#967 Type 1 and Tetrasomy 9p

Vivian was diagnosed at 9 months with type 1 diabetes, she also lives with Tetrasomy 9p. Her mom Kim is here to tell us about it all.

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

Scott Benner 0:00
Hello friends and welcome to episode 967 of the Juicebox Podcast.

Today I'll be speaking with Kim. We're gonna be talking with Kim about her daughter Vivian, who is diagnosed with type one diabetes at nine months old. She also has something called Tetris Somi nine P. While you're listening, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan or becoming bold with insulin. If you'd like to get a little something for nothing, start using ag one with my link. Drink ag one.com forward slash juice box when you use that link. To get started with ag one. You'll also get five free travel packs and a year's supply of vitamin D. Also for free 40% off is that something you're interested in cozy earth.com Get all your comfortables that cozy earth.com towels bedding and clothing save 40% at checkout with the offer code juicebox. And don't forget the private Facebook group Juicebox Podcast type one diabetes on Facebook. Check it out, become a member and join the other 40,000 members some of whom have type one type two or other caregivers off. This episode of The Juicebox Podcast is sponsored by the contour next gen blood glucose meter contour next.com forward slash juicebox. These meters are incredibly accurate, they're reliable, they're easy to use, they're beautiful contour next one.com forward slash juice box do not walk around with a junky meter in your pocket. Get an accurate one. The after dark series from the Juicebox Podcast is the only place to hear the stories that no one else talks about. From smoking weed to drinking with type one perspectives from both male and females about having sex with diabetes. We talk about depression, self harm, eating disorders, mental illness, heroin addiction, use of psychedelics, living with bipolar being a child of divorce, and honestly so much more. I can't list them all. But you can by going to juicebox podcast.com. Going to the top and clicking on after dark. There you'll see episode 807 called one thing after another episode 825 California sober. Other after dark episodes include unsupported survivor's guilt, space music musician, dead frogs, these titles will make you say what is this about? And then when you listen, you'll think that was crazy. juicebox podcast.com Find the afterdark series. It's fantastic.

Kim 3:00
Hi, my name is Kim. And I have a daughter with type one diabetes and special needs.

Scott Benner 3:08
Okay, Kim, your daughter is an only child.

Kim 3:12
No, I actually have four children. He she has two older brothers. And then we had a bonus baby during COVID.

Scott Benner 3:20
What a lovely way to say that. It doesn't happen. I'm quite certain of that. Okay, so two older brothers. Younger. She's right there at number three. Are we using your name? It's okay. If we don't Sure. Yeah. Yeah,

Kim 3:35
I'm gonna accidentally say it a million times because I talk about her frequently. We are an open book because we feel that her story helps people and I'm all for it. Cool. What's her name is Vivian. Vivian.

Scott Benner 3:49
Do we call her? Or she Vivian?

Kim 3:51
Oh, she's Vivi. The VISTA. Vivian. All the all the above. Gotcha. How old is she? She is six now. She was diagnosed when she was nine months old. Wow. Yes. Extremely rare.

Scott Benner 4:07
Wow. No kidding. Yes. All right. So I guess Can you tell me a little bit about the diagnosis? How does it present in a baby?

Kim 4:16
Yes. So we had an extremely challenging first year of life for our sweet Vivian. I'm going to back up a tiny bit before her diagnosis just to give you a little background. She was a quiet baby. She slept a lot. She was very tolerant of her older brothers, Mike Choate. My top three are like 21 months apart each. So it's an it was an active household and the boys would put their full body weight into her to kiss her and she would just not even flinch. So we kind of equated that to her being a girl. We've never had a girl before. So we were just like, wow, she sleeps a lot. We finally have a sleeper. She's quiet. She's tolerant. She hated tummy time. That was one thing that we did. Notice and she also choked on her breast milk, constantly, every single feeding, she choked. And I brought it up to the pediatrician multiple times. And she kept saying, Oh, it's because you have a strong letdown, it'll show it'll regulate, she will learn how to how to deal with it. So then at our four month well visit, the doctor comes in the room, gives her a quick assessment, and I had my other two kids, they're getting flu shots or something. And my father because I needed kind of help to wrangle the children. And she says Vivian has low muscle tone, and I'm not impressed with her eye contact. I think she needs early intervention. And then she walked out of the room gave me the phone number walked out of the room. It was so quick that my dad didn't even know that it happened. Like he was sitting there and he didn't even hear it. Okay. So I come home shocked. And I did all the things called the number to talk to my husband. We were just completely in shock and in denial, and a little bit embarrassed, because by background, I'm actually an occupational therapist, and a nurse, and he's a nurse and a nurse practitioner. So we were like, how did we not know that she has low muscle tone? And how did we not know that her eye contact isn't great. But anyway, at five months old, she was evaluated for early intervention, and she started and when they came to our house, we actually said to each other like, she's not even gonna, she's not even a qualify, like, it's, it's, I mean, they're gonna come and assess her, but she's fine. You know, talk about talk about denial, they leave our house, and they're like, she's significantly delayed in all areas. She needs physical therapy, occupational therapy, speech therapy, and teacher the visually impaired, and what a punch to the gut. Like, we were just just in complete disbelief, shock, all of all of the above. So then she starts all her services, we're kind of getting on board with the idea that she has delays. And we're supporting her in every way we can. And she continues to choke on breast milk, the doctor continues to say it'll regulate it's fine. Then at six months old, she was hospitalized for RSV, which is actually like, really crazy right now, I don't know if it's crazy around your area. But RSV is just like a really, really bad cold. And she landed in the hospital just from having RSV because she was so frail, she was not strong enough to fight it off. She came home, she went right back in the hospital, again with RSV again. So she's hospitalized twice in the same week. And during that hospitalization, she had a swallow study done. And she was in fact aspirating the breast milk into her lungs. Oh my god. So I saw

Scott Benner 7:47
the doctor who said don't worry, she'll catch up drinking is the same doctor that said, I'm not impressed with her muscle tone, etc. Yes, yes. Yes, I saw all that, but didn't correlate the two things together. Yeah, and

Kim 7:59
I'm not sure if she would have at our next visit, but our hospitalization came first. And and they they just did a swallow study and boom, she's aspirating. So Subsequently, I changed Peters pediatricians after this experience, because as a mom with a child with special needs, and certainly a mom of a child that has special needs and type one diabetes, you need to be listened to you need to be heard by your providers. And I didn't feel that way. So we we have a new pediatrician, sidenote, so that six months old, she that hospitalization everyone was just like, couldn't all the doctors were just like, Why? Why is she so failure to thrive? Why is she aspirating? Why does she Why is she developmentally delayed meeting the services like we need to investigate this further. So we kind of got on the fast track to see a developmental pediatrician and a geneticist. So those both of those things were like year long waiting lists, but because she was hospitalized twice in a week, she got on the fast track for that. So we came home and we added feeding therapy to all her different therapies. And it was really crazy because in order to breastfeed her, I had to keep her sideline, support her cheek support her chin. It was a whole big rigmarole. But

Scott Benner 9:22
imagine as well, the pressure of thinking constantly that this milk is ending up in our lungs.

Kim 9:28
Oh, it was awful. And it's funny like I was I was gonna say the beginning I kind of like did a little digging in her old medical charts to kind of remind myself of the story. And god there's so much I completely forgot about and completely blacked out because there was just so much trauma, just so much trauma that we lived this first year. But anyway, so crazy crazy with the breastfeeding and the the issue was that she wasn't strong enough to get some milk from me. And because she was my third child I told my body thought I was weaning. Even though I was feeding an infant, my body thought I was weaning. So my body wasn't producing enough breast milk because she wasn't stimulating the breast enough with her poor strength and poor coordination in her mouth. So I wasn't, I wasn't providing her enough, either. Okay, so it was just an awful situation. And I did get tremendous support from the local hospital with as far as feeding and supporting continuing breastfeeding. So then at eight months old, we finally saw the we had seen the geneticist and at eight months old, we find out through a blood test that she has an extremely rare chromosomal difference, which explained everything of why she was having feeding issues, why she was having low muscle tone, why she was having developmental delays. So it was it was shocking. Again, it was like another punch to the gut. But at least we had a reason, you know, that these things were happening. And unfortunately, this chromosomal difference is so extremely rare, that at that time, there was only 66, zero people in the world that had something similar. So we had very little information about it, and we had no real connections or supports. But in a way, it was great, because we were going to let her write her own story. You know, if we don't know what's going to happen, then Gosh, darn it, we're going to support her in every way we can to maximize her potential, right? Because she's gonna she's gonna write her own story.

