Transcript
WEBVTT
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The past 72 hours have been an emotional roller coaster for the Liberty family.
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A routine day with Paisley spirals into multiple calls and messages with medical professionals, resulting in a weekend spent at the children's hospital.
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We get through it all with faith and positivity.
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That and so much more.
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On today's episode of Share the Struggle podcast, let me tell you something.
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Everybody struggles.
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The difference is some people choose to go through it and some choose to grow through it.
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The choice is completely yours.
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Which one you choose will have a very profound effect on the way you live.
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your life will have a very profound effect on the way you live your life.
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If you find strength in the struggle, then this podcast is for you.
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If you have a relationship that is comfortable with uncomfortable conversations uncomfortable conversations challenge you, humble you and they build you.
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When you sprinkle a little time and distance on it, it all makes sense.
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Most disagreements they stem from our own insecurities.
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You are right where you need to be Back on time.
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We can back once the whole day gone, but we're behind, ooh, ooh ooh, ooh, what it do, what it hot Did-a-dee-do.
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Good Lord, almighty, am I so excited to be back with you?
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Oh, it's true, it's damn true.
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And right now it is dumping snow outside.
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Can you see that from where you're at?
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Mm-hmm.
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Wow.
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Yeah, those are big flakes.
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Big flakes right there, not referring to dandruff or that's gross or flighty people.
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We got big flakes right now.
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We are thankfully recording today From the comfort of our own home, which feels even more comfortable After the past few days we've had Thank God and we are just Watching Mother Nature.
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From the seat of our couch.
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Yeah, the old doodling couches have come in handy for today's episode of the podcast.
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Y'all might be a little bit surprised by the intro to today's show, the B-roll.
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If you would can imagine how surprised we were to live through what we just went through this weekend, or shall we say grow through what we just had to grow through.
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What a what a time, what a difficult time for us.
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As we mentioned, it's been an incredibly challenging 72 hours or so.
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It's really been a roller coaster, but you can tell by the sound of our voice that we're feeling rather optimistic at this moment.
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But without jumping too far ahead, I think it's important that we just kind of set the scene and paint the picture and pave the road and tell the story that needs to be told.
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What do you say?
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Yeah, let's share it.
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So Friday we're going to the the curtain back to friday and uh, it was a.
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It was a routine day on friday.
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The only thing that wasn't routine about it is that paisley's routine was a little bit, a little bit different, and that's one of the reasons why, um, I kind of read the room a little differently.
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So on Friday all of us kind of got up to do our thing and when you left to go to work I had loaded Paisley up in my dad's truck and brought my mom to get her hair done.
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So we dropped Mima off at Anne Marie's to get her hair done and me and the baby just kind of went on about our day.
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So typically on a Friday she would get up in the morning, you get ready for work we'd do barn chores, stuff like that, and then you know she would have a bottle and kind of ease into the day and then maybe go get coffee with me, ma, and then, because it's Friday, she would go to me Ma's house and spend most of the morning and afternoon there and I would go up and check on her from time to time, but it's one of the days where I can work from home.
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So it's kind of Meemaw's day with Paisley.
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But Meemaw had an appointment.
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So this morning her routine was a little bit different.
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So she got up and she had her breakfast in the car seat on the way to drop Meemaw off.
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And then when we got home, because her morning was a little bit different, I decided let's just get you playing and doing your doing your thing so that you can have a nap before a Meemaw gets done her appointment.
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I was just trying to time the schedule and so we went right into right into playing so I put her in her little, her little bounce zone.
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We call it.
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I think that, lady, we picked up one of those I don't know what the technical term for this thing is.
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It's like a jumper with a surrounded by activities and stuff that one lady gave us one of those and she mentioned it like the circle of neglect or something I don't know if she called it.
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Circle.
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Of doom it wasn't doom.
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You added that yourself.
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It was the.
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Don't call it neglect.
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That sounds terrible.
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Oh, that's what they call it.
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Because they don't have to, you could drop the kid off and let them do their own thing and you can go about like your own business.
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That's what this lady had kind of phrased it as.
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But anyways, we got these things all over the house.
