [37:38]
B
Yeah, she has dark hair and she runs. And it's fascinating to me to see how her blood sugar is affected with running. And, you know, I think that she kind of smart carbs it, but at the same time kind of goes for it when she's, like, traveling, which is not necessarily exactly how I eat, but I want Zevi to feel like he has more free. I mean, I smart carb it kind of with him, you know, I just, you know, I mean, that's just how I would feed him probably, anyways. Like, I don't give him junk food, but define that. It's just interesting.
- [38:06]
A
Define that. Define smart carb.
- [38:08]
B
I guess I don't really even know. I. I just try to feed him whole foods. So we still have dried mango, but I'm not giving him. I'm not feeding him goldfish. I'm making flaxseed homemade crackers or almond flour crackers. Or I'm making, you know, we have cupcakes, but I make it with egg and almond flour and a little bit of maple syrup. And he needs a lot of a decent amount of insulin for it, but there's no spike, so it's just like a hefty. Temp basil for like two hours kind of thing.
- [38:35]
A
Mango sounds good. Do you make that yourself or do you buy that?
- [38:37]
B
No, no, no, I buy it, but this is where I used to give it.
- [38:42]
A
Can I stop you for a second? I love when you laugh at yourself when you know you're about to say something that most people are going to be like, what is this lady talking about?
- [38:50]
B
What is this lady talking about? She's insane. Yeah, no, I get it all the time. People just kind of like, you know, like, really? Sabrina? Well, so what I do is I take like press' n Seal and I rip off little pieces and he has to open each. It's the only way that I don't have to dose him a massive amount of insulin and I can sugar surf while he gets dried mango.
- [39:11]
A
Wait, so what do you, like, you make him get it out of the package himself to make create time.
- [39:18]
B
I like prep it where like I break it into pieces so it's like individually wrapped, basically.
- [39:23]
A
Okay.
- [39:23]
B
Because otherwise instead of having to give him 15 units for one piece of mango that he'd eat in a second, he can typically almost not get dose if it's on the tail end of the dose. Like if it's peaking and he has 10 units still on board, I can just give him a handful of little tiny wrapped mango bites and he'll unwrap em. And he likes collecting and throwing in the trash.
- [39:46]
A
You must love the way I talk about insulin, huh?
- [39:50]
B
So your Bold with Insulin episode, I was doing that. I just didn't understand what I was doing. Does that make sense?
- [39:56]
A
No, I hear it when you're talking.
- [39:58]
B
And so when I had a friend, I haven't seen him in forever, I was going to say his name and I was like, don't say his name. No one knows who he is. I understand what you were saying earlier now, but his daughter was diagnosed at 3. So when Zevi was diagnosed, another a mutual friend was like, you should reach out to him, you know, and of course, I had no idea that his daughter had been diagnosed. And I, we text here and there, like, you know, oh, you could, you know, try this for the pizza crust or try this for, you know, whatever. And he was the one that was like, you should listen to this Bold with Insulin. Because I was already kind of like sharing with him how I've been approaching it.
- [40:31]
A
Yeah.
- [40:32]
B
Because I, as much as lows give me anxiety at times. Not really, but if there's a lot on board, I'm like, shoot, you know, what am I, I Have these little gummy packs. Like, they're just like, Solyer, I think, is the brand. And that. That can handle anything. But
- [40:52]
A
it's like jet fuel.
- [40:53]
B
It's jet flow. Yeah, that. I mean, it takes a second, and once it kicks in, it's like, oh, my gosh. You know, But I can handle it if it's on the tail end. Right. So everything's just like, on timing. But I. The highs, I mean, he's almost never high. So, like, he was four hours high on Sunday after, like, a barbecue thing, and he was all right around 70 for like a whole hour. Like, I almost couldn't get him up. And then all of a sudden, the cup get filled. Like he didn't need any more almost. And just. And I thought his pump failed. I couldn't get him down. And then. Then slowly started coming down.
- [41:26]
A
What was the high number? How high?
- [41:28]
B
I think he went up to 260 that day. So not like anything crazy, but again, I'm on top of the insulin, so
- [41:34]
A
otherwise more so than you're accustomed to.
