Automatic episode summary
Episode 22 of Still Strong turns the show's usual premise around. Host Keith Vance normally meets guests at the moment life hands them a hardship and they have to decide whether to lie down or keep standing. Here he asks a different question: what if the hardship never arrived, because it was always there? What if still strong is all you have ever known?
The episode comes in two parts. In the first, Vance sits down with his step-granddaughter Alexis, who has just turned fourteen, and lets her set the agenda. She shows him a yellow belt certificate from karate, a cheer medal from the East Coast Championships, and a soccer trophy from a team called the Pink Cotton Candys. She reports that her boyfriend broke up with her and that her papa now finally has permission to do something about it. She lists her pets, names reading as her favorite subject and math as her least, describes homeschooling with a behavior therapist who works with her on math, reading, typing and social skills, and announces that she intends to be a police officer. When Vance asks what she wants to talk about next, she chooses her surgery: the operation that put her in a wheelchair, the wedge strapped between her legs that she hated and later tore up, the therapy tape still on her leg, and the second surgery that may come in August. She answers plainly and without self-pity, which is the point of the segment.
The second part supplies the context Alexis cannot. Vance brings in his daughter Brooke, Alexis' stepmother, with Alexis' father Michael contributing from off camera. They begin far back, with Vance admitting he did not want this match. He looked Michael up online, decided he did not fit the picture he had of the man he would hand a daughter to, and only relented when Brooke told him she trusted him and he agreed to keep an open mind and an open heart. He dated Michael himself, over coffee, before giving his blessing.
Michael then describes Alexis' birth: a routine checkup where an ultrasound showed the umbilical cord around her neck, an emergency cesarean, a barely four-pound baby who did not cry at first, and his own father standing in the dark outside the surgical doors in tears. Brooke picks up the medical thread. Around age two, after missed milestones, a geneticist in Miami identified 17q12 microdeletion syndrome. Brooke explains it with an analogy: if the body were a book and the chromosomes its chapters, a portion of Alexis' seventeenth chapter is simply missing, so her body is working from partial instructions. From that stem her kidney disease, her neurogenic bladder, autism spectrum disorder, cognitive impairment, hip dysplasia and a longer list besides.
Most of the conversation is about advocacy, and it is unusually specific. Brooke describes roughly a year spent pushing doctors for an autism diagnosis, not for the label but because their insurance capped therapy at thirty sessions a year while granting unlimited sessions to children carrying that diagnosis. Getting it into the chart preserved Alexis' speech, occupational and physical therapy, opened the door to thirty hours a week of ABA therapy, and qualified the family for the scholarship that now funds homeschooling. Brooke names the cost of that fight too: a system that assists only children who are visibly failing, which means describing a daughter's shortcomings to strangers, sometimes with the daughter sitting in the room, then debriefing with her afterward in the car.
The hardest passage concerns school. Alexis' IEP required staff to prompt her to the bathroom every ninety minutes, because her bladder does not signal her brain and holding urine risks her kidneys. When the aide who did that retired and was not replaced, both kidneys enlarged. The family eventually pulled her out and now homeschools.
Vance, a contractor, offers the image that holds the episode together: with a dozen specialists each watching one organ, the parent has to be the general contractor. Brooke's own summary is shorter. Her hospital training, she says, was so that she could be Alexis' voice.
Speakers
- Intro music
- Keith Vance host
- Alexis guest
- Brooke guest
- Michael guest
Chapters
- 0:13 When still strong is all you know
Keith Vance reframes the show's premise: instead of adversity that arrives mid-life, this episode is about adversity a person is born into. He introduces his step-granddaughter Alexis, who has just turned fourteen, and gives her a Still Strong shirt for her birthday.
- 4:50 Yellow belt, cheer medal, soccer trophy
Alexis walks through the awards she brought with her: a karate yellow belt certificate, an East Coast Championships cheer medal, and a soccer trophy from the Pink Cotton Candys. She and her papa talk boyfriends, favorite colors and her pets.
- 13:07 Her surgery, wheelchair and therapy
Asked what she wants to talk about, Alexis chooses her surgery. She describes the pain, the stitches, the wedge strapped between her legs that she later tore up, the tape still on her leg for therapy, and her nerves about a second operation possibly coming in August.
- 16:45 Homeschool days and police officer dreams
Alexis explains her school day with an RBT behavior therapist: activities, basketball, the playground, and schoolwork in math, reading, language arts, typing and social skills. Reading is her favorite, math her least, and she plans to be a police officer.
- 28:53 How this family came together
Part two opens with Brooke. Keith recounts looking her future husband up online and not liking what he saw, then asking her for an open mind and an open heart. Brooke's answer, 'dad, I trust you,' changed his posture, and he spent time getting to know Michael before giving his blessing.
- 32:22 An emergency birth, a rare diagnosis
Michael describes the ultrasound that found the cord around Alexis' neck, the emergency cesarean, and a four-pound baby who did not cry at first. Brooke covers the NICU weeks, the missed milestones, and the geneticist in Miami who identified 17q12 microdeletion syndrome.
- 40:06 Trained to be her voice
Keith traces how Brooke's stalled nursing program and ER job prepared her to navigate hospitals for a stepdaughter she had not yet met. Brooke describes the special-needs system as a second full-time job and details the year-long fight to get an autism diagnosis into Alexis' chart so her therapies would continue.
- 49:09 Don't let fine enough be good enough
Brooke's counsel for parents still in the middle of it: build a care team that will advocate with you, expect no shortcuts, and refuse the verdict that a child is 'fine enough.' She also names the cost — a system that only helps children who are visibly failing, which forces parents to broadcast their child's shortcomings, sometimes in front of the child.
- 57:32 A cognitive ceiling, and staying safe
Brooke explains that 17q12 is cellular and permanent, that Alexis' comprehension is expected to plateau around a sixth-grade level, and that education has shifted toward functional life skills. She and Keith discuss why Alexis is considered a high-risk population, the support groups they found, and how she rehearses crosswalks, checkouts and 'safe adults' with her.
- 1:06:51 Kidneys, bladder and a broken IEP
Brooke walks through congenital hydronephrosis and neurogenic bladder, the timed-voiding schedule every ninety minutes, and the fluid logs. When the school stopped following the IEP that required those prompts, both of Alexis' kidneys enlarged — and the family ultimately pulled her out of the district.
- 1:19:22 The parent as general contractor
Brooke's biggest lesson: with twelve or thirteen specialists each watching one part of the body, the parent must make them talk to each other, and sometimes educate them on a condition they may never see again. Keith, a contractor, names the parent the general contractor of the whole build. Brooke recounts the procedure she will never repeat.
- 1:29:20 Her joy, and her spirit
Keith reflects that Alexis has reset his own perspective on hardship, and Brooke closes on her daughter's joy: a girl who has been poked and prodded more than most adults, who tells herself she is brave, and who holds her mother's hand mid-procedure to say, 'it's okay, mom.'
Key takeaways
- 0:13 The episode reframes the show's own title. Still Strong usually means choosing not to quit when adversity arrives; here Keith asks what it means when the adversity was never a turning point at all, but the only life a person has ever known.
- 45:00 The most practical lesson in the episode: read your own insurance policy. Brooke found a clause granting unlimited therapy sessions to patients with an autism diagnosis, then spent close to a year of testing and appointments getting that diagnosis written into Alexis' chart so her therapies would not be cut off at 30 sessions a year.
- 1:04:55 Safety is taught by rehearsal. Brooke narrates crosswalks from the car, asks Alexis to find the bathroom and the checkout in a store, and drills who counts as a safe adult, so that awareness of her environment becomes second nature rather than something she has to reason out in a crisis.
- 1:10:01 An IEP is a legally binding agreement. When the school stopped following the timed-bathroom provision after Alexis' aide retired, both of her kidneys enlarged. Brooke's warning to parents: do not assume the plan is being carried out just because it is required by law — ask, follow up, and verify.
Pull quotes
Part one is deliberately unhurried and light: Alexis leads the conversation through her karate certificate, cheer medal and soccer trophy before choosing, on her own, to talk about her surgery. She reports the pain, the stitches and the wedge between her legs matter-of-factly and without self-pity.
"I kinda snapped back into my body." Michael describes the emergency cesarean — standing in scrubs behind the curtain, Alexis not crying, the nurses working on her — and the moment her cry finally came. He walked out to find his own father in tears outside the surgical doors.
"Don't let a broken system silence your child's voice." Brooke's encouragement to parents still in the fight — you are the voice of a child who cannot advocate for herself. She pairs it a moment later with "don't ever let fine enough be good enough," her answer to the school's claim that Alexis had progressed far enough to lose her speech therapy.
"The only way you get assistance... is by showcasing their failure." Brooke names the cruelest mechanic of the system: a parent who wants to celebrate every victory has to instead put a child's shortcomings on display to keep her services, sometimes with the child in the room.
"If it's not you, no one else cares as much as you, and your child will fall through the cracks." Brooke describes a constant state of engagement, because the moment she drops the ball it is her daughter's health or safety at risk — a second full-time job layered on top of work and family.
"The parent almost has to be the general contractor." Keith's construction analogy for coordinating a dozen specialists who each see only their own part of the body — and Brooke's addition that with a condition this rare, the parent often has to educate the doctors too.
"So that I could be her voice." Brooke's answer when Keith observes that God did not prepare her hospital training to make her a nurse, but for something else. It is the thesis of the whole second half.
Brooke closes on Alexis' spirit: a girl who has been tested and poked more than most adults, who tells herself she is brave and that her doctors need her blood to keep her healthy — and who, when her mother gets emotional during a procedure, holds her hand and says, 'it's okay, mom.' Keith names it empathy; Brooke calls her a special girl.
Scripture & context
- 28:53 Keith initially resisted Brooke's relationship with Michael — he looked him up online and decided he did not match the picture he had of who he would hand a daughter to. He asked her for an open mind and an open heart, and her answer, 'dad, I trust you,' is what changed him. He then spent time with Michael one-on-one before blessing the marriage.
- 36:02 Brooke's analogy for 17q12: the body is a book, the 46 chromosomes are 46 chapters, and in Alexis' book chapter 17 is missing its twelfth sentence. Her body is functioning on partial instructions, which is where the renal and neurodevelopmental diagnoses come from.
- 1:14:39 Keith paraphrases scripture — 'we won't have burdens placed on us that we can't bear' — to tell Brooke she has been a good burden bearer. He does not name a reference; the phrasing is the common everyday rendering usually traced to 1 Corinthians 10:13.
Questions answered
- What is 17q12 microdeletion syndrome?
