Brittany Raising Sawyer and Zion

In this episode, we talked to Brittany Lagarde about raising her daughter Sawyer who has Sanfilippo syndrome and her son Zion who has autism.  

Follow Brittany on Instagram @happylagardeless

Check out Brittany's husband Sam's book Zion the Lion HERE!

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Transcript

Deonna: Hey y'all, welcome back to Raising Disabled. So today, we're super excited. We have Brittany Lagarde with us. She is the mom of two disabled children. And I was looking her up last night in all of her videos and everything and It's so relatable. Like I instantly was thinking, Oh my gosh, I've done that. Or I've felt that way. Or, I've had to do CPR on my kid. Cool. Like we have the same life. This is fun. But she has quite the following on social media with almost 600, 000 people watching what she does with her kids every day. And so we're so thankful that you're here today, Brittany. 

Brittany: Thank you so much for having me. I'm so excited to chat with people that have a similar experience, life experience, and understanding. 

Deonna: Yeah, so first, let's just hear about your family. Tell us all about your family, where you live, your kids, everything. 

Brittany: Yeah, so my husband and I have been married for almost 14 years. We are from Wisconsin, a small town in Wisconsin, and we moved to Minnesota. six years ago now. And we moved here to get better care for our daughter and our son. And so we live in the Twin Cities. And I have a daughter, Sawyer, who just turned 11. And then a son, Zion, who, is eight years old. And Zion is autistic. And my daughter Sawyer has Sanfilippo syndrome, which is also a form of childhood dementia. This year she just got a trach as well. 

Rhandyl: Welcome to the trach mom life. Yeah. Yeah. Trach care. Yeah. Trach everything. 

Brittany: It is such a trach different. world. A lot of kids with her disease Sanfilippo syndrome, literally none of them with her disease has have or had to have a trach. So it's definitely another kind of unexpected thing that you're walking through as a disabled mom.

So yeah, we weren't prepared for it, but basically my daughter was diagnosed with Sanfilippo syndrome when she was two and a half. At that time, I was pregnant with Zion. I was six months pregnant and the reason why we pursued that diagnosis was because she had unknown respiratory issues at birth. 

 I had a completely normal pregnancy, completely normal birth. And then three hours after she was born, she was airlifted to the Twin Cities here to Children's Hospital and stayed in the NICU for a month. And she couldn't get off of oxygen. Yeah, it was crazy. She, needed oxygen and so they basically discharged us after a month and they're like, we're gonna send you home on oxygen. So she had to come home on oxygen and she stayed on O2 24 hours a day. For a month 

Brittany: and then we went back to the doctor just for a checkup and the pulmonologist was like, let's see if she can try room air just like in the clinic room, like in the hospital and I was like, okay, here we go. Ready for the desat. Yeah, so and I don't even know if they had a pulse ox on or anything like they were. They did. Okay. But it was only for 30 minutes. And I was like, okay. So then they're like, you know what? She's good to go after 30 minutes. I'm like, can we take some oxygen tanks home? Because like early, yeah. 

And she was though, she was fine. She just, yeah, it was really bizarre. She just kept having these reoccurring respiratory issues. She landed in the hospital one other time for low O2 saturation but got some steroids and was fine. But that didn't sit right with me, not knowing why she couldn't breathe when she was born the first couple months of her life.

That is weird. Yeah. Yeah. So I just was that annoying mom that was like, something doesn't feel right. , I went to multiple specialists, like I was thinking cystic fibrosis. I was thinking, just like all these different things. And saw a chromosome doctor all these specialists that literally were like, She's fine now I don't know why you're living in the past, it's fine, it was just a fluke thing, but we knew we wanted another kid and I was terrified to go through that again, and so I was like, can we please , figure this out, 

I went back to her pulmonologist after we did all these tests, insurance approved, all of these tests, and the pulmonologist was like, Hey, I'm thinking it might be a genetic lung disorder. He was doing some research on the side. I don't know. Her symptoms sound like that. Let's test for that. Yeah. So I was like, okay, sure. What's another test, and so we tried to test for that, but insurance wouldn't approve it. So I took him to court and sat in front of a judge. Oh, snap. Yeah, sat in front of a judge. Look at you. I just want answers, love it. I don't do well. , unknown things. 

Rhandyl: Yeah, you were advocating like a boss. That's awesome. 

Brittany: And even, I will say that. Yeah, not to throw my husband under the bus, but he's Brittany let's move on. And I was just like, I can't not know. Anyways, the judge was like, Yeah, I don't think it's necessary either. I'm like, oh my gosh. Then our pulmonologist was like, The only thing I can really do at this point is refer you to a geneticist and maybe they can order the test. And insurance could approve it that way or something.

So I'm thinking, okay, this is just another specialist, red tape. You got to jump through whatever. So we we go to the appointment, I said, I want this test done. How do we get it? Make it happen, and he was like, I don't think I want to do that test. I was so annoyed. I remember just being like, oh my gosh, I was so done. That's hard. 

Rhandyl: Wait, the geneticist said this? 

Brittany: Yeah, he did not want to do this test. He looked at, I think he took one look at Sawyer and he knew from her facial features, he knew that she had a metabolic disorder. Because if you Google Sanfilippo syndrome kids, You will see that they could all be related, just their coarse facial features dark hair, dark eyebrows their forehead, their nose. They look like siblings, every single one of them. And so I think he saw her and was like, Yeah, I think she might have a metabolic disease. Of course, he didn't tell us that.

But instead of just jumping to that lung disorder test that we wanted done, he was like, he worded it in a way where he goes, I think I just want to , complete her file. I want to do a urine test I want to do, a blood test, all these different things. And I'm just like, okay we've had all this done. I don't know what you could possibly be looking for, but whatever. 

And keep in mind, I'm six months pregnant at the time. With Zion, because we had a Yeah, we had a chromosome doctor. I forget what they're called, but basically they were like, Oh no, this is nothing genetic. You don't have to worry. Everything's fine there, and so we decided okay, we're going to get pregnant again, and so yeah, then we. did all this stuff that this geneticist wanted to do and then he calls me and he's like, So, um, I want you to come in for some test results. And they didn't even really tell us what tests we were running. Actually. I just thought we were completing her file. Like he was just getting to know her maybe. And Look into some of her genes. I don't know. He's like, yeah, we want you to come in and talk about some test results.