- [41:36]
B
So, yeah, it was. You know what, in those situations, it's. It takes away from my ability to just connect. Like, other people might not realize what's going on in my head, but it's. It is a second. But, I mean, it's always a second by second managing for me because I'm trying to anticipate what he's going to want to eat and, like, what. Who's going to have food, you know, like, okay, maybe I should start a pre. You know, a temp Basil right now. So whatever. But it takes away from the, like, enjoyment of, like, being at these, you know, at these parties. No, I know when that happens because I'm like, is this pump not working? Like, did he knock it? Because he just tackled his friend who hit his head on the fence, and Zevi has a bump on his head or Zevi just bit him on the shoulder now, you know. Yeah.
- [42:21]
A
So I did this experiment one day where I thought for sure I'd be able to see Arden's blood sugar in her face. I took pictures of her, like, all day long, and I would take a picture, and then I connected it to her blood sugar, like. Like, you know, dark circles under her eyes or anything like that. And then I put them aside, mix them up, and then tried to guess the blood sugar by the. I could never. And I was like. I spent like, two days trying to figure that out.
- [42:46]
B
Oh, that's interesting. I smell breath. So that's like, a big thing for Me is I, I'm a very big. Yeah, yeah, it's, it's a, it's the weird like that, like a non diabetic parent would never understand of like trying to figure out these little quirks to like, you know, oh, maybe I'll be able to see it before, you know, or maybe I can smell it before, you know.
- [43:06]
A
And then I got, by the way, I got to the end of my experiment. I was like, well, that's not valuable. So like. But I was just looking.
- [43:11]
B
That's good to know because maybe that would have come across my desk at some point and I could be like, yep. No.
- [43:15]
A
Looking for some way to figure it out without poking your finger. Like, just point me in a direction. So my point is that I am, I'm well aware of that feeling of that you're just constantly taking in all the data around you, even though you don't know how much of it's actually important. Hoping that something's going to suddenly make sense or help you take a leap or something like that. I, I hope for you that that will slow down. By the way, like when he gets bigger and you can.
- [43:42]
B
I know it will. You know, I also. Yeah. There's just a lot that I know there'll be other challenges, of course, like puberty, all that kind of stuff. But this will. He can understand. I mean, he understands. He just, he hates waiting for. I've been starting, like trying to like put a time let's put a timer on to pre bolus and he just hates it, you know.
- [44:00]
A
Yeah.
- [44:01]
B
And I try to make it fun and silly, but it's just, you know, no toddler wants to, like when they want something, they want something.
- [44:06]
A
You know, I've come to the conclusion after making this podcast for 12 years that there's nobody on the face of the planet that wants to pre bolus their insulin. And I understand why.
- [44:14]
B
That's why I'm trying to constantly anticipate so he doesn't have to kind of suffer through the pain.
- [44:22]
A
Listen, I'm gonna. Yeah. Butt you just for the people listening who are like, she gotta calm down. But like, I'm gonna tell you right now, I would just do what you're doing.
- [44:29]
B
So, you know, I mean, listen, his A1C is 5.3. He's in range 92 to 99, 100% of the time. His average glucose is, if it's not a crazy whatever, it's somewhere between 100 and 105, sometimes 95, sometimes standard deviations 17 to 22. You know, I mean, he's very stable.
- [44:51]
A
You know, talk about how loop has helped you with that. If it. If it has.
- [44:55]
B
Yeah. So again, the loop was really with the intention of nighttime because. So he was a heavy nurser before diagnosis. And obviously leading up to it, he was nursing like crazy, and I didn't understand what was going on or, like, I just thought it was normal, but everyone else was like, he should be sleeping through the night. And I was like, I don't know. He just wakes up to nurse seven times, you know.
- [45:18]
A
Yeah.
- [45:19]
B
But the. The nursing was what used to. I mean, I'd be up for. So I would nurse him in the middle of the night. Say it was like 12am or something. And before looping, I would. He would nurse. And if his sugar wasn't high, like, wasn't above 120, I couldn't dose him because then he would drop low because the milk takes about 30 minutes in the middle of the night to kick in.
- [45:45]
A
Okay.