- Brooke describes it as an extremely rare genetic condition in which part of the seventeenth chromosome is missing. Her analogy: if the body is a book and the 46 chromosomes are 46 chapters, Alexis' chapter 17 is missing its twelfth sentence, so her body is trying to function on partial instructions. The main systems affected are renal and neurodevelopmental, which is where most of Alexis' other diagnoses come from. jump · 36:02
- Why wasn't Alexis diagnosed with autism until she was ten?
- Because her other conditions kept absorbing the explanation. Brooke says doctors repeatedly answered that Alexis has a genetic condition, so the traits must come from that rather than from autism — even though research shows autism commonly accompanies 17q12. Most children are identified between three and five; Alexis' diagnosis took roughly a year of repeated testing and appointments to secure. jump · 43:25
- Why did getting an autism diagnosis matter so much practically?
- Their insurance capped physical, occupational and speech therapy at 30 sessions a year, and Alexis was going multiple times a week — she would have burned through a year of sessions in a few weeks. Brooke found a clause granting unlimited sessions to people with an autism diagnosis. Getting it into the chart preserved her therapies, opened the door to 30 hours a week of ABA therapy, and qualified the family for the scholarship that now funds homeschooling. jump · 45:00
- What does Brooke tell parents who are in the middle of this fight?
- Lean on a good care team — physicians willing to advocate alongside you, and social workers or caseworkers who can help with paperwork. Then her two lines: 'don't let a broken system silence your child's voice,' because you are the voice of a child who cannot speak for herself, and 'don't ever let fine enough be good enough.' She and Keith both add that there is no shortcut. jump · 50:19
- Why do parents have to 'broadcast' their child's failures?
- Brooke says the system does not reward or assist children who are doing well; assistance flows to demonstrated failure. So instead of celebrating a child's victories, a parent has to put missed milestones, maladaptive behaviors and test scores on display for strangers. She calls it the aspect of this life she never expected, and says it feels like betraying the person she is trying to help. jump · 52:13
- How does Brooke handle those conversations with Alexis in the room?
- She prepares Alexis beforehand — telling her they will talk to the teacher or doctor about how she is doing and what she still needs help with — and frames it around keeping the helpers she loves, like her therapist Miss Amanda. Afterward, usually in the car, she asks Alexis how it made her feel, affirms that the feelings are okay, and reminds her the reason for telling an adult is to get help, not to get her in trouble. jump · 54:44
- Why is Alexis considered high risk for being taken advantage of?
- Her doctors classify her that way. Brooke explains that Alexis is so kind she assumes nobody is capable of being mean, and she does not recognize when she is being taken advantage of or know when something needs to be reported to an adult. Keith recalls that on the school playground she thought she was playing when she was being bullied and could not tell the difference. jump · 59:10
- What support exists for parents of children with rare conditions?
- For 17q12 specifically Brooke found nothing local — only two online groups, and even other families' symptoms can look completely different. Locally in Cape Coral she names Family Initiative, an autism and advocacy resource center with support groups and playgroups, and Cheer Abilities, the adaptive cheer team Alexis is on, where the other parents all know the same system. jump · 1:03:48
- What happened when the school stopped following Alexis' IEP?
- Alexis' bladder does not signal her brain, so her IEP required staff to prompt her to the bathroom on a timed schedule. After her aide retired without a replacement, the prompts stopped, she came home in soiled clothes, and at her next scan both kidneys were enlarged instead of one. Brooke notes an IEP is a legally binding agreement, and the family had grounds for legal action; ultimately they took her out of the district. jump · 1:10:01
- What does Keith mean by calling the parent a 'general contractor'?
- At one point Alexis had twelve or thirteen specialists, each looking only at their own part of the body and not at how a recommendation affects the whole child. Keith, who works in construction, compares them to subcontractors: they may know their trade better than you, but the parent is the GC who coordinates the build, keeps everyone talking, and refuses to feel inferior because someone has letters after their name. jump · 1:20:59
Helpful links
website
- Still Strong The podcast's own site, where the shirts and hats mentioned throughout the episode are sold.
verse
- 1 Corinthians 10:13 (KJV) The passage behind Keith's paraphrase that we are not given burdens we cannot bear.
Full transcript
Intro: I learned the hard way. Nothing's overnight. Some days you lose, some days you survive.
Keith Vance: Still
Keith Vance: Today's episode is gonna be a little different.
Keith Vance: Still strong is my demographic. People that are older, still have things to do, still getting after it. Still strong. Still strong is also about life adversity. When when life gives you challenges and you have a decision to make, to lay down and quit or to choose to be still strong. But what if still strong is all you know? What if there's adversities or challenges that you were born with, and that's all you know? That's gonna be the theme of today's podcast. But before we get there, I wanna introduce a special person to you. I'm here with my step granddaughter. She just turned 14, and I just want you to get to know her.
Keith Vance: Let it roll, brother. This is it. Alexis D'Agustin. What? Welcome to the podcast, girl. Thank you.
Keith Vance: You alright? Yeah. I'm nervous. Same. You're nervous? Yeah. It's crazy. Alexis. Yeah? You recently had a birthday. Yeah. How old are you, girl? 14. 14. 14 years old. How does it feel to be 14? Good.
Keith Vance: Yeah. It feels good to be 14? Yeah. Yeah. We are going to dive into this thing. But before we do, you already have a still strong hat. Right? Yeah. Yeah. I got you something else. What? I got you a birthday present, baby. Look at this. Still strong. It's the new design. Still strong. Okay. You can wear that at your birthday party tomorrow, or you can put it on now. Yeah. Let's do it. You
Keith Vance: got it? There you go.
Keith Vance: Can we help you?
Keith Vance: You open this thing on. You're doing great. One.
Keith Vance: There
Alexis: you go.
Keith Vance: There you go.
Keith Vance: You go. Nice. Here. Feel comfortable? Yeah. Get your hair out. There you go. Yeah. Right. Yeah. Alright. There we go.
Alexis: That's that's fine.
Keith Vance: Man, girl, that looks good on you. Listen. Listen. That looks good on you. So I need you to do me a favor. What? Okay.
Keith Vance: What? I need you do me a favor. Oh, wait. You're Oh, man. You alright? Yeah. So your granny your granny told me that I'm, like, a $100,000 deep in this podcast right now. No. And, I'm giving away I've given away a bunch of shirts and hats. So you can either get these shirts and hats by being on the podcast or your papa has a website, stillstrong.com. What do you mean? Can you tell these people to go on papa's website, stillstrong.com? Yeah. And help help me get out of this $100,000 hole and buy some shirts and hats? Yeah. Alright. Tell you YouTube people.
Alexis: Make sure you go to my papa's website.
Keith Vance: You get hats and shirts. Thank you. Yeah. Appreciate you. Your granny's gonna love that. Alright. Thank you. Yeah. Alright, girl. Let's get it. Yeah. Alright. So you just had a you just had a birthday. You're Yeah. 14 years old. No. What? Yes. You did. Okay. You just had a birthday. Right? You're 14. Because we're having your party tomorrow, Saturday. Right? Yeah. You're invited. I'm invited? I'm coming. What do you want for your birthday? Anything Power Rangers. Anything Power Rangers. Okay. I'll let Granny know. Okay. You don't call her Granny. Alright. What what do we call her? Graham. Graham? Okay. I'll let Grammy. I'll let Graham know.
Alexis: Graham,
Keith Vance: Graham. Grammy? Graham. Yeah. I'll let her know. We'll get you some Power Ranger stuff. Alright.
Keith Vance: I saw you brought some stuff with you. Yeah. Tell me what you got. What do wanna start with? This here? Yeah.
Alexis: I got this certificate from martial arts. And
Keith Vance: What's your martial art? It says let me read that. Anniversary. Let me read this. You do martial arts? No. I do. Yeah. Because you practiced on me all the time. Every time you came over, you practiced on me. Yeah. This certificate recognizes martial arts university student Alexis de Augustine attend attained the rank of yellow belt in the art of karate. Uh-huh. 05/27/2022. Yellow belt. Uh-huh. And you brought your yellow belt. Yeah. Are you gonna keep going with that? Are you gonna are you gonna are you gonna advance? You know, you're done with it? Yeah. You're done with karate? Yellow belt was your goal and you're done with it? Yeah. Alright. That's good. So hold on a minute. I'm not there yet. If you have a yellow belt, like,
Keith Vance: can you pretty much beat up anybody you want with a yellow belt? Yeah. You you're pretty confident you could lay somebody out with a yellow belt? Yeah. Okay. There's white belt. Then what's next? Yellow, orange,
Alexis: blue, purple, green, purple,
Keith Vance: black, and white. Okay. But you feel like yellow is good enough for you? Yes. Okay. Good. I think yellow is pretty good too because you've practiced on me and you I haven't. You have practiced on me. How do you know? Because at my house, you're like, hey, papa. Let me show you my moves. And you would punch me and stuff. And I was like, yeah, I think that's good enough. So I think yellow is good. Yellow is a good a good skill set. Orange. Do you want orange? No. No? Alright. Then don't worry about it. What else you got? Laughing at me. What else you got over there, baby? What else did you bring? Holy moly. What is that? A chair medal. Let me see this.
Keith Vance: East Coast championships athlete.
Alexis: Mhmm.
Keith Vance: So you you were a cheerleader? I am. You still are a cheerleader? That's cool. What's your best cheer?
Keith Vance: This one? You don't do you say any words or you just go like this? I just do it. You just go like that? Yeah. Mhmm. That's what you do like that? Yeah. You don't say any words? No. I thought cheerleaders, they'd be like, go. No. You just do some moves. Oh, you just do dance? Yeah. You do, like, dance cheer. Right? Yeah. Got it. Yeah. It's just yeah. Just it's cool. Right?
Alexis: You
Keith Vance: got any other things over there, girl? No. That's all you got? Just oh, here. Here. There's someone here.
Alexis: It's a soccer trophy. Oh my goodness. To do soccer,
Keith Vance: and I won. You won in soccer? Yeah. Our team was the Pink Cotton Candy's. The Pink Cotton Candy's was your soccer team? Yeah. I went to one of your games before. No. You did it. Yes. I did in Cape Coral. I don't remember. You remember I gave you some money after the game when you guys won. Remember? I used it. Oh, you hurt my feelings a little bit.
Alexis: Oh,
Keith Vance: so you got they gave me money. I did give you some money, but you guys won that game. But what how many dollars did you get? I think it was, like, $50 or something.
Keith Vance: Anyway, so you've you've done martial arts
Alexis: Soccer.