And I was just like, I'm sorry, but we live two hours away. You need to just tell me right now what you found. I was freaking out and I'll never forget it. I worked at a salon at the time. I was a receptionist and it was right before we opened and I was at work and I'm just hormonal and pregnant. And I'm like, you need to tell me right now what is going on. And so he told me Sawyer has Sanfilippo syndrome. And basically it's a metabolic disorder. She doesn't have an enzyme in the cell to break down this toxic waste that you and I all have. And So over time it builds up, it causes severe brain damage, it , wreaks havoc on the entire body basically causes them to lose mobility, sleep issues, neurological issues eating issues , , 

I I didn't even really absorb any of it. The only thing that I really heard in that is he was also like, this is a genetic thing. So there is a one in four chance that Zion or that our baby in my stomach could have it as well because In order to have Sanfilippo, the mom and dad both have to be carriers. And you of course don't know, we carry all sorts of different things as humans, we have no idea.

And so I'm like this baby, of course, they can't do any sort of test because I'm already too far along. I think now they can. That's hard. Yeah, I think now they can. There's been a lot of breakthrough in research and, finding out early. And I think you can find it on an amniocyte.

What's that called? Yeah. Yeah. And yeah. 

Deonna: So I'm not even going to try to say that word. 

Brittany: So I think, that you can do that now, but yeah, of course there was nothing. This was, six months into my pregnancy and I gave birth to Zion a couple months later. Got him tested two days after he was born. Yeah, of course. He had a completely normal birth, easy, and he was fine. And so he is not affected by it thank God. But we don't know if he's a carrier. He could be a carrier, which means if he marries someone and they're also a carrier, there's a 1 in 4 chance that this could happen to you. , 

Rhandyl: This is putting me back into the memories. Yeah. We, my daughter was originally diagnosed with a genetic disorder. That has since been disregarded. That's a long story, but we were told for a long time that cause my husband and I were carriers for this specific gene that could cause this syndrome that they thought she had. And luckily. I was not pregnant with a second child at the time of finding this out, but I do remember all the stress and not wanting to have any children for years after that and then getting all the testing done and then finding out that it wasn't necessarily a one in four chance, but just the decision to get tested. Try for another child was super hard but yeah, I can only imagine The stress that you were under Being pregnant with your second child and then finding this out Wow, I 

Brittany: blocked it out. I don't even remember like, the person I was, you know what I mean? I don't even know. You just and that's where a lot of people are like, oh my gosh, you're so strong and it's like, you don't have a choice. You just have a choice, yeah. I mean, like, If this happened to anyone, you just fumble through the motions of survival mode, basically, 

Rhandyl: yeah. Yeah. Brittany how old was Sawyer when you found out this particular diagnosis? Two and a half. Her official metabolic, two and a half. Okay. . Obviously, you were six months pregnant when you found this out, but can you walk us through those first few moments or days after receiving the actual diagnosis? I know it said it was blurry in the beginning, but what it felt like? 

Brittany: Yeah. Yeah. The It's a terminal illness. So basically, all of the things that it's hard as a parent to not have expectations for your kids, right? But you invent before you have kids, or at least I did before I had kids, or, as I was pregnant, I would just envision like, Oh, my gosh what are they gonna do? What are they gonna be like? What are they gonna love? What are they? What are their interests? going to be are they going to be in sports? , what kind of friends are they going to? I mean, I just like, I envisioned all this stuff and was so excited. Especially ever since I found out that I was having a girl, cause my mom and I were very close and we love shopping and we love all the girly stuff. And so I was like, Oh my gosh, I'm so excited to do all this stuff with my daughter. I couldn't believe I was having a girl. It was like a dream come true to me. 

And then, we get this diagnosis and it's you have to just kind of, like, let that go, let those expectations go. Yeah, grieve it. And then also, what's so hard about it is you also have to be , So present in the moment and make her life count and make things special and meet her where she's at. Like at that time, she loved Disney princesses. She loved ice cream. She loved swimming. , she was the happiest kid. And the hard part about Sanfilippo syndrome is they can't. Yeah. They develop like a typical child like a typical toddler would they meet Sawyer met most of her milestone.

She was in speech birth to three. She had some services that she qualified for. We just thought it was because she spent the first couple of months in the NICU and having some, medical kind of stuff going on. But she was , talking, dancing, walking around she met all of her milestones, basically, and was this typical child, this vibrant child, , but the doctor is oh, she's gonna die her life expectancy is mid to late teens, and you can't wrap your head around it we would have ice cream for breakfast, we would go swimming whenever we could, we would do all of her favorite things, we went on her Make A Wish trip to Disney and she got to eat lunch with Disney princesses and just making memories is what we focused on. 

And , it was a hard walk in between grieving and trying not to numb the pain, and trying not to run away from the pain, and then also Giving her a happy life because you're so hurt, but you still have to show up for your child, and you still have to be this like, make the best and so that's just what we did. But then simultaneously, I think the focus that I had as at this time, there were two clinical trials for Sanfilippo for Sawyer's type that were going on. And one I think was full and so there was essentially only one that was recruiting and, I made it my mission and focused on getting her into that trial 

because I was just like, There's nothing else I can do. This was something I could do, when you get a terminal illness diagnosis, there's nothing you can do, and so you try to, yeah, you're searching for any. Yeah. And there was this clinical trial down in Columbus, Ohio, and I was like, we have to get her in this. It's a gene therapy. Basically, they didn't know if it was a cure or not. But . Basically there was some good feedback we saw in some in the study. And so it was worth it, and it was very competitive, because for sure in our Sanfilippo community, it was cutthroat trying to get your kid into this trial at the time, since it was really the only one.

And so I started by calling the doctor on the trial, and I was like, if this doctor could just see Sawyer, if I could get her in front of him I think she could get in, or like I could, I don't know. That's just, that was just my thought. She's so cute. That's a good plan. I was like,, yeah, charm the socks off of him. I was like, okay. So I called every day to see if I could schedule an appointment, an outpatient appointment with him. Cause he was a geneticist. And Yeah, and they were like, why do you want, why do you need to see him? And I said, oh You know we just got this diagnosis and I just want to get more information and they're like, no, sorry. He's booked He was booked for a year. So I called every single day. And then finally they were like, Okay, we have a cancellation. So we drove down. I printed out and put in binders, her entire medical records and yeah. . Yeah. All this thing. I love you. So amazing. I poured my grief into this.

You know what I mean? Cause it was just like, yeah, I am doing this. This is happening. And so we see him. And I was like, if I'm honest, the reason why we're here is because she needs to be in this clinical trial. Like he was like. He's like I'm glad that made the time to come down and he didn't screen her officially for the trial but you could tell he was asking questions and so then about a week later he calls and he's like I want to officially screen Sawyer can you come back down so he did that. Oh, wow. And then basically she was in the trial, they said. The only thing we needed to do is get a blood test to see if she had an immunity to the specific flu virus because, they use this flu virus as a vector to carry the new gene to break the blood brain barrier and so it was very important. Yeah, it was crazy. So it was very important that she had immunity built up to it because then otherwise it wouldn't carry, and so Trial wouldn't work. 