- [45:46]
B
So I would have to just keep myself awake. And once in a blue moon, I would fall back asleep, and then he would. I would miss that window, and then he'd go high, and then it would be, you're chasing the hot. You know, you're timing the insulin wrong. So I would be up every time he nursed for, like, about an hour. And which is incredibly exhausting when he's up nursing three, four, five, six times a night. You know, typically, you know, now he doesn't nurse as often. Last night, a couple times. Times most nights, nurses asleep, and then, you know, nurses maybe around 5, 5, 8, 30 in the morning. You know, I mean, he's two and a half, so he's not using it in the same way, you know, as much. But the looping, I wanted the auto bolus, like, it communicates better with his Dexcom, and, like, I can have settings that it just. It work. I mean, and also, the target on OP5 was at 110. And personally, not that 110 is terrible, but if he can be running at 80 and steady with almost no insulin on board, I much prefer that to 110.
- [46:50]
A
Okay.
- [46:51]
B
So it, you know, once I can kind of, you know, despite growth hormone spikes during the night, and that takes, you know, a handful of units to get him down, and then I kind of wait till he stabilizes. But normally if he's just, you know, it just. It keeps. I mean, he's real steady through the night, and then there's just off nights that get an extra 0.2 that he would normally get anyways. For some reason he's just extra sensitive. And then he goes low.
- [47:14]
A
Yeah. I love how your brain effortlessly jumps between the U10 and the point and the actual measurement. Like or, or is that not what's happening? Are you actually.
- [47:22]
B
It's 0.2. Yeah.
- [47:25]
A
Wait, okay, so 0.2 of U10, which is 0.02. And how much does he weigh now?
- [47:31]
B
He weighs about 28 pounds.
- [47:34]
A
Okay, 29.
- [47:35]
B
Yeah. So he. There, there, there's been a lot of. So in the last July, one of the things I had shared with you. So last July I started at his endo appointment. I was. Or August. I mean he. For the month leading up to it, he was saying, mom, I'm tired, mom, I'm tired. And I was like, this doesn't seem right. Like I don't know any 20 month old who's telling me that, you know, they're tired, you know, and wanting to go back to sleep. So we did some blood work in November and only one level like as alp, it was like a alkaline phosphate that was like relatively pretty elevated, not super elevated. And then by January he basically had a month, five weeks straight of diarrhea. And I was on the phone with every doctor I could think of trying to figure out what was going on because he was itchy and it was causing. In some ways his sugar wasn't so affected. But at other times it was, it turns out, well, the lab at the hospital messed up the viral swab the first ER visit because we had to sedate him to get blood drawn because he absolutely loses his mind in a blood draw. He had rsv, tested positive for salmonella and had a parasite. So there was. Yeah, it was insane in this, in the winter. I don't even know how because like I'm a clean freak. And like he eats really like fresh food. I mean we throw out stuff after two days, you know, it was just a crazy.
- [49:06]
A
Well, tell me how, how's all that get handled? What, how. What kind of parasite? How do they find out a parasite?
- [49:11]
B
We were at a GI doctor.
- [49:14]
A
Oh, because of the diarrhea.
- [49:16]
B
They looked for that by the dia. Yeah. So you're doing like a ton of stool tests and we. He ended up. I'm not, I'm like an antibiotic person. Only if you absolutely, absolutely need antibiotics, you know, kind of thing. I don't just like free, you know, willy nilly them. And he went on one round and it has like turned everything around. But, but it's all these Little things that people when. Like, when he gets sick, you know, or if he has a cold, it's not just like, oh, he has a runny nose. It just wrecks havoc on, like, his insulin needs can, like, triple. It's so unpredictable. And so the winner was just insane this past winter with, like, trying to figure out everything that was going on. But. But so my. That's where it's like, okay, yeah, I'm neurotic and I'm incredibly type A. But I caught it. I mean, I was so annoying to the endo receptionist that she literally hung up the phone on me because I had so many call tickets in. And I was like, can you just please speak to me a little bit? Kinder tone. And she hung up the phone. And I want. And that was before we found out everything that was wrong. And I wanted to, like, call back and be like. Just so you know, like, something was actually really wrong. You know, he was very ill.
- [50:28]
A
I was right, and you were wrong, and you should have been nicer to me. And you're not good at your job.
- [50:33]
B
I mean, he hadn't gained weight in, like, four months.
