In this episode my aunt and I discuss the different types of surgeries people with cerebral palsy may have to have. I also share my experiences, so come roll with us!!!!
Support the showIn this episode my aunt and I discuss the different types of surgeries people with cerebral palsy may have to have. I also share my experiences, so come roll with us!!!!
Support the show(Instrumental Music)
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(Instrumental Music & Singing) Queensss On A Roll
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(Instrumental Music & Singing) Yeahh Heyyy Queens On A Roll
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(Instrumental Music & Singing) Ooooo who Queens On A Roll
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(Instrumental Music & Singing) Powerful Queens On A Roll
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(Instrumental Music & Singing) Queensssss
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(Instrumental Music & Singing) Oooo who Queensss
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(Instrumental Music, Singing & Bell Chiming) Powerful Queens
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Hey, everyone, and welcome back to
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Queens On A Roll podcast.
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This is Latavia here.
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And guess who I brought back with me?
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My lovely Aunt Valerie. Hi, everyone.
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How are you doing today?
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I'm doing great, i'm doing great Auntie. How you doing?
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I'm hanging in there, girl. Hanging in there.
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That's great.
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So before we get into today's topic, which
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is surgeries, everybody wanted to know something, Auntie.
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So let's roll.
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Let's roll, girl.
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Let's roll.
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(Instrumental Music)
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Hey, Auntie.
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So everyone wants to know, how did we come
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up with the Queens On A Roll song?
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Well, it's still baffling me. Yeah, I know.
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It's baffling to me, too.
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It kind of happened accidentally, y'all.
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So I came to my aunt and I said to my aunt,
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I wanna start this podcast called Queens On A Roll.
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And here's what it's about. You know
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It's about helping the ably different community and
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educating people about the ably different community.
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And she was like, I love that idea.
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I said, thank you, but I need a theme song.
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Can you help me out?
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So she said, okay, I'm coming over to your house,
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and we kind of just played around with it.
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But my aunt has a background in music.
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So tell them a little bit
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about your background, auntie Yes.
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I used to sing in a band called Sounds of Ebony.
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I was the lead singer.
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And so we were selected to
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be on Jerry Lewis, the Comedian.
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He used to do a muscular dystrophy, telethon
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And our band was selected for that telethon
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And I've always sang professionally.
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I've also sang in gospel groups,
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and I've done many different things.
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So this is where my background comes
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from because I've always been either a
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lead singer or singing in a background. Yeah.
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So I always knew that Auntie had those singing
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credentials, but it really just happened by accident.
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She came over and we just
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played around with some words.
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I think my mom had some words.
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And my aunt was like, no scrap that.
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And I played the beat for
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her, and she just started singing. Right, Auntie?
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Right Latavia
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We were just playing around, and I began to put
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words to it, and I started saying things like Queens
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on a roll
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Woooohooo queens
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on a roll, powerful queens
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And when I looked, everybody was up dancing,
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singing the song, and it just caught on.
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So I'm just grateful that you
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guys enjoyed it out there.
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And I thank you for your support.
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Yes, most definitely.
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When I tell you everybody loves that song, Auntie.
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Everybody loves the song.
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And they said to me, you didn't address how you
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guys came up with the song in the last episode.
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So I said, okay, I have to
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give my listeners what they want.
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And I have to ask you, how
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did we come up with this song?
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And stay tuned, guys, cuz next season we're gonna
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have a full Queens On A Roll song.
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We're working on it. We're working on it
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(Instrumental Music)
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Now we're on to
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surgeries for cerebral palsy, the dreaded surgeries.
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Oh, yes, the dreaded surgeries.
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Latavia, I remember how you used... I believe you took
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16 to 18 surgeries, and it was just amazing.
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I just wondered how you went through them all.
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So I think I've had about 18
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different surgeries, and I started at two.
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There are six different types of surgeries.
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So I'm just going to explain what they
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are and go into detail with them, and
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then I'm going to tell you my experience.
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(Delayed Beat Instrumental)
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So there's muscle lengthening, which is where you
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lengthen the muscle, because again, we're tight.
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So you have to lengthen
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the muscle throughout our lifetime.
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It usually happens in the hands of the fingers.
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I haven't had this surgery because unfortunately,
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my arms are contracted, so I couldn't
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really do much surgeries with my arms.
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I could do one surgery where they release it to see,
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but I was scared, and my mom was scared to do
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it over time because like I said before, sometimes underneath that
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tone, you got a very strong muscle or you got a
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very weak muscle, and they're not able to determine that.