Scott Benner 11:34
So, so the thing that that is a skew is so I mean, rare, I think is the obvious word is so rare, that it's not even something that you can hold up to other people who have a similar problem and say, you know, like, I don't know, like type one diabetes, because a well, that person's pancreas doesn't blah, blah, blah, either does that one. And these guys have the same thing? It was the people who was justly have these problems, but they can't even put them into a into a bucket. Is that right?

Kim 12:06
Right. And we actually walked in to our first appointment with the geneticists to talk about the diagnosis with a packet of information that we got printed off. So there's a website called unique, and it's like all the unique chromosomal disorders and we found it, we printed this off. So we we come to the appointment with that packet of information, and the doctor walks in with the same thing. He's like, I did research, I found this packet, the only thing I have, and we're like, yeah, we already read it. And in this packet, there's, you know, a handful of children and adults that were interviewed and whatever and every single developmental area, it was so very, like, your child could be wheelchair bound, or they could be running, your child could have significant swallowing issues and have a G tube, or they could be eating with no problem. Your child could be nonverbal, or they could have no speech issues whatsoever. So we were just like, forget it, she's written her own story. We're supporting her. This, you know, let's move on. So then we come to May 5 of 2017. She had her another swallow study that basically showed her swallowing sitting up, and it was a disaster. So they basically were like, you have to thicken the breast milk. If you're going to give her breast milk sitting up, you have to second anything, you give her very significant swallowing issues. I come home from that swallow study. And I got the stomach bug, as did my entire household except for Vivian vomiting, you know, throwing and going the whole nine awful, awful illness, bed bound for four days, my mother comes over to take care of my children, because I literally could not get out of bed. And this little girl who had had such a such trouble eating and maintaining her nutrition and breastfeeding and swallowing and all that jazz, my Italian mother comes over and she's going, Kimmy, she's eating great. She just ate a whole you know, kind of baby food. And I'm just like, of course, my Italian mother can get her to eat and I can't

Scott Benner 14:14
know you're gonna say is definitely for some reason.

Kim 14:20
And then like this girl can net would never was able to, you know, manage a bottle like she, she needed cheek and chin support sideline to even breastfeed poorly. She would never be able to coordinate a bottle. She was taking, you know, sick and breast milk out of a bottle from my mother. And I'm just like, I'm just like, geez, like, of course my mom wins. And I'm like the worst mother ever, you know? Like, that's just what I thought. And then she started peeing through her diapers at night. And I said to myself, Oh, she's eating more and drinking more. So she's in she's bigger. She's a big girl. Now maybe we need overnight diapers. So I sent my husband out to get overnight diapers. Meanwhile, Scott, I have type one diabetes in my family. I am a nurse, my husband's a nurse, we should have known something i I'm still, I'm still kind of embarrassed with myself about not really seeing the signs. I really, truly in my dehydrated state thought it was just because my mom was awesome that she was eating and drinking more. And she was a big girl now needed overnight diapers.

Scott Benner 15:30
Can you tell me type one diabetes in your family? Who?

Kim 15:33
Yeah, so my uncle, so my mother's brother, okay. And he actually died of complications of diabetes because even you know, 20 years ago, they manage diabetes so differently. He never carb counted, right? He always like my entire life. He had a sliding scale long acting in a sliding scale. Yeah, he had major complications for it, but and then his grandson, so there is an I have Hashimotos My mother has Hashimotos. So the endocrinologist upon diagnosis said that we just have an auto immune family. And you know, she just got struck by lightning, but actually struck by lightning lightning twice because she had also been struck with this very rare chromosomal difference.

Scott Benner 16:19
I have to let me make sure the chromosomal differences is does it have a name?

Kim 16:25
It does. So it's called Tetra Somi nine p. So she has four copies of just the short arm of her ninth chromosome.

Scott Benner 16:35
I don't understand what that means. But I was able to go Yeah, okay.

Kim 16:40
And really like, it presents itself extremely, you know, varied across the board, no two children are the same, or two adults are the same. But with you know, for Vivian, her main issues have been swallowing speech. She is extremely apraxia with her speech. So she actually uses sign language, some verbal and a communication device to speak. And then she also has that low muscle tone in her trunk. So she's recording that she has significant visual issues. One of her eyes is nearsighted and one of her eyes is far sighted. So amongst other things,

Scott Benner 17:18
okay, we'll get back I just, I just need a little context where I will come back to that a little bit. I'm sorry, you keep going. So your mom, your mom gets her to eat. Now she's paying through the diapers. Yeah.

Kim 17:29
Everybody. Everybody had gotten a stomach bug in that four days, you know, except for her. I looked at my husband, I go listen, if she throws up even once we're going in. And he's like, agreed, because of our experience with the RSP. We just we knew she was going to need IV fluids. Right. She's so failure to thrive one vomit is it. So of course during that night, she vomited. We call the pediatrician. He says Bring her here first. It wasn't our it wasn't our pediatrician. It was a just whoever was there. He said bring her in first. We're just going to check her out. Now I had been taking her weights daily because of all her feeding issues that the doctors and the speech therapist feeding therapist wanted me taking daily weights. I hadn't been taking daily weights because I was so sick. So in that four days that I was sick. When she got to the pediatricians office and they took her weight. She had lost 11 ounces.

Scott Benner 18:26
On how big of a body at that point. Do you remember how much oh god

Kim 18:30
she was? She was barely 14 pounds. Wow. Okay. Yeah, yep. She came when she came home from the hospital a diabetes. She was 1411. Yes. So she lost 11 ounces and about four to six days I would say. So the doctor agreed she's majorly dehydrated. I explained to him like I don't I don't think she's been getting breast milk from me because I'm so dehydrated. Like she needs IV fluids. He goes agreed take her in. Now any other child that I had had previously, my two sons and even Vivian had she not had the RSV I would have said she's got the stomach flu. She wants to sleep. I'm gonna put her in her crib and let her sleep. When we got to the hospital, they took a blood everyone agreed she had the stomach flu just like we did. They took a blood glucose just for you know, I think it's just standard protocol. It's 597 and my husband and I, being nurses knew immediately what that meant.

Scott Benner 19:29
It meant you had to abandon your children and runaway you were just gonna leave for the two of you got a car and you're like that's it. We're done goodbye.

Kim 19:36
I like we said to each other, like if there was furniture to throw we would have grown it we were just swearing and screaming and the nurse even her when the the number came up. I remember her holding the glucometer in her hand was trembling, and she just goes and I know like as a nurse. She shouldn't have done this in front of us but I'm always glad she was She did, because it just shows how human nurses are. But you know, that deep down, she goes, Oh my god, oh my god, oh my god and just ran out of the room. And we're just like, you know, swearing, you know?

Scott Benner 20:15
Well, that's awful. I would have been like, okay, everything's on brand for us.

Kim 20:21
It was it was just so traumatic. So she was whisked away to the ICU, the endocrinologist comes to see us immediately talks about how rare it is to be under two. And how extremely rare it is to be under one. And I said to my husband, I go, if somebody uses the word rare with us again, I'm going to punch them in the face. You know, like, I am so sick of being rare. I'm so sick of hearing it. It was just, yeah, it

Scott Benner 20:51
was. It wasn't. It wasn't. Hey, Kim, do you know how rare it is to win the lottery last Thursday, and yeah, it's crazy.

Kim 20:57
So we always say we're not the win the lottery type of family where this be struck by lightning type of family.

Scott Benner 21:04
Like you are going to be the people who get hit with the frozen urine that falls out of the air.