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We've got a couple here, we got some of me, ma's, she loves them, basically gets in and bounces around, does her thing, loves her, loves her time and those, and that's one of her favorite um little, you know, just fun zones yeah so I set her up in that she's having a blast.
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I'm trying to get some things set up, I'm getting her her nap area set up, getting all of her toys out, and she's jamming hard and fast and I'm, you know, sitting in front of her, kind of playing with her, and I noticed that she started to drop her head and um, when she did.
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Originally my first instincts were because she loves to put everything in her mouth.
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At this stage, the like um play area in front of her had some blinking lights and music and stuff and I thought maybe she was going towards her to try to try to eat it, try to lick it, try to claim it as her own right marker territory exactly so.
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When this um happens the first time, I was like oh, she must be trying to get to that.
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And it happened a second time, like real back to back, and I thought she was trying to get to like the blinking lights.
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And it happened a few more times and, um, it seemed kind of odd to me but I chalked it up as this kid's really tired and our, our child has the worst case of fomo, which, for anybody that doesn't know what that is, it is the fear of missing out this kid has to be involved in every single thing.
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She fights sleep to the points of exhaustion because she thinks that she's missing something If there's anything remotely cool going on, she does not want to sleep, and what she defines?
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is it doesn't even have to be fun.
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Yeah, her definition of remotely cool could be two people talking, you know what I mean.
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It could be two people talking, you know what I mean.
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It could be lights in a store, it could be a program on TV.
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It does whatever she, if the dogs are moving around quickly, like a little more quicker than expected, that's fun.
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I got to keep an eye on this.
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She'll be laying down like in that position, like half eyes closed.
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The dog will walk by and she, like full undertaker, sits up straight what the hell's going on here.
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Looking around, like what the hell's going on here?
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looking around like I gotta do something.
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I gotta be a part of this, don't leave me out.
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So this kid, when she's having a blast, she definitely doesn't want to shut it down.
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She's uh, she's all gas, no brakes.
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She doesn't want to take a take and shut it down.
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So, um, I'm like, okay, you're, you're tired, but it was kind of a flag of like.
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That seemed weird.
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I've never seen you do that before.
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She dropped her head about five or six times in a row.
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But I picked her up and immediately she went to rubbing her eyes.
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Her eyes were red and she looked like she was really tired.
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So I set her up for a nap, got her a bottle and very quickly after you know her fighting with me she went to sleep and, um, we went on about our day and our routine and everything was fine and, um, it never came back again until later in the afternoon, I think.
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Actually you got home a little early yeah, I was feeling like shit, so you got home a little early and we were all at me ma's house and then uh you kind of um witnessed it again, if you want to explain that yeah, so it was like 2, 2, 30, 3 o'clock I think it was the time frame, um, and she was sitting on the couch and I had asked, like when her last nap was and if she had had a couple of big naps or if she had had a big nap in general.
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And she had not.
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She had had a couple of like small 20 minute naps, 30 minute naps and I think 145.
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Me ma had said and that was really it which normally for her, since you've been back, would be like an at least one hour nap, if not more than an hour.
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Um, and so at that point, like I'm sitting there like talking to her and I see her do that head drop again, and when we're talking about a head drop, it's like very similar to like when we're sitting on the couch or you know you're dozing off and your head kind of just like drops down, like like an uncontrollable yeah like I had kind of painted this picture over the weekend.
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I was talking with finnegan and um, I said you know what, if you put me outside, maybe eight beers deep, on a sunny day, 9, 30 at night, I'm trying to get through extra innings on a yankees game and uh, fighting to keep my head up and they're trying to take the remote away from me like that scenario right like your, your head starts falling down when you're kind of like scares you to being awake, that type of that's what it kind of looks like yeah.
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So, um, I had noticed her do it one time and I was like, oh, what is that?
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And then I had continued watching her because I was like that's strange.
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I never seen her do that before.
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And she was like just playing, acting normal, like nothing had even happened.
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And I was like, oh, maybe she's tired.
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And then, like seconds after, she had done it like repetitively, at least four or five more times right in a row and I was like, wow, that's really strange.
