Caroline Raising Briella

In this episode of Raising Disabled, we talk to Caroline about raising her daughter Briella who has Cerebral Palsy.  Caroline is the social media manager for our sponsors Altimate Medical and Zing Standers.  

Follow Caroline on Instagram @briellaandme 

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Transcript

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Rhandyl: [00:00:00] Hey y'all. Welcome back to Raising Disabled. Today we have Caroline and , we have known her for a few years now through social media and through our sponsor Altimate Medical Zing Standers, and I cannot wait to finally get to hear Caroline's story as well as her daughter Briella. But first we just want you to introduce yourself, Caroline, and just tell us where you're from about your family.

Caroline: Yeah, my name is Caroline. I have been married to my husband Matt for 11 years. We have known each other since fifth grade. So we're best friends all throughout um, high school, and we have two kids. Our firstborn is Briella. She is 11 years old. She has cerebral palsy. And then our second is our son Brady, and he just turned three.

Rhandyl: Aw, that's a big gap.

Deonna: Oh my goodness. That is a gap. Yeah. I feel like a lot of times there are gaps when your first kid is disabled. , [00:01:00] Rhandyl's talked to me about this so many times. Like you're like. Oh my gosh, I'm not sure if I can go through this again.

And it takes a lot of time to get the courage, or I don't know what you wanna call it, but to try again because of the, how hard it was the first time around. Is that kind of something y'all went through? 

Caroline: Oh yeah, 100%., When you're first born, especially I think with a medical, disability or any medical complexities , and then you go through all the trauma of birth and the nicu and all of that. And then trying to think about having another one. We always knew we wanted another one, but. Really questioned it after, Briella was born first. Sure. Yeah. But they're so amazing together. Briella loves being a big sister. And Brady, he is a handful. He keeps us on our toes. He is all boy. Oh yeah. 

Deonna: I bet. Yeah, that sounds like Rhandyl's kid too. Yeah. Oh man. 

Rhandyl: Yeah, he's funny. Same thing. It was hard for us and for a while we didn't think we would try for another, and it's so funny when you [00:02:00] think back, pre kids, I remember our plan was we're gonna have so many kids back to back. We want 'em to be close in age, blah, blah, blah, blah. And then, yeah, like. was the first and I was like, never again. Not as big of a gap, but yeah, we have like almost a six year gap, so I get it. . 

Deonna: So tell us about Briella being born and just that those those times leading up to her diagnosis. Tell us about how y'all found out that she was gonna have cerebral palsy. 

Caroline: Yeah. So, Briella was born six weeks early. She was born at 34 weeks. Kind of backing up a little bit, we found out in utero at 18 weeks that she had what's called Situs inversus totalis. So it's a genetic mutation. Basically, Briella is very ultra rare. She lives with her heart on the right side of her chest. So basically her organs and her chest are flipped. They're mirror image. Wow. [00:03:00] Oh yeah. So it was like really wild finding that out at at 18 weeks in utero that she had this rare genetic condition. So that's kind of like the first scare, of the pregnancy.

Because a lot of things can go wrong with sinus inversus. She could have, heart deformities. A lot of times with situs inversus, , some of the organs will be in the correct positioning, but then other organs will be, opposite positioning. The way that the veins and arteries and the blood flow all works could be all, messed up.

Thankfully though, she was. Total reversal. So everything worked out, great. She didn't have any surgeries or corrective things. But I was more now then at high risk. Yeah. So we had to follow up and do, , more specialized ultrasounds to check how her heart was developing in utero.

And then it was around 30 weeks, where they noticed that my placenta was basically starting to shut down early and that she wasn't growing properly , in the womb and that she may be coming out early. So that was [00:04:00] another scare. So it was just like a lot of anxiety for my first pregnancy, I felt like I didn't get. To enjoy it just because I already knew, like she already had medical things going on.

And then we started non-stress tests. I think it was around like 32 weeks. And, I went in for a non-stress test right at 34 weeks to the day and they were like, she needs to come out now. Emergency C-section. She does, did not look good. Yeah. So that was like, oh no. You know what is wrong? You know, Every parent's fear. So then she was born, she came out quick. , I heard her cry and I thought, oh my gosh, , sigh of relief. Sure.

So yeah, everything was good. She'd spent, 24 days in the nicu, which was pretty scary. Having your firstborn be in the NICU and just learning, all of the things, it's, yeah. And she went through, , multiple IVs. She had jaundice. She had to be on CPAP for the first few days of her life. She also got staph infections, so that was really scary. [00:05:00] Oh, no. She had blood transfusions. Oh, wow. It just felt like, you know, one step forward, 10 steps back kind of thing. 

Rhandyl: Yeah. The NICU dance, that's the NICU dance. It's always like that. I feel like at least that was our experience too. It was like, positive and then yeah, two steps back, one step forward.

Deonna: Yeah. Like you tell everyone that they're doing well and then they tank an hour later. 