Keith Vance: Soccer. Cheer. And cheer. Yeah. Out of all those three, which one was your favorite? Soccer. Soccer? Let me see that. Put it back. What do you like best about soccer? Like, I take the ball very hard. You do? Yeah. For example. For example? That was a pretty good kick. So soccer and karate kinda go together because you're kicking stuff. But do you think it's more fun to kick balls than people? Yeah. Oh, yeah. That's cool. So what you've been doing at 14, what's your life like? What are you doing? How many boyfriends do you have? I have none. What in the world? Last time I talked to you, you had a boyfriend. No. And I kept telling He broke up with me. Oh my goodness. This is new news for me because I kept telling you I kept telling you, hey. Let me know when you wanna like, if I need to beat up this boyfriend. And you kept saying, papa, no. He's my boyfriend. Don't beat him up. I said, well, if I need to, you let me know. So what happened?
Alexis: Well,
Keith Vance: actually, he broke up with me. No. He did not. That's another reason why I need to beat him up. He broke up with you? Yes. What is wrong with him? I don't know. What in the world? Well, he said he didn't like me.
Keith Vance: That's not nice. Can I beat him up now? Yes. Let's do it. Let's put your yellow belt on and go find this kid. I love it. We can practice. I wanna practice on you. No. You should not. Not right now. Not on the podcast. I can't get beat up by a 14 year old on the podcast. Not yet. So your boyfriend broke up with you? Yeah. Well, you know what? What? Like, this podcast is gonna go out. Maybe there's somebody somebody out there that might like Want to come. Might need a girlfriend that's 14 years old. What do you think? Yeah. What kind of boy are you looking for? What were you looking for in a man? A cute boy. Oh, so describe to me a cute boy. What are you looking for in a man?
Alexis: He's
Keith Vance: tall. He's tall? What color hair do you like? Blonde. Blonde hair? Yeah. What else?
Alexis: Yeah. What I don't know what his favorite color or I don't want his age of 12.
Keith Vance: You want him to be 12? Yeah. Okay. Because you wanna be a little bit older. Right? Yeah. You like Since I'm older. So you like younger men? Yeah. Okay. So you're looking for a 12 year old, blonde hair, tall. Does he have to play soccer or do martial arts? No? What do you want? What does he what should his hobbies be?
Alexis: Coloring.
Keith Vance: His hobby should be coloring? Yeah. Oh, you like the color? Yeah. What's your favorite color?
Alexis: Like my
Keith Vance: girlfriend color? Yeah. What's your favorite color? Blue and red. Yeah. I know it. Yeah. Do you remember do you remember the story one time when you were in school and there was a kid there was a kid who didn't think blue and red were the favorite colors? No. I remember hearing a story about you a few years ago that you were arguing with a kid in school that was sitting next to you, and you said blue is the fave the best. And she's like, no. A different color was the best. And you said, you better say blue is the best or I'm gonna stab you with a pencil. Do you remember that? No. Because your mom and dad got a phone call that you're threatening to stab. I don't You don't remember that? No. Because they wouldn't agree that your blue was the favorite color? You don't remember that? No. Listen. That was pretty traumatic on the family. I'm surprised you don't remember that one. You don't remember that one. Do you have any pets?
Alexis: I have one dog and two cats. What are their names? Doug.
Keith Vance: Doug? Yeah. Your dog's name is Doug? Yes. That's not a dog name. That's like a human name. Alright. So Doug? Murphy. Murphy. MJ. Yeah. One dog and two cats. Yeah. That's cool. The little one hisses at you. He hisses at you? Is he mean? Yes. Why? Did you step on him back then or something? I don't. No. No? Okay. So
Keith Vance: what would you like to talk about next?
Alexis: My surgery.
Keith Vance: Is that what you wanna talk about? Alright. You just had a surgery. Right? You can pull that microphone down if you want. There you go. You just had a surgery. Right? Yeah. Because you just got off a wheel a wheelchair recently. Right? You were in a wheelchair for do you remember how long? Yeah. I think it was, like we can ask Brooke, but I wanna say it was, like, at least one or two months. Right? Yeah. You're you're pushing I had to be in the
Alexis: hospital for a minute.
Keith Vance: I know. You're in the hospital for a long time, and you're doing therapy right now. Right? Yeah. Let's see it. So you have
Alexis: The
Keith Vance: A piece of tape on your leg. I don't know what that is called. And some type of, like, athletic tape to train your muscles how to work. Right? So they're just they're just practicing with that leg. I have to keep this on for a month. You gotta keep it on for a month for one day to make sure there's you don't have allergic reaction or something like that. Yes. You're doing therapy because you had surgery on that leg. Right?
Keith Vance: Yeah. That's the one you had surgery on? Yeah. And they might do this one on August. They might do that one in August? Yes. What was it like having surgery and being in a wheelchair? Pain.
Alexis: It wasn't? No. It was. It was a lot of pain? Yeah. And I had stitches.
Keith Vance: I remember. Wait. How do you know? Listen, girl. I came over to your house and visited you, and I brought you McDonald's and everything. I sat there watching TV with you. You laid on me. You laid on me. I laid on you. Yeah. I took a nap on your lap. Right? Yeah. Brooke was doing work, you were watching TV, and I fell asleep on your lap.
Alexis: And you got me McDonald's? I did. And
Keith Vance: Sunday. Sunday? Yeah. Like, ice cream sundae. Remember? And I brought you a bunch of snacks.
Alexis: And you bought me Gatorade.
Keith Vance: I did. Yeah. I don't remember what color. I I think it was blue. I think you said your favorite one was blue. Yeah. It was blue or red. Yeah. You said blue. Yeah. Yeah. So your so your surgery,
Keith Vance: you're up and moving now. Is your leg does it feel better? Yeah. Are you glad you got the surgery? Yes. Yeah. But now you gotta get the other one done? Yes. So what do you thought? What do you feel about that? What do you think? I'm a little bit nervous to get You're a little bit nervous. Yeah. Because I did find on this one.
Keith Vance: You can't really tell my scar. No. You can't. They did a good job. So what was the hardest part about having surgery and it being in wheelchair? Not moving. Not move oh, yes. I'm glad you said that. The weight that I couldn't I remember. I remember they had, like, a foam block between your legs. The wedge. They had a wedge between your legs and, like, banded up, you weren't allowed to move your legs. Remember? That was weird. That was weird. Right? Felt sorry for you. It's okay. Remember we went we went to dinner, and you were sitting next to me with your legs strapped together like this. I couldn't move. And I couldn't even really push you on the table that great. Remember? No. You're in the wheelchair with your legs up like this.
Alexis: And I can't yeah. I'm moving on accident.
Keith Vance: Remember? You kept moving on accident. Yeah. Yeah. But it all worked out. Right? I'm glad I'm glad your leg's feeling better. Yeah. And I ripped it up. You ripped what up? My what? Since I didn't need it anymore. Oh, good for you. I would've ripped it up too.
Alexis: I would feel
Keith Vance: Oh my goodness. So what do you do for school now? Do you do you do you do homeschool? Yeah. Yeah. How do you like have a RBT that's here. What's that? I have a RBT that's here. RBC? RBT. RBT? Yeah. What does that mean? Like, I have,
Alexis: like, a behavioral therapy.
Keith Vance: A behavioral therapist? Yeah. Oh, got it. So what does that What does school what does that look like? When she comes over, what do you guys do? Like, what's your typical We we do activities
Alexis: together. You do activities? That bracelet that dad has.
Keith Vance: You made your dad a bracelet as an activity? Yeah. That's cool. What other activities do you do? Because you come over here and you come over here sometimes and I watch you. Like, I see you, like, sometimes you do dishes. Right? What do you mean? Listen. These people are gonna think I'm making stuff up. Do you not wash dishes over here? Yeah. I see her standing there watching you wash dishes. I see you make your own food in the microwave.
Alexis: Not microwave.
Keith Vance: You're making my This one? This microwave? Yeah. The one in my in the office over there. When you come over here, I see you making heating up food in the microwave, preparing your own food. So, anyway, what do you guys do? What's your typical day like with your behavioral therapist? What do you guys do? We play basketball, but there's a truck right there. I know. I gotta move that truck. I'll move it. Really? Yeah. I'll move it for you. I'll move it today. So you play basketball. You Go on the playground. You go on the playground over there. Yeah. You do activities like make your dad bracelets. Right? Yeah. What else do you do? Do you do schoolwork? Yeah. I also do schoolwork. What kind of schoolwork do you do? Math,
Alexis: reading, language arts, typing.
Keith Vance: Typing? Writing. Writing.
Alexis: Social skills.
Keith Vance: Social skills? And that's it. That's all you do? Which one's your favorite?
Alexis: Oh, and I also have lunch too.
Keith Vance: Function. What? Lunch. You have lunch. Yeah. Yeah. Lunch was always my favorite in school. That's your favorite? Math. Math is your favorite? My Reese. My favorite?
Keith Vance: Listen. You can't be looking at your dad over there. He's laughing at me. He's just laughing at you, isn't he? Math is your least favorite. Yeah. What's your most favorite?
Alexis: Like, favorite? Yeah.
Keith Vance: Reading. You liked reading? Yeah. That surprises me. Did you like reading? No. I didn't like reading. I was such a slow reader. You know what I would do? What?
Keith Vance: All my years of school, even when I was in high school, I would read the back of the book to find out what it was about, and then I would read that cheating? Probably. And then I would read, like, some of the paragraphs, like like, the first sentence in the paragraph just to try to get an idea what the book was about. Yeah. And sometimes I did good, but sometimes I was, like, way off. Sometimes I was way off. Yeah. Sometimes you can't get enough information from not reading the whole book. So you like reading. That's good. Reading is good for you. Yeah. Reading is good for your imagination. Did you know that? It's proven that reading books is good for your imagination. Yeah.
Alexis: I wanna be a police officer when I grow up. Holy moly. Mhmm. That's a dangerous job. No. It's not.
Keith Vance: Yes. It is. But I think said he might know. I think you have the skills, though, because you know karate. So I think I think you might be a good police officer. Yeah. I could hold on my belt
Alexis: or something. Yeah. That's right. And they also could hold on the rest. You know? Yeah. I think so.
Keith Vance: So what made you wanna be a police officer?
Alexis: Well, at my after school care, there's a there's a counselor in rank group who wants to be a police officer.
Keith Vance: Yeah. So you thought it sound like a pretty good stable job?
Alexis: Yeah. That's good. Duncan under arrest you.