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I ended up picking her up and was like holding her and I gave her a bottle and she ended up like falling asleep in my arms for I think like 20 minutes or so 20, 30 minutes, yeah, probably.
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I think like 20 minutes or so 20, 30 minutes, yeah, probably.
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And then when she woke up, she had been sitting on me and then did it again another like four or five times and I was like, okay, this is not right.
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Like this scares me.
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I actually ended up taking a video of it because I was like I don't really know what this is Like.
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I don't think that this is someone who's just really tired and just keeps dropping her head, because she's doing it in a repetitive motion, as if to be like like a spasm or like a Tourette kind of thing, like I'm trying to like run through neurological things as I work for neurology, like what could this be?
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Um.
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So I ended up actually um sending a video and a message over to the pediatrician and I was like this doesn't seem normal to me.
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Mind you, it's like three o'clock on a friday afternoon.
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They don't want to hear from anybody.
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let's just be honest I think we're fortunate enough that one of them was at our wedding.
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Yes, yeah, the RN, one of the people at the office.
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Yeah, the triage RN.
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So Christine being there, I think things get answered.
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Oh for sure, without that they probably wouldn't be For sure For sure.
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So we send it over and you know instantly Christine gives me a call back and she starts asking like 21 questions, like is this normal?
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Do you see this often?
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And I was like no, this is the first time.
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Dad had seen it this morning around nine o'clock, and that was the only other time that we had witnessed it.
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So she's asking me like a bunch of questions.
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She's like all right, I'm going to go to the doctor.
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Your doctor's not here, but I'm going to go to the two providers that are here.
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And so in the meantime of waiting for Christine, I start like Googling, which I never recommend.
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I work in the healthcare field and I never recommend Googling.
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But I need to get some answers.
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I need to see what exactly this head drop is going to point me in some sort of direction.
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So when I use Google, working in the medical field, I'm not looking for a diagnosis, I'm looking for things that may cause a head drop.
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So I'm looking for diagnoses that are coming forward that are saying like, all right, it's going to be A, b or C, and that way I can look in some sort of direction.
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So, to my surprise, reddit was there, coming in clutch, stating that a lot of children at Paisley's age being six months had parents had seen this head drop thing before and they were marking it as they noticed these things happening after the children had their six-month shots.
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Well, she hasn't gone in for a six-month shot, so I like chalk that up.
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I was like nope, can't be that Can't be affected by the vaccines.
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So what other options do I have here?
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And then other people started mentioning infantile spasms.
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So I'm like, okay, that checks out.
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It's a head drop, a couple of times pretty repetitive, that could be a spasm.
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Fell into a rabbit hole there.
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I copied and pasted that into another Google browser and started looking into infantile spasms.
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Well, if you don't know, infantile spasms actually breaks down to epilepsy.
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Boy did I fall into a rabbit hole?
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And I was like, oh fuck, here we go, like this is scary.
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Now Like, but of course I'm not.
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I'm waiting for the pediatrician to come forward.
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Call me, what have you?
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So I'm still reading.
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Lots of people say that they send their kid the they outgrow it.
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Other people are saying that they put their kid through an EEG and an MRI and just a list of different things.
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Some people are saying don't do it, don't put your kid through an EEG and an MRI and just a list of different things.
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Some people are saying don't do it, don't put your kid through an EEG and an MRI at that age.
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It's terrifying.
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Other parents are like, oh, just let it ride, it'll be fine, the kid will outgrow it, what have you?
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So finally I get a call back from the pediatrician and at this point it's, I think, like almost four o'clock at this point by the time we finally get an answer back.
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Yeah, it was easily after four.
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Yeah, so I'm like all right, like we're barking at four o'clock and I'm like it's four o'clock on a Friday, like I'm probably not going to hear anything.
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Like if it was a concern, they would call me like immediately.
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Well, they called and one of the providers who had watched the video, um, was like oh yeah, no, this is normal.
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I see this all the time.
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Um, this is actually um a developmental underdeveloped six developmental issue.
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Yeah, basically traditional underdeveloped six month old, not saying that she's not developing at the right pace, right, but just saying at six months old you're still developing muscles and you're still trying to hold your head up coordination and you got a big squash.
