Deonna: [00:00:00] Hey y'all. Welcome back to Raising Disabled. So today we're really excited. We have one of our in real life friends on with us today, Alex, and we are so excited. We met her, I don't know when you met her, Rhandyl. I met her when Brooke introduced us back in the day and yeah, I think the same. Yeah, we, yeah, we all live in Lubbock and we just have started to create this little text chain of complaining to each other and asking each other how to, if you have supplies or just like all the things. And so it's been a cool little group that we've created and she's a part of that. And so thank you so much for being willing to talk to us today. 

Alex: Oh, thanks for having me. 

Deonna: So first just tell us all about you and your family and all that good stuff first. 

Alex: Sure. So I'm from Lubbock. I'm married to my husband coming on 10 years. We have four children. My oldest is seven, then I [00:01:00] have twin boys that are five, and then my daughter Mattie, is two.

Deonna: Okay. And your daughter is the disabled one? 

Alex: Yes. Yes. She's our disabled child. 

Deonna: Disabled baby. 

Rhandyl: Yes. Yes. Okay. So tell us about how you found out about Mattie's diagnosis. 

Alex: Sure. So with my boys. I did IVF and had many years of infertility. So when we got pregnant initially with her, it was a shock. Oh man. So I found out I was pregnant around six weeks or so. Everything looked good. When we did the 10 week genetic testing just to find out gender, everything came back normal. It said healthy, normal girl. And then when I went in for my 20 week ultrasound is when we started to find out that there was gonna be some issues.

Right. So I was already considered a high risk pregnancy I had a difficult labor with my oldest had, preterm [00:02:00] labor with my twins was in the hospital. Mm-hmm. So I was already considered a high risk and so I was going quite frequently for ultrasounds anyway with Mattie. And so at my 20 week ultrasound, they did a routine, just your normal, full anatomy scan and just said that she had some swelling , on both kidneys and then that they couldn't get a good measurement of her femur to know height, but they said it's completely normal. My boys all had fluid on their kidneys and so mm-hmm. they said I should go away in a two weeks and then we'll get the measurements again just when you come back in two weeks or so. 

So I went back by myself around 22 weeks for my anatomy scan. And the ultrasound tech was just taking our time, but kinda looking at the screen in a way that you knew something was concerning. So I looked at her and she said, I'm taking a long time because this area of her brain should be here and it's not. Oh sure. And then, and she started going and said also her kidneys have [00:03:00] worsened. They're still both dilated. 

Rhandyl: The tech is telling you all of this? Yes. Okay. 

Deonna: I can't believe she said any of that 'cause usually they're like silent.

Alex: They're supposed to be. Yeah. She's not supposed to say anything. 

Deonna: Supposed to be, 

Alex: yes. And then she said, I also don't see her stomach. I don't know if she has one or not. Then at the end, she said also she has a clubbed foot, so on there. 

Deonna: Oh my gosh. By your, by myself? Of course you were by yourself? Yes. Oh man. 

Alex: My phone was away, so I was trying to message my husband off my watch just to tell him, the tech is saying all these things that are wrong with Mattie. Yeah. I don't know what's going on. And. So at the end of the ultrasound, of course it was almost five o'clock, they were ready for me to get outta there. And I said, I need a minute. And so I went to go to the bathroom and just take a second. And the maternal fetal medicine doctor was right outside the [00:04:00] door and he had a list of everything wrong with Mattie. 

And so I came back in and he said, I think there's something more of a syndrome going on with her. Right? I can't tell you what it is by everything just listed with what she's got going on. I don't have a syndrome just off the top of my head, what is affecting her? He recommended that I did A MRI, and that was gonna be in Amarillo. We didn't have a neonatologist for radiology here in Lubbock. So around 24 weeks or so, I went to Amarillo and did an MRI. They checked her brain as well as her esophagus and trachea were present. Also, if her stomach was present and what they could see. So at the MRI, they were able to read it as it was happening. 

So after the MRI was done, she said, we confirmed that she's missing her septum [00:05:00] pellucidum, which is. An area of the brain that will signify that there's something syndrome going on, or Oh yeah, your child's gonna have disabilities or, yeah. A marker for developmental disabilities. Right. Um, she said also she's missing her corpus callosum, which is an area of the brain that connects both hemispheres. So just to communicate signals. Oh, she said sometimes people live without it and you would never know. They might have a brain injury or something causes them to come to the hospital, and that's when you find out that they have it. But again, it's another marker for disability.

And then they thought that her trachea esophagus wasn't connected to her stomach, so Oh my gosh, yes. So they thought that was the case with her. We didn't know for sure, but that was just based off the MRI. So. We left there just thinking we're gonna have to deliver in Houston or Dallas. For sure. Didn't know if Lubbock was gonna be able to handle our care. And just [00:06:00] next steps was gonna be along NICU stay and I. Just seeing what the future was gonna hold. 

Rhandyl: Yep. So, um, so backtrack, you had your, three boys naturally. Mm-hmm. And then you tried IVF, 

Alex: so I did IVF for all three of the boys. Oh. Technically. Okay. So I misunderstood that. Okay. So we did IVF full round with my oldest transferred two embryos, got pregnant with him. Then had to do it all over again 'cause I didn't have any embryos left over. Okay. Did a transfer, didn't get pregnant, then did a frozen embryo cycle and then got pregnant with the twins. Oh, okay. Because we transferred two embryos. 

Rhandyl: And So Mattie was not 

Alex: No, she was a full on surprise. Oh, okay. Yes, she was. Oh, Mattie. He was a shock. He was, she was just meant to be here. Yes. So we thought we were done with kids and lo and behold she came along. So, yes. That's really cool. 

So we. Just did a routine every few weeks [00:07:00] of ultrasounds just to see if there was any changes. Unfortunately, there weren't any positive changes. Yeah. So I did opt to do an amniocentesis. I'm very much a planner in life, and so I just wanted to be, I can relate prepared on what we needed to do as a family. And so around 26 weeks I did an amniocentesis, waited many weeks for the results to come back, and it came back normal, healthy girl.

So they did believe that it could be a syndrome that we just didn't know which one it could be yet. Mm-hmm. Or that it could be just one-off situations, multiple one-off situations. Yeah. So we weren't gonna be able to find out really until she was born and to be able to lay eyes on her and yeah. Dig a little deeper. So, yeah, that was all the initial, 

Rhandyl: so did you, so you, did you end up being transferred to No, I did another [00:08:00] hospital.