Yeah So we were like on the edge of our seat and a lot of kids got denied because of this Sawyer was apparently a perfect Candidate because she was young still had the skills. That's what a lot of clinical trials want and need to collect data to see if it actually is working. Because if they're older and the disease has already progressed and they've lost skills and brain damage has already happened and you can't really see if it's working or not.

 So we got into the trial. She was the sixth person in the world to receive this gene therapy treatment. And . We had to live there in Columbus for a month and then for the next, five years, we had visits that kind of tapered off but all that to say, that was really a lifeline for us because it gave us hope to keep going where I feel like a lot of families don't have that. And I am so sad that they don't have that to cling to so that was Really helpful in that time.

Rhandyl: Yeah, what a blessing. Yeah, that's amazing and kudos to you because you worked your butt off to seriously Got there and then luckily she was able to be in the trial. And so Do you guys still keep updated with that trial? 

Brittany: Yeah, so actually it's going to the FDA in August for approval because they have, yeah, they have really good markers and it really could be a cure if these kiddos got it. So young. So that's why genetic testing and our sanfilippo Foundation, and they help with getting testing done for kiddos at a younger age. And that's why we share on social media so much too, because there have been so many kids, especially through our tick tock channel and . A lot of other Sanfilippo families that share that have gotten diagnosed because they came across the video. Oh, wow. My kid looks like their kid oh, my kid is having these similar symptoms because it's a big deal to get kids diagnosed young so that they do have this hope 

because Sawyer, now granted, she only got a little bit of the experimental drug because she was only in the second cohort and they just needed to make sure it was safe and all of that but she still got some and so we have seen a lot of things and even the clinical trial doctors said that A lot of the typical things of Sanfilippo Syndrome Sawyer hasn't experienced those, and it's basically made the disease stable, meaning that it's not it's not That's a big deal. Yeah, it's not progressing super fast like a lot of other kids and, she's obviously not Gaining her speech back. So it's just stabilized basically and that has really given her a better quality of life than I feel like a lot of other kiddos at her age because she is 11 and The life expectancy is mid to late teens. So a lot of kids 

Rhandyl: you really don't know now. You're just like she's stable And she's plateaued. Yeah at this point. Yeah, have they given you guys any? Other ideas or is it just since this was such a trial it's yeah, that's part of the trial Yeah, so is it just a wait and see monitor 

Brittany: last year? They wanted to start immunosuppressants now. Kids that have gotten this medication Through this trial They go on immunosuppressants. It's supposed to help this medication work better, I haven't really researched it a ton because Sawyer has been , quote unquote healthy and happy and even though she lost her speech and she has osteonecrosis in her hips, so she's slowing down with mobility, she can still walk, she can still function really well But those are the only things that we, we're struggling with as far as Sanfilippo syndrome.

Now, what I will say is her breathing issues that have been a a new thing in the past year to us. So a year ago in January was the first time that Sawyer, she had just a little cold. It was a little cough, but nothing. She's had them before, a ton of them before and been fine. But she like coughed and then she gasped for air and I will never forget, she was in her room and she started gasping for air. We go running in there. My husband does CPR and mouth to mouth because she's gray at this point not breathing and like 

Deonna: That's the worst thing I've ever seen. 

Brittany: And Zion and her shared a room at the time. So like he's sitting there watching. It was just like oh my gosh, so Call 9 1 1. They come. They get her. We go to the hospital and Basically they chalked it up to oh, she has pneumonia we're gonna give her some steroids like that's it. Okay, so then they released us from the hospital we were all traumatized. We're like, oh my gosh 

in the meantime, they gave us , an O2 concentrator was delivered to our door. No doctor really communicated why. I was like, what are we supposed to use this in case of an emergency again? What? Yeah. And so the company that dropped off the O2 called us was like, Hey, did you get everything you needed? I'm like, yeah, but when do I put this on? And they're like we have orders that she needs to wear a nasal cannula every night because of her sleep apnea. And I was like, that's news to me, but okay.

Okay. Okay. So we put on Wow. Yeah. Doctors are like, it's so fun. This is so fun trying to navigate like blindly. Yeah. Okay. So then June, she had her tonsils out end of July, she had a sleep study done. It was perfect. Everything was great. No sleep apnea. That took care of it. We're like, Perfect. Okay. 

So then August 3rd was the second night with no oxygen on her because she had a perfect sleep study. So all of a sudden, my husband wakes up and Sawyer's gasping for air in her sleep. And we're like, Oh, my God, I'm like, serious? Are you serious? And so he's trying to get air into her lungs. She's completely clamped down. He can't get air into her lungs. So I am on the phone with 911. I'm like, where are you? Like it, and it only, which crazy is it only took him six minutes to get here, but yeah, six minutes. Yeah. I was like, Oh my God. I'm freaking out. He's doing everything he can he's like about to pass out trying to get air into our lungs. And so they get here, they couldn't bag her. I think they had to intubate her. 

So then they took her to the hospital. She was intubated for, oh my gosh, like a month. And every time they would try to extubate her, she would clamp down. Couldn't get air into her lungs. They broke multiple Ambu bags. They could, they had to re intubate her again, and the doctors told us at that point, they're like, this might be the end of her life. And we're just like, what? She was just in the pool the day before. She was so healthy. I know when people hear that they're going to be like healthy, like she has a terminal illness, but like she is not, I 

Deonna: mean, anytime my daughter's ever had a major emergency, she wasn't really that sick. In the way that. We think yeah, I mean she was fine. So you just never know when it's coming. That's the hard part for us 

Brittany: So they brought in palpative care. They were ready to be like you need to make decisions to get her Good grief, I was like, oh my god I my husband and I were like, we're not there yet. Like we just we're like, okay, 

Rhandyl: so At this point in your story is when I became familiar with you on social. So my sister actually introduced me to you and she had sent me some of your videos and tagged me. Yeah. Because this is. Although my daughter was an infant when this was happening, this is the exact scenario, as a newborn,, they had to intubate her, but on the ventilator it reported that she should be able to be extubated just fine, and then as soon as they would extubate, , her airways would just clamped down. They could not bag her. They couldn't get even enough pressure through, like a CPAP, nothing. They would immediately have to re intubate. 

And then we finally got her diagnosis of the traccheobronchomalacia, and then eventually at three months she got her trach , but I just remember reading and listening to your story. I was like, Oh my gosh, I have to reach out to this mom. And so I did, I had messaged you on Facebook, which you have so many followers that I was like, she's probably never going to see this message, but I wanted you to know that you were not alone. And I think I even sent you even some more Things about what surgery my daughter had for this airway collapse like whether or not at the time. I didn't know Exactly what or if they had diagnosed her with that, but your story just hit so close to home. Although Sawyer was older and this was happening. I just want to try to give this mom as many resources as I can. But okay 

Deonna: , So how long was it from her starting to have these breathing issues? Like how long did y'all deal, like over a year? 