Unknown Speaker 21:12
She gets whisked

Kim 21:13
away to the ICU, the doctors come and they're all talking about us. She was also found to have a UTI at the time. And we talked a lot about her hospitalization when she had RSV, just a few months prior, and how the RSV probably ignited the auto immune response and ignited her, you know, predisposition to diabetes. And they actually also told us that had we put her down for a nap, instead of coming to the hospital, she would not have woken up, because when we arrived, she was about one hour from death. That because she's just so she was just so frail, you know, just such a tiny little baby. So they had to take her to the ICU put her on an insulin drip because the blood sugars have to come down slowly as to not cause brain swelling. So she was monitored there for a couple of days. And then at the hospital, we go to there's, you know, the pediatric endocrinology unit, they actually have you demonstrate that you're able to take care of the diabetes before you can be discharged. So a typical hospitalization could be up to like 13 days, but because we were nurses, we sort of like showed them sooner than we were capable. We got out of there in I think nine to eight or nine days.

Scott Benner 22:29
How do you Bolus for thickened breast milk?

Kim 22:32
Oh my gosh. Scott, do you want to hear how crazy life was sick? I

Scott Benner 22:37
think I already didn't care. But if there's more Yes, please go ahead.

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Kim 26:01
So the other problem when she was diagnosed with diabetes is she completely stopped eating, she 100% stopped breastfeeding eating in any way. So she actually was an NG tube was put in so a little tube into her nose down her throat and into her mouth, or sorry, into her stomach, and she came home with an NG tube. So that's another thing we had to demonstrate competence in, but I was pumping in the hospital. And because I was so dehydrated for those days before her hospitalization and because she stopped eating, I was pretty much producing nothing at the time. And the lactation consultant came to me, and she knew how often I was pumping every hour, I think when we were in the hospital, just to try to get my supply up. And the lactation consultant was so supportive. And she said, you know, Kim, listen, we're going to put your breast milk through the feeding tube, but she is going to need formula. And it doesn't need to be second through the feeding tube because it's going directly in her stomach. And, you know, I accepted that fact, they also found that she had blood in her stool. So they equated that to her having a an intolerance to my breast milk because I was drinking milk. So I stopped milk and soy so that she wouldn't have this irritation from the breast milk like you know, she doesn't need anything else bad going on. So she knew how much I was like, dedicated to continue breastfeeding her because I had done all those things. And I was breastfeeding. I mean at breastfeeding, pumping every hour on the clock that she says to me, this is the day before I went home, she said Kim, listen, you can go home and breastfeed your daughter for comfort. Or you can pump every two hours, breastfeed her every hour, do a power pump. Once a day power pump is like you pump 20 minutes on 20 minutes off for an hour and give her the formula through the tube give her the breast fed milk through the tube. But you know, basically it's going to be a ton of work to get her to keep your supply up and continue breastfeeding and do it in a safe way for her swallowing. She's going to have to be sign lot sideline, she's going to have to have her chin and cheek protected. I even did an SNS system where there's this tiny little tube that had formula or breast milk in a little bag and the tube came down and was taped to my nipple. So that when she was feeding, even if she wasn't getting anything from me, she was getting a little bit of something coming through the tube so that it would stimulate my breasts thinking she was breastfeeding, but really she was getting most of it from the tube. So she's like, you could breastfeed for comfort. Or you could do all that crazy jazz. Oh, and then like Guinness, and you know, I forgot the name of it. There's like different herbs and things you could take to fenugreek to stimulate breast milk. You could do all those things, or you could just breastfeed for comfort. And I was like, Oh no, I'll do the complicated one. So she comes home with diabetes, a feeding tube. I was breastfeeding her every hour with an SNS system. I was pumping every two hours. I was feeding her sitting up baby food. But with the baby food, we had to fortify it with either peanut butter avocado or coconut milk to add fat and calories to it. So I actually found in my little research last night, I found an old piece of paper from July of 2017. And it's just this crazy schedule. And it looks insane. Like I was actually insane to be doing this. But I did it and she breastfed until she was three and a half years old. Oh my god.

Speaker 3 29:43
So So there I proved everybody wrong. No. Thought about that.

Kim 29:52
Exactly. Exactly. No, the the the moral behind that story is like you cannot turn off the mama bear you cannot turn off The power of a parent of a child who needs help, you know it just Yeah. And that's, that's why I'm an I'm an advocate today I started a not for profit advocacy group and it was all from my experiences with my daughter. Yeah, she. So after three weeks of being home with the feeding tube, she pulled it out herself. She got strong enough that she pulled it out herself. And we put it back in. And it's like so crazy to put it back in the screaming, the crying, the awfulness, she pulls it out again, we put it in again. She pulled it out again. And it was a Friday afternoon. And my husband, I looked at each other, we're like, Oops, it's Friday afternoon, no doctors are going to be able to be called I guess we'll just have to leave it out for the weekend. And see how she does. We'll call them Monday morning, whoopsie doodle. And Monday morning, we call them and they were like, This sounds like she discharged or discharged herself. And let's just see how she does. And it never went back in after that day. And that's VIBs personality, she does not stop. She is always fighting, always doing more.

Scott Benner 31:11
She she took that to about and because you had the weekend, you were able to try to feed her and it just started to work.

Kim 31:18
Yeah, we just we just said like, listen, she doesn't want it in. If we had called the doctor, they would have said put it back in, you know, but we're just like, oh, we can't call anybody. I'm not gonna call an on call doctor just for this. And we're, you know, sort of like, jokingly, and we just said we just fed her regularly over the weekend. I breastfed her we did. We did all the things. We gave her all the fortified foods, and she did fine. And on Monday, they decided it didn't need to go back and we followed her lead. And then never went back in. And to this day, without now fast forward. She's six years old. Now. She is eating completely normal foods. She has no restrictions in her diet. And with her swallowing of liquids, that was the hardest thing to conquer. She is now able and COVID kind of helped us with this this portion of her life. Because I was home with her and all the kids during COVID I was able to like really concentrate on her swallowing and all the little things I had to do to support her swallowing. And I got her to get on ice cold, thin liquids. So she now drinks liquids as long as they're iced. And you're probably wondering why they need to be iced. It's because hurt she has a neurological delay of swallow. So her brain doesn't get the clue in time to swallow when a liquid hits the back of her throat. But if the if it's iced, it's like Oh, something cold and it elicits her swallow quicker about that. So yeah, so now she's pretty much eating and drinking, you know, quote normally. So we've come a long way. Yeah, that was basically her first year of life.

Scott Benner 32:56
That's fascinating. Also, do you know what? It's fascinating that I just realized when people say COVID We know it to time period. It's almost like you said the crustaceans period, and I went oh, yeah, exactly. Yeah, I know what you mean. Yeah. Yeah, it was. It's funny because it is a word that means two different things. Like if you didn't know, if you didn't understand that part of speech, he would just be like, I don't understand why did getting COVID help and help. Yeah, but so many that like, oh, you know, it was really a blessing in disguise COVID. And I'm like, yeah, they mean the time for anyway, I don't know why I got, ya

Kim 33:30
know, and there was a couple of more blessings from COVID. For her in particular, because one of her most effective forms of speech therapy is called prompt, and the speech therapist prompts her with tactile cues on her face for different sounds. Like for example, the end sound is putting a finger against the nostril. The sound is touching the bottom of your chin tuck. So I got to learn the prompts because it was over zoom. I was learning I had to do the prompts on this side of the camera. And the therapist was on the other side, you know, doing it to her own face. Yeah. So remember, we were able to do Yeah, we were able to do the prompts. And she's really, really blossomed verbally during COVID. With that prompt therapy, and I could do it even to this day, and she actually started she has started to prompt herself with a lot of the sounds, which is the goal. Well, the goal is to not need the prompt at all. But yeah, and then the other thing is I potty potty trained her. So in the first like three days, I think of the shutdown, she was potty trained. So that was that was kind of cool too, because there's some silver linings.

Scott Benner 34:45
Well use time. I have questions now. Yes. Okay. So intellectually, is there any deficit there?

Kim 34:53
Yes. So she actually has scored so you know, there's like receptive language and expressive language, right? So expressive language, she's obviously significantly impaired, it's very difficult for her to get her brain to know what it wants what know what she wants to say. And actually it come out her mouth and says, say it with our good articulation. That's apraxia. But receptive language, she's only been found to be either average or mildly delayed. However, with standardized testing, it's she they say that she's like significantly cognitively impaired. But you can't be significantly cognitively impaired. If you have average, you know, receptive language, it just doesn't make sense. Because she understands everything that's going on.