- [50:37]
A
Oh, my God. Well, yeah, that's no good.
- [50:39]
B
Yeah. I mean, there was a lot going on.
- [50:41]
A
So my only disappointment with that story is you said ton of stool tests, and I really wish you would have used a liquid measure to make that statement. But other than that, I was. I was really happy to hear.
- [50:50]
B
It's a lot. A lot of poop tests.
- [50:52]
A
A gallon of poop tests. Got. It was a gallon of them. It's funny, isn't it? Because I think it would be interesting. I think it would be easy for people to listen to you. You don't know. And I'm from the Northeast, so in my mind, you're not speaking quickly. I'm actually, like, you're at a comfortable pace for me.
- [51:07]
B
Am I speaking quickly? I speak quickly.
- [51:09]
A
I imagine everyone else is like, holy hell. Did I put this on time, too? By this. Yeah. Like, if you and I let go, like, in a. In a. In a. Just like a party situation, I imagine we'd just be talking over each other the entire time and still following the conversation.
- [51:23]
B
But I would follow the conversation 100% tangential. Like, it's just, like, it just all over the place. Like, this tangent. This tangent. This tangent. Like, yeah.
- [51:30]
A
I'm only aware of it because I know people are listening, and I don't like to put voices over top of each other. But if you and I were just speaking, I. I know that When I'm talking and you're talking, we're both hearing each other, so.
- [51:40]
B
No, I. Yeah.
- [51:41]
A
Yeah.
- [51:42]
B
So I apologize to anyone.
- [51:44]
A
Don't apologize. I'm making the point that, the bigger point that to some of the people listening, you sound like you're out of your mind. But I also raised a two year old with type 1 diabetes, so it doesn't sound crazy to me. And look at all the things that you've figured out along the way by being this attentive. And so while I think some people might be like, oh, she's gonna burn out, I don't know that you will. You might. This might just be how you are.
- [52:10]
B
It's kind of how I am. But also doing all of this is. I mean, I manage it. So, like, I just underst. I can. I. I understand how his body's re. It. The difference of even just six months ago for me is massive.
- [52:26]
A
Yeah.
- [52:27]
B
It ends up allowing me to give him like a steadier, like, day to day, because I know how to anticipate and manage it. Does that make sense? Like, it causes me less stress to have done all this work in like a neurotic way to figure it out as opposed to just like, oh, let's just go on a roller coaster.
- [52:45]
A
Yeah. No, no, no. I agree. Do you imagine yourself like. Like this getting less, lesser as time goes on? Like, do you want to be looking at it less, moving forward?
- [52:56]
B
Yeah, I think. When. I don't know. I mean, I. I hope so. I. Some of that will be, mom, I want one slice of pizza. You know, I want you. You know, I want this. I want, you know, the. Because I. If he wants more, I give him more. I might say, like, you know, if I don't have the insulin pre bolus and I know he's about to nap, I do kind of fib of like, oh, we're out of Larabars. You know, we don't. That was. That was all we had, you know, that, that half. Because I don't want him to go low during his nap. Like, he, He. He'll either skyrocket and I don't give enough or he'll go low, and then I'm disrupting him and it's.
- [53:35]
A
You know, you're giving me ptsd thinking about after your nap time. Jesus, the naps are just.
- [53:41]
B
I mean, when. When he stops napping, I feel like the days will even be so much. I understand. Like, I'm so hyper vigilant with. Makes the day so much easier when I'm Just like, on it, if that makes sense. Like, it's so much more stressful when I'm not watching it diligently. Because something, because he is so sensitive. I mean, he shot up to 275 a week and a half ago or two weeks ago at our friend's backyard. Because I was 50ft from him and he wanted strawberries. I didn't bolus him right in that moment. And he had two or three strawberries, and he had 10 units on board already.
- [54:17]
A
It didn't matter. Right?
- [54:18]
B
And it didn't matter. And so then I spent four hours trying to safely bring him down before bedtime versus if I just was right there.
- [54:28]
A
And it wouldn't have happened.
- [54:30]
B
It just wouldn't have happened. And, and because I can't expect other people to understand, you know, I, I, Yeah. Does that make sense?
- [54:39]
A
Oh, no. Yeah. You're gonna sound crazy to people who don't know about diabetes.