Keith Vance: You wanna arrest me? Yeah. But I didn't even do anything. If you did, I would. You would show no mercy for me even though we're family? You would arrest your own papa? Yeah. You would? Holy
Alexis: moly. And I might
Keith Vance: live by myself. Yeah. I think you'd be a good police officer.
Alexis: Would you wanna come visit me? I would. I'd visit you.
Keith Vance: Yeah. I think you'd be a good police officer. Yeah. That sounds like a good job. Yeah. Yeah. You get to wear a uniform, get to ride get to ride around in a police car all day, arrest some bad guys sometimes. Taze them. Taze them if they need it. Use your martial arts skills.
Alexis: I'll be like, wow. Yeah. And kick them.
Keith Vance: And flip them. You would flip them? I think you'd be a good takedown girl.
Alexis: I would grab them by their,
Alexis: you know, like, back. Yeah. I would be like, put your hands up now,
Keith Vance: or I'm gonna get you. I'm gonna tease you. Yeah.
Keith Vance: Betan you. That's betaunda? Man, you're getting violent now. I don't know if you should be I don't know if you should be a police officer. They might I am. You might. You're you're going to be? And that all that matters. That's all that matters. Yeah. You're right. So math is your least favorite. Reading is my favorite. Reading is your most favorite. I wanna be You wanna be a police officer. Yeah. My favorite color is blue. Your favorite color is blue. You pretty much know martial arts already. That's why you quit a yellow belt because you got the good skills. You do cheer. Soccer was your favorite. You just had a you just had a birthday. You're 14. Your boyfriend Broke up with me. Broke up with you. We're gonna beat him up in a little while because he's now finally said I could. And you're single now. Does it feel how does it feel to be single? Do you like being single? Yeah. It's a But I can find another boy. You can find another one. You can do whatever you want. Right? Would you help me? Yeah. I'm helping you right now. We're gonna find you a boyfriend on this podcast. A nice boyfriend. A nice one with blonde hair, tall. What else? That likes that likes I tried to give her a the color. Right? You said you said he has to like the color. Right? Yes. K. He has to like the color blue. He has to like the color blue.
Alexis: And and red. And red. Yeah.
Keith Vance: And you had surgery on your one leg recently. You're in a wheelchair for, like, two months. Really? That's what you said. And the worst part of the surgery was not being able to move in that wedge, and you ripped it up. Yep. But you're get another surgery on your other leg. Is there any other questions I should be asking you that I haven't asked you yet? No?
Keith Vance: You tired? You got class after this, don't you? You have class after this, don't you? Your teacher's out there waiting on us. Yeah. Maybe she'll give you a little break. What do you think? Yeah. Yeah. Anything else you wanna talk about? No. No? That shirt looks good on you.
Alexis: Thanks.
Keith Vance: Yeah. I like it. Stay strong. Yeah. I got mine. Mine's black. Mine's black and yours is blue. Yeah. What are gonna what are we gonna do for your birthday party tomorrow?
Alexis: Graham's in charge of drinks.
Keith Vance: Okay.
Alexis: She's in charge of drinks. He's in charge of pizza.
Keith Vance: Your dad's in charge of pizza? It better be good too. Yeah. What else? Where are we having it at at the park? Or Yeah. Are we having the park again? Yeah. The same one we did last year? No. No? The Southeast Park. Okay. Because one year we did bowling, I remember. Remember one year we had a birthday party, we did bowling? No. And then one year we had a park, and another year we had a park. Yeah. What park? I don't remember. There's one park over there in Cape Coral where you live. Youse? I don't remember. The Youse Center? No. I just rode with granny. I said, granny, let's take me to Alexa's birthday party. Yeah. Oh,
Keith Vance: remember I got you a four wheeler for your birthday last year? No. Are you kidding me?
Alexis: Is it still here?
Keith Vance: What? Is it still here? Yeah. Still here. You hardly ever ride anymore.
Keith Vance: That's because I'm grown. You're too big for it? You need a bigger one now? That's interesting. And if anybody's listening, that's in the I can subscribe. Oh. Oh, okay. Well, tell them. Yeah. Tell them. Let's hear it. You and me together. Alright. What are we gonna say? Like and subscribe
Alexis: on Papa's podcast.
Keith Vance: Yeah. Like and subscribe on Papa's podcast.
Alexis: Double tap that bell. Sorry?
Keith Vance: And tap that bell? Yeah. Alright, girl. Anything else you wanna talk about? You sure are pretty. Thanks. You having a good day? Yeah. You ready to get some school done? Yes. Alright, girl. Wanna talk to you. Welcome to part two of the Alexis D'Augustine podcast. Brooke de Augustine, welcome to part two of the podcast. Thank you. Happy to be here. I'm gonna give some backstory here in a minute, but, you watch all my you watch all your dad's podcasts I do. So you know the routine. I do.
Keith Vance: Brooke, these are Richardson one twelves. My kids tell me they're the best. Your kids say they're the best. You do that? Also, I didn't realize your mom told me. I said, hey. I said, hey. This podcasting I'm doing, should I keep doing it? She's like, what do you mean do you should you keep doing it? She's like, Keith, you're a 100 k deep. You don't stop. So, we have a website, stillstrong.com. You can get shirts or those hats either by being on the podcast or by going on the website, stillstrong.com. I think they're, like, $35 apiece or $35 apiece. I don't know how many it is to get my $100 back. But Buy a shirt. If you feel like if you feel like helping an old man out, getting his wife off of him, I'd appreciate you. So you got your hat. Thank you. Brooke, let's lay some groundwork down. We just I just interviewed Alexis. Turf four she just turned 14. We're gonna have her party tomorrow, which is Saturday. This podcast gets dropped Wednesday in a couple weeks. Michael and I like having keeping a couple podcasts in the pocket Mhmm. Just so when, you know, family vacation stuff comes around, the content keeps going. So we had talked about having Alexis on the podcast just because ever since she was little, every time she'd get your phones, you'd hit the record. Like, hey, YouTube. Welcome to like, so it was just just something fun to do. Yeah. And I said, well, you know what? Let's do it just to have fun with her, but also let's make it still strong as life stories, connecting life stories to other people that are might be walking the same road and say, hey. Here's what we walk through, and then make it relatable and just try to share some humanity that you may not be the only one. Right. Okay. So the groundwork is one day you came home from visiting a church. We're starting way, way back. We have to. We gotta lay down. You came home from visiting a church, and you're interested in a young man. Mhmm. And I looked him up on Facebook. I'm like, no. That ain't they don't fit the like, they don't fit they didn't fit my vision of who I wanna hand my daughter off to. Mhmm.
Brooke: And then What was it specifically about him that didn't fit the vision? Well,
Keith Vance: it just you know, you have a vision. Like like, in my mind, I got five daughters. In my mind, you I was gonna hand you girls off to someone who I knew, like someone that I know their family. It wasn't the lip ring?
Keith Vance: That was part of it. That was part of it, the lip ring. The tattoos. Tattoos didn't bother me. The the just it just wasn't my my look. Right? And, but you were slowly, like, easing me along. I think it was a few conversations and you're like, oh, by the way, you know, he also has a child. And I'm thinking, like Mhmm. You were being strategic. But God did something to my heart, and I said, hey, I'll have an open mind and an open heart if you have an open mind and open heart. Remember? Mhmm. I remember. I said, will you be will you be will you trust me with this or this? Mhmm. And you said, dad, I trust you. And that just made me feel like because I wasn't expecting that. I was expect Yeah. Expecting, you know, dad's my life. Like, I'm gonna do what I want. Well, I knew if
Brooke: we were going to have anything long lasting and the only way I could maintain a healthy relationship with you and a potential partner would be if you were on board. If I would have said no and gone that way, you wouldn't have got to know Michael. And I think our relationship would have suffered.
Keith Vance: So I said, let me date him first. Mhmm. So not only did he have a child, he's also a lot older than you. Nine years. Eight years. Nine years is a lot when you're nine and he's 18. Like, it's not so old now once you hit the thirties, but, like so I struggled. You know, I struggled, but I said, you know, when you trusted me, it did something to my heart. It's like, okay. I'm gonna I'm gonna all my preconceived ideas, what I see on the outside, God help me to, like, help me to be objective. And I dated your husband for a while.
Brooke: I remember.
Keith Vance: We went to coffee and stuff. Mhmm. And I got to see his heart. And God was doing something in him during that time that we we connected. And I said just because it wasn't my perceived idea, God can do what he wants and God is at work. And, where we sit today where we sit today with Alexis in our life, with the we're gonna get to it Mhmm. With her special needs and the care that she needs.
Keith Vance: God put you in her life and vice versa because you always said, I'm never gonna have kids. Mhmm. I think being the second oldest of seven, you probably change more diapers than most adults Yep. At 12 years old. I can understand why you wouldn't wanna have kids. But, anyway, so that's kinda like the general the general groundwork of how Alexis came into our our life. Mhmm. Okay. So she, she was born with some disabilities because if you can just and Michael, you chime in whenever you want. You're off camera. But let's start let's start from the beginning. What was she born with? What do those what do those health challenges look like short term, long term? Just just just walk just walk walk through that process with me. Okay.
Brooke: Michael, do you wanna talk about when she was born? She was born premature and what that that was like before I
Michael: Yeah. So we had gone in for a checkup, and they did an ultrasound, and it was revealed that the umbilical cord was wrapped around Alexis' neck. And, they said that the only choice at that point was to go into emergency c section to prevent any future problems or damage or obviously losing the baby. And so they what what was supposed to be a standard checkup turned into a emergency. You're having the baby now. And so we just got rushed into it. And then I had to call family members, mom, dad, stuff like that, and everybody rushed to the hospital. And, obviously, that resulted in her being premature. She was a tiny little baby. Four pounds? Yeah. Yeah. Barely four pounds, but it was a successful c section. I did not foresee myself being in a Surgical Room for the birth of my child, but I was sitting there in scrubs. And I don't know how to really explain it other than the fact that I don't even feel like I was in my body at the time. I was just standing on thank goodness they put a curtain up, so I didn't see anything. But, I was standing on the other side. Alexis, once she was delivered, they took her over to a table. She wasn't crying, and that scared me. And it took it took a few minutes with the nurses working on Alexis, and then she she started crying. And I'll never forget, like, once you hear once once I heard the crying, I it's it's like I kinda snapped back into my body. I started bawling my eyes out because I'm a I'm an emotional baby, but they told me that I could I could leave that room as they were putting everything back, and I opened the double doors. And at that time, they had removed that I was so far away from the room that we are originally in. I didn't know where in the hospital I was, but when I got out of the double doors, it's just, the middle of the night. So it was super dark outside, and somehow my dad had found the he was right outside of the surgery room. He was, like, looking out the window and, like, turned around, and he was crying, and that kills me. That killed me. And I just went and hugged him, and Alexis was born.
