Honoring our CP Warriors on National Cerebral Palsy Awareness Day

Transcript

Kellan Julal (00:06):

Welcome to this episode of Raising Kellan podcast. To motivate, inspire, and educate parents raising kids with special needs.

Marsh Naidoo (00:19):

So guys, today is Cerebral Palsy Awareness Day and we are joined by Drake Box, Levi Alvin and his mom Dana Kramer. We are going to chat about all things cerebral palsy. Drake and Levi are gonna talk about sports, what's going on currently during this pandemic in terms of therapy, school and life. So stay tuned.

Drake Box (00:46):

Levi, are you a Braves fan?

Levi Ervin (00:49):

Yes, I actually quite, I'm

Drake Box (00:50):

A Cardinal fan so it's gonna be a tough friendship.

Levi Ervin (00:54):

<laugh> tough friendship. He likes the Cardinals. Yeah, <laugh>. <laugh>. You can tell we've been locked up and it's only been me and him. We haven't been able to talk to anyone. Levi, you're excited to talk to people, aren't you? Yeah, this quarantine is boring. I know <laugh>, we do talk to each other all the time, but sometimes gets a little old. I know we like our adventures. We're missing them and we also have completely different interest. Oh yes. We have different interests inside the house. I do not like video games. Well,

Marsh Naidoo (01:36):

So Dana, what's what

Levi Ervin (01:38):

I'm working on?

Marsh Naidoo (01:39):

Have they contacted you guys and maybe I like doing virtual stuff or not really or,

Levi Ervin (01:46):

So what we're doing is we already kind of did one virtual thing, just this extra therapy at home anyways it was called Tomca And it's just a computer-based system that is therapist sets up and it's through webcam and Levi holds like colored balls. It does Sitting, standing, balance, stuff like that. Been doing that with our estim and then our therapy is actually setting up a telehealth path right now. So hopefully we should be getting on that in a couple days. Like a virtual therapy with his therapist. And I'm not really sure. I'm assuming maybe I will be trying to help in her place, but she'll be watching. I pretty much exercise any day though guys. I run around. Yeah, he's not staying still inside for sure. <laugh>. Hopefully today we can get outside cuz it's actually sunny. It's been raining but I thought we couldn't leave our house. We can go in our yard. I just can't play with other people. <laugh>,

Marsh Naidoo (02:51):

What we've been doing too, Levi, is we've just been getting out in our yard or the driveway walking up and down there has a bike. So we gonna try adaptive bike. So we gonna try and get on that. What should been up tore?

Drake Box (03:06):

Kroger.

Marsh Naidoo (03:07):

Kroger.

Drake Box (03:09):

Kroger and Clorox wipes. I get the same question about 5,000 times a day and that makes me wanna pull my hair out.

Levi Ervin (03:16):

What's the question?

Drake Box (03:18):

Do you guys have any toilet paper you guys have? Give me ground beef like No, no, no, no. That's basically it.

Marsh Naidoo (03:27):

We got word from our school system that we gonna be closed be 24th of April. Have they said anything to you guys?

Levi Ervin (03:37):

Okay. I think the last I heard was like, do you

Dana Kramer (03:42):

Remember April 10th?

Levi Ervin (03:43):

April 10th and then we have spring break, so I'm not really sure.

Dana Kramer (03:49):

And now cause I'm gonna miss my honors course production since we were gonna do it on April 25th and we can't do it any other time.

Levi Ervin (03:57):

Oh yeah. So now the honors course plays canceled but it's okay.

Dana Kramer (04:03):

<laugh>. Well that was actually a little bit good for me cause I had no idea what my lines were. I actually only broke my script a tiny bit. So yeah, they were trying to fix it cause a staple popped out. They were trying to fix it but I never got it back. That was gonna get for

Levi Ervin (04:21):

Me. Oh man.

Marsh Naidoo (04:23):

So I mean what's the virtual learning like Levi?

Dana Kramer (04:27):

So I do a ton of things called Google meets with other teachers and pretty much go over what I have to do. They'll do it. Can I show them the puppet I made

Levi Ervin (04:38):

The puppet you mean? Yeah. Here hold the phone on, grab it.

Dana Kramer (04:42):

So I made this donation puppet.

Levi Ervin (04:45):

You have to tell people what it looks like.

Dana Kramer (04:47):

So it has spots all over. It's a little puppet that you put four fingers and one and your thumb in another. I can do that. And it's like that.