Alex: I did deliver in Lubbock. Okay. I knew the whole NICU team. Ahead of time. She was on what was called the PAC team. So they knew ahead of time that these were gonna be some complications, be aware when she's born have everyone hands on deck ready to go. And just because I did have a long stay, my twins were in there for about eight and a half weeks. So I developed relationships with the nurses Yeah. And neonatologists. Oh yeah. And so I actually knew prior to delivery who was gonna be all on call, who was gonna be available.

And so we did a scheduled C-section. Okay. I had her at 37 weeks and five days just a little bit early. My OB was gonna be outta town and we didn't think we'd make it through the weekend. I blame you. And I knew the surgeons were available 'cause we thought she was gonna have to have surgery as soon as she was born or the next day. And so we just planned and worked all together to have her that day. 

Deonna: That's nice when you [00:09:00] can do that, yes. 

Alex: Definitely a perk when you've had some relationships. Have relationships, connections. 

Deonna: Yeah. Yeah. Well, and you may talk about this later, but you're a nurse so I, 'cause I mean, when I came into this I knew nothing. I mean, it was like terrifying because I knew nothing. But then you, on the flip side, it was probably terrifying because you knew so much. I mean, it's like you're being told all these words that you understand and it's probably equally scary in just like a totally different kind of way, 

Alex: yes. It's scary to know how bad it could be. And just the risks, but also. It does come within being able to have relationships and a little bit of pull. It's, It's good and bad in both areas. Yeah. I get what you're saying. So you, it hits a little harder. And also then when it's your own kid, it definitely takes a different toll. It's, It's almost the same. Yeah. You almost just, it'd be easier for me to I think, process it, obviously, if it's not your own child, and then when it is Yeah. [00:10:00] That's just another, oh yeah. Another route 

Deonna: layer. Yeah. Well, and I remember when you were telling this story, I, 'cause we know some of the same people and I remember people telling me, 'cause we had met at this point and people were telling me, Hey, 'cause we'll talk about this later, but you have disability in your family at in a different way. I just remember thinking, oh my gosh, like she's gonna have to go through something hard again. Like this is gonna be so, hard. I just remember, I didn't even know you, but I was like, feeling for you. 'cause I thought, oh gosh, here they go again. Thank you. Yes. Yeah. 

Rhandyl: I remember before we ever met, before I even knew who you were, I think , one of my friends had shared a post that you had posted. I think either Mattie had just been born basically, you didn't know a lot and so you were seeking out questions. And so from then on I was like, oh my gosh, I need to follow this mom. Like and then here we are friends going out to random dinners and you're on the podcast now. So 

Alex: I remember when I had my twins, [00:11:00] 'cause I went to labor early with them at 24 weeks. And that was a big concern. They've even mentioned, we know that your brother was disabled. And it was, I think, a fear of theirs that I was gonna have such an early delivery and have a disabled child that it affected the way, the way they cared for me and were prepared. Mm-hmm. You know? Mm-hmm. Um, Took extra steps to let me know the reality of what could happen. 

And then when I had Mattie, my ob, I. Wanted to get my tubes tied or actually taken out. Yeah. And that was a concern even in the or he mentioned many times. Are you sure? Because you could just see the fear of what if we deliver and she doesn't make it? Yeah. Yeah. Or what if you want another child and if she doesn't make it. So I think a there's multiple, like you said, layers, that effects of having somebody that's already been disabled and then what can happen for having a disabled child. 

Deonna: It's like you're mentally [00:12:00] prepared for it, but you're like, so PTSD traumatized from it too, so it's like both sides of that. Yeah. I would be like, thanks for your concern, but get these tubes outta me right now. Thank you. I did. I said either way. This is heck yeah. This is it. I'm good. Yes. 

So tell us about when she actually got diagnosed and just how what she had to go through to get to that point where you guys knew what she had.

Alex: So, uh, delivery, I had a c-section with her. I was able to see her for just a second and they wanted to make sure that they could get. Down to her stomach and be able to see if she had any complications, airway wise. They were able to get down to her stomach and scope and see that she did in fact have a stomach. Everything was where it should be anatomically. Right. And they came in and said those things, were good there. Which in my mind quickly turned to, well then developmentally she's not doing what she needs to do. And so that was a big, [00:13:00] I , flag in my mind of saying then she doesn't know how to swallow she doesn't know how to breathe correctly . And so it was a good thing, meaning we didn't need surgery. 

But then it was more of, okay, well then what does this actually mean for the long haul? Yeah. And so, at the time in the nicu they did all their scans testing. She did have some physical. Anomalies. And so you would be able to tell that, genetically there is something there. Right. Physically you could see. But then also we had difficulty with airway, difficulty with her heart. Many factors. And so we did a whole exome sequencing, genetic testing. Since we had done previous rounds while I was pregnant with her, they just automatically said, we're gonna do the whole exome. Which unfortunately you can't just jump from point A to Z, you have to do the little testings in between. So the first two rounds of testing came back normal, healthy girl just like the first two did. Then at [00:14:00] exactly a month old is when the final stage of the whole exome testing came back. And that's when they found her diagnosis. 

I was in the bay holding her and the neonatologist came and said, we got her results. Handed me a piece of paper that was a printout of an email that you received from the geneticist. And 

Deonna: was this in Lubbock? 

Alex: Yes, Uhhuh. Okay. And it was just a printout of an email that said that they had the findings and it was, which is called KAT6B kAT, the number six. And then the letter B as in boy. And that was it. There was no information on what it actually meant. No resources, nowhere to go. 

Rhandyl: Is that just a gene sequence? Like Yes. 

Alex: So that's the actual gene. Yes. The KAT6B gene. And that's what's affected. And so it happened de novo. So just on its own, it's a random gene mutation. 

Rhandyl: Oh, wow. So it's not like you guys were carriers? 

Alex: No. [00:15:00] Okay. They have no understanding of. How it happened or why, 

Deonna: so it's not missing. It's just like mutated in some way. I don't know. I'm learning about genetics through this. 

Alex: So they really, it everyone can be different. It can be the depletion and translation with hers. Oh, it's more of a depletion, but they don't truly know where, when, why, especially at what stage of pregnancy that it happened. Right. Honestly, it's when, in the early stages of forming. Yeah. Yeah. But they don't have an understanding of why it's not medical related. It's not Yeah. A medication related, it's not, like you said, we're not carriers. Yeah. That's um, it's a very, very rare syndrome. Yeah. 

Deonna: How many people have it in like the US for example? 

Alex: Possibly less than 30, I would say there's that. 

Deonna: Oh, so it's on the very rare side. 