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So sometimes when you take the surgery, your arms could
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flop out and you can no longer bring them in.
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So I didn't want to run the risk of that happening.
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So I just said, you know leave my arms alone.
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But if your child needs it, it
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is a good surgery to get.
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And all of these surgeries are good to get guys
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when your child is young, because as an adult, if
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your child needs to get these surgeries, it's so super
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hard to recover because the body's older now.
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It takes more time and it's
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more traumatizing to the body.
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I remember talking to one of my friends who actually
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had to do it now as she's older, and she
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was like, I would recommend any parent to do it
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when their kid is small because it just makes recovery
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that much easier and it's easier to deal with.
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So again, if you feel like your
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child is going to need these surgeries,
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do your research, listen to the doctor.
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But again, do your research and do what you
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feel is best for your child at that time.
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So if you feel like he or she is going
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to need it, by all means do it, because all
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these surgeries are helpful at different points in their lives.
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(Stair climbing sound)
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The next surgery has become a little bit
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more famous now because they don't really like
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to do tendon lengthening surgeries anymore.
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What they do now is
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tendon transfers, and tendon transfers.
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They usually just cut the tendon and
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do a replacement of the tendon
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Ohhhhhh It seems like my aunt, she's
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over here making an oooooo face. Yes.
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Because it sounds so scary, I mean really, I mean as a
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parent who has a child with cerebral palsy.
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Yeah, it sounds very scary, but you can enlighten us.
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Yeah, it is scary.
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But again, all of these surgeries are going
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to help at one point or another.
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So the tendon transfer surgery is where they usually
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just cut the tendon and then they replace it.
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The goal of the surgery is to keep your body
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in proper alignment and it helps reduce any pain or
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any problems that they may have with walking.
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And it improves like your flexibility.
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If you do it in the hands,
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it improves the flexibility in the wrist.
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I feel like this one is becoming a little bit
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more popular, especially for the adult population, because now that
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we're older, they don't really like to do the tendon
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releases, because what they have found is that when you
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do tendon release surgery or tendon lengthening, where they just
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go in and they cut the tendon and then they
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lengthen it, it knocks your pelvis out of alignment, which
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then leads to scoliosis, which is what happened to me
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over the years.
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I've had tendon lengthening surgeries, so they
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cut the tendon and they lengthen it.
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That's to help with growth because our muscles and
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tendons are so tight, it can stunt our growth.
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So they have to go in at certain times, which
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they like to do it now between the ages of
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six and ten and lengthen the tendons so that they
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could grow with us as we grow.
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It won't stunt the growth and we won't have
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contractures because that can lead to contractures, which just
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means now your leg will be fixed in a
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position and you can't move it.
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And it's painful.
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I actually have contractures in my
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arms, but they're not painful.
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It just means that I can't really stretch my arm
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out as far as I need it to go sometimes.
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Wow, Latavia
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Who would ever think, you know this is really
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enlightening to parents and it's really something
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that parents need to look into.
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Do your homework, parents, before you just
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rush into things you know and do your research. Yeah, definitely.
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My mom was a big researcher and listened
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to everything, but I kind of have now
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taken up the mantle and I research everything.
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So, yeah, definitely do your research.
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And again, definitely go with your gut.
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Take all the information, take the information from
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your doctor, take the information from yourself, then
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take the information from the research that's out
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there and make an informed decision.
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(Stair Climbing sound)
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They also have tenotomy or myotomy
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Which tenotomy
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It just describes the cutting of the tendon. Right.
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The myotomy is also cutting of the muscles.
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Think Myo muscle, tenotomy, tendon
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So it all involves cutting the muscle or the
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tendon and that's to improve increased control of your
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upper limbs and to enhance the ability to grasp
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objects with your hands and your feet.
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I never had any of those because
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I barely could move my toes.
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Literally, when I wiggle my toes, I'm literally
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only wiggling my big toe a little bit.
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It never really impacted my mobility, so I
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didn't feel and my mom didn't feel at
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the time that it was necessary for me.
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So I haven't had to do any of that.
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I can wiggle my fingers somewhat.
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And like I said, my upper body is way more
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stronger now than it was years ago, so I didn't
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need to do any of that for my upper.
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It's mainly my lower now.
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But again, if you feel like your child
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needs that, please, by all means, get them
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the surgery after you make an informed decision.
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And then there's osteotomy.
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I've had a few of those, and let
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me tell you, they are not easy.
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So for people with spastic CP, your bones
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tend to come out of the socket.
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Your hip bones tend to come out of the
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socket, and your hip bone tends to come out
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of the socket guys, because for able body people, as
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you guys walk, the socket begins to hollow out.