Caroline: Yeah. It's just, and you've learned so much, all the acronyms and just what everything. It's so overwhelming. All the beeps. It's so overwhelming. Like I think, if you're a NICU parent, you're always haunted by that experience just because For sure. So I believe it. Eye awakening, when you're there. And thankfully she was only there for 24 days, but still it was pretty traumatic while we were there. Yeah. Yeah. 

So, so, fast forward like the CP diagnosis. Yeah. So everything was going good. Because she was born six weeks early, it was always the doctor's. Saying let's, wait and see, let's wait and see. Milestones wise. Yeah. And then by like her 11th month checkup, I was talking [00:06:00] with my best friend who is a nurse and she's like, things just aren't adding up. Briella still seems to be very, behind in gross motor milestones. I think she might have cerebral palsy. 'cause my best friend's son was born two weeks after my daughter. And he at the time was already like. Running around and doing all of these things. Oh, and Briellana wasn't even being able to, sit up yet .

And I didn't really know, 'cause it was our first child, we just figured that she was premature, she'd be behind. So we did a lot of the genetic testing stuff first. Because we already knew she had genetic things going on, so we did a lot of the blood work and, ultrasounds and all of the genetic testing, which takes a while to get in and get those results back. And all of that. Yeah. And all of that just basic genetic stuff came back normal at the time.

And then once we did the MRI, the brain scan at 21 months old is when we found out that she had PVL, which is. periventricular leukomalacia, if I'm saying that correctly. Which is basically [00:07:00] damage to the brain from prematurity and being born early, which caused her to have a cerebral palsy diagnosis.

Deonna: Okay. Okay. I was wondering how people get diagnosed with cerebral palsy. Is it something that is really a stereotypical thing that presents itself like on an MRI? I didn't know how that worked. 

Caroline: Yeah, most of the time that's how they discover it is by MRI. Um mm-hmm. They're doing a lot more research now on how genetics that can also play a role on a CP diagnosis. Interesting. Because CP can be like a big umbrella. It's such an umbrella. Yeah. Yeah. 

Deonna: Yeah. I've kind of figured that out from talking to, everybody, but I just didn't know if there was something that all cerebral palsy people. Have in common that shows up on scans or like how that works. Because I have MS and that's how it worked with ms. We all have the same scans. You know what I mean? 

Caroline: Yeah, I think it is a little bit different. 'Cause the cp, it's basically, it's a [00:08:00] brain injury. So yeah, I think you would be able to see it on the MR MRI and like what part of the brain is affected. And then everyone with cp, there's four different types of cp. So Briella has spastic diplegia cp, which spastic is the most common form of cerebral palsy. Spastic meaning tight muscles. And then diplegia for her is her legs, so primarily affecting her legs. So a lot of cases with cp it affects basically your motor movements, how you move.

But there's a lot of other things that go on with cp. A lot of kids and adults have, feeding issues or hearing issues or eyesight and all of that too. So, you say, one person with CP is one person with cp. It just it depends on how severe and what part of the brain is affected right. How that person lives with cp. So. It's all different. That makes sense. Yeah. 

Rhandyl: Okay. So you found out at 21 months the CP diagnosis. I mean, I know a . it's hard to give you any sort of a prognosis, especially that [00:09:00] young. And it's just kind of developmental and then therapies and all of the things. But she is now 11. And like you said, she's mostly affected in her lower extremities, , how does her day-to-day look ? Does she go to school? Is she verbal? All the things. 

Caroline: Yeah, so Briella she'll be attending fifth grade she loves school. She loves, her friend. She does have an IEP through school. I'm thankful for our school district. They're really great, accommodating her needs and 

Deonna: so you said she's verbal. What's that kind of like with her?

Caroline: Well, starting out, she wasn't verbal. We did a okay surgery called Selective dorsal rhizotomy when she was three and a half. And SDR basically, I kind of feel was her rebirth in a way, I would say. Because it helps. To eliminate the spasticity in her legs, giving her more mobility. And a lot of times , when kids have SDR surgery within that next year or so kids just start [00:10:00] talking. So Briella was non-verbal. Wow. Yeah, she was non-verbal. To start, we had like a, AAC device for her. We did a lot of pointing, giving her options using like the AAC boards and things like that. So she didn't really start talking until, I think she was about five, five and a half.

And I totally believe it was from that surgery because the more she was able to, move her body and I guess like kind of create those new pathways in her brain, I feel like, is really what helped her speech wow. So yeah, Briella doesn't, yeah, she doesn't use the AAC device anymore. She's. Fully verbal. It is a little hard sometimes to understand what she says. You just gotta give her a minute. But most people can make out, what she says and, if not my, me or my husband are there, once you get to know her, you'll know and understand. Yeah. That's amazing. But. She loves going to school. She does have an aide. She's in a typical classroom. She gets pt, ot, and speech services. She also does her standing frame standing program at school as well, so, yeah she's excited to go back [00:11:00] for fifth grade. 

Deonna: That's amazing. That's, oh my goodness.

Yeah. I, when I watch videos of some kids and your daughter's, one of them, hearing 'em talk is so emotional to me because the struggle that they've been through to probably get to that point with speech and just all the things, and I mean, we lost Allie's voice for about a year. But hers was like pulmonology related.