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You have a hard time keeping it up.
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Yeah, if you're more tired, it's going to be even harder to keep it up.
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Yeah, which was right in line with what I felt in the morning and that's kind of what I was hanging my hat on until I saw it again.
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And then you kind of went down this, this journey that we went on and, um, my original instincts were like she's just overtired and can't keep her damn head up, which they agreed with that.
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So we're like, okay, well, she needs a nap and we're good here.
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Yep, and so we just we took it at that and didn't really think much of it.
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In the meantime I, like I said I had sent the video over to the pediatrician, but I had also sent the video over to one of the neurologists that I work for and honestly, I didn't know like to me it looked like it could possibly be neurological a concern.
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So it was like all right, let me have the neurologist look at it.
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She deals with adults, so she didn't really feel comfortable putting any sort of like exact concern or diagnosis on it.
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She's like let me send this over to one of the neurologists pediatric neurologist that also works for our company and so she had done that, and while we're waiting for him to respond, she's basically like yeah, I don't know, like I don't want to scare you or get you all worked up, don't you know who knows?
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Let's see what he has to say.
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Um, and so we just went about our business.
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I went to walmart, got stuff for dinner, like, took her with me, like, didn't see it again.
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She was taking a nap and um, and we were, we were good we had ended up, um, going for like an hour drive to make sure that she got like a big nap in because she fell asleep in the car.
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Well, that hour nap happened after you got a phone call.
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You got a phone call while you were in Walmart.
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Oh, yes, yes, you're correct.
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So that's right.
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My bad, these 72 hours just kind of mesh together.
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Yeah, so I did get a phone call while I was at Walmart and it was the neurologist, and she basically said that the pediatric neurologist was very concerned and was looking at this being infantile seat spasms, also known as epilepsy, and wanted us to be evaluated immediately like wanted us to drive to Portland, be like seen at the ER, because that provider who reviewed the video, the pediatric neurologist, was actually on call at the Portland Hospital at Barbara Bush.
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Portland Hospital is like our biggest hospital in the state.
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I think right Yep.
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And the children's hospital in there is known as the Barbara Bush.
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Yep, it's the only children's hospital that we actually have here.
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Yeah, it's state of the art, like it's the big, yeah, they have doctors that fly in from all out, like out of the states, like to work here like it's so.
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It's a Friday night and I was outside doing the barn chores and you came home and I could tell when you were coming across the field that you were shaking up and yeah and I kind of started freaking out like what the hell are we talking about here?
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Why would we?
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I thought we've already covered what this is you?
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Know, and uh.
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Now we have this specialist saying like you need to be seen now and they're basically saying you know you should be here right now being admitted um at Barbara and then, as soon as we have the opportunity to put an EEG on, we're going to go through with this testing Because they were concerned that these infantile spasms could be rather damaging and the sooner you catch it, the better off you're going to be.
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Yeah, they said that.
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If that's the case, then they actually like to start the children on the treatment plan within like 48 hours of.
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Yeah, they want to be on this as soon as possible.
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Your likelihood of um like recovery or um you know, increases your chances of um overcoming this stuff.
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The sooner that you can you can get to it.
00:19:41.767 --> 00:19:48.207
So we now have two pediatricians telling us she's fine, don't worry about it.
00:19:48.207 --> 00:19:55.307
We now have two neurologists saying you should be at the children's hospital.
00:19:55.307 --> 00:20:01.087
And then you have you, me and my mother trying to figure out what the hell's going on.
00:20:01.087 --> 00:20:04.348
At this point, paisley just falls asleep for a nap.
00:20:04.400 --> 00:20:05.288
And I said this kid needs a nap.
00:20:05.257 --> 00:21:06.821
just falls asleep for a nap and I said this kid needs a nap let's go for a drive so we drove around we drove around all of kenny, bunk and arundel and lyman and dayton drove around for an hour just let her sleep yeah, and she got a good nap and, as we talked it all out, um, I think we were firm believers that we don't want to hold anything back when it comes to taking care of our child, that we're not going to keep her away from something, but we're going to go with our own instincts and intuition at the moment and say that we know our child, her routine was different, she was tired, she hasn't napped, she clearly needed a nap and we're going to see how she reacts and, um, you know, we're going to kind of see how things go and at least give her the benefit of the doubt of the night and see, you know, for ourselves here, and to not really overanalyze every single thing that happens, but to kind of take it all in and you know we talked to and back and forth on our decisions for the whole hour.