Brittany: No, oh my gosh, no, we had to make the decision. So they were like, we're bringing in end of life care and all of that. And before they did that, The PICU doctor comes up to us and I get that this is their job, but it was so cold. It was like, right after we tried to extubate her, I'm bawling, my husband, Sam, he was in there trying to help extubate her. I was in the hallway I can't, no, and so he comes up to us and he's I think the only last ditch effort is to put a trach in.

And I was like, Sam, my husband, was like, let's do it right away. I was like, What? I don't like the only thing you guys. Yeah. I am. It's so intimidating. I'm going to sound so naive, but when he said, trach like the only thing that I could think of with my brain is do you guys, and you don't have to put this in here, but the, smoking commercial, like back in the 90s, 

Deonna: we talked about this lady with the stoma. Yeah. 

Brittany: So I'm like, Oh my, I'm like, immediately no. I was like, I can't, we're not doing that. That's how I was too. I was like no. . Anyways. So funny. So we talk about it more and we didn't really have an option, because you decide to end life, or try the trach that's our last option at this point, and , I think it was only a matter of a couple days. Yeah, that's fast. Yeah, because we're just, I'm just like, yeah, I wanted her to, she was, 

Rhandyl: you said she was intubated for a month. Yeah. Which is a long time at that age. 

Brittany: Yeah. And she was, yeah, so sedated and that was just, oh my gosh, that was very hard to watch. I, that was the hardest part of, I think all of it . But anyways, so then we did the surgery and we were waiting in the PICU and , all of a sudden I hear the hospital call a code blue. And I immediately I know it's Sawyer. So everybody from the PICU team run, and there was this one intern there and I'm like bawling. I was like, is it Sawyer? Is it Sawyer? They're like, I don't know, and all of a sudden they come back and the PICU doctor was like, yeah, it was Sawyer. So I was so defeated because it was after the trach.

 She was coming out of the anesthesia. And her airway just clamped down, but she had already had the trach, so I was like, that didn't work, I was like, oh my gosh, so Basically, what she needed was a longer trach so she kept having these episodes with the trach, and we, went through three different custom trachs, and it still wasn't long enough, because, as maybe you guys know, the malacia, that is created at the end, so they couldn't get a good measurement, 

Rhandyl: that's exactly Yeah, it's exactly what Remi went through we ended up finally getting a long enough custom trach because her malacia was down low distal, it was like right above the Carina, and so they had to find a trach that would just Basically not touch the carina, but yes, 

Deonna: but I'm right where your lungs are split, right? Yeah, it's yeah, people who don't know. Yeah, I didn't realize that Remi had a custom trach. I mean, It just has the basic one. Still a bazillion dollars, it's like just the basic one. 

Brittany: Yeah, so we were gonna have the surgery. This was after two of the custom trachs that still, she was still having about two airway spasms a day where we would have to bag her. The doctors were just like, we have no idea. We don't know. And of course, custom trachs take forever. So you're waiting. So then they put an adjustable one in her that would pop out. Oh. That's cool. Yeah, but it would pop out. That's wild. It would come out. Oh. Because it would adjust. Not cool. Yeah, it would adjust cool, not cool. Adjust manually. No, that, no, when they were like, oh, we have an adjustable one. I was like, perfect. Our issues, our problems are solved, nope, it would pop out all by itself. 

But when we thought, the trach wasn't going to cut it, we had talked to another family that had surgery in the branches. But it's very risky. and it's like basically they stint the branches and they have to go in, they have to go in and do that every three months. And so it's very risky. You could bleed out. There's so many risks to it. So I was like all on board with that. We were going to transfer to Cincinnati multiple times because I was just like, we have a good 

Deonna: hospital 

Brittany: that said that I think it was Cincinnati. That was like the airway capital. Yeah. 

Deonna: Yeah. So I think it's the number one hospital in the U. S. Right? Yeah. 

Brittany: So we were like, we're going, we're getting out of here. But , the only reason why we didn't is because our ENT worked under yeah. The main doctor in Cincinnati, he had just come from Cincinnati, two years prior. So he was consulting Cincinnati and everything that they would do he was doing. And so that's why we stayed. But we almost had that kind of surgery. And they were like, let's try measuring one more time. They did. And the 70 has worked for her. So she was discharged from the hospital on October 4th. 16th and hasn't had an episode since. Of 24. Yeah, of 24. Wow. Hasn't had an episode since. That's crazy. Yeah, we thought she was gonna need to be on the vent all day. She only needs to be on the vent at night her stats do drop when she's in that dead sleep.

Deonna: Yeah. And that can cause a code. I've had that happen where I accidentally caused a code because I unplugged her and she was so deep in sleep that she was like a hundred percent riding the vent. So it was like, yeah, but her doctor can relate to that. 

Brittany: Her pulmonologist the last checkup , right after we left the hospital, it was like a month later he was like, yes, and she had that perfect sleep study. We should try to. get back to more natural as possible, taking trach out or, weaning her off the vent, all these things. And I'm like, what are you even saying? Are you nuts? Yeah, what are you even saying?, I love his approach, very minimal, but I was just like, oh my gosh, no we're doing this.

Also, I advocated for this medicine because in one of the trach groups that you guys are, I think you guys are part of that. Facebook trach Group. Yeah. Yeah. So one of those groups, this mom from the UK was basically like, , does Bethenacol really work help kids with malacia, bronchomalacia, tracheomalacia and Because they don't give it in the U. K. here, but I would move to the U. S. just if it would help even 1 percent better. 

Deonna: Is that an inhaled something? I don't know what that is.

Brittany: No, it's actually for bladder spasms. And oh, I've read about this. Yes. 

Deonna: Do I take that? And so, I have MS, so I take a bunch of it.

Brittany: Yeah. Oh, yeah. When we're in the hospital, I asked her pulmonologist about it. Hey, ever heard of this? Can you do some research? And she was like, yeah, I'll do some research. I'll see if there's any studies. I'm open to it so she found in cause it were, I think it helps with like babies and infants. I think it's really effective for that or it can be at least the studies that we've read, but my pulmonologist found one study of kids, older kids. It was a range from zero to 15 and it really seemed to help them. So she's like, let's. put her on it. So she's been on that as well as a fluoxetine for anxiety because we thought maybe this was a neurological component too, that she's like clamping down, getting anxious. So her doctor wants to wean her off of all these things and I'm like, absolutely not. This is giving her the best quality of life right now. She's happy. Exactly. She's at school. Like she's living her best life. ? Yeah. Oh yeah. 