Alex: Yes. There's about 150 [00:16:00] worldwide. Wow. At the time of her diagnosis. So there has been, more in the two years since she's been born. But we don't have an exact number and there's Right. A handful that have been actually studied. So that's why too, when he gave me the diagnosis, there wasn't resources because there's really no resources to give out at that time. Yeah. And so, yeah. 

Rhandyl: Okay. So he walks in hands you the piece of paper, email. This is what Mattie's diagnosis is explain those first few, moments, days I mean, I know you were prepared for something but you didn't know what it was, and then when you found out what it was, you still didn't know what it was. Yeah. I mean, I can only imagine. 

Alex: Yeah. I was. In a weird way, looking forward to having a diagnosis. Yeah. Just an answer. And then be able to say, this is what we are going to be facing. This is what we need to do. Yeah. Have a plan in mind. Yeah. Planner. And be able to reach out to people that have the same things.

Right. And so when that [00:17:00] happened, I vividly remember walking outside the NICU doors into the bathroom and just falling to the ground sobbing. Yeah. Because there was no true answer and no one to help me in any way. It was even more devastating than mentally preparing for having a disabled child. Yeah. To me. I felt like there was no, even though doctors and nurses can support you from the outside, it just felt like no support. Yeah. In the long run, 

Rhandyl: because it's Yeah. I mean. What do we do with this? Yes. Like where do we go from here? 

Alex: So I was heartbroken just because mm-hmm. I felt like we were still gonna be starting from where we were months ago. My husband and I also had a little bit of differing, views of how to handle it. We handle our stressors day to day anyway differently. But you know, he just thought, okay, we're gonna love her. And that's all that matters. Where again, my planner side is what about the next weeks, months, years from now.

[00:18:00] Yeah. Yeah. And that's where I went also for my boys that it turned into now what for them as well. Yeah. And so that was. It just hit in many different directions of how long am are we gonna be in the nicu? What does our future look like? How do we plan from here? A million questions. And that's what was I think, the most scary and devastating of it all, of not having an answer.

But the first thing I did, I think that most people do is Google. Oh, yeah. Whatever's going on. What they tell you not. Yes. So I did, and very few articles came up. Very few stories came up. There's a, I guess you could say sister syndrome, which is KAT6A and so there's about 500 kids with that syndrome. It's very different than Mattie's, but mm-hmm. there's more research. And so that led into the foundation that they have established and having a [00:19:00] families that you could reach out to. Yeah. 

But initially I just. Instagram, Facebook. Googled or did hashtag Yep. In her syndromes. So I did #KAT6B or #lissencephaly or hashtag, 

Deonna: does she have lissencephaly as well? 

Alex: She does, yes. Yeah, she does. 

Deonna: Which we've talked about before. That's no folds in the brain, right? 

Alex: Correct. Correct. Yeah. So just started off with that. And then worked my way into finding other parents that had KAT6B and then it was just a message on Instagram or, 

Rhandyl: man, it's awesome how, I mean, social media can connect. I think a lot of people don't understand, like what's this whole hashtag thing? But it is, so, so great to search for and find, it's like grouping all your problems.

Alex: Yeah. The moms I'm closest to, they, that's how we found each other and I would,

Deonna: have you met any, have you any of them in real life or anything? 

Alex: Yes, I've met three, so that's cool. In Fort Worth Abby. Oh, [00:20:00] wow. Moira, who's in Austin, and then Everson, who's in Cincinnati. So I was able to meet those little kiddos with the same syndrome. And the problem with Mattie's syndrome is there's a vast scope of these kids, some are a lot more high functioning than others, or you have some , more medical disabilities on top of it. Yeah, some, Mattie is on the more severe end. So hers is on, it's called exon 18 to the end of the gene. And typically what's affected later on in that gene is more severe. So she's on exon 18 of 18. So she does have more of the severe side of the syndrome as well. And it does affect her quite literally, head to toe. 

So, like you said, what were our next steps was really just finding all of the different specialists. Yeah. We were in the NICU for six weeks, so really not terrible. But I remember [00:21:00] leaving there and 

Deonna: only a medical mom would say that. Yes. Yeah. We were only in there six weeks. That was like easy. 

Alex: Well, and leaving there, oh my gosh. She did say they give you, your next follow up appointments and we had 11 specialists, 11 appointments to have just walking out the door. Oh yeah. And so that was just the next steps was meeting with each individual specialist, doing a new assessment workup and just getting started on what we needed to do care wise. A big thing too was trying to get insurance for her, getting Medicaid for her specifically. Mm-hmm. So I could go back to work.

I could have someone taking care of her, having supplies ordered, equipment ordered. 

Deonna: All the things. All the things. Oh yeah. So getting our life in order. And just that's like the hardest process at the beginning. Like you're so overwhelmed and then you're having to fill out all that stuff. It's so stressful.

Rhandyl: There's so many loopholes. 

Alex: Yes. And I wasn't, I mean, don't get me wrong, I am was scared, leaving the hospital with a child that I didn't really know as [00:22:00] well and how to handle, and I didn't really know what the future was gonna hold. Yeah. But it was more of the. Insurance and the mm-hmm. planning and the day to day, the ins and outs of how our day's gonna run for was what I was scared of versus actual care for her. Yeah. I could manage that. It was, yeah, it was all the others that, how to fight insurance wise, how to fight for what we needed and how resources. 

Deonna: I was gonna ask you, 'cause you said the doctors didn't know as much. Do you, I mean, have you talked to doctors now that you feel confident, trusting with what like her prognosis is or stuff like that? Have you guys had any conversations like that? 

Alex: We have had a mix. We've handled some situations where I've gone into a neurology appointment and they're saying, okay, what's her syndrome like, let me google that real quick. I've never heard of that. And so when you say read it her chart before you walk in this room. So I've had that. It's very hard, 

Deonna: like we're leaving right now. 

Alex: [00:23:00] Yes. And then I've also had the others that I'm gonna look at her as Mattie, and I'm not gonna compare. The other kids that I've seen and yeah. Handle her as she is. I think a lot of times, especially when you're dealing with a rare syndrome, a lot of doctors wanna group you into something else. Mm-hmm. Well, I haven't seen it with, these last a hundred kids I've seen, or that's super rare. I don't think that's what it is, where clearly she is rare, so we can't go off of what you've seen by a textbook or what you've seen by your last handful of kids. So 

Deonna: I can't believe there's three in Texas. That kind of blows my mind. Yeah. So it's helpful. So it's nice for you. 