- [54:42]
B
Yeah. And I, trust me, I hear it all the time of, like, you need let other people take care. And like, how he's dropped from 100 to 44 in 10 minutes. And he, There was like, almost no reason.
- [54:53]
A
What are you gonna do about it? Because I'm the only one staring at him like this.
- [54:56]
B
Check his blood sugar manually.
- [54:58]
A
You're his own personal AI assistant. You, you know, everything. Like, you have a, you have a large language model of, you know, information about his diabetes. But I'm telling you a couple things. Listen, I'll pass on a little bit of, of, of, of my.
- [55:11]
B
Yeah, please do.
- [55:12]
A
Yeah, my. It is going to get easier. You are going to need to let go as time goes on. Somebody is eventually going to be able to watch your son for you, and you're going to be able to go out.
- [55:20]
B
Sure. Yeah, for sure. Well, also, I'm hoping by including him that he will be, like, part of his own management.
- [55:27]
A
I hope so, too.
- [55:27]
B
You know, sooner than later, you know, that he can say, oh, well, you know, I'm going to have this. I need a bolus. This, you know, just keep in mind
- [55:34]
A
that is kind of like hippie dippy as it's going to sound. You can only put people on a path. You can't make them do something.
- [55:40]
B
For sure.
- [55:41]
A
Yeah. So, yeah, you know, there's going to be an episode that comes out in a couple of months, and it's recorded recently with this mom whose kid was diagnosed at, like, 15 years old. And this kid's, like, you know, athletic, on the ski team at school, like, you know, having a nice little Life diagnosed with type one quickly tumbles down a rabbit hole drinking, drugs. They had to send him off to a place like not a thing they thought was going to happen to him. And even as, and he's a thoughtful kid, like, it's not like he was just, you know, he's got adhd, he was probably self medicating, you know, but it tumbled quickly on him. And my point is, is that like, you know, a year before that, that was not on their radar at all. And even as they're trying to help him and he's open to the help, it's still like people are really on their own course and you can only do so much. So I say like, I like everything you're talking about, but if it doesn't go exactly the way you're imagining it, you're going to have to be flexible and, and bend with Zevi and do you know what I mean?
- [56:45]
B
I hear what you're saying. Yeah, no, I, I think I, my goal is to show up how he needs me. Does that make sense?
- [56:53]
A
No, I think you're going to do a good job.
- [56:55]
B
Yeah, it's how I think is best, you know, because he's two. But, but you know, I mean, listen, I, I, I want an athlete. He might just be a musician, you know, and which I was a musician too. But you know, I, I, you have to, I, I hear what you're saying.
- [57:13]
A
Yeah. You can only do what you can do.
- [57:14]
B
It's very hard when it, it is related, directly related to his health.
- [57:19]
A
Oh, I know.
- [57:20]
B
Keeping him alive, you know, so when people are like, oh, which I know, you know. Yeah, it's when, when you know, people, I mean, I constantly hear it from especially family of, you know, who don't live by us, so they've not really seen the day to day and understanding, you know, well, someone has to be able to watch them and it's like I don't think you understand how nuanced this is.
- [57:41]
A
Who's that going to be exactly right now?
- [57:43]
B
It's, yeah, it's just not.
- [57:45]
A
Yeah, listen, I'll tell you this too. Like, I'd be remiss not to tell you you need to sleep more than you think you need to.
- [57:52]
B
Oh, I know my sleep is, I'm so much better than it used to be though.
- [57:56]
A
Good, good.
- [57:57]
B
So much. Yeah, no, I, Yeah.
- [57:59]
A
My expectation is you'll look back one day and just see this as a fraught time that you put a lot of extra effort into because it needed it and then you backed out. Of it slowly when it didn't need as much. And if you do that, you're going to be right on. If you don't do that, then he's going to hate you. You're going to hate this like it's going to. You'll be ragged. I also, you know, you're an older mom when you started, so you have no idea what's going to happen in the next five years. I can tell you because I've been there. But like this, like staying up and it's all okay. It goes away really quickly.
- [58:29]
B
Oh, it's. Yeah, it's. I mean I sleep so much more than I was.
- [58:35]
A
Sounds like okay.