Deonna: , a lot of your stuff I relate to. I When you were talking about just mourning the loss of what you thought your daughter. Life was going to be like, because I was like that too. My daughter, I had to totally shift. I was so excited the day I found out I was having a girl. Like I obviously love my son, the girl thing is just different. And I remember the day I found out I was having her, I just started crying, just mentally planning out her entire life with me.

And I know that sounds stupid, but we all do it. And yeah it's tough. So I do remember that first day when they told me, this is a. Terminal thing. It's not going to go away. She's going to have this forever. And it's going to drastically shorten her life. It was just like, Oh my gosh. Yeah. You had to mourn all of these things. And then when you talked about going to, See that doctor and just seeing him over and over. Me and Rhandyl both done things like this, where you do these kind of what the world might think of as crazy things. And it's just what you have to do. Like I have called another hospital before and just said, Hey, come get us in the jet. I'm, I need to be. Out of this other hospital, I need to come back to Houston. 

. 

And , that's not a conventional thing to do. It's not the right way to do it, or yeah. I mean we do a lot of these things.

I've even, I don't know if y'all have ever done this. I've called doctors and they're like, if you are a patient, press one. If you're a doctor, press too. I always press too. I'm like, that will get me where to go. So much faster. And then they're like, you're not a doctor. I'm like, no, but you would have never answered the phone if I hadn't. Yeah. So here we are. Do what I need done right now. Yeah. We, we do some wild things. 

Brittany: Otherwise you're not going to survive. I don't know. My friends make fun of me cause I'm not by the book. I don't do. And it's yeah, you just. 

Rhandyl: Sawyer's not by the books, so none of our kids are. We have to just figure it out.

Deonna: You have to let the crazy out sometimes. You do. Our next question for you is, how did you handle the stress, or how do you handle the stress? Because we all have different ways we cope with the stress of our life, and it's so hard. People on the outside, I don't think they'll ever fully understand because I had no clue what I was getting.

I, that we didn't sign up for this, but I had no clue what this was going to be like. And the stress can be borderline crippling. Just tough sometimes. No, not borderline. Full blown crippling sometimes to us. So how do you handle the stress of it? And then how does your husband handle? The stress of it himself. 

Brittany: Yeah. We, I don't know. I think it helps me share stuff on social media. Share our story. It makes you feel less alone because when you're in your, everyday life, even as simple as dropping Sawyer off at school, you see all these typical kids and their parents and it's just Picture perfect. And it's really hard. And so then when you show up in a online space and meet other families like you guys and other moms and other kids that it just makes you feel less alone. So I definitely, social media has really helped. It can be a good thing and a bad thing, but it's really helped connect me to other people and to a community.

And I will say just How we cope is I try not to have big expectations for our life, even as simple as planning a Saturday outing. Oh, we're going to go do this and that. And I, we. Rhandyl knows what that's yeah. We try to keep our life kind of simple and we try to just go with. How everyone's feeling if there's a day where , I need to be in bed all day because I just can't like emotionally I'm done. I'm tapped out. Then Sam takes the bulk of parenting, and he, it's just kind of like a give and take. And we haven't always been like that, our marriage has definitely suffered through, the start of these kind of very challenging years, when we first got Sawyer's diagnosis we definitely self medicated just in really unhealthy ways, like eating or, me with wine him video gaming, just very whatever.

But 

Deonna: Trying to escape it. It's really hard. Dull it down. Yeah. Yeah. I get that. 

Brittany: We kind of Moved into a new place. I know this sounds so weird, but we just live in a two bedroom townhouse, but moving into a new space, getting rid of a lot of stuff and just simplifying our life and putting in systems and routines because I used to be this mom, this type B mom, very we don't have a bedtime, we don't have a nap time, could care less like really about anything. But I put in these systems and these things to just give us a better quality of life where we're not in survival mode, chaotic craziness. Yeah. Because our life is already chaotic enough that it's okay, we're gonna, do the dishes every night. We're gonna I don't know, just own my stuff. I know that sounds so silly, but 

Rhandyl: No, I, no. Like minimizing and creating a sense of order. I can imagine helped out. 

Deonna: It definitely helped me. when we moved here, I had already started a minimal journey because when I got diagnosed with MS, I think I just was like, Oh my gosh, I can't deal with all my stuff anymore. I have to get rid of it. It was causing me problems, just thinking about it. And then, yeah, with Allie, when Rami's the same way, like we have these really Strict systems that we have to follow for our own sanity. And yeah, I'm glad you brought that up. Cause I feel the same way about our stuff. A lot of people say they're clutter or, whatever is making things harder and that stuff really does psychologically mess you up. Like it's good to. Yeah. Yeah. So another child in a way, it's a lot of work. 

Brittany: Yeah. And , my husband and I went through therapy and , we were both on and off antidepressants and that almost made us more numb. So we got, off of those because it was just like not serving us and I know for a lot of people it really helps but we had tried so many and it either made us not be able to function as a parent just being tired all the time or just could care less you know and so once we got off of that we just started putting in systems started listening to each other. What we actually needed, and I think the biggest thing is giving each other grace and that gosh, yeah, special needs parenting different disabilities and medical stuff in a marriage. 

Rhandyl: It's not for the weak. You definitely have to embrace the grace. 

Brittany: Yeah, exactly. And it's I held him up to the standard of he was a bad husband if he wasn't pursuing me, if he wasn't doing this, if he wasn't doing that. And it was just like, you have to let go of this. stuff and you have to learn to like work together and stop comparing your marriage to things on TV or social media or people, 

Deonna:  What I've noticed with us is, you watch all these other girls like on Valentine's Day, they're getting all these over the top things or doing this or doing that, which has never been me and my husband's vibe anyways, but if Dane feels Allie's feedback and primes it and gets it ready to go. That's love to me now. You know what I mean? And that sounds so stupid, but there's things he does. Like the other day he got her entire, we travel with these huge toolboxes. They're called pack. And he got eight days ready to go and it's like totally packed and ready to go.

So if we want to go somewhere, we can go. That's the, I don't know. Like it's just, yeah. Access services now like the love language in our lives. And I think it's, I think it's interesting to what you were saying. I thought me and my husband were both having the same exact experience with being a parent of a disabled child. And so it would frustrate me if he didn't think the exact same things as me . And I'm realizing he's having a totally different Experience and you have to realize like there's things he might be really worried about that I don't care about or, whatever. And so it's really hard.