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But for people with CP, the hip bone is
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not hollowed out because we don't constantly walk.
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You have to constantly walk for the hip
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socket to be hollowed out, so we don't
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constantly walk, so that doesn't happen.
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So the hip bone just easily slips out.
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Wow, Latavia that must have been painful.
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Oh, don't worry.
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It wasn't painful at all because
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you don't even feel it.
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A lot of the time, I didn't even know
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my hip bone came out of the socket. Oh, my God.
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How could you say you didn't feel
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your bone come out of the socket?
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That is very painful.
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That's because the tight tendons and muscles keep the bone
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close to the socket, so you never really feel it.
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When I was younger, my mom would actually tell me
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that the hip bone came out of the socket because
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she would say, you could feel the bone, and then
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your leg kind of feels all Loosey Goosey.
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So she was like, your hip bone came out again.
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And I was like, oh, boy, that means another surgery.
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And she was right.
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All of the time that my hip bone came out
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of the socket, she was exactly right.
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It was out, and I needed to
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go back in and have surgery.
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Oh, my God, that's really something.
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Yea it's alot
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(Instrumental Music)
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(It's Fun Fact Time)
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So the fun fact for today is before they shaved
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my bone down, my hip bone to do the rotational
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osteotomy, the doctor said from my bones, it looks like
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I was supposed to be 6ft tall.
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Can you believe it?
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6ft tall.
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I do have some tall people in my
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family, so that's probably where it comes from.
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But I am kind of glad that I'm not
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6ft tall because guys usually be like, I don't
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want the female to be taller than me.
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So I am now 5'3, because when they do
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it before a growth spurt, it stunts your growth.
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So it stunted my growth.
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So now I'm only 5ft three
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inches, which is okay with me.
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Thank goodness, Latavia that you're not 6ft.
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I know, and you are right.
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Guys don't like their girls taller than them.
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I know, I know, I wanted to just go back to the tenotomy
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Myotomy because I noticed that you
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said they cut the tendon
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And I know that I'm just talking now from my experience,
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for people that don't have CP, but they might have an
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Achilles heel tear, which is a tear in your tendon.
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I know that, that is very painful.
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So I wanted to know if this procedure was very painful.
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So for people with CP, and again, I'm speaking from
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my experience, guys, for me, the surgery wasn't painful.
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The parts of the surgery that is painful is after
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it's all done and over with, you have spasms.
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And that's because remember now your tendons and your
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muscles are used to being in one position, right?
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They're used to being tight.
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So now you're relaxing them and you're
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making them loose, and they want to
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go back to where they originally were.
(14:37.7 - 14:39.5)
So you'll feel like the muscle jump.
(14:39.6 - 14:40.6)
And it's painful.
(14:40.7 - 14:44.4)
It is extremely painful, and it hurts a lot.
(14:44.4 - 14:48.1)
So that, for me, was the painful part of the surgery.
(14:48.1 - 14:50.7)
And then they get you up the next day.
(14:50.8 - 14:53.2)
Because for people with CP, if
(14:53.2 - 14:54.7)
you lay around, you get tighter.
(14:54.8 - 14:57.3)
So they didn't want all that hard work they did
(14:57.3 - 14:59.5)
on surgery to make you loose and make you be
(14:59.5 - 15:01.4)
able to stand up straight to be in vain.
(15:01.5 - 15:02.9)
So you have to get up the next day.
(15:02.9 - 15:07.0)
And when I tell you walking is difficult after
(15:07.1 - 15:11.6)
surgery because you don't have any strength, your muscles
(15:11.6 - 15:14.9)
are loose, you can't control anything, and you just
(15:14.9 - 15:16.8)
basically just flop to the floor.
(15:16.9 - 15:18.9)
I could barely take any steps.
(15:18.9 - 15:20.9)
It was painful. It hurt.
(15:21.0 - 15:23.2)
So that for me, was the painful part of
(15:23.2 - 15:25.9)
the surgery, not the actual cutting, because the cutting
(15:26.0 - 15:28.4)
actually makes you loose and it feels good and
(15:28.4 - 15:30.4)
you can stand up straight and you can move.
(15:30.5 - 15:32.0)
It was just the spasms.
(15:32.1 - 15:34.6)
And not being able to move for the
(15:34.6 - 15:36.3)
first couple of days that bothered me.