- [58:36]
B
Yeah, yeah. No, yeah. I probably just sound cracked out and I, and I'm not a coffee. Like I don't, I don't take anything. So this is just pure. You know, I usually say to people
- [58:49]
A
and they're like, oh my God. God. Like I'm like, imagine me drunk or high, like what a. What an unnecessary level up that would be. Yeah, yeah, yeah, no, I hear you. I think you do. Listen, you're in a really difficult situation. It's incredibly difficult. I've been through it. I was, Listen, freestyle meter test strips, syringes. They didn't even give me half unit syringes right away. I had to like find out those existed. And the lily red glucagon box, that's what we had in the house.
- [59:18]
B
Yeah.
- [59:18]
A
So. And Levemir and it was Lantis at first. And Novolog. I think we figured out the Lantis was burning. She like it stung her. So we moved to lever.
- [59:30]
B
You guys didn't. They didn't have Dexcoms when she was first diagnosed, right?
- [59:34]
A
Yeah, nothing like that.
- [59:35]
B
That to me, that is, I mean we still finger poke a lot, but that is like, I mean literally saved his life in the hospital. I mean every. I couldn't. I would be poking him 200 times a day. I mean 300 times a day.
- [59:50]
A
I had it down to about 13 to 15 if you did it in the right places.
- [59:55]
B
Yeah, yeah.
- [59:57]
A
You know, I've told that story before. Like when I hold Ardyn's hand, like I realize I've held Arden's hand through like every day of her life almost.
- [60:04]
B
Yeah.
- [60:04]
A
You know, because of the finger pokes. And it's funny now, like, I mean she still does them, but it's not. Obviously you're not doing it 13 times a day anymore.
- [60:12]
B
Yeah, yeah.
- [60:13]
A
It's just, it's a. I, I don't use this word. Hardly ever. But those things are a blessing. Like, that's why when I see people, like, get me about them online, I'm like, you, you know, be careful what you wish for, because.
- [60:25]
B
For sure. Yeah. No, I, I mean, I was pretty frustrated last week. I think it was just the amount of, like, this one failed, this one failed, this one failed. At the end of the day, I'm so. I mean, and when people say they, like, leave the hospital without them, I'm like, what? Like, I would be like, banging on the door. I mean, the first moment you're diagnosed, you should get a Dexcom on you. Like, I had a pump on him within, I think, day six or seven in the hospital. It is unbelievably helpful. It's just. What also it gives you is a ton of information, which I love. But I do go back to, like, the whole ignorance is bliss. Like, I understand why people weren't so hands on years ago because you just didn't know what was going on.
- [61:17]
A
You know, this really is, I think, a thoughtful story, but if. I hope no one can attribute it to anybody, but a long time ago, I knew a person whose child had type 1 diabetes, like, way before the game. Like, you know, like, way before a, you know, probably 10 years before Arden, you know, whatnot. And that person, when CGMS first came out, they were, you know, pretty vocal about, like, you people are out of your minds. My kid has, you know, been living with this forever. You don't need these things. They're gonna make you crazy. People are staring at these numbers all the time, Blah, blah, blah, blah, blah. You don't know. It's easy, blah, blah. Then one day, their kid, as an adult gets one of those things, and then they pivot to like, these things are amazing. They're magical and blah, blah, blah. And I'm like, oh, okay, I remember you saying what we all doing, but whatnot. And now more recently, their. Their child has, as an adult, shared. They're having a complication already at a fairly young age.
- [62:13]
B
Yeah.
- [62:13]
A
And I, I, of course, that's. I, that's terrible. And I don't wish that on anybody. But I think it's just a good example of, like, you only know what you know.
- [62:22]
B
Yeah.
- [62:23]
A
And I agree. Yeah. And people get defensive of the way we did it all the time. Like, oh, you don't know the way I did it. It was much better. Like, I could. If you want me to tell you how much better Guns and Roses is. Is than Sydney Sweeney, I can absolutely tell you that. I don't know if it's true or not. I just how it feels to me. And, you know, because I live through a certain era when it comes to this. People can call you crazy if they want to, okay? But you. Your kid's gonna have a far less likelihood of a complication because of the effort you're putting in right now. Now, that's up to you and your husband to decide if that's a fair trade off for your life. If my wife.