Alex: We've gone through, like I said, a lot of specialists here, but then we've also gone to Cook Children's, we've gone to mm-hmm. Scottish Rite We've gone a different specialist that might seem the more rare side or more severe side of things. Yeah. But right now we're just handling it area by area, specialty by specialty and seeing Yeah. What she needs herself. 

Deonna: [00:24:00] It's good to get the second and third opinions. We've talked about this before and a lot of parents get afraid to go get that second or third or fourth opinion because they just don't wanna hurt someone's feelings or step on someone's toes. And I know you don't care about that stuff. And I mean, me and Rhandyl don't either. It's just, yeah, you have to do what you have to do. And it's like a huge pain in the butt to even go get a second opinion. Like the insurance alone is a nightmare. But Yeah. It's worth it. It's worth it, i, but it's so hard. 

Alex: Agree. 'cause that was a big issue with neurology for her. They didn't really wanna listen and they wanted us to wait and see what happens. A big risk for her was epilepsy, with all her brain malformations. And they wouldn't medicate. They were saying, we don't even need to do an EEG. Mm-hmm. Even though her brain looks the way it does, it's. She has multiple malformations and and they wouldn't do it. And I fought for it. Fought for it, and finally when she started having seizures, I was able to say, this is why I needed it. [00:25:00] Yeah. And so you have to, fight for it or go see other opinions and see what's best for your own child and you as a parent. 

Deonna: Oh yeah, for sure. 

Rhandyl: And it's, I mean, I say this, I feel like every time we talk to a caregiver, but advocating is so, it's a learned thing. It doesn't just come natural. At least I feel like that, especially with your medically complex kids. But it does, it sucks. But then, you get to a point where you really don't care. Like it's your kids' health is what matters. And, you, I think you just know at least for me now, going into a specialist or any doctor's appointment, and if they don't have, their ducks in a row and they just walk in blindly and want me to explain her medical history, I'm like, no. Yeah. I don't have time for that. Bye. Yes, very much they're leaving Uhhuh. 

Alex: Yes. I'm like, then you're not gonna be able to help me anymore than you were before I saw you. So. Right. 

Deonna: It definitely turns you into being [00:26:00] like incredibly feisty. We've talked about this so many times. But all of us are so, I don't know, I don't know the right word, but very feisty.

Alex: Yes. Protective. 

Deonna: Very. Yeah. 

Rhandyl: Okay. So Alex, how do you handle the stress of everything? And on the flip side, how does your husband handle the stress of everything? I mean, you're not just having to juggle Mattie. All of her medical complexities, you have three rambunctious boys that you're having to wrangle as well. So, 

Alex: I think that's the hard part I think, just being a mom in general, you have a hard time separating and taking care of yourself. Mm-hmm. I think, like you said, since I do work full-time, have three boys, I try to do a good balance, but it's just hard. Not gonna lie, do a lot of therapy. That kind of is my time to vent and get it all out. Yes. [00:27:00] Having friends obviously reaching out to you two and, we have a lot of other friends in the same situation and same journey and so being able to really say how you feel and not feel like someone's gonna look at you sideways for it. Yep. That's helpful. 

Just, I think I have a hard time of. Again, I think just being a mom in general is you feel guilty putting your time elsewhere. So whether it's taking care of your home, taking care of the boys and not Mattie, or on the flip side, telling my boys, hold on, I have to take care of her first. Yeah. Just the balance across the board is hard. So I've been trying to work on taking better care of myself, whether it's just watching shows, getting out of the house, even when I do my grocery store runs, not having a kid and tow just some free time. That's all beneficial, but I am still working on it day to day 

Rhandyl: mom, guilt is not gonna lie, is so such a real thing.

Alex: It is very, it's bad. Very difficult. Yeah. So, yes it's been hard to [00:28:00] balance. Like I said, my husband is very laid back. He is relaxed. He doesn't let a lot get to him stress wise, and so he just takes it day by day, which. I wish I could be that person mm-hmm. and do that, but that's just not how I've ever functioned.

Yeah. So we, even together, I think that's been a hard thing to marriage wise is, I mean, I remember coming out of the ultrasound knowing we're gonna have a very long journey ahead of us, whatever that looked like. Yeah. The first words out of my mouth to him were like, what about us in our marriage? And what about our boys? Mm-hmm. Mm-hmm. And so that was what was scary. I know that it can be very difficult on marriages, it can be very difficult on families as a whole. It can be stressful on siblings and having that balance of them not ever feeling like they're not priority for the day.

 You try to make it to everything that you know they're involved in and be Oh yeah. Fully invested, but. [00:29:00] When you have a disabled child, the day doesn't always go according to plan. Nope. So I think that really just putting our time and having that good balance as much as we can Right. Being involved with our boys, and we do try to take Mattie everywhere we go. Try not to make it, were, we missing something for them because of her. Mm-hmm. Um, Even if that, does sound bad, it's just we're trying to put them, especially when they're so little, they, want us to watch everything be there. Yeah. And they don't get it. So just trying to show up for them as much as we can. 

Rhandyl: Yeah. I, I admire that one of the first things you said to your husband was like, what about us? And like the boys and for me and my. Journey with this disability world. Remi was our first. Mm-hmm. And so I was thrown into it. But , you had a disabled brother. And so I assume, that's probably where your brain was going when you said those [00:30:00] things. Yes. Um, So do you wanna kind of, yeah. Tell us a little bit about your brother and 

Alex: So my brother is Luke. He had a golf cart accident when he was nine. He was driving a golf cart and it flipped. And he had his head had a traumatic brain injury and anoxic brain injury. And really went from being a perfect, totally healthy, normal little boy to having total care. He was nonverbal. He had a trach for a while. He had seizures. He was G-tube fed. Very, just an opposite. Quality of life when it comes to what he came from. Yeah. And so I was also a nurse at the time of his accident, and so I was able to actually be his private duty nurse as well as sister and so I learned a lot coming from that world. I had also been. From just family wise, my mom was very sick when I was [00:31:00] growing up, in and outta the hospital with her. She passed away when I was 12. And then with my brother, just been around the medical scene and therapy and just how it shapes you Yeah. As you get older anyway. Oh, yeah. 

And so, taking care of him, it taught me a lot of just obviously the hands-on care that he needed and then also what kind of therapies were involved and how much really goes into the day to day of taking care of him. It's not just, here's your meds at this time and that's it. It's, there's a lot of factors that go into it. Feeding schedule, med schedule therapies, doctor's appointments, just like we said, quality of life and Yeah. Yeah. Going to have your day and the world around you doesn't stop, unfortunately. So you have to, pay your bills. 