Scott Benner 35:41
So those tests don't do a good job of testing her. Basically,

Kim 35:45
they don't. And a lot of the tests that are nonverbal, because she needs a nonverbal test are heavy visual, but she also has visual deficits, she also has significant attention deficit, she just was diagnosed with ADHD. So the standardized testing is not going to work for this girl. Okay, but I'll tell you, she is not going to be able to I know, I know, she's not going to be able to do the high level problem solving that diabetes requires. But she does know that she has diabetes, and her six year old brain diabetes is, every time I eat something, I have to show my mom what I'm eating so that she can give the insulin because I need this, I need this medicine to eat. And then when the alarm goes off, she knows to go get her candy gourd, pumpkin, and then give them out to her brothers. Because when Vivian has a low, we all have a low. So we all get the candy. So she knows that and she knows that she needs to get an adult, if the you know, any alarm bells go off, if they didn't hear it in her classroom. There are concerns there, there are concerns for me long term, as there are with many parents of kids with type one that also have special needs. I do question her ability to manage this disease long term, I don't I don't think she will be able to manage it the way that we do. So we will be her pancreas forever. And I know that the technology is advancing so much that I do have hope that she will be okay in the future when I'm gone. Because I think that there will be an artificial pancreas by then. Or at least like the first step would be that wonderful pump that's coming out that has the double lumen where it's, you know, giving insulin but also giving glucagon. So,

Scott Benner 37:38
yeah, that's been in development for a really long time. So

Kim 37:41
yeah, but I feel like it will happen in her lifetime. I

Scott Benner 37:45
certainly if something like that is going to happen. I made this point a couple of years ago on the podcast, but one of the reasons I got excited about GE voc when it came out was that it's it's stable, like the one of the problems they were having with that pump. The idea that the pump would do an algorithm to you know, give you insulin, but if you started to get too low, it would give you these kind of like mini glucagon injections, right. But the problem was the glucagon wouldn't stay. It wouldn't stay stable in the pump. So a liquid stable glucagon goes a long way towards I don't know that GE voc is involved in this or not. I'm just saying that that exists now. is a is a big step towards that. So you might be right, you might get that someday, can I

Kim 38:30
That's my hope. That is my hope. I already have seen in her six years of having diabetes. Such advancements that have been life changing for us. Yeah. I it just gives me hope. And I actually like the story of her getting her first pump as another crazy one.

Scott Benner 38:46
Can I ask a couple questions that I'd love to hear? Sure. Sure. She was wearing glasses, I imagine. Yes, yes. And

Kim 38:54
she's actually getting a contact soon, too. She's gonna do she's going to wear a contact in her. If it works. I'm not quite. I'm not quite sure about her wanting me to stick something in her eye. But we'll see how that goes. The contact is going to be for one eye and then the glasses will be for the other eye.

Scott Benner 39:12
I gotcha. Did she feel her lows at all? Like, can she tell you? She's low?

Kim 39:17
No. Do you want to hear something crazy? And I don't know if this is just her? Or if it's because of the ti 90? I don't we really have no clue. We never will. But she will be in the 30s and sort of start to look a little pale and shaky. And that's about it. Like that's how low she has to go to show very mild signs

Scott Benner 39:41
going forward in the conversation. You don't have to say do you want to hear something crazy? As a matter of fact, if you have something that's not crazy, you should say do you want to hear something? It's not crazy, because that would surprise me. I'd go Oh, you have something that's not crazy. Sure. What's that? Exactly. I want to try to understand what her Life is like, so she Yeah, she gets up in the morning. Does she go to school? She homeschool? Yeah. She goes,

Kim 40:06
Oh, no, no, no, she goes as well. So she went to, um, she had a ton of early intervention services. She had a ton of preschool special ed services. And she ended up going to a, like very specific special ed preschool and really flourish there. Of course, COVID hid during that time. So we shifted to online and I think I was doing like 19 zooms a week with her. And for kids with special needs zoom doesn't really work. So it was basically like equivalent to wrestling a wild baby alligator for 30 minutes for her to get maybe four good minutes out of it. But I you know, like I said, we are doing everything we can for this girl and we dedicated that's I haven't worked since she was born basically until this year, because we are 100% dedicated to maximizing her potential and she actually is in a gen ed classroom. She started kindergarten last year. It's considered a gen ed classroom. It's called ICT integrated, co taught so she has a full time gen ed teacher and a full time Special Ed teacher in the room. And there's about nine kids that have IEP s and the rest are typically developing. And she stayed in that same classroom. Kurt, you know, currently she's in first grade with the same kids and the same teachers because they looped which was awesome. Like she there was no transition or reading to learn personalities or anything routines. She just took off this year like, took off running. She wears Dexcom she has a tandem pump now which has been life changing. And yeah, she she takes dance class. She's does bowling she does. She's in a challenger bowling league. She's in a challenger Baseball League Soccer League. She does dancing. She's in a dance class called dancers with diverse abilities. She really loves life. We have respite workers that come and take her out on outings she like her most important thing in her life is to go to the store, get a Starbucks, go to Target get a Starbucks shop for purses, and just live like the life of a teenager even though she's only six. She loves it.

Scott Benner 42:14
How much of her care. I guess how much time is leftover after you care for her every day. Thank you. Are you seeing a distancing from your other children? Or your husband or your you? Oh, yes, your stuff? Yes, we Yeah, I can we? How much coke do you do, Kim?

Kim 42:32
Exactly, exactly. I started I started late certainly drink a lot of caffeine. My husband and I have had a very challenging life and marriage. Since Vivian was born. We constantly feel guilty that we're neglecting the other children, of course. But time and time again, we've learned that and it's been through the help of various we have a very supportive village of people like oh, God, such a great support, but they always point out to us like your sons are beautiful, wonderful, caring, empathetic, resilient children, because of their experience with their sister like they are better people. Because she was born like every person that Vivian meets as a better person after meeting her.

Unknown Speaker 43:21
Yeah, no, i and i also

Kim 43:23
think like very strongly, I was an occupational therapist, I was a nurse or I am I should say, you know, you can't can't get that out of your blood, all of my schooling, all of my careers, previous careers, all of those jobs, all the experiences I've had as an OT and a nurse, it wasn't to become an OT or nurse. It was to become Vivian's mother. All of that was to become her mother.

Scott Benner 43:49
Wow, how about bolusing strategies? Do you like do you listen to the podcast? I do. I do. And is actually about it help you or does it not apply to Vivian?

Kim 44:01
No. So I'll tell you the pump story with her. And I'll tell you the how the podcast helped me get more bold with insulin for sure. For sure. Back in the day, when she was nine months old, and she came home. She was just on a very low dose of Lantis I think one unit per day. Then she had like a honeymoon period or whatever. Very short honeymoon period. And then we were bolusing her for the little bits of yogurt or baby food that she was eating with the fortified coconut oil or avocado or peanut butter in it and we were doing like a carb counting type of thing for that. However, she was so tiny. I could not safely give her a small enough dose in a syringe without overdosing her. So our day would consist of knowingly Oh We're dosing our daughter for a blood sugar of 487 and then dropping to 41. And us giving her cake frosting to get her out of the low. Because she couldn't swallow juice. She couldn't chew candy like cake frosting was pretty much it and it actually still is what we use overnight when she's sleeping. She She sleeps right through it if you put cake frosting on a spoon and put it in her mouth. So we were overdosing her and then rescuing her with cake frosting all day long, for nine months, because our insurance company thought that it was too dangerous to use technology on a baby. Even though our argument was the safest lowest dose you can give a baby with a syringe is point five units, the smallest dose in the most basic pump available at the time, which was the Medtronic mini med was one. So half of the unit in the syringe is the safest for the syringe. The mini med pump would give her 140s of a unit technology is the only way to safely treat a baby. It's the only way to safely treat for a baby. So our endocrinology team fought like hell for us to get a pump. I actually was looking through our documentation, our little packet here of documentation, I found a letter, our pump was denied by the New York State Department of Financial Services, the Department of Labor, because my husband, he worked for a university hospital. So he is under the employee insurance. And I guess it went to the even the United States Department of Labor to deny it, because they were calling it experimental. Once they call it experimental and some other crazy word, investigational,

Scott Benner 47:02
you would think you were like, people would hear your story and just be like it just give those people what they want. It doesn't matter. Like let them leave them alone.