It was not, from having spasms or anything like that, but, oh man. Like hearing some of these kids talk and knowing the hundreds and hundreds of hours they put in to get to that point is just like, it's something we don't take for granted. None of the three of us, because, no, we know. How hard it is to get to those points, and so yeah, it's, yeah, it's amazing hearing our kids verbalize at all, really. Yeah. It's just it's a amazing thing. 

Rhandyl: Yeah. , My daughter, she's nine and she didn't start really vocalizing words until probably the last year and a half or [00:12:00] two. And it's. So amazing. She's been using AAC for quite a few years now, and she's doing wonderful with that and progressing. But just to be able to hear her voice, that's amazing. I. I'm not that familiar with that specific procedure. So you said she was like three and a half whenever she had that done.

Caroline: She was three and a half. Yeah. And we so a lot of times with cerebral palsy and kids that have really severe spasticity, there's only certain treatments and things you can do. One of the big one is what we did was SDR, so it's selective dorsal rhizotomy. It's essentially, it's a major spinal cord injury where they go into your spinal cord and they test all of the nerves that fire from your brain to your legs.

Mm-hmm. And the ones that don't fire are the ones that they cut. So after the surgery, it's just very intensive physical therapy to basically retrain, all of those motor movements and milestones, learning how to crawl, learning how to sit and like [00:13:00] all of that mobility and function. But it's. Been one of the bigger successes for a lot of kids and even adults with spastic cp. To give them, just a lot more comfort and a lot more, range of motion and mobility. So we went for that.

We didn't wanna do Botox. There's a lot of new studies coming out about Botox and like the negative effects on, growing muscles and using Botox. How it destroys the muscles over time. The different complications with Baclofen, the baclofen pumps and things like that. Mm-hmm. So we just went right for SDR and it was just amazing for her. 

Deonna: That is cool. I've never heard of that. I mean, 'cause my daughter has a spinal cord injury and we do baclofen, but we did Botox, but I mean, it's expensive for our insurance to pay for that, and my daughter can't feel the injections, but they have said the injections can be painful going into your cabs and like stuff like that.

If you have feeling, and it only lasts maybe three weeks. Like it's not, yeah, in my opinion, it hasn't been [00:14:00] worth it. It did make her spasms go away, but then three weeks later they were back with a vengeance. So it was like, I don't know, it didn't really work for us, but I'm, I must work for some people 'cause they do it. But yeah, that's a neat option. I've never heard of that before and that's awesome. 

Rhandyl: Yeah. So that's background on her medical history. So like you mentioned, the trauma of the NICU and your pregnancy, obviously. Was a lot. What did it feel like whenever she got that CP diagnosis? Did it change anything for you? Was it like a whole nother processing part of your parenting journey? 

Caroline: Yeah, it really was, it was really hard on my husband and I for probably for a good, six months. We got the diagnosis from the doctor and, it was just basically okay, now go live.

And it's like how, how do you do that after. You have no idea what the future's gonna look like and what's gonna unfold. And we were giving no, pamphlets or no support groups or people to talk [00:15:00] to. And it was just kind of a really lonely. Depressing time, that was like definitely grief of what you thought life would be. And now it's completely different. And now we had to learn all of these new things and just basically go with the flow and really educate ourselves on, cerebral palsy and how we can, support her and give her the best life possible.

And that's kind of where I stumbled on, Brielle and me and starting near mm-hmm. her Instagram page and connecting with so many incredible, amazing families that have CP or in the disability community and connecting with them and just, sharing Briella's story and then learning from all of these other families, who have gone through it and are. Through it. And just all of the things out there that we could do that we had no idea, prior, like our doctor wasn't like, oh, you need to do this or do that. And I learned so much, just connecting with these families. And I feel like, and I tell my husband this and I tell, our story.

I feel [00:16:00] like Instagram and social media has truly saved. Us in a lot of ways, and Briella because it's opened the doors for so many opportunities for her and our family. And just really sharing about, awareness for cerebral palsy and all of it. And I'm just really thankful for, to being able to share her story and her journey.

Rhandyl: Yeah, it's pretty crazy , so my daughter's, she's still undiagnosed, but she's been diagnosed with a lot of different things, but not like the global issues that she has. But I remember kind of the same scenario, just send her home and, it was like the most isolating time. And then, like you said, I finally found groups and did so much research and found all these. Things that could help her, that weren't told to me by necessarily her medical team. It was through social media and other families living this life prior to getting thrown into it. And so, I totally agree. It helped me kind of climb out of that isolation, even though it was [00:17:00] via social media. You felt less alone. Yeah. In the beginning. Finally, finding other people that can relate to your feelings and giving you advice about diagnoses and things.

Deonna: So we know that it was really tough initially and we all have had those feelings too. And so how did you guys handle the stress of it? You talked about how you, you know, got plugged in online and. Creating that community with people was helpful. But how did you or your husband or your, extended family deal with the stress? Or how do you deal with it now? 