No, and I have. Two little sisters as well. At the time of my brother's accident, they were 12 and 10. And so also seeing that dynamic, even though I was older, just how it affected me [00:32:00] as his sister and how it affected my little sisters as well. And so that was, where, like you said, my mind went of what is that gonna look like for them? Yeah. Um, For my boys. And so I want them to experience the day knowing like I love them just as much. Mm-hmm. And they never have a shadow of doubt that they're still priority. Even though our family dynamic doesn't look the way that you would expect it to, that they are well taken care of, that they know we love them, but I also want them to grow up and be better boys because of it. Not that I always wanna use, Mattie as an example, but I want them to be aware of the people around them and mm-hmm. care for others and respect others and really have a good heart. And so I think it's a hard balance. You probably hear me say that a lot. 

Rhandyl: That's gonna, I think that's gonna probably happen naturally for your boys. Like being, I mean already being big brothers too. Yes. A little sister, but then on top of that, yes. Her having [00:33:00] her disabilities I'm sure you've already seen it over the last few years. I'm sure. Because my son, he's three and I already see little glimpses of him. Just having that, I don't know, taking like a caregiver role, if that makes sense. Mm-hmm. I don't know. So, yes. 

Deonna: Like the video of him pushing her in the swing the other day, that was the cutest thing ever.

Well, and I think that you, I mean, I see which one of your boys is like really taken, has one of 'em, one of them's taken. Tommy. Tommy, yeah. Yes. My oldest. And when I see those videos or pictures of him, it's like he gets it. He knows she's different and is gonna need a little extra, attention and care. I think he gets it, he does. And it's so cute. 

Alex: Yes. , he was two, when my brother was still alive and he would push him in the wheelchair, climb up in his lap. Just talk to him you know, kids are. Way [00:34:00] better at talking to children with disabilities or anyone disabled that, for that matter, any adult.

Deonna: They're not afraid. 

Alex: No. And so he had that in him from the start. But he, to this day, I mean, the other day I went to like to shower and I was like, can you watch your sister? And he got her to sleep for me. Like, I love you so much. Yeah. And he, and then at school, he was talking to his friends and one of them did say like, what's your sister's name? That That doesn't talk, that doesn't speak. Mm-hmm. And can't walk. And he said it was in front of his whole class and he just didn't really wanna, explain it at that time. Yeah. It's very, he likes to talk about her, but you can tell he doesn't like the attention all the time when it does come to her. Yeah. And his response was, well, she does talk, she just talks to me in a different way. And I'm like, that's such a, sweet response from a 7-year-old. Um, Yeah, it is. So he's always had it in him. , he's not embarrassed by her. But they do have to grow up fast.

I remember when our first nurses came mm-hmm. to start [00:35:00] taking care of her. He's like, okay, if, if she turns blue, then that's an emergency. And I'm like, Aw. It's just, it's sweet. But it's also kinda like, that's sad that he has to know this already. Yeah. Mm-hmm. Um, you know, It is he knows even my, one of my five year olds, like I went to the grocery store, came back and he's like, I cleaned up Mattie. She was spinning up and I took care of her. Aw. And so, a lot of things that you wouldn't have to normally tell your children how to do or, but they sounds like they take it on and Yeah. They know that it's the right thing to do and they're protective and

but it is hard to explain at times because. Now that they're getting older, plus she's getting older. It's been a hard thing to explain because there's not answers for everything. At first they'd be like, why can't she talk? And it was, well 'cause she's a baby and then now Oh right. Or why can't she walk yet? So, you have to be a little bit more honest, I think, about how you approach it and Yeah. But at the same time, little minds are thinking, okay, well when [00:36:00] she's five, she can, I'm like, well, not, maybe not yet. So they know that. Yeah, maybe. Yeah. She, she'll be wheelchair dependent. She's nonverbal so there's a lot of things that, two year olds her age obviously can do, and we're just having to explain that. She's not very, so. 

Deonna: Well, it sounds like they are really great siblings to her. I can just tell by looking at the pictures that they and as far as the mom guilt thing, 'cause I go through that too, but I feel like if you have an awareness of trying to treat your kids I mean, it's not always gonna be equal on the amount of hours.

There's no way, I mean, it's impossible to make it perfectly even. We all know this. But, I feel like if you have an awareness of it, like that's how we've talked about this before. But I mean, if you're aware and you're trying to be like 'cause every time I tell Cole he'll be like, mom, come here and I'll be like, just a second.

I'm doing, x, y, and Z for Allie or whatever. And I cringe internally every time I tell him Just a second. Yeah, I gotta [00:37:00] do blah, blah, blah. I mean, I probably say it like. 70, 80 times a day. I mean, honestly, like I do, but you know, like I feel like if you're trying it, it's gonna be okay.

They're not gonna have any like horrible child trauma from us. But it is hard, like they have to grow up overnight. I mean, my little cute second grade boy, went from being a little innocent kid to like adult conversations within a few days. I mean, that's just what it's like when you're the sibling of a And you went through that, like even, I mean, you were older, but I mean, you even went through that as a sibling. So, 

Alex: yes. It makes you grow up really quickly. I don't wanna take their childhood away, but at the same time, yeah, I do rely on them at times and it'll just get more that way as they get older. 

Deonna: Yeah. No, I get that. So what were or are some of the hardest parts about caring for Mattie and her diagnosis?

Alex: Just unknown of what the future's gonna [00:38:00] hold. It's a lot of, yeah. We get told from doctors a lot of, we just have to wait and see and that doesn't always go well with me. You're an oldest child. It doesn't go well with me either. 

Deonna: I'm like, just tell me what's gonna happen. We're all oldest child. Yes. Yeah. So, oh, you are too Rhandyl yeah. So that's chill. 

Rhandyl: Yeah. I hate it. I hate whenever, I remember them telling me that with her airway for the first two years. And then that's when I finally was like, I'm tired of that answer and sought out the surgery that she had. Mm-hmm. And all that. But yeah. I hate when. No time will tell or Yes. Yeah. 

Alex: Yes. And so that's been a really difficult challenge. But like I said, she has affected head to toe. We see neurology because she does have epilepsy. All the brain malformations. We see ENT because she has a small airway, she's had multiple surgeries just to help open the airway. She just got off oxygen full time. She was on it for about 20 months that was [00:39:00] exciting. Continuous oxygen. Yes. It felt like a big. Just step forward. Yeah. Yes. When I feel like we were just at a standstill for so long.