(15:36.3 - 15:39.6)
Surgery for me was always like a setback because I would
(15:39.7 - 15:42.4)
get to a point where I'd be very mobile and able
(15:42.5 - 15:45.9)
to move around, and then Bam, another surgery came in, and
(15:46.0 - 15:48.5)
I have to do another surgery because the hip socket came
(15:48.5 - 15:50.7)
out or I had another growth spurt.
(15:50.7 - 15:52.4)
So now I need to lengthen the tendon
(15:52.4 - 15:53.9)
to keep up with the growth spurt.
(15:54.0 - 15:56.5)
So because of that, I always felt like
(15:56.5 - 15:58.3)
surgery sent me back a bit because it's
(15:58.3 - 16:00.5)
always like starting over from square one.
(16:00.5 - 16:01.4)
But it's okay.
(16:01.5 - 16:03.8)
It's life you know its stuff that we have to go through.
(16:03.9 - 16:06.5)
And I wouldn't be here today without other struggles.
(16:06.6 - 16:08.9)
So you have to appreciate the struggles as well.
(16:09.0 - 16:10.6)
Thank you Latavia. You're welcome.
(16:10.7 - 16:11.9)
You're so welcome.
(16:11.9 - 16:36.5)
(Instrumental Music)
(16:36.5 - 16:39.1)
(Story Time Sound Effect)
(16:39.1 - 16:42.6)
So I can't remember what surgery it was, it either was
(16:42.7 - 16:45.9)
hamstring surgery or putting my hip back into place
(16:46.0 - 16:48.6)
But you guys are not going to believe this.
(16:48.7 - 16:51.0)
I woke up during surgery.
(16:51.1 - 16:52.4)
Yes, you heard me right.
(16:52.4 - 16:54.1)
I woke up during surgery.
(16:54.2 - 16:56.8)
So, yes, they gave me anesthesia to put me to sleep.
(16:56.9 - 16:59.3)
And back then, they called it the wet puppy.
(16:59.4 - 17:01.8)
And the wet puppy was just a mask with
(17:01.9 - 17:03.9)
anesthesia in it and to put you to sleep.
(17:04.0 - 17:05.3)
But that was like a cute name.
(17:05.3 - 17:07.9)
They tried to give it for teenagers and little kids.
(17:08.0 - 17:09.0)
I hated that thing.
(17:09.0 - 17:11.9)
So I woke up during the surgery, and I remember
(17:12.0 - 17:14.1)
saying, owww, what are you doing to my leg?
(17:14.2 - 17:16.4)
Stop messing with my leg. That hurts.
(17:16.4 - 17:18.0)
And my doctor came over at the
(17:18.1 - 17:19.2)
time, and he was like, okay.
(17:19.3 - 17:21.0)
And he rubbed my head and he
(17:21.0 - 17:22.7)
said, everything is going to be okay. Okay.
(17:23.1 - 17:25.0)
And they put the wet puppy back
(17:25.1 - 17:26.6)
on, and I went off to sleep.
(17:26.7 - 17:29.6)
But the crazy part about it was I remembered it
(17:29.7 - 17:32.0)
when I got out of surgery because I remember telling
(17:32.0 - 17:35.1)
my mom, mom, I woke up during the surgery.
(17:35.1 - 17:36.6)
So mom was like, yeah, I know.
(17:36.7 - 17:39.0)
They told me that you woke up during the surgery.
(17:39.0 - 17:41.8)
It was a really crazy experience.
(17:41.8 - 18:07.0)
(Instrumental Music)
(18:07.0 - 18:10.2)
So the last two types of surgery is for
(18:10.3 - 18:14.5)
people with severe spasticity, and that's arthrodesis, which is
(18:14.5 - 18:16.9)
just a fusing of the bones together so that
(18:16.9 - 18:18.6)
it makes it easier for you to walk.
(18:18.6 - 18:22.0)
And then there's selective dorsal rhizotomy, which
(18:22.0 - 18:23.9)
it involves getting to the root of
(18:23.9 - 18:26.2)
the spasticity and cutting the nerves in
(18:26.2 - 18:29.3)
the spinal cord responsible for muscle stiffness.
(18:29.4 - 18:31.4)
I thank God that I never had to
(18:31.4 - 18:33.6)
do any of those surgeries because they sound
(18:33.7 - 18:36.5)
Super, super invasive and super dangerous.
(18:36.6 - 18:40.1)
But again, if you feel like you're child needs them parents, by
(18:40.1 - 18:43.0)
all means do it and make an informed decision.
(18:43.1 - 18:44.5)
But I thank God that I didn't
(18:44.5 - 18:45.9)
have to do any of those things.