- [63:01]
B
How it is. It's not even like a second thought. But, yeah, no, I.
- [63:05]
A
That's how my wife and I thought about it. As soon as Arden was diagnosed, I would say to myself, like, all right, look, she didn't ask to be here. We did this. Like, we brought her here, and now this happened. It's beyond anybody's control. This is going to take an extra level of effort from me now, and that is going to mean that some things that I expected from my life are not going to happen. And I gotta be. And I have to find a way to do that without being shitty about it to her or to anybody else. Otherwise, I'm just gonna create a different problem somewhere else. So the way I used to say it is, you know, you find people all the time when they're talking about having babies or they're pregnant. They're like, oh, you know, I'd throw myself in front of a bus. Or if somebody shot at us, I jump in front of the bullet. And some people jump in front of the bullet, and some people don't. Some people hear the gun and go, oh, oops, I couldn't get there in time. And you. You decide which one. Who you're going to be in that. But be honest about it. At the very least, like, I love how forthcoming you are about it. You're just.
- [64:03]
B
Oh, no, I am. I. I am not trying to hide the fact I'll literally do anything. I have. Zevi just came in here. We woke up a little. Are we upset? You just wanted me. You okay? You want to say hi? Say hi. Scott.
- [64:17]
A
Zevi. How are you, buddy? How was your nap?
- [64:21]
B
Well, we just woke up from the morning, and I think that we were just wanting. Mama.
- [64:25]
A
Oh, this is. This is the morning. Wake up. Oh, yeah, you're in the west coast.
- [64:28]
B
Yeah, we. I. Yeah, I've been up. What are we at? 76. Okay. Yeah, it's still this.
- [64:35]
A
Look at you. You fixed. You fixed the low, and you have him at 76.
- [64:39]
B
Yeah, it's. But, yeah, he's.
- [64:41]
A
It's he's gonna be hungry.
- [64:43]
B
Yeah. Yeah, he's gonna be hungry.
- [64:45]
A
Yeah. What's for breakfast?
- [64:46]
B
How you doing? I don't know. What's for breakfast? Want green eggs? Yeah. Yeah. Should we make green eggs? Yeah. Do you want, you know what we haven't done in a while is waffles. Should we make a waffle this morning? Yeah.
- [65:01]
A
Well, you're gonna make me cry. I feel so old.
- [65:06]
B
There you go, bub. There's a little bit of juice. Yeah, he's still kind of, he went up a little bit. Not really. I don't think he even went above 90.
- [65:15]
A
Wow. Yeah. Was it. Well, you, you said he got too much insulin.
- [65:18]
B
One unit, one normal strength unit that was given. This is how much it's taken to.
- [65:25]
A
But you know, but I also think great learning experience there because yeah, that's
- [65:29]
B
a lot of insulin, but I still have to like recreate. I'm just like still trying to understand how. Yeah, I, I, I mean I, I was like seeing cross eyed. I know at 3am in the morning. But, but yeah, hi Zest.
- [65:41]
A
I mean I wouldn't spend a lot of time trying to figure out what you did when you were asleep. Just, you know that I don't know that you're going to come up. I don't know that it's going to be messed. Just you probably did some, you probably pushed the wrong buttons and that's that. But you know.
- [65:54]
B
Yeah.
- [65:55]
A
Well, I appreciate you sharing this all with. I'm going to let you make waffles.
- [65:58]
B
I think I got to remember to play that song for him.
- [66:01]
A
I think it's a sad song about death. Hold on a second. It's still upbeat when they sing it.
- [66:07]
B
We play music and sing songs all day long. So he might kind of, I just
- [66:11]
A
won't, just won't tell him what it's about, that's all.
- [66:15]
B
I won't tell you what it's about, Bob.
- [66:17]
A
Gosh, no. You know, it's so funny because I grew up with like FM radio, but that sounds like an old thing to say now, but I've heard that song a million times in my life and
- [66:26]
B
I did too, but you sound older
- [66:28]
A
saying I now don't know that I know what it's about. So anyway, I really appreciate you doing this. I, I have to tell you.