Then she has two asds actually, so we are gonna need open heart surgery here in the next few years. So we see cardiology both kidneys are affected. So we see nephrology, we see urology. Ortho is a, all the ologies. Yes. Ortho is a very big one for her. She actually is missing both of her kneecaps. And so she also has severe knee contractures in both legs, so she can't move her leg more than really past 90 degrees. So we see ortho, we see physical medicine, rehab, we see a lot of different. Neuromuscular specialists Yeah. That are all involved. 

Everything from even how her teeth come in is different. So we still see dentists, but just in a different, Yeah. Reason I guess, than normal. And so there's just a million different specialists and we do physical therapy, occupational therapy, [00:40:00] speech, and then also vision. And we do it with two different agencies. So she's got a busy day. 

So it's really again, finding what works well for her, because a lot of things, especially equipment wise, they'll say, well, this is what I did for my other children that I take care of. Or, this is usually standard what we order. Well that doesn't work for her. So it's a lot of trial and error and it's a lot of. Fighting with insurance and a lot of Oh yeah. Fighting for what you really need. Just day to day. Like she's too big for market strollers and assistive devices or, bath chairs and things like that. But then a lot of times she's too small for medical grade. Yeah. And so, or it just doesn't fit her from how her body is. Right. So that's challenging because you can't just make a phone call or see who you need to see. Nope. It's a lot of battle in being an advocate for yeah. 

Rhandyl: Now I get it. Did she come home with a G-tube?

Alex: She did. [00:41:00] Okay. So like you, I didn't want to just keep battling the, she was fed by an NG tube. 'Cause she couldn't swallow and take a bottle and. I think a lot of people sometimes are like, I don't wanna just go straight to G-tube or, we'll see. Time will tell, but I was comfortable taking care of a G-tube. I knew that really was, she wasn't gonna be taking a bottle tomorrow kind of thing. And so we got it placed about a month in. Okay. And just knew, I'm like, if that's our ticket home, then yeah, we're getting that. Exactly. So yeah, she's been G tube fed since day, I guess Really a month old, but day one. And she does not take anything by mouth. So we're, we know that it'll be that's how her care will be on out ll Gtube fed. So mainly our speech is due to secretions. Not really having aversion, just being able to tolerate, her congestion and everything right now too. 

Deonna: Right. Lots of suction [00:42:00] and stuff.

Yes. Yes. So what were some, if any, positive, unexpected, or surprising moments that you guys have had throughout your experience raising Mattie? 

Alex: I think initially is meeting your little community, having some of the best friends you can have and people that really get you. I think it's very isolating to have a disabled child, let alone one with a rare syndrome. It's tenfold Yeah. When it becomes that way. So having these close friends that I can lean on, it's very different than maybe the friendships I've had previously. And they're very supportive, but in different ways. It's just a new level of someone that really gets you.

And then with her really taking. Big stride and what the little things she can do. And it's crazy how much joy that brings you when it's just something very small. Like when she just first giggled for the first time, like that's life changing. Oh yeah. It's something I cried and cried 'cause I didn't think [00:43:00] would ever happen.

Just, I think having even as much of a quote unquote normal day, like that's a big accomplishment and you don't take those moments for granted. And so really just being grateful for all the little things. And like you said, like the relationships with my boys, with her, really soaking that in and. Just when she's happy, it just really makes your day. 

Deonna: Yeah. Her little smile pictures are the cutest thing ever. Oh,

Alex: she does have the best smile ever does. 

Deonna: She's I'm a little biased, I'm gonna die. I agree. She sure does. No, they're so cute. I'm like, every time I see it. 

Alex: Yeah. With this syndrome, I will say they are happy. They are very happy children. And that makes, that's good. Her quality of life really good. Yeah, for sure.

Rhandyl: Okay. So what would you say or who has helped you the most since Mattie's been born? And then on the flip side what has helped Mattie the most? I.

Alex: Again, for [00:44:00] me, like just the community and having the, like people that I could reach out to, because especially with the syndrome being so rare you find your resources from what other people have trialed and so mm-hmm. being able to ask those questions. What worked for you, what didn't, who helped you? And how did you get things approved That for her care wise. And then of course therapists being very involved with therapy for her. I try to do the most for her that way, but also I think that I don't want that to be her complete life Sure. And day. Yeah. I want it to be a very good experience for her. I don't ever want her to have these aversions or not do the therapies or where it becomes where then she's not, a happy little baby.

And so I think having that balance of the appropriate therapies for her physical therapy has been. I mean, immensely huge for what she needs. Because again, with that, for just quality of life, I've always just said that I don't expect her to [00:45:00] walk, really ever, I don't expect her to say words necessarily to me, but I expect her to have a great quality of life. No matter how that looks for her. And it's us as a family, so. I think just having the right resources when you need them and also knowing when to back off and knowing it's okay to take a breather. Yeah. Yeah. Those are all been. Key points in how we've been raising her and taking care of her the last few years.

Deonna: Well, and people may not think y'all know more about this than me, but I mean people, I remember when Allie started doing physical therapy, initially it was like, okay, we have to have, gain her neck strength back or whatever. Like we had these like goals, but now you're like, we have to stretch her because of things that people might not think about. If you don't, and this is maybe not even specific to Allie, any kid who has like disabilities where they're not moving on their own. If they get too tight, you can't dress them, they can't sit in the chair correctly. There's things that people don't think about and you [00:46:00] have to do these things even if you don't think your kid's gonna walk or whatever the case may be. The therapists still have to help you just even get them stretched out where they can do basic stuff like that. Get dressed, yes. Get simple. Way more complicated. 

Alex: It is. I mean, even just the clothes I buy for, I have to think about how her legs, are, and 

Deonna: she's a style icon. Every time I see her outfit I'm like, I do, they have that in like a size 16. I could maybe do it. Maybe 

Alex: we're used to just dressing boys. So 

Deonna: Now you get to I'm little girl. 

Alex: But yeah, there's so many things that, that the fun part, your day to day goes into thinking like just we had to try to get equipment for her to have just normal, sitting position. 'cause I, she was laying on the ground too much. Mm-hmm. And but you can't just prop her up. No. You know, And so that's the struggles for us is really just the inbetweens of like during therapy and appointments, it's just how to live at home. That sometimes can be the hardest balance.

And I [00:47:00] think as a disabled parent, you. Find a lot of unconventional ways to Oh, yeah. To take care of your kid. Yeah. It's not always, I guess, quote unquote the safest when it comes to how you're supposed to do it, or the right technique or what you've heard how to be, parent wise. Make what yeah. You just have to make it work and whatever that looks like. And I think that's, I think I'm that way as a mom anyway. I'm like, whatever is easiest for you and your family, go for it. And so, especially now having disabled child, it's made me a little less uptight and a little bit less structured and just kind have to figure it out as we go. Yeah. I get that.