Caroline: I think it was, a lot in all of us, but it was a lot of just, educating our family too about, CP and mm-hmm.

You know, what she can and can't do and how can we adapt and include her just meet her where she's at and how can we accommodate Briella and just kind of all of that. So I think a lot of it was, one educating ourself. Being now into the disability community and how can we best support [00:18:00] her, but then also educating our family as well and not being afraid to ask for help. I think that's the biggest thing for parents and caregivers is need a break. We need a date night. I need to go get my hair done. Yeah, you have to, fill your cup and you have to have, that emotional support and help from family. I mean, that is so crucial. To surviving this life because it's just, it's a lot. Yeah. It really is. 

Rhandyl: It takes a village. It takes a village, and it truly takes a village. But it's hard in the beginning, like you said, to just finally ask Yeah. And realize that it's okay

Deonna: Yeah. And I feel like you're in survival mode initially. We all kind of go through that time and I feel like it's always because we won't accept help and then we finally can leave that time of survival mode when we finally , become not so proud and allow people to help us.

Family or for me and Randall nursing and stuff too. But yeah, that's. That's a tough one. To accept. Yeah. Do you have [00:19:00] nursing for Briella or anything like that? Like any type of respite or anything? 

Caroline: No, no, and I know, and I see so many families who have, really medically complex kids and, it's so hard where you require nursing, even throughout the night and just finding nurses and, funding for that. And I just, oh, I couldn't even imagine, having to go through, through all of that as well. But 

Deonna: yeah, I mean, me and Rhandyl joke that it's the best thing and we couldn't live without them, but it's also the hardest. Thing. Like we have to recruited our own nurses and hire them 

Rhandyl: live, do all the house 24 7, yeah, we them zero privacy them, but it's love them. That was a huge transition. That's a huge transition. For sure. 

Deonna: Probably the biggest for being honest. Hundred percent.

Rhandyl: So what what would you say are some of the hardest parts over the last 11 years raising Briella?

Caroline: Oh gosh, the hardest parts. I don't know. I always [00:20:00] thought, like back in the day I thought, as she got older it would be easier. But I feel as every year goes on, it kind of, there's like the different stages of life. As I grow up I think it kind of gets harder, but then, I don't know. So this is her last year in elementary school, and then she goes to junior high. So that's a lot of fear of, what's gonna happen next And, yeah.

I think the biggest thing is just making sure that she's always included, in places and just the planning of everything. If we have to go somewhere, well, is it somewhere that's accessible? What kind of equipment do we need I think it's just always, knowing that we need to do so much more for our kids in a, inaccessible world. Yep. Yeah, and just the fear of just inclusion, I think. I mean, Briella is so, social. She just loves being around people, loves, school and friends, and that is my biggest fear for like junior high and high school. When she meets all these new friends, how is that gonna go, oh, so. 

Deonna: Yeah, that makes me nervous too about my daughter [00:21:00] 'cause she definitely knows when kids are not being nice or leaving her out or whatever the case may be. That happened just a couple of days ago. It's tough. I mean, oh my goodness. It's seriously, the most brutal part of this to me is just. Knowing that kids are gonna laugh at her or be mean or leave her out, or not invite her to a party or whatever the case may be. And I mean, oh, it's, yeah, it's tough. I'm, yeah, I'm with you on that one. 

Caroline: Yeah, it's heartbreaking sometimes. I mean, there was one time at recess where she was just like completely left out and was just so sad and she didn't wanna go back to school and, yeah. So it's just all those things, all those extra things that we kind of have to worry about and plan for and even just as she grows are we gonna need to do any other surgeries and things like that. Yes. Yeah. Any other medical things down the road that you always have to, kind of prepare for and plan for. And so it's always something. Always planning and 

Deonna: just [00:22:00] when you figure your life out, something happens. Yeah, exactly. Yeah. Oh man. 

Rhandyl: We can definitely relate to all of those feelings for sure. Yes. Yeah. 

Deonna: So one of the main reasons that we know you is. Because you work for Altimate Medical and the, that's a company that makes Zing Standers, which is our sponsor. And so when we first started this, we met you like formally, I think I was already following you maybe, but. We met you formally because you work for them and we have to, send things to you to get them approved so we don't say anything weird or do anything weird and me Yeah. Which me and Rhandyl have done, but but so how did you get hooked up with them? 'cause they're a really great company. We've had so much fun working with them.

Caroline: Yeah. Well thank you ladies for all your amazing posts. I mean, your girls are just, oh my goodness, adorable. I love your posts every month. , So I guess starting off, like with [00:23:00] Zing one of the big things with cerebral palsy is kids have to do what's called like a hip surveillance program. Mm-hmm. So Briella has to do hip x-rays every six months to a year to monitor like how her hip. Are forming and growing together.

So what a standing frame essentially does, it helps to develop your hip sockets for kiddos who use mobility aids or in wheelchairs and aren't getting enough of the daily standing time that they would need that would Right. Help develop their sockets essentially. So, there's so many other great benefits to standing.