Brooke: I do know that she did have some complications even after being born. She spent some time in the NICU. She struggled to gain weight. She was jaundice for a little while. But, ultimately, they were sent home with a a happy, normal baby. And, I believe Alexis got her first diagnosis around age two. They noticed some delays. She wasn't hitting some of the milestones that babies typically hit. First words, first steps was all kind of delayed.
Brooke: Her mom found herself in Miami meeting with a geneticist. They did genetic, testing, and Alexis's lab results came back with markers that indicated seventeen q twelve microdeletion syndrome, which is her primary diagnosis that kind of spawns all of her subsequent diagnoses. Seventeen q twelve is an extremely rare genetic condition.
Brooke: I kind of explain it like if your body is a book or a manual and your DNA or your your 46 chromosomes are 46 chapters that make up that book. For her, if you open up that book to chapter 17 and you look and find the twelfth sentence, it's just missing. So she's missing a portion of her seventeenth chromosome. And as a result of that, her body is trying to function with only part of instructions. With 17 q 12, the, primary factors that are affected are, renal issues. So she has problems with her kidneys and her neurodevelopment. So, Alexis struggles with, attention deficit hyperactive disorder, autism spectrum disorder, mild cognitive impairment, microcephaly, congenital hydronephrosis, a neurogenic bladder, malformations of her bones, hypotonia, hip dysplasia, and the list kind of goes on. But all of that stems from her genetic condition.
Keith Vance: So at two years old, she had a diagnosis.
Alexis: Mhmm.
Keith Vance: When did she come into your life?
Brooke: I think shortly after turning five is when I met her dad. And a few months after us dating, I was introduced to Alexis. And my first thought was, are we sure this kid's five? She was so small, which is another hallmark of the seventeen q twelve is very short stature, very delayed, very at the time, I mean, she was five, but she was only, I don't know, thirty pounds, tiny little thing. You could she was still in a bay like, a a a baby car seat at the time. I remember we were able to pick her up and carry her in her arms up until she was about 10 years old. She only weighed fifty pounds at age 10. And so part of part of her condition is also just being very small. But, yeah, I met her around age five. Very quickly started to notice there were delays.
Keith Vance: I haven't I had a memory because it I remember that there was contention between you and Michael Mhmm. Because you have a sister that's not much older than her. Mhmm. And you're making comparisons. And you're saying, hey, Michael. Like, do you realize that so and so is only this much older and, like, she should be Mhmm. You know, it was almost like you were, like, taking a side against her, and I remember there being that contention. But then, like, through that those conversations, there became, like, an awareness of, oh, yeah. You're right. Like, she she is behind the Mhmm. The curve a little bit. Mhmm. So I don't know if there's if there's something there for somebody, but nobody like, your child is your child. You see your child a certain way. Mhmm. Your the way you perceive your child, like, they're perfect. They're but there was that you were just looking at from a different point of view. Right.
Brooke: From more of a a clinical perspective is not yet having that emotional attachment to this child, but just seeing her as medical chart or, like, data. Like, you are not in line with your peers. You're you're not you you haven't yet reached these milestones that, you know, children of similar ages have already reached. And what are we doing? Like, are are your parents aware of this? What's being done about this? Are we just, like
Keith Vance: And I gotta I gotta make this point because I'm just having some some thoughts. During this time frame, you were going to college to be a nurse. The nursing program had closed down, so you were waiting for the nursing program to reopen. So in the meantime, you're like, if I'm gonna be a nurse, I might as well go work for a hospital. Mhmm. So you're around you're in this environment. You're working at the ER. Right? High stress, and you're you develop skills on how to navigate through the hospital system. Mhmm. In fact, I think they gave you at some point, they gave you they're like, hey, Brooke. Manage this for us, like, point a to point b type stuff. So I just have to bring that to light that it seems like and you and I had had this conversation. It seems like God put you in the right place preparing you for Mhmm. To be able to help your stepdaughter in a way that maybe she wasn't able to get. Right. K? So we had talked about that, and I wanna talk about that a little bit. The other thing is
Keith Vance: the family and, again, I'm it's not disparaging. It just is what it is. The family only knew Alexis the way they saw her and saw her in this, like, this vacuum. Mhmm. And when you came with a different perspect coming in from the outside seeing a different perspective, I feel like that's when potentially she started getting some some medical help Mhmm. Through your intervention that she wasn't getting, not because they didn't obviously, didn't care they love her, but just weren't seeing it because this is how she's always been. Mhmm. She's just she's always been small. She's always been whatever. You follow me? Mhmm. Is there something there to that? Yeah. I would say so. Is that accurate? I would say so.
Brooke: I think in that regard, it's like you said, it's not because they didn't love her or they didn't care, but the effort that it takes to navigate the medical system, the educational system, insurance when you are dealing with a special population, it's a second full time job. And so unless you have the time and the Tools. The tools to be able to where do I start? It's it's exhausting, and nobody nobody helps you. Nobody's going to just give you this assistance for nothing. You have to work for it, and you have to fight for it. And, so I think it was just not knowing how to navigate a system that is not meant for people like Alexis.
Keith Vance: Since we're in this little pocket, can you just speak to this? Can you speak to some of the health challenges that she had and how with your being in the medical community, how you were able to navigate through some of those things that would have been maybe they're not done or, like, a long hard battle. Like, when you don't know where to start, where do you start? Yeah. Can you maybe navigate through some of those things?
Brooke: One of the big ones and one of the issues that went on addressed for a long time was Alexis' diagnosis of autism spectrum disorder. It's, very commonly is found in people that have seventeen q twelve, but because you're also dealing with other neurodevelopmental issues, cognitive impairments, you know, other things that it's kind of well, is this straight because of the autism, or is it because of the seventeen q twelve? And so that's what we were running into was, well, she's not autistic. She has this genetic condition. Well, is it not possible she can have both? It it is. In fact, we've seen research shows most people that have it, it is accompanied by this diagnosis. Alexis went undiagnosed with that until she was age 10. For context, most children are diagnosed between ages three and five with the, you know, legwork or the kind of initial investigation into it being done at about 18. So because of all of her other underlying comorbidities, it just went unnoticed or, well, what's you know, kind of what's it matter if she has this? It doesn't change the fact that she has the genetic condition. Like, what what what does it benefit you? And that was getting that diagnosis was a a huge benefit. So we had to
Brooke: Alexa started physical therapy, occupational therapy, speech therapy. Our insurance caps those therapies and neurotypical children at 30 sessions a year. She was going multiple times a week. She would have exhausted those sessions in a few weeks and would not receive the help that she needed in order to carry on making progress towards her life skills or activities of daily living. So I going through all of our insurance paperwork, how can I get her more sessions? What are the loopholes? Like, where where can I make the system work for me? And there was a clause in there that said persons with the diagnosis of autism have unlimited sessions. So it was okay. Well, a lot of, you know, Alexis' behaviors, a lot of her traits are are very similar to persons with diagnosis of autism. So can can we, you know, investigate this? We, talked to her doctor. Her doctor ordered all of the testing. We had to do a psychoeducational evaluation, which is ours with the school district, her sitting with a clinician and, you know, going through all of these exercises. She had to do, ADOS testing. We went through everything. On all of her tests, they all indicated autism spectrum disorder. She scored within that range for having mild autism. We brought those results back to the doctor, and the doctor, oh, well, I know I know the result says this, but she has this other condition. So it could be the other condition is causing this. And it was multiple appointments of, you know, us going back and forth. Do this one more test. We'll see what that says. We we have to wait months to do this and then months to be able to see that doctor again. And so it was months, if not a year, fighting for her to get that diagnosis. At the last appointment prior to her receiving her diagnosis, I just told the doctor. I was like, we've been going around in circles for months. I said, Alexis is at the point where she will lose her services that she needs in order to, you know, work towards having a a life of any quality for her. She's going to lose them. I said, can we both agree that Alexis needs these? Would you agree that she needs to continue services? Oh, absolutely. Well, the only way she's gonna get it is if you put this in her chart, so put it in there. And I said, you're not lying. The data shows it. What does it matter if her impairment is due to one condition and not the other? If the data is saying it's there, it does it's the, you know, the chicken or the egg. What's causing it? It doesn't matter. If the end result is she's gonna get to continue these therapies, we need to make sure she gets it. So she put it in. Alexis to this day continues to receive her therapies. Having that diagnosis also up and down opened up a door for her to not only continue to receive speech occupational therapy and physical theory therapy, but also, ABA therapy or applied behavioral analysis therapy. And she receives thirty hours a week of that therapy at six hours a day, pretty much a full time job. And so that has allowed us to be able to get that. Our insurance now pays for it. It's, you know, pretty much no out of pocket for us at this point, which we wouldn't have been able to afford it. At one point, prior to insurance stepping in and paying for it, I got a bill, and it was $20,000 for, you know, a handful of sessions. It's it's crazy.
Brooke: But, yeah, it opened up the door for her to continue receiving those therapies, and she's made great progress since age 10 to now with daily intervention of those. And it also allowed us to qualify for the unique ability scholarship, which is a government funded program that gives parents, funding to be able to either put their special needs child in a private school that is more geared to them or to be able to homeschool and be able to provide the the resources and some financial support there. So it was through that that now, years later, we're homeschooling, and and Alexis is thriving.
Keith Vance: What would you I just wanna bite I just wanna bite these off in the small chunks.
Keith Vance: Someone who is in the middle of which you've made it through the other side with. Like, just I just remember hearing bits and pieces of this. I'm kinda, like, reliving it, and I'm re I'm feeling that anxiety that I had for you.