Kim 47:11
It came down to basically talking to the CEO of the of the hospital, it came down to like one person to be like, listen to our daily life. Listen to us, like we are parents. And I think this person made the decision emotionally. I think they maybe they are parents themselves, or they they finally got it. We were denied, denied, denied. Starting in August, the fight started, we were denied by the Department of Labor in September, we were denied again for the final determination by our insurance on December 13. And then we talked to the head of the head of the head. And then finally on December 22 of 2017. The very basic basic pump mini bed was approved. And then we ended up getting it I think at the end of January. So she was 18 months old, diagnosed at nine months old. And we did that crazy overdosing rescue, checking her blood sugar, probably 30 to 40 times a day checking fingerprints, you know, along with the pumping and the power pumping and the feeding tube and coconut oil and did all that.

Scott Benner 48:19
I don't know how for nine

Kim 48:21
months. Oh my god. Yeah. And I had to remind myself, like I seriously blacked this out like,

Scott Benner 48:27
oh, I would imagine I would imagine you're living your life and like three days segments.

Kim 48:33
I'm looking at these old logs. It's like 8:24am BG for 58 gave a half a unit injection 10:22am 95 11:16am 61 11:40am 41 gave a half of a tablespoon of frosting. What does that say? Insane? That's insane. But we were just living it, you know? Yeah. So because we fought for so hard for this pump. We then applied for Dexcom the next day, and they just gave it to us. Like they were just like we're not dealing with these people again, they just gave us the Dexcom. So that changed our life significantly because we didn't have to fingerstick her 30 to 40 times a day. And then with the mini Med, we were able to give her point oh two five doses, which was a whole meal for her sometimes was that little amount really? And yeah, and the breast milk because I was breastfeeding her and not putting it through a bottle because you can't give sick into breast milk in a bottle. You can spoon feed it. I was just guessing. I'd be like, Oh, well I pumped an ounce or two ounces. So I'll give her like two to three grams for that for that breastfeeding session we just had. So it wasn't it was insane. Yeah,

Scott Benner 49:50
the truth is, is that a lot of that story around the eating in the bolusing. I mean, aside, aside from Vivian's obvious differences from Arden, like a lot of that But we did to like, I don't know if I've ever told I've ever told this on here. Like, one time I took some insulin, they drew up at a syringe and I squirted it back into a dish. And then I colored it with food coloring, so that I could see it. And this never went into art. And it was like as a test, and I would teach myself how to pull on the plunger, just enough to get like two drops, like sometimes it wouldn't even go into the syringe you just fill the needle with it. And which is insane. And then you

Kim 50:28
try try. Okay, yeah, when you when you end this podcast, go get a syringe. Try doing even a quarter of a unit in a syringe. Try it. Like how could you possibly know what you're putting into your child? Yeah, I would do like a half a unit is the only line that you can actually see. Right and a half a unit would freaking killer. Yeah. Like that's how me

Scott Benner 50:50
too much. That's how little. Yeah, yeah, that was my experience to it. And then you would like I remember putting in the syringe that I'd press really hard on the not on her, but on the on the plunger. And I would hold it. Because I was like, there's such a little amount in there. Like, I gotta make sure it gets out like so you kind of wait, what if you actually bump it? Yeah. You just like, and then it was over? And you thought well, did that go in? And have no clue? And if it didn't, how do I with any confidence? Give her more? And I can't do that. You know, like is that like you said it'll just mean Arden was? Gosh, she was like 18 pounds when she was diagnosed. And that was still really difficult. And if I gave her food she'd eat it. And still, I don't know what you guys. So you're crazy, right? You just You just you're just functioning.

Kim 51:41
Yeah, we're we're like survival mode all the time,

Scott Benner 51:45
is the last kid did the COVID kid come out and you're just like, I don't even pay attention. This kid. It's fine. We just leave it there and it grows and it's fine. Like, you know what I'm saying? Like, give any energy left at the end of the day?

Kim 51:56
Well, listen, I just had a baby at 41. So I had to actively change my lifestyle to feel more energetic for him. How would you do that? Am I allowed to say a name of a product that I use or no? My husband bought me a peloton bike. Okay, last Christmas, I started to make some diet changes. And I actually found out that I have like borderline high calling of high cholesterol. I say borderline because I don't like to admit.

Scott Benner 52:30
So that's the thing you don't want to say out loud, Kim. Yeah, exactly.

Kim 52:35
So basically, I did some diet changes. I started working on the peloton four times a week and drinking tons of water I drink 60 ounces plus of water a day. And my I think my triglycerides went from 238 to 99. And I lost. I want to say I'm up to like 18 pounds at this point riding a bike. I'm not a huge, I'm not a huge person to begin with. But I did put on weight with this like experience of life. So I just thought I made a change. I'm like, listen, we are going to have to live a really long time. Not only because we have a child with special needs we we are obviously we don't want to we want her to outlive us. But it is scary to think about her outliving us because I don't know who's going to take care of her. So we do have to live longer than kids, the people with typically developing children. And then I had a baby a 41. So I got to live a long time for him too. So I made some changes and it started yoga, acupuncture aromatherapy, we do a lot of things, you know, I'm going to be calling a therapist soon. I don't I'm not shy about that. Like I think people should talk about mental health issues and stress issues. I started in for profit with two other moms advocating for kids in our county to get the services that they deserve that called. So we started parents helping parents coalition in Monroe County. And we advocate for children and families of Monroe County to receive early intervention services and preschool special ed services like Vivian received. However, now there is such a funding shortage. They have a tremendous provider shortage. And there's currently a waitlist of like 280 children who are supposed to be legally getting the services and they just don't have the providers to to give them the services. So I will dedicate the rest of my life for fighting for these kids, because Vivian's early intervention is the reason she's thriving today. I will always always that that fire will never go out. Every child deserves early intervention and preschool special ed services. Every single child that has a need, that needs to be fulfilled, should have fulfilled Well,

Scott Benner 54:53
that's I like, I like that you did something very locally. I think that's maybe very impactful In a way that, that, that you lose, if you try to do something on a national level or statewide level or something like that, that's great. We got

Kim 55:07
we definitely are statewide too. We do a lot of state level advocacy. And we actually were pretty, pretty strong in getting a bill called the covered lives assessment passed, and it brought money into the early intervention system. And then of course, they did a bait and switch. And it's they're using it as cost cost savings for the state instead of actually investing in rate increases for providers. So we have a long way to go and huge fights still. But what we're doing locally to help families is we're providing scholarships to kids who are not receiving services, to go to like therapy groups, at clinics around town, to give get some strategies going so they can bring that home and use that at home because they're sitting on waitlist. And then we offer purposeful programming every month, either a huge playdate with providers there, or an online seminar for parents, like the one we did last month was talking about gross motor development in your infant through preschooler. Ah,

Scott Benner 56:08
that's, that's astonishing. It's astonishing that you have time. Like if you told me I raked the leaves this week, and I'd be like, Wow, way to go, Kim. So all that is, is pretty amazing. How do you manage your Hashimotos? What does it take to keep that down?

Kim 56:24
I'm on I'm on level thyroxin. And I've been on it since I was 15. So and there was like, it's funny. Like, I had an uncle who had type one diabetes, and we both in my mom and I have Hashimotos. And he had a grandson that had type one diabetes, I still never in a million years thought type one was going to touch one of my children. Yeah. Like how what? Like, it just never crossed my mind. And then when COVID hit, because I've actually known to people already in my county who got COVID and got type one about three months later, just like the with her RSP and a few months later. So I'm talking to my husband, I'm like, I could get type one. Like, anytime, any any day like

Scott Benner 57:07
honestly, I can't get it while we were talking. Because yeah, exactly.