Levi Ervin (05:01):

Yay. So for the people listening, what did you have to make that puppet for today? What

Dana Kramer (05:05):

Class? For readers theater. Readers Theater,

Drake Box (05:10):

Yeah. I like how his classes sound so much more interesting than mine when I was his age. Cause mine when I was his age was let's go to English, go to reading, not Reader's Theater. I love to go to that class.

Levi Ervin (05:24):

Oh my gosh. They have science enhancement, they have music, art, the regular ones that we did. But they actually do really cool stuff.

Drake Box (05:34):

It's not there.

Levi Ervin (05:35):

It's so interesting compared to when I went to school for sure

Dana Kramer (05:39):

One time in music. We did music tactile

Levi Ervin (05:43):

For him.

(05:43):

And I have another question for you. Does CP get better in other people ways as you get older?

Drake Box (05:51):

It depends on, I don't know cuz I know my case is pretty moderate, but early on my parents did everything they could for me to get my surgery and my therapy. I went through Shriner's Children's Hospital in St. Louis. So when I had that surgery done, I had my intensive therapy for a good six months. I was in a wheelchair, the braces, the AFOs, all that good stuff. But I was lucky, I was blessed enough to have get to the point where I don't have to wear those braces anymore. I should, but I don't. But I think with me, I think it gets better if you just, you know, attack your therapy at an early age because your body grows when you're younger and it continues to grow and then you kind of peak out once you get to 23, 24, 25. So I'm kind of still in that stage, but not as rapidly as growing. So it's not like me doing my therapy doesn't have a big as effect as you would be doing your therapy cuz you're still very young and your body's still stretching out and growing. But yeah, I think if you work really hard at it you don't have to limit yourself to the case that you started with. You can always become better. I mean obviously we're always gonna have CP but doesn't mean we can't have a better version of it as we get older. So

Levi Ervin (07:14):

That's what I thought. Is that making any

(07:17):

Sure

(07:18):

By asking in person. I know that older me with CP.

(07:22):

Oh yeah, Drake would definitely know. Right? So he was the perfect person to ask. Yeah. Yeah. <laugh> I would, Sometimes there's things that I just can't answer. Right. So it was cool asking him. <affirmative>, <affirmative>.

Drake Box (07:37):

Levi, I have a question for you. So yeah, I'm starting my own podcast. It's called The Box Factor. But usually what we're gonna do is I'm just gonna talk about different subjects and everything and I'm definitely gonna do one on cerebral palsy. So I would like for you to be a guest on that episode if you want.

Levi Ervin (07:57):

Sure.

Drake Box (07:58):

<laugh> instead of hundred meetings and I could get it recorded and everything.

Levi Ervin (08:01):

Percent yes. <laugh> did. Levi said 100% yes.

Marsh Naidoo (08:08):

Just from a mom perspective on today, which is Cerebral Palsy Awareness Day. Dana, what would be your message to those listening out there?

Levi Ervin (08:21):

Well for me personally, I get more excited about Cerebral Palsy Day than anything else. Even a birthday. Cuz some of us, the birthday brings back those memories. So as a mom on cerebral palsy day, I try and go all out. It is just an all celebrate, have fun, just embrace everything, kind of forget about the therapies and the struggles and kind of just like, I don't know, we normally just do something so fun that we wouldn't normally get to do. And we just embrace the happiness to Levi, the happiness that normally has a lot of heartache or struggles at times. But there's also always so many milestones. And today we just dedicate those to that. The total happy times. All our successes we've got in the past year and we eat a bunch of junk food and party and just have fun. So everyone, I don't know if you're listening and you have a little CP warrior, just hug 'em today.

(09:40):

Love 'em, support 'em. Let 'em know that today is their day because so many other days are other people's and so many days are schedule oriented. So today is your day buddy. I wanna say one thing. We know you do so to other kid with CP that's listening right now. Oh, good idea. Happy CP Day <affirmative>. Yes. Take this out today to forget CP for a moment. Forget and just have fun for cause you <laugh>. So I guess Happy CP day. We hope you guys have fun. Drake, it was really awesome getting to see you. Talk to you.

Drake Box (10:26):

Nice to meet you, Levi.

Levi Ervin (10:28):

What do you, Nice to meet you. Are you excited to do the podcast with Drake in the future? Yeah. Oh my gosh. I'll

Drake Box (10:35):

Definitely get back to you on that. <laugh>.

Marsh Naidoo (10:38):

Well guys, we've come to the end of another episode of Raising Kien. Remember, join us on our blog at raising kien org. And until we see you guys the next time, remember always get to the top of your mountain. This is Marsh Naidoo signing off