Cause with our kids some things are life or death, and it's just so different than regular parenting and I. You just can't compare yourself to other families because our, I don't know, it's just going to be so different. There's no way it's ever going to be the same. No I, I'm glad y'all went to therapy. We're big fans of going to counseling. I have a counselor. It just makes a huge difference. It's 

Rhandyl: well and it's a big deal because I mean we bring this up a lot we know marriage is really hard after Having an experience like this with a child and you know A lot of marriages do not work after it and we're three of the lucky ones that have been able to Manage and figure out ways that work best for each of our families. And I think that's awesome that you guys have found a system that works good for you because it's what's great for you as a couple and also for your family. 

Not only do I transfer my own child in and out of her stander very frequently, I transfer my pediatric physical therapy patient in and out of their standers every day. And Zing standers are thoughtfully designed. Transfers in general are not easy, but Zing took care designing a standard to simplify the process as much as possible.

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So they designed a stander that could position a child from supine to prone. It's a seamless transition from full supine to 20 degrees prone and provides a therapeutic opportunity found in no other stander. You can learn more at Zingstanders. com

Rhandyl: Okay, We'd like to get into Zion because We know that he also has a disability, your son, Sawyer was close to three when you had him, right? And tell us about Zion and his diagnosis when you found out. All of that. 

Brittany: Yeah, I look back now and I'm like, oh man, he was such a needy baby. He cried a lot. Very fussy, but not colicky or anything, but he just cried a lot. And Clung to me just needed to be near me touching me Velcro. Yeah, at all times. And as he got older, we got him into services in the home when he was one because he didn't talk right away. Not that he wouldn't talk, but he made more sounds, noises rather than spoke words. And since very early on, lived in his head, I don't know, had this ongoing movie in his head, basically. And he would play by himself for hours. 

So 2020 hit and at this time, Sawyer was going to a ABA therapy center. So they worked a lot with autistic kiddos, she was going to preserve her speech that she already had, or that she was losing. So that's why she qualified and went to this all day center because she needed something to. fill in the gap before kindergarten. So I was going there and I was bringing Zion to the therapy center because we would have once a week meetings and somebody there brought up very gracefully. What, do you think Zion maybe, I don't know how they said it, it was very graceful, but basically brought up autism. 

Deonna: Yeah, cause that could be really hard, for someone to say that to. 

Brittany: Yeah, and I wasn't offended or anything, it was very graceful, and I was just like, I don't know. So then I kind of talked about it on social media , which I verbally processed everything back then. I had zero filter, but I was just like,, I had this experience at Sawyer's Therapy Center today with one of the therapists and they mentioned, autism. And I was like, I might go through the process of it. Getting him tested just to see and so many people flooded my inbox. Oh my gosh, don't put a label on him Don't put a label on him and I'm just like, okay So but I got to thinking and I was like, you know what I said No matter what he's gonna have a label on him if we choose not to get him diagnosed with autism or get tested for it, he's gonna be labeled as The kid that doesn't talk or all these other different labels, the kid that misbehaves, doesn't listen. And so I chose to do it. It was right before the pandemic hit and we went in, he was tested and he Turns out he is autistic. 

Rhandyl: What, how old was he when you got the official diagnosis? 

Brittany: He would have been four. And a lot of people were like, that's way too young to get a diagnosis. But we just saw some things that, a lot of sensory things. He was always making noises. He always needed something in his little hands to touch and to carry. He, Yeah, didn't really talk. He was the loveliest kid. He still would snuggle and love and he loved being around people and so that's why to me, I was like, but he still snuggles me. Maybe he doesn't have autism, there's so many misconceptions. I had so many misconceptions. 

And so anyway, so then We just got the diagnosis and he went to ABA therapy. After that, he qualified. We got him into that and it was a year before kindergarten that he did that. And then he went into a kindergarten at my daughter's school, where Sawyer was going to school at a public school. And I go into the IEP, meeting because he has this diagnosis and they were like, Sure. Okay, so we're gonna put him in an autism program, all this stuff, and I'm just like, wait wait, because he, Zion is so smart and he loves to learn. He was reading books. Before he entered kindergarten He was smart, very motivated by learning. And so I was like, wait a minute He's never been in a classroom setting. Can we just try to have him in his gen ed class? Even if it's for a month, this is kindergarten we're talking about, like none of these kids have ever done this before and I had to fight them on it because they were like Oh, no, we have, and this is post pandemic. So they were like, Oh no, we have 30 some kids. And I think they were all worn out. And I felt bad, 

but I was like, listen I, I want to give him the chance, to see where he's at. And so we put them just in the. kindergarten gen ed class and I said, we can write in his IEP. I don't want him to be attached to a program, but if he needs a para to come in to remove him to take sensory breaks or whatever, let's do that.

And so they were like, okay I get a call. This is April, I think in the year at mind you, every parent teacher conference was amazing, fantastic. I met this one lady at one of the parent teacher conferences that said she worked with Zion. I thought she was like a para. I thought she just was like in the class added extra support for him. That's who I thought she was. Okay. I get this call in April from this lady that I met that I thought was just a para that was like, hey just so you know, your son can't go to this school next year because we're not going to have his program anymore. They're discontinuing this program. And I'm like, I think you have the wrong number. Who are you talking to? Who are you trying to get ahold of? And they were like, yeah, , I work with Zion every day. We made it. We made this makeshift program where it was me and two students and the other student was this girl that really triggered him because she cried all the time. And that's like his biggest trigger is someone crying, 

and so I was like, You're what? And she's yeah, we spend about, 50 percent of the time in a different classroom. And I was like, I did not. You didn't even know? No idea. I was like, I did not approve of that. Ah, that's not okay. So I take to TikTok as I do. And I was like. Ha. And you know that Taylor Swift song that was like. I've seen this before and I didn't like the ending. I just had that song and just like me just sitting there and then text saying when you wish that your autistic child had all the same chances as every other kid or something it goes viral the district calls me the next day because I mean I think I had Oh shoot. I think it has 2 million views on it. 

The district calls me and is Hey, we saw your TikTok and they were panicking. We had an emergency. You're like, Oh, did you? Yeah, I was like, gosh, okay. They were panicking. They called an emergency IEP because I had grounds to sue. Really, but all I wanted was him to just have a chance, so basically we decided next, we finished out the year there, we decided next year he's going to go to a smaller school that has a better program for his needs because basically that school is amazing for Sawyer because very high support needs. It's amazing for, but they don't have that kind of in the middle, Zion, Zion doesn't need help, bathrooming or all this stuff. He is very functional. And he's very smart, but he just has some sensory needs. He has some social skills in, he may need help on and stuff. And, attention and that kind of stuff that he struggles with. 