Keith Vance: So someone who's in the middle of it now is what's what is your recommendation or what is your
Keith Vance: your help? Mhmm. Because I remember it wasn't easy. It seems like every turn, there was something else that was saying, nope. Like, every turn, like, it's it felt like everything was against you, but you just you know what? You just bulldozed through it and kept going and, like, you made it through the other side. Is there any advocacy for that? Is there is it just you have to as a parent, is it you have to do it? Is there is there tools or entities there that help facilitate this stuff? Or, like, can someone go and say, hey. Here's what I got going on. Can I can I can you help me with this? Like Mhmm. If you got a good care team, if you get physicians who are willing to advocate for your child alongside you,
Brooke: Certainly, they're a good resource. We've had caseworkers or social workers kind of, you know, give us, hey. This is how you navigate this. Or let me like, I with filling out paperwork, I don't know how to fill out these forms. So I was able to get help from social workers that worked at Alexis's K. Hospital system. As far as, encouragement maybe to people that are going through it, I would say,
Brooke: don't let a broken system silence your child's voice. Like, you are your child's voice when you have a child who can't speak for themselves or who doesn't know how to communicate their needs. And don't ever let, you know, fine enough be good enough. Because that was another thing that we were told when Alexis was in the public education system and she was receiving therapies at school. School has a budget. And therapies to her are therapies that, you know, are not going to another kid and, you know, how are we we have limited resources. We're gonna have to hire more people, and that's not in the budget. And so it was a constant battle of them trying to take things from her and them saying, well, she's fine enough. You know? She doesn't need speech therapy. We can understand her. And I said, well, you're with her six, seven hours a day. People like, if a stranger cannot understand her, she's not able to, you know, come like, she needs her speech therapy. Just because you can doesn't mean someone who's meeting her for the first time can understand her. So don't ever let fine enough be good enough when you can fight for your child to have a chance at a life that is
Brooke: able to be, like, the most fulfilling.
Keith Vance: So And be prepared that there is no shortcut.
Brooke: There's no shortcut. Our system is set up in a way that they do not reward or give assistance for children who are doing well. The only way you get assistance or that you, get services for your child is by showcasing their failure. It is it gives it gives help to people who are failing, which is hard Mhmm. Because as a parent, you want to celebrate your child's victories and be, you know, proud of them and just scream like, like, I'm look at what she's doing. This is amazing. But when you're trying to get services, you have to broadcast her failures, her shortcomings, the missed milestones, the maladaptive behaviors. You have to put that on display. Wow. Look strangers in the eye and say, my 14 year old can't toilet independently. My 14 year old can't hold a pencil and write her own name. And sometimes you have to, have those conversations with your child in the room. Now that she is 14
Keith Vance: Oh, she got some awareness. She has awareness,
Brooke: but at age 13, 14 is when they start transitioning to now they get to be involved in their educational and medical decision making. Got it. So I'm having to say you know, I'm I'm having to put out there that my 14 year old who should be a ninth grade equivalent is reading on a second grade level, and her IQ is 65. And, you know, she has tantrums that involve, property destruction or self harm, and I'm having to, in front of her, say all of these things just to get the support to be able to continue to help her. So that's an aspect of all of this that I never expected, and it's heavy because I feel like I'm in a sense betraying the person that I love so much, and I'm trying to help you. And you have to hear me talk about you in this way. It's hard. I feel it.
Keith Vance: And if you need, there's tissues next to you. So
Keith Vance: we can move on to the next topic. Might as well make one, like, question or comment. So at the age that she is now, knowing that you have to have those conversations with her present, do you prep her for those conversations? Do you, like, afterwards, say, hey. Mommy had to say this, but, like, do you Mhmm. And what are those conversations like?
Brooke: She'll know going in. We're gonna have this conversation with your teacher, with your doctor, and we're just gonna tell them, you know, how you're doing and some things you still need help on. And she'll yeah. You're right. You're right. Like, she'll acknowledge the areas that she needs help. But it's I have I have to tell them about this thing that happened so that we can help you. Like, Amanda, her therapist that comes. I said, we love miss Amanda. We want miss Amanda to keep coming back. I need to be able to tell miss Amanda's boss why we need her to keep coming back. You still need you still need someone to work with you. Like, we're we we got we have to tell her. And then after, certainly, if I'm prompted to answer a question and I have to get very specific or maybe even graphic in ways that I don't necessarily want her to hear,
Brooke: I I mean, I'll have to say it, but then after in the car. Hey. Do you remember when we were in there and I had to say this? Yeah. How how did that make you feel? Oh, it made me feel, you know, sad. Well, I like, I'm so proud of you. Like, I know that that happened. I know when that happened, but as do you remember when that happened? And you and I talked about it after, and we said, you know, it's okay to have those feelings. It's okay to get upset. But, like and so I just bring her back to how did we handle it in that moment. And just because I'm talking about it now doesn't mean that I'm upset about it after the fact. Right. It was so and I don't really know how much of it all she understands or is able to comprehend.
Keith Vance: At least you're making sure. Yeah. Because I would I would get caught up in just getting her the help and muscle through Yeah. And not to have the awareness that she's digesting some of this Mhmm. And what are her feelings about it. So I'm glad that you're taking the time whether she remembers or not. Yeah. Hey, baby. It was I said some things. You good? Like, that's good. So this is, like, for someone who may be in your shoes, like, just trying to
Brooke: give information and help helpful helpful and pertinent information. I'm not telling this adult because I wanna tattle on you and get you in trouble. Right. That's not why we're doing it. We're telling them so we can get help.
Keith Vance: So that was that point. I said, hey. Can we just talk about what it's like navigating through that? Mhmm. Can we get back to some of her, diagnoses and the challenges with those because sounds like she has a bunch of them. The challenges with each one Yeah. How we navigate through each one, which ones can she get better in, which ones are this is the best it's gonna be, and, like, we accept it. Like, it's just, like, take each one and let's just kinda, like, roll through it, and how does it apply in real life? Okay.
Brooke: So her primary diagnosis, the seventeen q twelve, it's it's cellular. It's never gonna go away. It's not like we can go in and write that missing sentence. That book is printed. It's done. With that, her cognitive impairments, it's just going to it is what it is. We've been told for a few years now her maximum level of comprehension is probably going to be that of around a sixth grader, and that seems to be about where we're at now. It's been that way for a few years. I think that that probably just is what it is, but you know what? As long as she can, can, like, dress herself, feed herself, she knows how to work a phone. Like, there there are functional skills that we're teaching her, not just textbooks. So that's kind of where we've transitioned Good. At this point. Now that she's 14, it's okay. This is your capacity for education. We're gonna switch now towards life skills and make sure that you can have a functional independence. Her congenital hydronephrosis hydronephrosis is,
Keith Vance: enlargement or swelling of her kidneys. Before we jump to that Mhmm. The first one you just talked about, it was cognitive or Cognitive impairment. Cognitive impairment about the sixth about the sixth grader. I remember when she was in elementary school, and that's why I think we're homeschooling her because there were times on the playground. And I'm wrong, just say no. That never happened. But I'm having these memories. There's times on the playground where she thought play was happening, and she was being bullied, but she didn't have the she didn't she didn't wasn't able to tell the difference.
Keith Vance: So being a present parent and Mhmm. You picked up on that and and didn't just accept status quo. Okay. There's gotta be a solution here. But now that she is 14 and as she gets older and still has the the cognizance of a sixth grader, I can see how that could be potentially dangerous for someone to be taken advantage of. So I'm just as a dad, you know, I I automatically go to these things. So are you and Michael having conversations about Mhmm. Hey. Would she go somewhere, like like, aware that she's Mhmm. Protected.
Brooke: Yeah. Alexis, because of her condition, is considered a high risk population. That's even what her you know, her doctors will refer to her as she's high risk for being taken advantage of.
Brooke: She doesn't think because she is so sweet and so kind, she doesn't think that anybody has the capability of being mean. She thinks that, you know, everybody just has her best interest in mind. I would never do that to somebody, so somebody wouldn't do it to me. Which is why I like being around her so much. She's a blessing. She's the she's quick to give compliments. Yes. She is even funny ones. Yeah. She's just full of joy. But, yeah, it's definitely she doesn't understand when she's being taken advantage of. She she's she knows in in at least theory stranger danger,
Brooke: But I don't know in practicality if that would you know, how that would play out. And that was a concern when she was on the school campus. She was not able to navigate campus independently. There were fears that she's not she at the time, she wasn't able to go up and down stairs independently, so there was a safety concern. She would get lost on campus. She had to go to the nurses' station every day for medicine, and she was not allowed to walk by herself because she would get distracted and get lost. But, also, if there was, another parent, a maintenance person, somebody visiting, and she's by herself walking to that nurses' station and there is an unsafe adult who does not have her best interest in mind, I don't think that she would have the sense to not go with that person or have the sense to say, I need to tell somebody if something happened. Things have happened with other children, and I find out about it later. And I say, why didn't you tell me? I don't know. Like, she doesn't know what when she needs to tell an adult that something happened, when something is not okay, when something happened to her that, you know, needs to be addressed by an authority figure. So that was scary too. Not only that it could happen, but that she doesn't even know Yeah. Someone did this to me, and it's not okay.
Brooke: Yeah. So
Keith Vance: That's why I think with people with, like, this type of disability, it's important to just get a daily download, just have a conversation Mhmm. Just to have a and it may not sound strange to her, but if you pick up on something Yeah. Maybe there's something there and make a phone call. Or Yeah. And I know you have with teachers, like, hey. What happened to Alexa's glasses? Or Mhmm. Where is this bruise at? Or Mhmm. What? Like, have some awareness. That's some I'm trying to put myself in your shoes because we're busy. We're working. We're and then you have this on top of that. This feels like and you just said it. This is a a job in and of itself. Mhmm. Like, full time eyes on. Mhmm. Yeah. And that can be heavy. Heavy?
Brooke: Yeah. It's a constant state of constant state of not fight or flight, but just always having to be engaged because the second I drop the ball, it's potentially her safety or her health at risk. And so you have to be within the doctor's offices. You have to be that squeaky wheel or that difficult parent with teachers or constantly pushing because if it's not you, no one else cares as much as you and your child will fall through the cracks. Yeah. One more question for you in this wheelhouse. And as things come to my mind, we'll just Mhmm. Is there a support group for
Keith Vance: moms and dads like you that we can get together and collaborate? Is there a support group that you can just have a conversation with somebody who actually knows what you're feeling like and knows what it's like? With
Brooke: seventeen q twelve specifically, there is not anything local. I have found two groups online because it is so rare. And even if you find another family who has somebody in their circle with seventeen q twelve, their symptoms could be completely different. It's such a spectrum. But for special needs parents, there is, for us and Cape Coral, there's family initiative, which is a, a autism and advocacy resource center. They'll have support groups. They have playgroups for the kids where she can get together with peers. For me, I found through one of our our friends, Alexis now does cheer abilities. So she's on a cheerleading team with other children that have her medal. Yeah. That have delays. And so even though those children may have other diagnoses, the parents all know the struggles of the system. So that's been good for me. Got it. So while they're cheering, the parents are around the same room and just have them come out. Therapist do you see? What doctor did you see? How did you get that referral? Yeah. K. It's it's good.