, So Briella started her hip x-rays when she was three and a half. And then three years after she had SDR surgery. We kept following up with x-rays. So when she was six, she had hip x-ray showing that she had significant migration of her hips and that they wanted to immediately do, hip surgery.

Oh man. And I reached out. I was like, no way. Like I've heard all these horror stories about hip surgery and I was just like, I was not [00:24:00] ready to put her through that without, doing a lot of research and just figuring out what our other options were. And when I reached out on Instagram, I actually had a PT reach out to me and she said, well, does Briella have a standing frame? And recommended zing Standers to us. Mm-hmm.

And I said, no. Like I, I know I advocated for a standing frame, which. She was like three, four. And her PT at the time said, I don't think she needs a standing frame 'cause she's been using her walker. But I really wanted her to have a standing frame. 'Cause I was like, it's another, piece of a great piece of equipment that she could use. Yeah.

Well truth was she wasn't walking enough in her walker, to justify her daily, walking and standing needs Yeah. Amount. Yeah. Right amount of time. So she wasn't getting the necessary, daily standing that she should have been getting. She might have only been walking in her walker maybe 15, 20 minutes every day. So, so fast forward to when she was six. I was like, okay, don't wanna go through hip surgery. , This therapist told us about zing. Let's get her a zing Stander and start a daily standing [00:25:00] program.

And this is when the start of, COVID was going on. So we were homeschooling at the time. So it was kind of like perfect, I would get her inner stander for an hour in the morning during homeschool, and then an hour in the afternoon. So she would do two hours of standing every day. So after doing that for about a year, Zing reached out to us in Altimate Medical at the time and wanted to do a standing story with us.

So we did a standing story with Altimate Medical and Zing. We shared our story and how great, doing her standing program has really helped improve her hip migration. So after sharing her story and just really being so passionate about, standing and, how standing can be a benefit for kids with CP and other neuromuscular conditions or disabilities. I really became so passionate about that. I'm like, if we can really share this message about, getting kids in standing frames, how it's really, beneficial for hip development, for respiration. For digestion. I mean, there's so many amazing things that goes into standing. I was like, I wanna work for this company.

[00:26:00] And at the time they didn't really have a person doing, social media and I just found out I was pregnant with Brady. So I was like, this is perfect. So I reached out and I was like, Hey, can I help do your social media and be a part of the parent group and things like that. So I kind of . Fell into it. I do have a marketing degree and I kind of did oh, nice. One year internship and then they hired me on full time. So I get to share all of your amazing kids and their know your guys' stories and how much you guys love zing and how beneficial it is. And yeah, it's just incredible.

Rhandyl: , I love that. And I'm just like, I know we don't post our video, but my jaw dropped when she said that, the PT didn't think that she needed a standing frame early on, so I do pediatric physical therapy and I see a lot of kids with cerebral palsy and that's one of the number one things. If I can tell, that the kiddos are not going to. Age appropriately in the typical timeline. Start pulling to stand and weight bearing through their [00:27:00] legs. That is so crucial for that hip development to get them in an early intervention standing program. And zing definitely advertises for that a lot. They're very great and they make tiny little standards that are so adorable. They're all the way up to adult and so. Mm-hmm. I mean, not Zing brand, but Altimate Medical in general.

But that's amazing 'cause I've heard the nightmares and seen firsthand the nightmares of hip surgeries and the fact that you were able to even at six years old, prevent that with a standing frame is absolutely amazing. That right there is like the best story ever to me. I'm like, oh my gosh. Love it. That is cool.

We actually, whenever my daughter was younger, , we also did a story with Zing. We did photos and a little story. I think it's still on the website. She was so tiny. She was. Yeah. But , I think it was maybe over like early intervention, but yeah. That's awesome. I didn't know how it all worked out with how you guys got together and now that you [00:28:00] work for them. So were you working before that, in marketing. 

Caroline: Not really. It was mostly just like running and doing Briella's social media account. Sure. And then, so I also bartend a couple days a week part-time as well. And so it was just like the perfect opportunity when I found out I was, also pregnant that I couldn't, bartend. I was like, well, why don't I really catch. Social media hard and why can't I help out, Altimate Medical 'cause they have multiple brands. They have EasyStand, Zing, ActiveAid, and now we just acquired Therafin

so yeah, I'm super busy on social media for Altimate Medical, but it's just amazing to be able to one, share, everyone's stories that are, open to sharing, their standing stories and just how Altimate Medical and Zing Standers and EasyStand their equipment , their standing frames and, shower chairs really can help change, lives for those individuals and caregivers.

Deonna: That's cool. Yeah. We were in a Zing Stander at Texas Children's within the first, few months of Allie's injury. And she would get nervous when she first would go [00:29:00] up because it had been a while, since she had been up standing up vertical. Yeah. But now she loves. Being in it. And I mean, when you put her in it, she wants to stay in it for longer than she should be in it, and we have to force her to get out. So it's a good thing. We love it. We love Zing 

Rhandyl: Yes, we do too. Remi was just watching Bluey and her zing earlier and she didn't, she did not wanna get out. 'Cause she knows when she gets out, bluey goes off. So. Oh man. Mean I know.