Kim 57:12
Exactly. Yeah. And I'm already I'm already at higher risk of type two, because I had huge babies except for Viv. Yeah, like he could, you know, so we were very, very careful, more careful than most during COVID. Because of that fear. And I wanted to get our baby vaccinated before getting it like I just wanted. And it's funny when, when our baby turned nine months old, that PTSD, like I was just like, This is how young Vivian was when she got type one, like, I can't believe it, I just can't believe it. And I remember that month, milestone, like very significantly, and like all this trauma came back to us. And luckily like my husband, I are best friends. We were together for 10 years, even before we got married. And we've been together I think 23 years at this point. He's super funny. Our kids, we just we just manage our life as a team. And not a day goes by without my older son saying, Mama, is there anything I could do to help? And I'm just I just love I love how Vivian has brought us together has brought us into this like team approach to life. And humor. Like we my husband is hilarious. And we just make a joke about everything to get us through. And we decided we can't both be stressed out at the same time. So if I'm losing it, he's got to he's got to keep it together. And vice versa. We can't lose it at the same time.

Scott Benner 58:42
It's like a fair and equitable agreement.

Kim 58:45
Yeah, let's shake on this. Yeah, no kidding. Yeah,

Scott Benner 58:48
I have a couple of questions for you. What are your What are your life goals? For Vivian? Like, what do you what do you what are you shooting for? Like, you know, like, I send my kids to school because I wanted to go to college, I want to go to college. So we get a job like that kind of stuff. But what are you thinking about?

Kim 59:07
I would love for her to go to college, I would love for her to be supported in the community, as a contributing member of the community with a job of some sort. I would love for her to live on her own. If that is in the cards. With some support. I'm we're thinking she probably would need, you know, some level of, you know, continuous supervision in some way. But really, the, the story is up to her. So I'm not going to limit her in any way in our goals or our aspirations because she's going to show us exactly what she's capable of doing. I know that her brothers are going to support her. I don't think I have to do anything to make that happen. I think it's just it's just the way it is. It's just the way it's going to be. So that does bring me comfort, but I also want them to have their own lives too. You know, so

Scott Benner 1:00:01
see your your expectation is that just life will uncover a path as you're moving forward? Yes,

Kim 1:00:07
because I think it has, it has so far, I started a Facebook group called type one and special, because there are so many parents out there that have kids that have special needs, and have type one, and it does bring on unique challenges. And I have felt that that that level of support is different than what's given in other Facebook groups. So if anybody wants to join me in that efforts, please jump on. Because I think that there are certain things that are going to come up that might not come up for, let's say, Arden, you know, like, who is going to who is going to do my pump changes, who's going to change my Dexcom, who's going to make the dosing changes, who's going to take me to the doctor, and obviously, things are getting such so much more technological and automated, and brings me hope that she would need less support than what we're giving her right now. So but I do think there's unique challenges, even even the swallowing issues, or unique challenges, I don't think I'll ever be able to give her apple juice, she's not gonna ever be able to drink eight ounces of apple juice and chug it down. Yeah, so you know, she, we do have different ways of treating her lows. Overnight lows are frosting, like different ideas like that could offer some other family some ideas and help, you know, get them through. Yeah, and even just like, even just her insulin requirements being so low, it's crazy. Like, we waited four years. So our insurance company only gives insulin pumps every four years. So we waited four years, basically to get tandem. And I couldn't wait for it. I just it was just so it's such an exciting day. And now they have technology. So tandem in itself was so exciting, because we finally started to sleep at night. Because it has the auto shut off. It was it's unbelievable how much more sleep we get now than before tandem. So that now they have this awesome app where you can dose off of her telephone. So for a girl who's like, already got so many things going on, and needs to like really work hard in her classroom and concentrate, to have a nurse walk in and be like man and managing her you know, getting her She wears a spy belt that has her phone and her pump in it. Like interrupting the class or, or even worse going down to the nurse's office. I am all about diabetes is not running her life. You need to go to her. If you're gonna give her a dose, you go to her I'm not interrupting her education because of her diabetes, she needs to be in the classroom. And then they're like, Oh, what about finger sticks and like finger sticks in the classroom. If it really bothers another kid, they can come talk to me and I'll talk to their parents about it. diabetes is part of her. And she shouldn't be treated differently because of it. And it's actually against the law to be like specifically discriminating against her or changing her educational plan because of her diabetes. So her school is tremendously supportive. Our district is tremendously supportive. So we did a lot of things different this year, versus last year, where the nurse goes in. And now she doesn't even have to be near Vivian she we put her phone at the like front of the classroom. And she doses her from the doorway that he doesn't even know that she was there. Yeah, that's great. So it's awesome. That's amazing. So for a late for a girl who doesn't really like to be stopped, interrupted, touched, and has like extreme ADHD. That is life changing. Wow. driving in a car, I can dose her on a road trip without having to climb back there unbuckle this, you know, car seat and get to her pump and get so she can eat. She loves the pets like her favorite pastime. Yeah, she can eat and drink whatever she wants. And we can dose her from afar. It's been beautiful. It's been life changing.

Scott Benner 1:04:05
Earlier you were talking about your you started a Facebook group and made me think I wish Facebook gave me some a little bit of autonomy to split my group up a little bit because I would in a second start that kind of like a subgroup inside of the group. And yeah, and let someone like you moderate it.

Kim 1:04:26
You start I started I started it today. Oh no, I just looked. I started like literally like an hour before our call because I was like, wait a minute, this is a great opportunity. So I like this advocacy bug that's in me. It's never going to stop. I can't shut it off. Yeah. So I'm like prepping for my chat with you. And I'm just like, wait a minute, this somebody is going to say, I have you know, I relate to this. I relate to the story. I relate to those fears of who is going to take care of my child. And let's get together and talk about it and please invite yourself in gotta join our group

Scott Benner 1:05:01
I want, I just I do you know what I mean? Like, there's already such a, and he might group has like, I don't know, there's like over 30,000 people in it. So there's an opportunity for you to like say, hey, look, there's a subgroup here that does this, except the Facebook just doesn't allow that. So, I wish

Kim 1:05:17
I know, I know. It might someday it might someday, it would be nice. But there's like, there's a lot of different things I talked about that can touch on people like breastfeeding, swallowing issues, intellectual disabilities, even like fine motor problems. Like if a person a kid can't use their hands or an adult can't use their hands. How do they manage diabetes? Who's going to help them? Oh, no. problems, like higher level problem solving, I think I saw on on a meme. Diabetics make like 180 More decision 80 or 180 more decisions per day than a regular person. Yeah, I get it. I understand that, and my daughter is not going to be able to make 80 decisions a day. So you know, these fears are real, and they're unique. And they touch upon a certain parent. And I want to help those parents.

Scott Benner 1:06:08
Yeah. Well, I hope that works out for you. That's amazing. of Kim. If they were up on an hour, is there anything that? May I be honest, can you have that Italian talk in you? I don't think

Kim 1:06:18
oh my god. I know. I know. And I told I told the person who was going to come over and watch my baby. I was like, listen, he said an hour, but I I'm gonna get cut off. I know, because I just talk and talk and talk. But her story, like there's just so much in the story.

Scott Benner 1:06:32
No, no, no, it was absolutely fine. Don't get me wrong. I just think that when I make a transcript for this one day, it's gonna say Chem 87%. Scott 13%. And I that's fine. But but my my reason for bringing it up was I was gonna joke and say like, is there anything I didn't ask you, but I don't think I asked you anything.

Kim 1:06:50
I know I so sorry. Oh, the only other thing I was gonna touch upon is just like how low her Basal doses are still, like even as a six year old, we still are making those point oh, two, five changes. And her carb ratio is 20 to 24. And still, like she just getting these tiny doses. So the fact that it doesn't seem odd to you, it seems it seems crazy to me because the other six year old I know, in our town is like it's just totally different dosing changes, but like, we didn't get the Omni pod. We didn't get the Omni pod because we still need those point. Oh, two fives. What changes?

Scott Benner 1:07:29
How much does she weigh?

Kim 1:07:31
She weighs 47 pounds now.

Scott Benner 1:07:34
Is the other six year old heavier than that? No, not really. No, not really another six year old, less active than Vivian.

Kim 1:07:41
Maybe maybe. And then this this whole like ADHD meds thing is is driving me nuts now because she's not eating as much and she's not finishing her meals. And that's never been a problem for her before. And it's driving me nuts. So that's just going to add a whole new little.

Scott Benner 1:07:58
The word of challenge. First adjustment should probably be like tattooed on your forearm, because you're going to be making a lot of adjustments constantly. Yeah,

Kim 1:08:07
just keep swimming. Just keep swimming.