Brooke: Going back to her cognitive impairment and the exhaustion or just engagement that parents need to have. Alexis, even walking through a parking lot or through a store is potentially, like, at risk. Like, if parking lots in particular, she's looking around, looking at the birds and the butterflies, and there's cars coming. If I'm not holding her hand, she can wander off. If we're in the store and she gets separated from me, do I know that she'll know where to go or what to do? Or, you know, how would you find me? And so that's something that we've started doing is, years ago, we started it. I'd be driving in a car, and we're approaching a crosswalk. Hey. What is that? Do you see those lines on the ground? What is that? That's a crosswalk. What happens in a crosswalk? The kids walk to school. And I said, so when the kids are walking, what do they need to be doing with their eyes looking for cars? Like, just, like, rehearsing so that it becomes the more she says it or the more that she's aware of her environment Got it. It'll be something that just comes second nature to her. Got it. Over walking in the store, and I'll say, I have to go to the bathroom. Where's the bathroom? And she'll like, first time she looked at me funny, but I'm like, where's the bathroom? And so she's looking looking for the sign. Or, I'm ready to check out. Where do we go? And she helps me find the checkout. I say, if if you couldn't find me, what would you do? I would ask an adult. Well, who's the safe adult in the store? Would you go up to just anybody, or is there a safe adult? I would go to the cashier. So Oh, good. Just because I mean, those things that most people just kind of pick up by themselves are things that she has to work to work to figure out.
Michael: Got it. So
Keith Vance: I cut you off. You were gonna go through a second. Through her diagnosis.
Brooke: Her hydronephrosis, her swelling of the kidneys.
Brooke: Alexis' kidneys do your kidney filters urine through your bladder. So you drink water, you intake fluids, your body filters it, kidney filters it out, passes the urine to the bladder, you expel it from your body. Alexis' kidneys do not filter all of her urine to her bladder. It retains some of it. Typically, that'll happen when you have, like, a blockage or a kidney stone. It it it's keeping it from filtering out. We've had multiple ultrasounds, renal scans. Alexis doesn't have a blockage. All of her anatomy is normal. There's no
Keith Vance: reason why it should I remember this because I was remembering, like, we thought that maybe she was so excited to go back to play. She just wasn't peeing the whole way out. So we were, like, trying to free I remember this. Yeah. Yeah.
Brooke: So her kidneys don't drain all of the way. And the more volume that they hold and the longer she holds it, the more strain it puts on the kidney, you have risk for eventually renal failure if that if that is left, unaddressed. So she currently has kidney ultrasounds done every twelve months. Prior to that, it was every six months with kidney function labs every six months where now it's been stable for long enough that we are in the one month or the one year phase. I might have said months. So she has to get routine blood work, routine imaging done. She has a nephrologist that we see who works in tandem with her urologist, which, monitors her neurogenic bladder. So not only are her kidneys not filtering the urine through her bladder entirely, her bladder doesn't know when it's full. And it doesn't trigger to her brain, I'm full. I need to go to the bathroom. So she's holding it in her bladder as well, which is also not great. It can she has daytime, you know, accidents, and it creates pressure in there that's just not healthy long term. So she's on medication for that. She is on a time boarding schedule every ninety minutes, two hours. Go to the bathroom. Go to the bathroom even if you don't have to go because her body doesn't know it has to go. And she's on that routine She's on that routine knows it's been two hours. I gotta go. Good. And that was another thing that we dealt with with the school is trusting your school to make sure that they're prompting her. My child does not know when she has to go to the bathroom. And if she holds it, she's at risk for renal failure. So you I'm trusting you to make sure you're telling her because she won't say, hey, teacher. I have to go. So time devoiding and monitoring her fluid intake. So she should be intaking about 64 ounces of fluid to make sure everything's flushing, everything is, you know, maintaining. And that was another thing. We we had logs. We would track the amount of ounces of water she would drink and track the number of times she went to the bathroom, track her urine output. We would have to get a hat and actually measure how much urine came out. And so that now that she's stable and we've been cleared to go to just twelve month follow ups just for observation. It's been easier, but it was difficult for for a while. That was part of the reason why we took her out of school was because they were not following through on that. It was in her IEP, her individualized education program, that she was to be prompted to go to the restroom. She was allowed to carry a water bottle with her. She didn't have to ask to go to the bathroom. She could just go whenever she wanted, that someone would make sure they were going with her, and those things were not happening. And we had a follow-up appointment with her nephrologist. We did her scan, and her kidney had been showing progress. And then it enlarged, and actually both kidneys were enlarged, whereas previously, it was just one. So we're thinking what's different, what's changed. We, as our parents, have been doing our job. We met with the school. Oh, we didn't know that. Meanwhile, she's at school six hours a day Mhmm. And it's not happening. It's not happening. And she's coming home wet, wetting herself and having to go to the nurses' station and get, you know, someone else's clothes. And but at the time, her aide that she had at school had retired, and they were waiting for a replacement to come. It also fell in line with our IEP reevaluation in which that's the time for them to pull services and for them to say, she's fine enough. She's made progress. She doesn't need this. And they were trying to justify not hiring a replacement aid, but it was that aide who prompted her, took her to the bathroom, made sure that she was going and communicated with us. So that wasn't happening during that time, and Alexis' condition worsened as a result of it. So we had a an intense meeting with the school in which I was like, this is beyond just, me being upset with her. You know, the educational shortcomings were to the point where I'm gonna come after the district because you're responsible for my child's medical condition worsening. Like, so they hired a new para. She got her for a bit, but, ultimately, we took her out of the system.
Keith Vance: I'm looking because I'm trying to process this because
Keith Vance: you're doing what you're supposed to do. You go back for the follow-up and she's retrogressed and has come to find out that the ones that are supposed to Mhmm. And the answer was And I have to know. And I have to work with these people. Mhmm. I just wanna go there and burn the place down. Mhmm. But if I burn the place down, I can't work with them. Mhmm. And trying to find that balance where I can, like, get them to do what I need them to do. Because listen, if you come in hard on somebody, they could be like, screw you. Like Mhmm. Oh, here she comes again. Like so you gotta work with these people, but also you're they have to do their job.
Brooke: And with Alexis' IEP, it is a legally binding agreement that they are required to follow. Anything in there, any services that are in there that says she gets, you are required by law to provide them, and they were not following through. So we had basis to technically, we could have pursued legal action for them failing to provide those services to a special needs child who, as a result, suffered a medical complication because of it.
Keith Vance: So, again, I think we're I I think I'm I'm seeing where this conversation is going. Its parents, caretakers, advocate for your for your own children. Don't trust that somebody else is is doing their don't trust that somebody on the other side of the equation is doing what we're supposed to do. And not even because they're being malicious. No. Because they've got a room full of 30 kids to watch, and mine needs extra attention. Like Yeah. I understand, and I'm sympathetic.
Brooke: But at the end of the day, it's like my kids' life at stake. Ask a question, follow-up,
Keith Vance: and just don't just don't assume that, well, they're supposed to and it's legally binding that it's happening because it might not be. So just just some practical stuff. Yeah. Right? You drop them off, you go to work, think everything's going good. It might not be. Might not be. It's rough. And I have a child who can't tell me
Brooke: who can't tell me Mhmm. Hey, my helper wasn't at school today. Or I, you know, I had four accidents today. I have to find out by opening her bag and taking out all of the soiled clothes, and nobody told me.
Keith Vance: Yeah. I think, you know, scripture says that we won't have burdens placed on us that we can't bear. Like, I think you're a good burden bearer. Listen to you talk right now, and I know this has been some months and years out. Like, right now, I just think I would burn the place down. I think that'd be more than what I could bear. I
Brooke: had plenty of conversations with mom leaving this leaving this school just screaming into the phone at mom about why I'm asking for just the bare minimum take my kid to the bathroom, like, to maintain her dignity elite. Like, she's sitting and pee. Like, you're you're like, well, she didn't say anything. She can't say anything. She doesn't know. She can't feel down there. Like Wow. And I'm trusting you to make sure that she gets the same amount of, you know, respect and dignity as these other kids. Like, yeah. There was there were plenty of times that I lost my cool in those meetings or had to get in a a doctor or a teacher's face and just say, like, can you just listen to yourself? Can we just have common sense? Like, why is this something we're fighting about? Like, I'm asking you to every ninety minutes. Hey, Alexis. Go to the bathroom. Why is this something I have to fight for you to write into her plan? Why isn't that something you're just doing? Like
Keith Vance: How many more of these do we have to go through? We've hit two.
Brooke: Oh, boy. Where did I well, we hit three. Her neurogenic bladder, congenital hydronephrosis. We hit three. Yeah. We hit three. Her autism, I touched on that. I touched on that earlier. ABA has been really good for Alexis in regards to not only her cognitive impairment, but her autism. It's interesting hearing some of the lessons they have with her, hearing them try to explain to Alexis what sarcasm is, things that people just Take for granted. Take you just it is what it is. Like Yeah. But for her, she's so literal that it it's just right over her head, or she just doesn't understand. I remember one time, not the sarcasm, but I remember one time I asked Alexis, how did you sleep last night? And she just looked at me, and I was like, did you hear me? How did you sleep last night? And she went like this. Oh. Like, she didn't Got it. And I was like, oh, I'm sorry. Like, I I'm asking the question wrong. Did you sleep good? Were you able to sleep? And she was like, oh, yeah. I slept good. Wow. But she's so well, she's able to communicate. She's verbal. She's not able to communicate effectively. Right. Facial expressions, tone, sarcasm. It's all like a foreign language to her where she's having to actually break it down and teach it to her what it means. Well, this kid is saying, oh, thanks a lot, Alexis. That kid's saying thank you. Right. Does it really sound like he's saying thank you? Like, what You're you're teaching that to her. We're having to teach it to her. So that's been good. They work a lot with her on her life skills. So right now, she's not able to bathe independently, feed herself, brush her teeth, things like that. They work on, again, things 14 year olds just learn how to do over time.
Keith Vance: So that's something that they do. She's working on using the microwave, the stove. They're practicing all of that. It's good. I asked her. I was like because she was talking about school. Was like, what are you gonna do today? I was like, are you gonna do some dishes? She looked at me. I'm like, are you gonna put your food in the microwave? What microwave? This one? So I was like, okay. I must've saying it. Must be saying it wrong, but, like, She anyway
Brooke: she's funny. Yeah. But, yeah, not only food preparation, but now we're at the point where, okay, you know how to put your food in a bowl and microwave it. We're gonna read the directions on the back. How long does it go in? I'm not gonna tell you. You need to find out. Uh-huh. We're gonna check the expiration date on food before you eat it to make sure it's still good. And then, alright. We use the last one. Let's make a grocery list. So we've gone to the grocery store a couple times now with our therapist, and they've shopped, that's been good.