So, we asked you the hardest parts and things like that, but what are some of the positive, unexpected moments throughout raising Briella? 

Caroline: Oh gosh. She's just so happy all the time. She has such a, a determination for life. She's just a people person. She loves being around people. I think, hearing her voice when she was five and, not knowing if I was gonna be able to actually hear her voice and how hard she worked to do that. And then her taking her first independent steps when [00:30:00] she was like five, six, just all of those amazing milestones that, once you're given a diagnosis you don't know if your child will ever do, but you always pray and hope that one day, you'll hear I love you or just all of those. Incredible moments.

And just knowing how hard our kiddos have to work to be able to do those things. I think mostly, starting Brielle and me and her page and sharing her story, a lot of the opportunities that have opened up for her and modeling and doing runway shows has been, absolutely incredible. Her first modeling gig was with Kohls. And their adaptive line in 2019. That's kind of how we fell into modeling and stuff. And she loved doing all that. Beforehand one of our good friends is a photographer, so we would always do pictures and we fell into that too, of the modeling career. But she loves it, rocking the runway. Oh. 

Rhandyl: So stinking cute. 

Deonna: The runway thing, I saw that the other day. I was like, how do we get into this? This would love to go down a runway in an outfit. It'd be so fun. But I love [00:31:00] seeing brands. Like recently we saw, who is it? We, I've seen two different disabled kids that are really big in this community. Dallas and then Dallas. Oh man, that girl, Abby, she's been in Target ads too, and I just love that these companies are putting disabled kids in the front. I mean, it's just every time I went into Target the other day trying to find Dallas, like I was like, where is she? I wanna see her. But that's so cool that she does that. I love it. 

Caroline: And it's so good. Like representation matters, for our kiddos, and then it does, yeah. It's for other kiddos to see, our kids being represented. It's so, so important, we're all human beings. We all wanna feel, loved and belonged,. 

Deonna: Yeah. They do some cool stuff. Yeah. So what has helped you the most through this journey and then what has helped Briella the most? 

Caroline: Honestly, I think it's, a lot of it is the support faith, God. Our family has been, so very supportive. And, just having her page [00:32:00] Briella and Me and sharing her story and just learning from all these other incredible, amazing families and caregivers. Just everything else that is, out there in terms of, opportunities for our kids or, different adaptive equipment different therapies that we could try with our children.

So I think that, just having that community and building that community and those connections with those families, I, just feel like it has saved all of us. So greatly 'cause you learn so much from, all these other families that are going through and you always find out, new things when you follow, on social media or in the groups. Yeah. 

Rhandyl: Okay, so obviously Briella loves to go to school. She's very social like you said, and she does her modeling. But what are her like big interests and favorite things and what brings her the most joy? 

Caroline: Briella really loves, playing with her brother. Nice. Not her brother keeps her like super busy.

She loves, she also does horseback riding, so adaptive riding Oh, cool. Once a week. Yeah. So that's [00:33:00] always, fun for her to do that. She loves crafting, anything, a girl her age, Taylor. Swift 

Deonna: oh, today was a good day for that. It was, she was excited. I walked in and Allie's did you hear the news? And I was like, I heard the news. I knew exactly what she was talking about. She was freaking out. Yeah. I feel like every little girl that age likes Taylor Swift right now. It's so fun. Yeah. Most of these kids just love music so much. Yeah. It's just such an important thing to them, really. I mean, it's their way of kind of relaxing and expressing themselves. 

Caroline: Yeah. 100%. Yeah. She, loves dancing and , hanging out, all the things 11-year-old girl would do. Yeah. That's what she loves. 

Deonna: I love it. Yeah. So what would you tell a parent if they were just finding out about their kids' diagnosis? Like what is one piece of advice you would give them as they start out? 

Caroline: I would definitely say find your [00:34:00] community. Start building your community. If you're open to it, get on social media. Make those connections because you'll truly learn just about all the things like I already said with, equipment and, opportunities and things that just can really help support you.

I think learning a lot about your child's diagnosis. Being a really strong advocate for your child. Not taking no for an answer, if you get a denial for insurance, appeal that denial. Really just having thick skin and standing up for your child and advocating so. So very hard. I think it's just one of the biggest things.

But having that community, having those open conversations with your family, asking for help, not being afraid to ask for help knowing that you need to take, time for yourself and self-care. Those are some, super important things. And again, it takes a village. It truly does. 

Deonna: Yeah. Rhandyl says that a lot. It's, and I like the part too about, no, I mean, I used to take no [00:35:00] as the answer and I'd be like, okay, well, they said no. So that's the end of that, and now when they say no, I'm like, you're so cute. I am going to make your life.

A living. You know what, until you do what I want. And I mean, that's how we all become, but it takes years to get that tough skin, it doesn't happen overnight. No. 