Rhandyl: Yeah. You definitely have curve balls and I laughed at, oh man, you're, when you're in the face, I know you're like, you're thankful for those quote unquote normal days when there's no. Curve balls that are thrown. Hiccup. Yeah. It's those are, but then we, so good days. You're like, today was easy. Yeah. 

Deonna: But then we're like, so superstitious. We won't admit that it [00:48:00] was a good day or a normal day. You don't wanna say it. Then you'll yourself and then, and 

Alex: you could do the same exact thing tomorrow and it could be a cluster of the day. Oh yeah. And you're like, I know. Wait, what just happened? This is, I know. I did nothing different. It's, 

Deonna: they like to mess with us, I think. Yes. Little stinkers. So what would you tell a parent whose child just got a difficult diagnosis? It's unlikely that you're going to be telling somebody who has the exact same one as you because of how rare it is. But I mean, just a difficult diagnosis in general. 

Alex: Try to get any connections community wise that you can, whether it's the exact syndrome or not. Yeah, there's a lot of different subgroups and, different specialists and different communities that can give you some guidance and help and just listen to you. But also know that it's okay, not, just struggle. And it's okay to have hard days. I think that, especially as a mom, you try to be on top of [00:49:00] everything and it's just, you can't do that day in and day out. You're gonna, break down. And so I've had to realize that it's okay to say that I'm struggling, that I'm sad, that I'm angry at the world today. It's a hard journey and I've had to realize that it's not gonna be fixed clearly tomorrow. And so no, knowing that, the years are gonna be hard and long, but you can ask for help and I think a lot of people don't really know what to say to you. And just know that if someone is there and expressing any kind of help or support, do take it.

I'm not the best at always accepting that help. But it does come in handy and it gives you a little break and 

Rhandyl: yeah. You need to reset as a parent. That's hard part. Yes. Is just accepting. I mean, it was for me, yes, it's for sure it has not been easy accepting that I can't do it all by myself, but yeah, because I'm that type of person too, like I feel like I can take it all on and I've. Very quickly [00:50:00] realized after the first couple of years that if I was gonna stay out of the funny farm that I had to accept. But it's hard. It's hard to let go and trust. But no, I think that's great. 

Deonna: It's funny because I like swung the other direction. Like at the beginning I was like, oh, I don't want help from anybody. I like didn't want day nursing, all the things. And then now I'm like, can y'all just do every single thing? I don't wanna do anything like, y'all just do all the sucky medical stuff and I'll just be your mom. Mom. I don't wanna do anything. 

Alex: It is, it's hard to separate the two. No it's very hard to separate. Just because that's not really what our days look like, so. Yeah. 

Deonna: Well, and like what you were saying about the sibling thing earlier, it's like with Allie, I'm having to split between the medical nursing type side of me and the mom side. So she's getting like half of that. But sometimes in my son's. View of it. She's getting like all the attention, even though half of that is not the mom. You know what [00:51:00] I'm saying? Like half of it, it's not the such a mom attention. He gets all the mom attention from me. That's like the only thing I have to do for him is be his mom. But I just, I think about that a lot. How that's perceived by him? Probably. But actually a lot of it is not mom stuff. It's just the medical mom side of it, which is very different. 

Alex: Yeah. No I have to kinda take a pause sometimes and separate the two. 

Rhandyl: Yeah. I remember I think Remi was about three, whenever I finally realized I had to make that 'cause we spent so long in the hospital and I worked so hard to make sure that I could do everything medically for her. And that I felt comfortable. And then that was like my big focus. And then with all the therapies, like I felt like I needed to be like right there involved. And even when she wasn't having therapy, I needed to be doing therapy on her. And taking that whole role. Yes.

And then I, she was probably [00:52:00] three when I, when something clicked and I was like, you know what, like I just have to step back and just primarily try to take the mom role. And it helped whenever we finally had like a good nursing system set up and good nurses. Mm-hmm. And trustworthy. It took time and it took time to find that and know what I was looking for and what she needed. But I think that's been the best thing for me. Me as a mom is just being able to step back from not necessarily the caregiver role. 'cause don't get me wrong, I still have to do all that stuff all the time. But yeah. Make, try to not make that my priority with Remi. 

Alex: Yeah. Yeah. So we have nursing just while I'm at work. Yeah. And that is beneficial. But I've been struggling a lot with not feeling like I'm involved with her care. Sometimes I'll be able to make a therapy appointment like didn't even know she could do that. And I feel so much guilt when I see her do certain things or, I'm not [00:53:00] as involved as I feel like I should be. And then, like you said, when you're home, you feel like you have to be working on things with her. And I've tried to be, when I'm home, I'm not doing really any therapy or the weekends she gets toted around wherever we're going. Yeah. And I get to just snuggle and hold her and go to the boys games.

But we are making a big, change in our Yeah. Family dynamic. We decided as a family that, well, maybe I pushed it a little bit too, that because I am a nurse, I'm at work every day and I'm I could be doing, I could be taking care of her. And I just, sometimes it doesn't make sense in my mind that I'm leaving her to go take care of others and not be taking care of her. And so I've struggling a lot with just feeling like I'm not raising her and, my boys went to daycare, so you have that struggle then too, I think just with any child sometimes if you're not a stay at home mom, you feel guilt either way. Oh yeah. But I've just been feeling like I'm not as involved as I would like to be and [00:54:00] I'm. Stressed and tired.

And so we are actually gonna be moving to Ohio. It's one of the few states that'll allow me as her nurse to be her private duty nurse. Right. And get paid that way. And that way I'm still making an income 'cause we need that. And, I'm still able to provide for my boys 'cause we need to be able to, both work, but then I can be hands on. You need to be. Yes. And like we can be hands on with her or I can, and I can also still attend, my boys activities and things because that'll be nice.

Right now all my PTO day to day goes sick leave goes into her appointments and yeah. It's not for anything, for a trip or Yeah. To be there for my kids. It's, yeah. And so I am ready to see how that changes, might be hard to switch out of mom nurse mode, but. I'm ready to be more hands on all around.

Rhandyl: So, I mean, I'm excited for you. I'm really excited, but I like why Ohio 

Alex: first is the hospital. Cincinnati Children's is great. [00:55:00] Yes. Being out in Lubbock, even though we do have great resources, 

Rhandyl: it's not the pediatric capital. 