- [66:36]
B
Oh, no, thank you. I, I do, I do want to say just how I certainly don't listen, have the chance to listen to every single episode. But it has been, it's just refreshing having information that is actually helpful. I really appreciate our endocrinologist, but we have certainly talked to other endocrinologists where it's just like you just don't know what you're talking about. And having like just connecting with especially other parents or have your community is spectacular. I just, I cannot thank you enough.
- [67:10]
A
So I appreciate it. I'm really proud of. Probably sounds odd to some people, but I see how many people it helps all the time and it's really awesome.
- [67:20]
B
It is invaluable.
- [67:22]
A
Hey, give me 20 seconds and then I'll let you go. American pie by Don McLean in plain terms, the song is nostalgic, symbolic look back at the loss of innocence in early rock and roll, especially tied to the day the music died, referring to the 1959 plane crash that killed Buddy Holly, Richie Valens and the Big Bopper. That's what it's about.
- [67:41]
B
But we'll just make it about waffles inside. We didn't bring the garbage truck inside? No. Is it in the garage? I think it's.
- [67:56]
A
He's already planning out his day. He's like, lady, lady, we left some stuff outside. We gotta get, we gotta get jumping here.
- [68:02]
B
We are very, very truck heavy household.
- [68:05]
A
So that's awesome.
- [68:06]
B
Do you want to say, say, Scott, have a nice day. Have a nice day.
- [68:11]
A
You have a nice day too. Zevi. It was nice to meet you.
- [68:14]
B
Thank you, Scott.
- [68:14]
A
Bye. Thank you.
- [68:15]
B
Okay, bye.
- [68:16]
A
Bye. A huge thanks to today's sponsor, Able Now. Able now offers tax advantaged ABLE accounts for eligible individuals with disabilities. If you or your child lives with diabetes, you may qualify because of ongoing medical needs. With ablenow you can save for a wide range of disability related expenses without affecting eligibility for certain disability benefits such as Medicaid. And thanks to recent federal law updates, more people are eligible than ever before. Learn more and check your eligibility@ablenow.com you spell that A B L E N O W.com there's links in the show notes and links@juicebox podcast.com Foreign this episode of the Juice Box Podcast is sponsored by Omnipod5. Omnipod5 is a tube free automated insulin delivery system that's been shown to significantly improve A1C and time and range for people with type 1 diabetes when they've switched from daily injections. Learn more and get started today@ omnipod.com juicebox@ my link you can get a free starter kit right now.
- [69:26]
B
Now.
- [69:26]
A
Terms and conditions apply. Eligibility may vary. Full terms and conditions can be found@ omnipod.com juicebox this episode of the Juice Box Podcast was sponsored by USMED usmed.com juicebox or call 888-721-1514. Get started today with USMED links in the show notes links@juicebox podcast.com. If you've listened to any number of podcasts or maybe watched a YouTube video, you're very accustomed to listening to the creator of that content. Ask you and sometimes just outright beg you without any feeling of self respect for you to follow. Subscribe, share an episode. The reason that happens in podcasting specifically is because podcast players don't have a sophisticated Recommendation engine like YouTube or TikTok does. They can't watch listener behavior and then give you content that you might like. Word of mouth skips that line completely. It's an instantly expanding reach engine and really the only thing I've ever found that helps to keep the Juice Box Podcast growing. So subscribe and follow because that the algorithm understands. Set up automatic downloads. Listen to the show, but share it with somebody else. Leave a five star review. Make it a thoughtful review that the algorithm can understand. I really appreciate the time it takes you to do those things and I hate that I have to say this to you because I feel like an idiot. But subscribe and follow. Tell a friend, please and thank you. If you're looking for community around type 1 diabetes, check out the Juice Box Podcast. Private Facebook group Juice box podcast type 1 diabetes but everybody is welcome. Type 1, type 2 gestational loved ones it doesn't matter to me. If you're impacted by diabetes and you're looking for support, comfort or community, check out Juice box podcast type 1 diabetes on Facebook. If you have a podcast and you need a fantastic editor, you want Rob from Wrong way Recording Listen, truth be told, I'm like 20% smarter. When Rob edits me, he takes out all the like gaps of time and when I go and stuff like that and it just, I don't know man. Like I listen back and I'm like, why do I sound smarter? And then I remember because I did one smart thing. I hired rob@worldwayrecording.com.