Scott Benner 1:08:10
Okay, so when we hear a story of a lady in a bell tower, it's going to be you right, like

Kim 1:08:21
so we are so supported by our village, our friends, our family, her school, her endocrinology team, like we couldn't be living this life without all of them. Yeah, my husband and my kids, like they're just so great. And having a baby is has been so great for her as well because she is now teaching him having two older brothers that she was chasing after she was achieving milestones to catch up to them. And now she has a younger brother that she's teaching. It's just been beautiful to watch. I love being there. Mom,

Scott Benner 1:08:56
I'm amazed that your story and I appreciate you sharing it with me. That's not I mean, the truth is, I never know what anybody's gonna say. But, you know, there's some expectation when people start talking, you know, like, oh, this might go this way or I can feel the story moving in this direction, but your stuff is just so different. And your response to it is is is just laudable it's amazing it different

Kim 1:09:17
Scott, or is it absolutely insane?

Scott Benner 1:09:20
It's absolutely insane. Yes. It really is. I mean, I've while you've been speaking more than a number of times, I've looked at the like the general gist description of what I can't even say chromosome nine nine test touches. I mean, I tried Tetra Somi nine P and you start reading it you're like, this is like this must have felt like a joke when somebody tells you the first time. Yeah.

Kim 1:09:49
That's why we're like there's there's no stopping her. We are going to support her and with everything we can because that girl is good. Have she's she's already something she is spicy as all get out, she understands everything that's going on. And even though she's limited verbal, and uses her device and sign language a little bit, but even with just her body language, there is not a single person that meets her that doesn't understand every single thing she's trying to communicate to you. Um, she just gets it through, she gets it through.

Scott Benner 1:10:25
I'm trying to imagine myself being sent to this web page for my child. And the the word rare is modified with the word very in the first sentence like there's no need to modify rare with very rare is very rare, right? I mean, they're exactly exactly three words in and they're like, it's a very rare chromosomal disorder. You're like, Wait, a very rare, like, What the hell is that? Yeah, you know, oh, and

Kim 1:10:52
back back to Facebook, we did find a Facebook group of families of kids and adults with Tetra Sami 90, and have had a tremendous support from them. And we use Google Translate, because there's people from all over the world that don't speak English. But even within our group, there's such a variety of abilities and such hope. And so such support, so I'm so glad for things like Facebook, because I would have never otherwise known any other soul. You know, that has Tetris homie, nine P, there's actually another child in our state. And there's another child in Toronto. And we're actually really good friends with the family in Toronto, and have provided each other support for years now, because of this Facebook group found so

Scott Benner 1:11:36
people can make fun of Facebook all they want, but what what it has is a large number of members, and therefore the opportunity to find people. And that's that doesn't exist in another place.

Kim 1:11:47
Almost all of our work with my not for profit is through Facebook. And that's how we reach the most amount of people to influence the most amount of political figures to get change. You're

Scott Benner 1:11:59
just not there's no other social media platform or way that you could reasonably financially reach these people. And it's, you know, it's it's just underused, I mean, I use it. I think I use it pretty well. But I mean, a lot of people under use it for other stuff where it could be helpful. Yeah. So

Kim 1:12:17
yeah. And we're actually getting together with a bunch of touches 29 That that touches on IP family as we got together the last this past year in Detroit, because there's randomly some a lot of like congregated people in Michigan, and then two, before COVID, we had done our first one in Detroit. And this year, I invited people to our house, so they're coming to me, so whoever, you know, around the world, whoever wants to come and meet, we always have a wonderful time and just share stories and feel validated, and supported, which is what it's all about.

Scott Benner 1:12:51
What's the website for your organization?

Kim 1:12:54
The Facebook group is parents helping parents coalition in Monroe County Public Forum. Okay.

Scott Benner 1:12:59
Perfect. Thank you. I can't tell you I appreciate how much I appreciate this. I know it's right around the holidays and everything and and taking the time to jump on means a lot to me. So

Kim 1:13:09
I actually had to cancel her endocrinology appointment for there, Scott.

Scott Benner 1:13:14
I think he made the right decision.

Kim 1:13:16
I think I did too. And her her nurse practitioner was like, Oh, that's great. And I told the school nurses, I'm like, Do not text me or call me between 1030 and 1130. I am doing the Juicebox Podcast. Oh, can I tell you how your your podcast helped me? Oh, even more? Yeah, sure. Being more bold with insulin, for sure. Can

Scott Benner 1:13:36
I ask you a question? Could I stop you? Well, I

Speaker 4 1:13:42
don't think so. I don't think so. Sorry, Scott. Listen. Okay, one more

Kim 1:13:46
thing. One more thing. I'm being more bold with insulin, for sure. Listen to the Pro Tip series. My husband is not there yet. He's still a little apprehensive. But I am definitely more bold with insulin. And we have had an improved a one C because of it. And just just fighting for the equipment. Like I just you know, if there's equipment and technology out there, I'm gonna get it. We actually still have the G five until it almost was like not even being made anymore because I was afraid to make any changes. And then I listen your podcast. I'm like, Honey, we need the G six. Like we need to just get the G six. And so we made that change. And I really fought for the tandem pump because it's just what we need it we the day that she was qualified for it. We got it like that is so thank you for that. You're very welcome.

Scott Benner 1:14:37
It's actually as soon as I get off with you, I have to call the place where my mom is living because they are not setting up some of her services correctly. And I wish I could record that for you because you would all here a what I think is going to be a Master's class and making someone do something that they're supposed to to my my sister in law sent me a text last night and this thing this thing's not getting put into place nearly quick enough. And they said, well, there's an acclamation period for both the resident and us. And I said to my sister in law, I'm like, That's a bold statement. That doesn't mean anything. I was like, it's been it's been two weeks. What I said, Did you ask what what is that? Why? Why? What's that acclimation period for? Because the answer would have been like, I don't know, no one's ever asked a follow up question when I shuffled that at them.

Kim 1:15:27
Exactly, exactly. This is my like, not that I that not that you need advice as an advocate. But any my advice is an advocate is, let me speak to the manager. Let me speak who is above them. Let me speak who's above them. Never stop until you get the answer you want. Never stop.

Scott Benner 1:15:44
You need somebody who's motivated to do their job most of the time. Yeah,

Kim 1:15:48
MO. And most of the time, it's like it's bureaucracy, bureaucracy, bureaucracy. I can't say the word. It's hard when you're arguing with people to not get like emotional and not get rude. Like mean, I try not to do that. Because the people are on your team. They want the best for what you're trying to do. They're just limited in their resources. Right.

Scott Benner 1:16:11
You're so nice, Kim. I think people are generally lazy and don't want to do their job.

Kim 1:16:15
And that could that could be true. Yeah. But being being rude, or being aggressive is not going to get you anywhere. Right. So it's not part of being an advocate is like reading the room. Oh, yeah. And yeah, yeah. You have and, and and making them part of your team, like, empowering them? Yeah. Oh, for sure. feel like they're part of your team.

Scott Benner 1:16:36
You know, yeah, the, the desire to get the right outcome is that the top, you're not trying to be right, you're not trying to be, you know, you're not trying to win, you're just trying to get this thing to happen. Whatever it is, you don't need anyone to know that you beat them. As a matter of fact, I oftentimes let people feel like they're besting me, because it makes people feel better. It empowers them. And then suddenly, you make them feel like I was gonna say something I can't say, you make them feel like they're in control. And it was their idea. It was their idea. And you're just like a bleep, like a little, just a puddle in the corners, happy to be getting their attention. And you let them feel like they're the Master of the Universe. Like who the hell cares? Because once I hang up the phone, I'm not going to know you ever again. So yeah, exactly. I don't care how you feel or what you're, you know, if it's right or wrong, doesn't matter. As long as the thing happens. You know, that's it. Yeah, I was gonna use a euphemism earlier that I just, it's inappropriate. But I couldn't find other words for it. I just it stopped me in my tracks. I was like, I can't say that. But, but that's what I'm going to do. Now. I'm going to call this person, I am going to politely and kindly direct them to do their job and make them think it's their idea.