Keith Vance: In my mind, I have two or three thoughts, so I'm gonna wind it down. Mhmm. But, just before I do, any questions that I didn't ask you that we need to talk about? Anything that you know now that you wish you would have known then that you could help somebody else with? Just try to, like is there anything that, man, this was this this is this I wish I would have known this. And, Michael, you can chime in too. Like
Brooke: I think that if I could go back, I would advocate for all of her specialists to talk to each other. Because at one point, she had twelve, thirteen different specialists Are you kidding me? Who all just look at their one part of the body. Got it. And they don't think about how maybe their recommendation or how it affects the whole child. And you as a parent, you see it. You see your child as a whole, but they see their one part. And so especially with us, we have one major hospital system here. They're all in the same network being able to say, you know what? I I want you to call this doctor and ask him. Okay. You're putting her on this medication for her kidneys. How is it gonna affect her bladder or her pancreas? Or, like, so advocating for for that because they don't automatically do it, I've learned. They don't automatically do it. So that would be one is to advocate for your specialists to talk to each other and consult each other because,
Keith Vance: again, they just know their part. They just know their their their specialization. Mhmm. Yeah. They see the one part, not the whole body or the whole situation.
Brooke: And, also, Alexis' condition is so rare. She might be the only kid with 17 q 12 that they ever see in their entire career. Wow. So while they might make a recommendation or might know how they might treat a kidney in a typical child Mhmm. Being able to okay. Well, she has this, so can we, like, keep that in mind Is you know, with her, hip surgery, her orthopedics.
Keith Vance: Hold on a minute. Go ahead. I'm in construction. The parent almost has to be the general contractor. Mhmm. They're using all these subcontractors. You gotta tell you gotta tell them how to build the house Mhmm. In the appropriate timeline. Mhmm. The the subs that can be there at the same time, the ones that can't be, that's you. You're the g c you're the g c. Mhmm. You you gotta build this thing. You gotta make sure everybody's coordinated. Mhmm. Nobody else is gonna do it for you. You gotta do it. You gotta do your homework. There's nobody else gonna do your homework for you. There's nobody else gonna get this done. It's gonna get done because you gotta do it. And at times, you have to educate her doctors on her condition. Wow. Because, again, she might be the only one they ever see. Wow. And so it's so rare. There's not even that many clinical trials. There's only so much they can, you know, look up online.
Brooke: So you're educating them on her condition as well. And even though
Keith Vance: a doctor or a specialist may know their field much better than me and be smarter than me, Just like some of my subs might know, like, be intellectually smarter than me. I'm the GC. Like Mhmm. And and not to feel inferior because they have a doctor before their name. This is my daughter. Nobody knows her better than me. Mhmm. This is where we're gonna steer this ship. Mhmm. And to not to not not speak up because of well, they have all these Right. Letters after their name and to feel inferior. I think a lot of people would would potentially feel like, well, he's the doctor. He didn't Mhmm. He he he should know. No. He he may not know. He may know more than you Right. But nobody knows your daughter better than you. Right. Give him the tools to do his job. Right. Speak up. Give him all the information. Mhmm. Got it. I had that kind of realization when
Brooke: Alexis was going in for assistagram, which is I will never make her do it again. I will never put her through it again. It was horrific, and we learned nothing, and it was a pointless procedure now being on the other side of it. But they were investigating why. Why is she not going to the bathroom? Why is she holding her urine? Why are things not happening? There must be a blockage. Her she must have, an anomaly in her anatomy. That is her anatomy must not be right because that's part it can be 17 part of 17 q 12 as well as having, underdeveloped genitalia. And so which is not her case, but it was just throw it out at a wall and see what sticks. And so we went to have this procedure done. And prior to even doing it, the urologist is telling me, oh, well, when, you know, when she transitions to self cathing at home because that's the only way she'll be able to go to the bathroom. She'll have to learn how to cath herself. And I was like, my child can't even hold a pencil. You think she's gonna be able to put a catheter in herself? Oh, well, kids are resilient. Kids will surprise you. No. Like, no. And isn't the point of the test we're doing to be able to determine if that's something we even need to do? Why are you talking to her about it like it it's already gonna happen? Let's see what the test says first. Oh, okay. Okay. We do the test. Everything's normal. Everything functions normal. All pressures are normal. She was able like, her bladder fills to capacity. It was able to empty. Her pressures are normal. She doesn't need to cath. But had we not pushed back, like, that was the recommendation. Teach her to cath herself at home. Wow. She'll surprise you. She'll be able to do it.
Alexis: No. It's not funny. It's not funny. Yeah.
Keith Vance: Michael, you sitting over there quiet, and you don't make any comments? Mean, you don't have to if you're not feeling it.
Michael: It's not that I'm not feeling it. I just know that
Alexis: in terms of this conversation and going into detail, Brooke is definitely the most, qualified. I would be the
Michael: 17 q 12 for dummies version of what Brooke's going through. What I do know is that
Alexis: God definitely put Brooke in my life for a reason because these these tests and these appointments that she has talked about and touched on,
Michael: a lot of them,
Alexis: like the one she just talked about, like the horrific ones,
Michael: I as a dad, as Alexis' dad, like, my response would be just to scoop scoop my baby up and leave. Mhmm. And I'm not saying that Brooke didn't wanna do that, but I thank god that Brooke has been here for a lot of those things because I don't know how I would have gotten through any of this, let alone all of it.
Brooke: Do you remember, Michael, that procedure they wanted to do it without any sedation? Yes. They wanted to do it without any sedation. We scheduled it in the sedation unit because we knew it was gonna be hard, and we knew that she was not gonna tolerate it well. And so we scheduled it in the sedation unit, and they were short staffed that day. And so they tried to they tried to gaslight us and saying, oh, it was never supposed to be with sedation. It wasn't scheduled that way. And I looked up, and it says sedation unit on the wall. And I said, well, then why are we here? Why are we here? And so they will let me go check the orders, and then they come back. And they say, well, when was the last time she ate or drank anything? And I said she had juice this morning. Well, we can't do it because you gave her you fed her. And I said, no. I said, I called last night and asked if there were any precautions, and such and such nurse at such and such time told me no. Go check your chart. I was like, your calls are recorded. Go check it.
Keith Vance: Okay. Pause. Go ahead. Go check your calls. They're recorded. You know that Mhmm. Because you've been prepared. God prepared you not to be a nurse. He preferred you for something bigger, better. Mhmm. That training that you had?
Brooke: So that I could be her voice. So that you could be her voice. So they go. They come back. Okay. Well, okay. We can do it. So the issue was just you you didn't want to. It was more work for you. You were short staffed. You were gonna have to pull staff from somewhere else to be there. But and even with the sedation, it was it was hard, and I won't ever do it again. Good to know. Don't wanna ever do it again. Well,
Keith Vance: a couple thoughts that are you guys good, Michael? Yeah. No. I'm good. Brooke, you good? Yeah. A couple thoughts I had just, like, reliving this.
Keith Vance: Dad, I'm interested in this guy, and I look him up. And then, by the way, he's got a a daughter. I'm thinking, you know, it's hard enough. It's hard enough just working on the two of you. You gotta work on the two of you, a baby mama, a special needs child, and, like, you're my baby. You know, I'm thinking that's a lot. Thinking I'm that's a lot. Mhmm.
Keith Vance: I'm glad God gave me the grace just to bring my walls down and, like, families look different. God God does his thing and God puts people together for a purpose and, like, to be this far out and see that she needed you. But you know what? You needed her. Mhmm.
Alexis: Mhmm.
Keith Vance: I think You needed her, and I needed her because
Keith Vance: that girl has a high pain tolerance. Mhmm. I remember one time she was here. She spent the night and her Her ear infection. Her hair was, like, crusted to the side of her head. And I was like, hey, baby. What happened? Get some food in your hair. And I pulled it back and had cussed out. And I felt bad because the night before she kept in, She couldn't hear. She couldn't hear, but she couldn't tell me that her ear hurt. Mhmm. But
Keith Vance: based on how she interacts, your ears hurting. I think she got pus coming up her ear, but it didn't affect her Mm-mm. Her her joy, her happiness, her just her Her spirit. Yeah. So she's she's been good for me because just help me with my perspective. When I think life is hard and Alexis comes over, no. This is cake. This is this is Mhmm. Light work. Light work. And, there's these there's these broad principles, you know, that God that God implements, you know,
Keith Vance: gravity. What goes up must come down. But there's also these little things that God does just because he makes people special. He does these little anomalies, these little people that are different, that are gifts. You get this person that is suffering more than I will ever know or understand, limited in what they can their productivity Mhmm. And what they're gonna be, But unique unique. And these little these little gifts to help us regain our perspective and to be grateful and thankful. So that's what she's been that's what she's been to me. So any thoughts once you close this thing down? Oh,
Brooke: no. Just that I mean, echoing what you said about her joy and her sweet spirit. And even though she's been, tested more than I think most adults have, poked and prodded in all of her appointments and that she still, like, looks for the good in those. We're going to the lab, she knows I'm I'm gonna get poked, and it's gonna hurt. But I'm brave, and I can do it. And my doctors need my blood to keep me health. Being able to, I guess, rationalize it or whatever she tells herself to go through some of those harder things and that she trusts us, that we're gonna protect her. And my my parents are doing this because they love me, and I'm they're asking me to do something hard, but that she trusts us. She's never, like, never pushed back. She you know, I tell her, we're gonna do something today, and it's gonna be scary or it's gonna be harder. It it might hurt, but that she trusts us. And if I get emotional
Brooke: watching her have to undergo something that she holds my hand and says, it's okay, mom. It's okay. That's what I'm telling you about. That she's worried about me. Yeah. She's worried about me because she sees I'm upset. She has empathy. Empathy. She has empathy for you. Yeah. She's a special girl.
Keith Vance: Well, thank you, Brooke. I know, I didn't trick you. I know I know I know the I know we said the focus was beyond it was gonna be on Alexis. Mhmm. But I trust that the conversation went where it was supposed to go, and it's been good just reminiscent of the the journey with her. Yeah. And thank you for doing this. I know you're a little apprehensive. He told Michael, I know you did I know dad isn't doing edits, but Mhmm. You're gonna do some edits with me. That's right. No. You did great.
Brooke: You did great. Another example of what I do for her.
Keith Vance: Love you both. I love you too. Love you too.
Intro: Still strong. Watch me ride my way. Slow growth turns into real change. I found joy in the simple days. And on his working faith, still strong.