But anyways, so the next year they were like, okay, this other school has an amazing program for Zion that is more geared towards what he needs. And I was hesitant to put him in a program again. I was like, okay, they were explaining to me the kind of kids that were in this program. So I was like, okay that kind of sounds more like Zion, maybe it will be good for him. I don't know, in my gut, I was just like, I don't think so. Anyway, so we go there. He's the only kid in that program at that school in that little self contained classroom that was verbal. , All the other kids were nonverbal, which is fine, but some of the things that he really struggles with is absorbing other kids behaviors. So there were a lot of like problematic behaviors and then there were a lot of all the kids were like mostly nonverbal.

Rhandyl: . I know just from friends and my career that sometimes that middle ground in education system is so hard to find with the autism diagnosis. 

Brittany: Yeah. So we finished out that year only because he loved his teacher in that self contained classroom. He had such a bond with her. , but towards the end of the year, he was having some behavioral issues that he's never struggled with before. Just a lot of imitating behavior. And I was like, this is not good. This is not serving you really. So then I decided let's homeschool because Sawyer is at school during the day.

And I was like, you know what, we're going to try it just for a little bit. And so we started homeschooling. Last year was our first year and we got connected very quickly because I knew if we were going to do it, that we needed a community so , we found that on Facebook, a local group that is just from people from all different groups. backgrounds and walks of life and we have weekly play dates and then we have weekly field trips. And it's been really good. And then we have just like different events throughout the year like, Valentine's Day parties. Yeah, had Christmas cookie making thing. And so , just different events where multiple times a week they're getting with other kids. Sometimes Yeah. Yeah. Ranging from their age to, there's teenagers too in it. And sometimes even younger kids.

Rhandyl: What grade is he in? 

Brittany: Third grade. 

Rhandyl: Does this homeschool You said it's a local group. Is it specifically for kids with autism or is it just typical kids and all?

Brittany: No, but it's cool because one of his best friends, we didn't really know this at first, but now that we've gotten to get to know everyone through the last couple of years, he has Autism as well. And there are a couple of other neurodivergents in this group. So it's like a mix of kids, neurotypical kids and neurodivergents, which is really, which is good because it makes him feel less alone, but then it also like models the behavior, and he gravitates towards older kids too, because he wants to be like them, and they're just, there's just such a good group of kids that we've gotten to know and really connect with.

And it's been really good for me too, because it's , given me a community, we've lived here for six years and we don't really have any friends or people here. That gives you a great community. That's been so helpful for my mental health too, and then we have our neighbors that we just got to know really well last summer, and they're some of Zion's best friends. And we've gotten to know the parents as well. So that's been helpful too. And yeah, just really good for , all of us, honestly. So yeah, we just try to keep him connected. 

Honestly, we do curriculum. We buy curriculum at the beginning of the year and we honestly do schooling year round. So he does two lessons a day. And we do units. So right now we're doing all math and we do a lot of like science and history through play, museums the library, different creative ways. because Zion, what I found about him and why school really wasn't working for him is because he's in his head. And he has this, whole little world in his head. So you have to figure out how you can come into that instead of just Zion, do this, like Placing demands on him. Yeah, we get very creative with learning and it's honestly been fun and it's been an outlet for me to I know it's another thing on my plate, but at the same time, it's. It's rewarding, yeah. Yeah he's thriving. He's doing really well. 

He struggles with AFRID that's the other big thing that we're tackling. So he has severe food aversion. So he only has maybe five safe foods. So we have food therapy once a week. And we try new foods, multiple new foods a week. And he's he's It does that we share a lot of that on social media as well. He likes to make a little cooking show that really helps him. That's hilarious. So yeah he's doing really well. His. pediatrician said, we should try him on meds to keep him focused and out of his head but we're trying some other ways first to see if could help. And it's been going good. Obviously, you guys know, some days are better than others. But for the most part, it's really Yeah he's thriving and doing really well. Yeah. 

Rhandyl: I'm curious about the dynamic between Sawyer and Zion. Yeah. As siblings. 

Brittany: Yes. They love each other. Sawyer loves Zion so much and he loves her. They're so different, but yet a lot alike. Which is so funny. And he knows her routine. He'll be like, oh, mom, it's five o'clock. You got to make Sawyer's dinner. Or he'll put on all of her favorite shows. He keeps you in check. Oh yeah, he could parent her. He's okay. Mini caretaker. Yeah, he's oh, we got to do cares now. We got to do trach cares and all this stuff. I'm like, okay. So he is very in tune with Sawyer. He knows. About Sawyer, he knows that she has Sanfilippo. It can get difficult sometimes when she puts everything in her mouth. So like his little toys, if he leaves them laying around, she'll put them in her mouth and all the things. But he is very mindful of her and. It's very thoughtful of her to it's so funny because they do fight like typical siblings still, like she does antagonize him.

And like she'll take his iPad. 

Rhandyl: That sounds very similar to my household. 

Brittany: She'll take his iPad and then she'll just smile and even though she's nonverbal she, he's, she knows what she's doing. 

Rhandyl: Oh my gosh, that's so funny. 

Deonna: I love it when my kids fight a little bit. Just a little bit because my son basically treated Allie like a little princess after she got hurt. And we were like, be so careful with her. Be so careful. You could something bad could happen. Yeah. And now they're fighting and he's giving her crap about stuff and she takes it. But when they get mad at each other, I love it because I thought that was gone. I know that sounds stupid. Like you shouldn't want kids to have that. Normal sibling experience of fighting, but yeah, it's just nice 

Rhandyl: I agree. I yeah, it warms my heart Just whenever they start wrestling or bickering back and forth I just sit there and I should probably be like you guys stop But I'm like just looking at I'm like, yeah I never knew if this was ever gonna happen and this is Just the way siblings are supposed to be. So you may let it go a little far sometimes, but you're like, beat him up. Come on. Yeah. Basically. And she does, she plays dirty and it's so funny. 

Okay So I saw that I believe your husband wrote a children's book called Zion the Lion.

Brittany: Yeah 

Rhandyl: Okay, tell us about that. 

Brittany: We were using social stories for him to get him to do anything and everything like if you just talk to him or if he had bad behavior or something or got in trouble. If you would try to have a conversation with him, he would tune it out. The only thing that he could really understand was a social story. So my husband is so creative. He's the creative one, and he would draw these little pictures in these boxes. Okay, this is what you did. This is what happens. And write out all the story, whatever.

And so we were trying to get him to use his words in expressing his feelings. And so my husband came up with this social story. Literally, we were on our way to my parent's Christmas so we had a two hour drive. He's like typing on his phone, in the car, this entire story. Just Typed it up. And it was like, yeah, we used it for Zion, but he's I should publish that is self publish it and see if maybe other kids need it and so he did that he found like an illustrator, and yeah, just did it. And Zion loved it. It really helped him. And I think he published it on Amazon. So I think it's yeah, if you order a copy.