Kim 1:17:58
And it's and it's going to your outcome is going to be grateful. I have every faith, everything. All right. Vivian Vivian wanted me to tell you because I told her I was going to tell her story today. She wants you to know that over Christmas break. Her cousins from Hong Kong are coming and they're going to have a sleepover with her at Nana's house. That's what she wanted to tell you. I'm

Scott Benner 1:18:20
glad she messaged me with that. Why do you have cousins in Hong Kong?

Kim 1:18:24
My sister lives in Hong Kong.

Scott Benner 1:18:26
What is she special? She had to run off. Yeah,

Kim 1:18:29
she had. She had a run off to Hong Kong. She actually met her she actually met her husband here and it was kind of always in the cards if they would move there. And they did and we didn't see them for almost three years during COVID But we saw them this past July for a month and now they're coming again for Christmas because we lifted all the restrictions.

Scott Benner 1:18:47
Well tell Vivian I hope she has a great time on her sleepover. And you have a lot of fun with her cousins right?

Kim 1:18:53
Yes, that's what it's all about. Amazing. Live it live in the life she's

Scott Benner 1:18:56
doing more than I'm doing that girl that's what I'm telling you right now. She's got a more packed social calendar than I do

Kim 1:19:02
dude this this girl is lit truly living her best life Don't you worry about her

Scott Benner 1:19:06
I'm happy for I just watch out world make this podcast so you know in when I said earlier like I don't think people like sometimes people just don't work hard. And you know the if somebody comes to me and say like, how did you build the podcast this big? Or how does that reach that many people? I'm like, I work at it. Like it's it's you know, I don't get up in the morning. I don't feel like it today. Like I made this podcast recently came with a fever that I thought was going to knock me off of my chair. And there's no way you could find that episode and know that I was sick while I was making it. Because this is my kid you know

Kim 1:19:42
that you know that people need to hear these stories. Yeah, it's you live in

Scott Benner 1:19:46
you live it. It's just it's a thing I've chosen to do. So if you're going if you're an advocate, if you're gonna choose to do something, then do it. And now I'm directly talking to the woman who I'm about to talk to on the phone with my my Thank you, but it you know, it shouldn't be hard to do the basics of what you're supposed to be doing.

Kim 1:20:07
I know. And that's like, that's true to everything related discussion means like, Why? Why do I have to fight this? Hard for something so basic, but that's the issue. The most vulnerable are always thought about. Very last, always right, I think think about and it's not to get I'm not going to get political but it's both sides of the aisle. Yeah, the most vulnerable for people with disabilities, veterans in the elderly, they are always thought of last. And that's what needs to change in the world, the most vulnerable should be supported first. That's the only way our community can be successful.

Scott Benner 1:20:49
Yeah, that's hard to disagree with, that's for sure. You made me think about when I met my wife, she worked in a movie theater. And I remember being there and watching her come in, at, you know, five o'clock in the afternoon and work till two o'clock in the morning. I imagine they weren't making $4 An hour probably. And she worked at that job consistently throughout the evening. Hard, you know, like hustling around and helping people and being polite and fixing problems. And when the kids couldn't, you know, or when the other people couldn't keep up with the lines like she would jump in. And I just recently we went to see a movie. And the person who brought me the popcorn was texting while they brought it to me. Like, like, like that had their phone in their hand. And they were texting while they were holding my papa and never made eye contact with me and, and then charge me the money and left. And I don't know what happened in in 20 years. But like you don't know, just, it's a lot.

Kim 1:21:46
A lot has happened. Just just trial, a lot has happened. Anyway, one, one little documentary that people might be interested in the special needs community like worrying about what's going to happen to their child when they become adults. And when they outlive us. PBS did a wonderful documentary called The Good Life. You can find it and watch it. And it really kind of hones in on the fears that people, parents of adults with disabilities have. Because guess what, everyone's living longer now. And they are out living their parents and they do need supports for the rest of their lives. And what do those supports look like? There's never enough funding. There's never enough staffing. And safety is never enough. It's never good enough. The Good Life, The Good Life on PBS the pressures on for us to be advocating for the rest of our lives, too. And why? Why do we have to fight so hard? Yeah, it sucks. It sucks. But like, I'm never gonna stop.

Scott Benner 1:22:45
No, of course. But it's also on you now to stack up money and, and insurance policies and all this other stuff? Because Oh, yeah, yep. Yeah, I don't know how you already built

Kim 1:22:56
that. We already have a special needs trust fund set up. And I have a very good friend who just opened up a local business that is has inclusive hiring and she's she's really paving the way around here, at least to focus on the people with people with disabilities are a part of our community. It's not, it's not weird or unique or odd. To see a person with, let's say, Down syndrome, working at a coffee shop. Like she's paving the way like we do inclusive hiring is that like, Oh, yes, we hire people with disabilities. That's not what it's about. We do inclusive hiring. And we do a partner system, where a person that needs a little bit more support has a partner right next to them working in the community. And she's paving the way to make that normal. Yeah, that needs to be normalized. That's elderly people. Like these, these type of community programs need to be normalized and supported. I

Scott Benner 1:23:58
appreciate you bringing that up and making everybody aware of it. I'm gonna I'm gonna let you go now, but you're gonna cut me off though. I mean, listen,

Kim 1:24:06
you're gonna have this lady right? My friends. You gotta go yell at the lady and I gotta go. I don't even know what I'm gonna do. Well, I don't know. I'm gonna jump on the couch. I was gonna

Scott Benner 1:24:17
say you should forget peloton you wouldn't put me on a real bike. You could probably cover some real ground. I wrote down six.

Unknown Speaker 1:24:25
I can't be hit by a car. I

Kim 1:24:26
can't die, Scott, people to take care of here.

Scott Benner 1:24:30
I wrote I wrote down 60 ounces of water. I'm going to meaningfully try to drink 60 ounces of water a day and see what that's like.

Kim 1:24:36
And do oatmeal with blueberries and ground flaxseed in the mornings. That's it. Just just that one change. It fills you up. Blueberries are magical. The flaxseed reducer gives you a very good source of fiber to reduce your cholesterol and the water with that and also I also bought a like large container of like mixed nuts on salted and I keep it in the car. Are you and I snack on healthy nuts that are good for my heart instead of crap? And I keep that in the car. I'm just gonna

Scott Benner 1:25:08
end Kim Are you saying I snack on healthy nuts? Perfect No wonder your husband's got such a good sense of humor. All right, well,

Kim 1:25:22
thank you for this opportunity. I

Unknown Speaker 1:25:23
really appreciate it. Honestly, I

Kim 1:25:24
think the more people share their stories, the better our community is.

Scott Benner 1:25:28
I agree. Hold on one second for me. Okay. Well, let's thank him for coming on the show and telling us Vivian's story that was really something else. And we'll also thank the contour next gen blood glucose meter for sponsoring this episode contour next one.com forward slash juicebox. Get yourself a good accurate meter. Get yourself the contour. If you're enjoying the Juicebox Podcast, please share it with someone else who you think might also enjoy it. And don't forget to subscribe or follow in a podcast app like Apple podcasts, Spotify, Amazon music, there are so many great apps, they're completely free, just like this show. Just subscribe and follow. It really helps. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.

Once there was a time when I just told people if you want a low and stable a onesie, just listen to the Juicebox Podcast. But as the years went on, and the podcast episodes grew, it became more and more difficult for people to listen to everyone. So I made the diabetes Pro Tip series. This series is with me and Jenny Smith. Jenny is a Certified diabetes Care and Education Specialist. She's also a registered and licensed dietitian and a type one herself for over 30 years and I of course, am the father of a child who was diagnosed at age two in 2006. The Pro Tip series begins at episode 210 with an episode called newly diagnosed or starting over and from they're all about MDI Pre-Bolus Singh insulin pumping, pumping and nudging variables exercise illness, injury surgeries glucagon long term health bumping and nudging how to explain type one to your family. Postpartum honeymoon transitioning all about insulin Temp Basal. These are all different episodes, setting your Basal insulin, fat and protein pregnancy, the glycemic index and load and so much more like female hormones and weight loss. Head now to juicebox podcast.com. Go up in the menu at the top and click on diabetes pro tip. Or if you're in the private Facebook group, there's a list of these episodes right in the feature tab. Find out how I helped keep my daughter's a one C between five two and six two for the last 10 years without diet restrictions juicebox podcast.com Start listening today. It's absolutely free.

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