Rhandyl: It's learned advocacy. But yeah everything that you just said, I'm like yes. All the highlights. Yes. And in the beginning it's so overwhelming, but man, if I would've had someone tell me those things, right off the bat, I don't know. I mean, who knows? It's neither here nor there, but 

Deonna: it's what you need to hear. Yes. Yeah. Before you're ready to hear it. Yeah. I mean, there's times, like we've talked, there's things Randall said to me, and I probably wasn't quote unquote ready to hear them yet, but it kind of fast tracked me through the like. Time where I would've been wasting time, if that makes sense. Mm-hmm. You know, So it's like a good thing. But some of it's [00:36:00] hard to hear when you're just starting out, I'm sure. 

Caroline: Yeah, it's a lot. I mean, it's a lot to process and you know how life is gonna be and just the unknown and it's, that's what I said. So great to even like during, if you're taking your child to, therapy programs and talking to parents and therapists there and getting to, find your team of people, finding a really great physical medicine rehab doctor and a really great PT and OT that you and your child get along with and they work well with. And just making those connections. I mean, that is huge too for success. As your child, grows up so. 

Deonna: You brought up a good point. I think a lot of parents, I don't know if this is like this in the cerebral palsy world, but if your child has any, this is just my opinion, but if your child has any sort of , muscular issue or injury or anything like that. They need to have a physical medicine rehab doctor. On their group.

Like I've talked to so many parents who have, their kids have cerebral palsy and they don't [00:37:00] have that doctor on board. And it really kind of scares me because that doctor's looking at the whole picture of, yes, you know what? What's going on? Like I, she's honestly one of my most. Trusted doctors at Texas Children's.

'cause she's like the head to toe thinking about everything. Yeah. But when you don't have somebody watching all those meds and like she's discovered things that we one doctor said to do and the other one, and then she's no, don't do that. That will cause this to happen. So I mean, if you don't have one of those and your child has cerebral palsy, this is our PSA to find one because. They really are very good at what they do. 

Caroline: They are yes. Definitely get a PMR doctor for sure. Mm-hmm. Ours has been amazing. That was one of the first things once we got her CP diagnosis, her PT was like, go find your p, your PMR doctor. Yes. And said, what is that? Physical medicine rehab doctor?

And they're amazing. 'cause they help, get all of the scripts. If our PTOT speech, [00:38:00] they help write all of, like the equipment and AFOs and just all of the support things are ours is great. So, yeah. Yeah. 

Deonna: I think of them as like the captain of the ship and all the other doctors are the little deck cans and they're telling everybody what to do. Even they're even telling the physical therapists what to do and what not to do. And I mean, at least in our life, they are. So, yeah. Highly recommend having one of those doctors Yeah. In your arsenal. 

Rhandyl: Yes, for sure. Okay. Caroline, so if you could describe what Briella has taught you about yourself, through the last 11 years, what would you say that would be?

Caroline:  I would definitely say, just faith, a lot of faith, a lot of patience. A lot of hope and just never giving up. Never giving up, always, fighting for her rights and her needs and just knowing to speak up, help be her voice. And her biggest advocate and I think is just, she's taught me so much in life [00:39:00] and, I feel like as a parent, raising a child with a disability, you just, see how much harder our kiddos have to work. To be able to do, any and everything, and just how much more thankful and appreciative you are having a child with a disability because it's just incredible watching their journey and just knowing, how much hard they have to fight, but they're just absolute rock stars and mm-hmm. so determined and it's a beautiful life, but it's such a hard life as well, and mm-hmm. I just, I'm so proud of her and thankful for her each and every day. Yeah. And she's just my shining little star. I love that girl so much. 

Deonna: She's so cute. We do too, and we don't even know her. Yeah I totally agree with that.

I think all of our faith completely changed after that. Yeah. And sometimes people can walk away from that faith because they just are so confused about how these, bad things happen to them or whatever. But yeah I think it's good when you choose to deepen it instead [00:40:00] because it can help you.

It's gonna help you get through it, but it's, yeah it's a tough journey. You can have some tough feelings sometimes, but I totally agree with that. Yeah. 

Rhandyl: Yeah. I love when you said faith because I don't know , how people do it without faith, because, I mean, I've been in some dark places since Yep. Remi's been born and it's so hard and without God, I mean, I can't even imagine. I'd probably still be like super down , yeah. But yeah, faith is, where it's at. And oh my gosh. You can just tell how much Brielle is loved we haven't met her, but just seeing her videos and pictures oh my goodness, she is happy and you guys are doing such a wonderful job at parenting her and giving her the best life

Caroline: thank you. Same for you ladies, 

Deonna: and when you Oh, thanks. Well, and when you mentioned the gratitude thing and being , grateful for things. It's so funny because I do think about that a lot. Like my life was so [00:41:00] easy before Allie got paralyzed and I wasn't grateful for it. Like I didn't. I didn't care. I didn't really know that was easy or the good, and now that part of that's been taken from me, I'm way more grateful like you for hearing her voice or for just her being out of the hospital for a certain amount of time or just all these different things like you don't know.