Alex: No, it's, and we don't even have a pediatric, we have to drive far. We No. And she has, if she had to be admitted, I know we'd be flown out. Yeah. The next day. I did many, there was times I was going to Dallas every two weeks and I was driving there and back, oh, I 12 hours round trip just to get an appointment in and not be away from my kids and not using all my PTO for work. So, they have all the specialties and could take care of her in one setting.

Like I said, she needs open heart soon. She needs ortho reconstructions, soon. We just don't have all, like you said, all the resources here that. Yeah. Unfortunately she does need, and then being able to be her nurse, very few states allow Yeah. The parent to be the private duty nurse. Texas is not one. No. Unfortunately. And you can get it together. Yes. And so, there's some other states, but they had higher cost of living and with us being a family of six didn't always work [00:56:00] out. Yeah. And so Cincinnati seems to be like a very good fit for our boys with a lot of activities, easy, to get around good cost of living and then having all the resources that she needs. So it just a change for us. Yeah. Family wise. So that's a big move. Yeah. So that's, I'm Scared's coming up soon, right? Yes. That's the plan. Hopefully this summer. 

Deonna: It'll be good. That's I'm interested to see what you think of Cincinnati's Hospital, just like what it's like and what they do and Yeah. Because I've heard good things, so that'll be interesting. Yeah. 

Alex: Biggest thing, just like a centralized plan of care. Oh, yeah. Not having to explain myself every visit to every doctor. 

Deonna: Yes. Or they all know each other. 

Alex: I feel like I'm always repeating on what meds she's on. Or just what the newest thing is that she's doing or not doing and and I feel like that'll be a huge, it will, that'll be relief. And 

Deonna: it's like me and Rhandyl Drive to Texas Children's, which is in our same state, but it's so far away. I mean, it's like a 10 hour drive. Yep. Yep. And [00:57:00] I do love how, like you're on MyChart or whatever, and it's quick. Like they, they get back to you and they all know each other and things like that. But yeah, like being in the same. Town as everybody knowing you'll get hospitalized there if you have an issue. I mean, that's a huge piece of mind. Or 

Rhandyl: that would be nice. We almost moved to Houston. Before remained discharged. They were really pushing for us too. 'cause at the time she was on such high ventilator settings that no one was comfortable taking her on here. As a primary care. And there were a few months there that we were. Like making that plan. And then things changed and we had a doctor be able to take her but we had to get on certain settings, so that's why we were prolonged there. Yeah. Inpatient for so long is just to get her to more comfortable settings and it was just a matter of her growing. And so, but yeah. 

Deonna: I think a lot of people do move to where do their child, I have a [00:58:00] lot of friends like Houston or places like that. Like they just,

Rhandyl: I have a lot of friends that move to Houston.

Alex: Yeah. And I mean, that was our next, she'll have to have her open heart. That's where we're gonna have to go. And I don't understand how I can do it with three boys here and Yeah. Need to do pre-op appointments and a long inpatient stay. What if there's complications and, I just, when I was thinking about it I can't see how this is gonna work for us. Yeah. We don't. A lot of, I have my sisters here in town, but they're the one just graduated and they're about to move and do their own thing. Yeah. They, and so besides that, they can that come see you? We don't have, yes. Like family support. Yeah. Here and like resource, just someone that can just drop in and help us and so yeah, it was hard to, for if we're making all these trips and how are we gonna do it, it seemed like a better idea to do it somewhere centralized and have the resources 

Deonna: they have like professional sports teams and I mean, just, it's a neat town probably. Yeah. I mean there's so many fun things that your boys are going to be able to [00:59:00] get to do for the first time, or, well, maybe not for the first time. I don't know every detail of y'all's life, but, 

Alex: but that was one thing too, is just being able to travel as a family. We're so far from anything really mean. Dallas isn't far, but for a lot of people, yeah. Four to six hour drive is far. Yeah. And so I'm like, just be able to do family trips that there's a lot of places closer in town and Oh yeah, we still have those memories. I didn't really see us being able to do that here as much. Just with what? Yeah. The accommodations that she's gonna need. So it was a lot of factors that went into kind of picking where to go. Well, 

Rhandyl: that's exciting though. Thanks. 

Alex: We gonna be, we're excited. Nervous, but 

Rhandyl: Ready. Yeah. It's a big move, but I think it's gonna be positive for sure. I think so. Yeah. So if you could describe what Mattie has taught you, like about yourself through this experience, what would it be? 

Alex: I think that I need to take each day by day and slow [01:00:00] down. And just really be grateful for. You know how she is. Take it all in and realize that sometimes the big things don't need to bother me as much as they do, every day in the present anymore. Yes. And just really taking the moments with my boys as well, with my brother's accident, like life can change in a second. I know that with her too. Yep. And I know that with her syndrome, our future isn't known really what the outcome's gonna be and how long. Mm-hmm. And so just really slowing down and taking in each day with her and not taking any of it for granted.

Deonna: I love that. Yeah. I feel all that too. Same life can change in a moment whether they've, like life can change in a moment whether they've been here on this earth already, like your brother or Allie. Or just in utero. I mean, we all have those bad mo memories of when things changed and it's, yeah.

It's tough to live [01:01:00] in the present though, when you're always thinking about what's next. 'cause we always have to plan 10 steps ahead for their safety. So it's tough to live in the present or I feel like it is at least, 

Rhandyl: yeah. It's a conscious thing. Like you have to just, I feel like for, at least for me, like I have to. Consciously, remind myself. Me too. Very much all the time. Very much so. Curse. We did enjoy this. Being oldest kids. 

Deonna: Yes. I think I wish I could be like your husband, like that type of person who just is oh, it's all good. Let's just take it as it comes. I'm like, I will not take it as it comes. No. I wanna know what's gonna happen. 

Alex: Causes me more anxiety to be honest. I'm like, no, we need to stress about this today. Or, but we a good balance of each other. You me. 

Deonna: Yeah. Attract it. Maybe it's a good, yeah. Me and my husband are both planners, so sometimes we can both get really uptight about something and I'm like, okay, one of us needs to chill because it, like we're freaking out.

Rhandyl: Well, Alex, we thank you so much for telling your story, Mattie's journey, your whole family's [01:02:00] journey. We have been wanting to talk to you for so long. We're so glad that we're finally able to make it happen. And you're still local, thankfully. Yes. We need to plan some more, at least one more dinner before your big move.

Absolutely. Um, And we're so excited for y'all's next step and we hope that it is what's best for all as a family and for Mattie's medical care. Thank you. So we just thank you for coming on with us. You're so great.

Alex: Thank you. Thank you for having me.

**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.