(18:46.0 - 18:48.0)
Now, all of the information in this
(18:48.1 - 18:50.9)
episode and in the last episode, the
(18:50.9 - 18:53.2)
definitions of the surgery, what it entails
(18:53.3 - 18:56.0)
was courtesy of the United Cerebral Palsy Foundation,
(18:56.1 - 19:00.0)
Cerebralpalsy.org and the Children's Hospital of Philadelphia.
(19:00.1 - 19:03.1)
And please, guys, please remember that whenever I
(19:03.1 - 19:07.1)
give you any information and also experiences it's,
(19:07.1 - 19:09.9)
my own personal experiences, how I feel about
(19:10.0 - 19:12.0)
it, my own personal thoughts.
(19:12.1 - 19:14.6)
So by all means, I know that the way
(19:14.7 - 19:17.4)
I explain the surgeries may not be in the
(19:17.5 - 19:20.1)
most technical terms, but that is the way they
(19:20.2 - 19:22.3)
explained it to me growing up as a child.
(19:22.4 - 19:23.9)
And I tried to provide it
(19:23.9 - 19:25.7)
in the most simplest way possible.
(19:25.8 - 19:27.9)
So if you feel like you need a more in
(19:28.0 - 19:31.0)
depth look at all these surgeries, by all means, please
(19:31.0 - 19:34.0)
make an informed decision and search it up online.
(19:34.1 - 19:36.3)
All the information is there, and you can
(19:36.3 - 19:38.0)
go to the websites that I went to.
(19:38.1 - 19:40.0)
Those are great resources.
(19:40.0 - 20:14.0)
(Instrumental Music)
(20:14.0 - 20:18.2)
And now it's time for the quote of the episode.
(20:18.2 - 20:20.3)
And Auntie, would you please do the honors
(20:20.3 - 20:22.2)
of reading the quote of the episode?
(20:22.2 - 20:26.2)
The quote of the episode is by Bishop T.D. Jakes
(20:26.4 - 20:30.0)
Every setback is a setup for a comeback.
(20:30.1 - 20:31.5)
Watch for the comeback.
(20:31.6 - 20:33.0)
Yes, I love this quote.
(20:33.1 - 20:36.7)
And this quote resonated with this episode, especially because
(20:36.8 - 20:39.6)
like I said before, I felt that every surgery
(20:39.7 - 20:41.6)
I ever had was a setback, right?
(20:41.7 - 20:44.6)
But after the surgery was over I realized it
(20:44.6 - 20:46.4)
was a comeback because I was able to be
(20:46.4 - 20:49.1)
more independent, I was able to move more.
(20:49.2 - 20:50.4)
I have more mobility.
(20:50.5 - 20:51.8)
I could transfer now.
(20:51.9 - 20:55.1)
So yes, I did feel like it was a setback at
(20:55.1 - 20:58.7)
the time, but looking back on it, it was for a
(20:58.7 - 21:01.8)
greater comeback and I definitely did have a greater comeback.
(21:01.8 - 21:03.5)
I mean, look at me now, right?
(21:03.5 - 21:06.3)
So they were very helpful in my journey
(21:06.4 - 21:08.2)
to get to where I am today.
(21:08.3 - 21:33.5)
(Instrumental Music)
(21:33.5 - 21:36.4)
So that's all we have for you today, folks.
(21:36.6 - 21:38.8)
Thank you for joining me, Auntie.
(21:38.9 - 21:40.6)
You're welcome, Niecy
(21:40.8 - 21:43.0)
Thank you guys out there for sharing.
(21:43.1 - 21:46.2)
Please continue to subscribe you subscribe by hitting
(21:46.2 - 21:48.1)
the little plus button in the corner.
(21:48.2 - 21:51.1)
Let us know what you want to hear and if anybody
(21:51.2 - 21:53.8)
else out there who is ably different has a
(21:53.8 - 22:00.4)
story to share, please share it with us at queensonaroll.podcast@gmail.com.
(22:00.6 - 22:04.9)
That again, is queensonaroll.podcast@gmail.com.
(22:05.0 - 22:07.3)
I really, really appreciate that you
(22:07.3 - 22:09.1)
guys are listening every week.
(22:09.2 - 22:10.2)
Thank you so much.
(22:10.3 - 22:11.8)
Please continue to share and run
(22:11.9 - 22:14.4)
it up and we're rolling out.
(22:14.5 - 22:20.0)
Yes, we're rolling out because we are Queens On A Roll
(22:20.1 - 22:21.3)
See you guys next week.
(22:21.5 - 22:50.5)
(Instrumental Music)
(22:50.9 - 22:51.6)
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