What real gratitude's like when you have it all. Yeah, and so it's an interesting thing how we all say those types of things. Like we're way more grateful even though our lives are 20 times harder than they were before. It's just like a funny, it sounds contradictory, but it's not. Yeah. Like it's, yeah, we know what we've lost and we know that every little thing is. Actually not a little thing. Yeah. 

Caroline: Huge milestones. Even though they might be little inch stones, like everything is just worth celebrating with our kids. 

Deonna: It is. [00:42:00] Yes. It's, and I wish, sometimes I knew that before and I wish sometimes parents who are just raising typical kids. Could feel that and celebrate little things and I think their lives would be 10 times happier. Kind of like how ours are. Yeah. 'cause they would just get it,

Rhandyl: yeah. I don't know if you feel this way, with your son, I know with my son, I'm sure that I parent him completely different than I would have had I not been raising a disabled child for all these years prior to him. I mean, just. The little things don't matter. I'm not worried about getting him in every little league there is like all the things that you feel this pressure to do. Mm-hmm. Like As a typical child parent in Texas, I'm just no. Yeah. It's so just let him be a kid. It's just like, yeah. I don't know. It's just , this freeing thing. And I feel like I'm totally different than I would've been had I not been a. Parent, Parent to a disabled child before. 

Caroline: 100%. Yeah.

Deonna: Okay. So to kind of wrap [00:43:00] up today what are resources that you would recommend to other parents who child just got a CP diagnosis? 

Caroline: I know Cerebral Palsy Foundation is a really great resource. They have a lot of information about cp, a lot of really great videos on their, social media or on YouTube as well as their website that talks about, a lot of different things in terms of, therapies and equipment . They also do a really big conference, every single year for cp. That has a lot of, they'll have vendors there too. And that's another really great resource.

And then cpresource.org is another one that Okay. Kind of goes more in depth for CP and then like I've, kind of been saying, find your CP community, online or through social media groups. Yeah. 'cause again, you'll learn a lot more in depth from parents and caregivers and even adults that live with cp. They're another really great resource too, so.

Deonna: Oh, for sure. Yeah. Well, and it's, isn't it one of the most [00:44:00] common disabilities in the world?

I mean, probably in the top three, so, I mean, there's a lot out there, to be able to look up. But yeah, click on those hashtags. That's what they're there for, is to link people together. 

Caroline: Yeah, exactly. Yeah. There's 17 million people worldwide living with cp and it's the most common motor disability okay. Out there. Yeah. So yeah there's a lot. I mean, even just within the last 11 years since, Briella has been born, I mean, I feel like I, hear new things about CP and treatments and earlier diagnosis, which is. Huge. Mm-hmm. If you think your child might have cp, having them get diagnosed or talking to your provider because the earlier you start those intervention programs, PT and ot and start with all those therapeutic inventions like standing and getting your first gait trainer wheelchair. Those are all really great benefits. For your child. So early intervention is so key. In terms with cp, once you find out, hit it hard, those [00:45:00] first three years with early intervention stuff. Yes. 

Rhandyl: It's so important. Yeah. And I'm so glad that now, it's changed in the last decade, with the earlier diagnosis, a lot of times it was like taught you, wait. And look at the developmental milestones. And then it was like they were diagnosed with CP later on in life, whereas at their crucial, the most crucial parts of their life is like, age, one to four, like birth to four.

Yeah. Like those are the most crucial times to really hone in on that. Physical medicine, PT/OT, all the things. So, I'm so thankful that the medical world's changing their a diagnosis protocol on cp, so 

Caroline: that's a big. And I feel like Briella got a late CP diagnosis 'cause a lot of the kids wouldn't get diagnosed. They're about two, sometimes even three. Mm-hmm. Briella was almost two. And she should have been diagnosed earlier, but we said we did, the genetic testing first instead of the brain scan. Sure. So I, I can kick myself for that. I wish we would've done, the brain scan first and then the genetic stuff.

Rhandyl: So we're always [00:46:00] gonna have those man. Yeah. I'm like, if we had a list, say most interest thought you can have Yeah. The guilt will get you

. honestly, be before two is huge. Even 11 years ago. That's huge. Because yeah. Yeah. That's early. I mean, that's early for 11 years ago, so 

Deonna: yeah. That was a long time ago. Well, thank you so much for talking to us. It's like we always are texting back and forth getting, post approved and things like that, but it's nice to actually get to know your life a little bit better and you do a great job online and, explaining what it's like and everything.

And so we're just so thankful that you've talked to us today. What, tell everybody what your Instagram handle is in case they didn't hear it. 

Caroline: So our Instagram handle is briellaandme We're on Facebook and Instagram and TikTok and all of the things. Oh, nice. So you can see, Briella's whole journey and all of our videos that we do and therapies that Briella does. And [00:47:00] yes, reach out anytime with any questions. We love connecting with new families. And thank you guys so much for this opportunity. I've been wanting to talk to you all forever and I fully enjoy seeing your daughters and just. Watching them grow up too. It's just, it's incredible. 

**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.