Rhandyl: I found it on Amazon. Yeah. Yeah, we'll add the link in our show notes for sure. 

Brittany: Yeah, that's so fun. Oh my gosh. 

Deonna: Okay. So our last few questions is if you could describe what your children have taught you, both of them, honestly, about yourself through this experience, what would it be ? 

Brittany: Yeah, I think Sawyer for sure has taught me how to be so resilient. And just everything that she's gone through and just how little you need in life to have joy. I could cry. Just because it's just especially after this last kind of. The trach and that whole situation like life is, you put life into perspective as to you really don't need that much to be happy, to find joy in the little things. And she does. She is the happiest girl. Ever. And I just think if I had a trach, if I had a feeding tube, I would be the worst. I would be a bear. I would not be happy. I just put myself in her shoes all the time. And she goes through every day loving life and She doesn't know any different, and I think she's taught me how to love better because she just loves so much and she loves life and she loves people and she's taught me just how to, look at the world. differently. And 

Rhandyl: you look through a different lens for sure. 

Brittany: Yeah. And to give grace for people. My perspective has changed so much. I used to be so rigid in the way that I thought. And I used to be so like, almost judgmental or, no tolerance for people really at all. And it just gives you a different perspective on life and people. Love. Yeah she's taught me resilience for sure. 

And then Zion has taught me literally how to be a parent because how I parent Sawyer and how I did for the first couple years of her life is so different now and so I feel like I'm a new mom with him. I feel like I'm navigating motherhood and parenting and disciplining and all these things and really trying not to do some of the things that were done to me in my childhood and really try not to give him childhood trauma, honestly.

And he has taught me about myself because so many things. In him are so similar to me growing up. And so he's taught me grace and grace for myself, and grace for him as well. And he's also very happy go lucky. And some of the things that he navigates is hard, emotionally and internally that I know that he doesn't talk about , but I know that he has to overcome them. And so I, yeah, just, I think both of them resilience, but definitely he's taught me.how to be a parent. Once we got that autism diagnosis, I could understand him. I could have empathy. He's taught me so much empathy. I could understand him. I could love him better, parent him better. And so that's, 

Rhandyl: And like you said, your inbox flooded with um, people don't, you know, you don't have to put a label on it, In my perspective, and , from what you have said, and from what I know from other families with the autism diagnosis is that it's not necessarily a label, like you said, they're going to be labeled either way, but having that diagnosis opens up so many more opportunities for these kiddos and it helps us as caregivers be able to better understand and have resources for ourselves to raise these children in a loving way in the best way that you can meet them where they are. So I'm proud of you for being such a wonderful advocate for your kids. Like you're awesome. 

Brittany: Thank you. No, I appreciate you guys. It's been so good to talk to you.

Rhandyl: Yes. Okay. So the last thing we usually like to ask is Our guests, what resources would you recommend to parents who might be facing the same challenges? I know you have multiple challenges, but what do you suggest for resources? 

Brittany: I definitely think when Sawyer got her trach, I literally went on Facebook and was like, groups for trachs, definitely connecting with whatever kind of niche thing that you're dealing with, no matter like, how niche it is, going to Facebook is the best place because it has those kind of private groups that you can like, connect in, but then I would reach out to getting your kid on the waiver or looking at the resources that can help take some of the burden off, and I know I talk to a lot of moms about, oh my gosh, that seems so intimidating and stressful, but look into your county, look in.

It is. It's a lot of work. It is. 

Rhandyl: Yeah. But it's so worth it when you finally get it. Exactly, yeah. Yeah. 

Deonna: There's case managers who will sometimes be able to help you with that stuff too. Yeah. Like at hospitals. Yeah. They can help you get started at least. Yeah. 

Rhandyl: All states are different. Yes. But typically they all have Some sort of resources that can help you in a situation with a disabled child financially. So I'm glad you mentioned that because we don't always touch on that. And it's something that I feel like everyone. That might be going through a similar situation definitely needs to hear because there are in like you said though It is a lot of work and a lot of loopholes Yeah, things like that, but I will say 

Deonna: as your child on Medicaid like on state Medicaid 

Brittany: yeah, so she was on a waiver up until we went into the hospital and then we had to get off the waiver because The only thing she really needs is nursing to go to school and then parent pay because Minnesota offers that. And so we got off of that and now I'm her PCA and Sam is getting to be one as well because he does night nursing so then nursing is covered by her Medicaid but we were on the waiver and that was very helpful and we may get on the waiver again at some point if her needs change, 

but also I want to mention that even some people are like, Oh, cause some people look at like an autism diagnosis as like not being disabled, but It is. It is a disability and you can get resources for that. You don't just have to struggle through. It's been a lifeline. With Zion, at least, there's this program in Minnesota called Consumer Support Grant. And that gives a little bit of a budget to help. Either you can use for a parent pay or for horse therapy or stuff that Medicaid doesn't cover. And so that, that has really helped our quality of life and it's not millions of dollars by any means, but it takes It takes a little bit of the burden off, it's hard. So yeah, I would say for sure, look into, anything that you can get really.

Deonna: Yeah. No, that's, the money side of it is something we don't. Talk about even on here as much, but it really can be, I think all of us would have been like, broke if we didn't have insurance and these types of things, because like Allie is in the millions and millions at this point. I know Remi definitely is. Just being on a trach and vent, you're 

Rhandyl: millions a day. 

Deonna: Yeah. People are like, oh yeah, we met our deductible in August or whatever. And I'm like, I think Allie meets her deductible January one. January one, like 1201. Yeah, we boom hit it literally. Oh my gosh. So funny.

Yeah. But yeah, you do have to do a lot of research to get on those. Yeah. Programs and things like that. But yeah most of the time a hospital can at least lead you in the right direction of case management and yeah. Things like that. But every little thing helps. Even in Texas, Medicaid will pay for, your private insurance or something like that. I didn't know that. That's money back in my pocket. But you just have to know. That's what's hard is the knowing. Yeah. It's a lot of research. Yeah. But it's within your grasp. That's for sure. Yeah. Thanks. 

Rhandyl: Yes. Brittany, we have thoroughly enjoyed talking to you. It's so nice to meet you, I love following you, and we just appreciate you so much, and we wish the best for you and your kids and your family, and thanks for joining us.

Brittany: Oh, thank you so much. No, I appreciate you guys, too, and this has been so fun and therapeutic. 

**Disclaimer

Before we go, I wanna remind our listeners that this podcast is for the purpose of education and entertainment only, and is not a replacement for seeing a doctor. We suggest you seek out the help of a trained professional for help with your child's specific situation.