00:21:06.862 --> 00:21:07.442
We drove her out.
00:21:07.442 --> 00:21:08.826
Yeah.
00:21:09.867 --> 00:21:22.664
I think that I just truly felt in that, in that time that you know we need to see more before we can make this decision and, uh, she took a nap, came home and she was fine the rest of the night.
00:21:22.786 --> 00:21:23.627
Yeah, she was eating, she was playing.
00:21:23.627 --> 00:21:25.252
She took a nap, came home and she was fine the rest of the night.
00:21:25.252 --> 00:21:27.278
Yeah, she was eating, she was playing, screaming at us Just playing.
00:21:27.298 --> 00:21:27.739
We never saw her again.
00:21:27.759 --> 00:21:30.528
Talking Not screaming like she was mad, but talking.
00:21:30.528 --> 00:21:38.971
Yeah, we didn't see her again until we went to go put her to bed and she did one head drop, but it was checking out.
00:21:39.200 --> 00:21:46.804
It was right around the time that she she's tired, she immediately goes to rubbing her eyes.
00:21:46.804 --> 00:21:47.586
So that almost confirmed to us.
00:21:47.586 --> 00:21:49.373
Okay, when she's tired, this happens and this we're going to be fine here.
00:21:49.373 --> 00:21:59.226
So we all went to sleep and in the morning, um, I think I was changing her and doing stuff and you were outside doing chores and you got another phone call yeah, the neurologist um had called.
00:22:00.067 --> 00:22:05.473
Um called me and said, hey, not to scare you or anything.
00:22:05.473 --> 00:22:24.174
But the pediatrician neurologist that was on call actually called me this morning and was really concerned that you guys were not there at Portland Hospital and I said, well, to be honest with you, we haven't seen it since.
00:22:24.174 --> 00:22:32.369
Well, to be honest with you, we haven't seen it since and we don't really know, like, what the right avenue is.
00:22:32.369 --> 00:22:40.169
Like we don't want to, we don't want to run every single time something looks different, but we want to also do what's right for her.
00:22:40.169 --> 00:22:42.564
And she was like I can understand that 100% she's like.
00:22:42.564 --> 00:22:55.224
But I can tell you right now there are two neurologists that are looking at these videos that are concerned enough to call me on a Saturday to ask me why your friends are not here and they're on call.
00:22:55.224 --> 00:22:58.749
They're not going to make more work for themselves if they think it's a Saturday morning.
00:22:58.848 --> 00:22:59.590
It's a Saturday morning.
00:22:59.791 --> 00:23:03.664
Yeah, they're not going to make any more work for themselves if they don't have to see a patient.
00:23:03.664 --> 00:23:10.556
Like they were genuinely concerned about what they had seen and wanted us there immediately.
00:23:10.556 --> 00:23:28.023
And so I had come inside and just basically like said to you like hey, listen, like I still don't know what to do, I don't want to make any decisions on my own, but the phone call that I just got was from the neurologist and the pediatric neurologist and they want to see her now.
00:23:28.023 --> 00:23:41.354
They want her there at the emergency room and the EEG techs are only there until noon and if we can get there, they will hold them there and have her hooked up.
00:23:41.354 --> 00:23:42.580
That's how concerned they are.
00:23:43.021 --> 00:23:44.324
For people to understand too.
00:23:44.324 --> 00:23:54.296
This EEG test basically there's a bunch of little electrical, like little wires, that get glued to your head.
00:23:54.296 --> 00:23:58.088
I mean, I don't know 15 or 20 of them, basically right.
00:23:58.329 --> 00:23:58.852
On each side.
00:24:00.144 --> 00:24:01.127
So it's all over the place.
00:24:01.127 --> 00:24:06.603
There's a big trail of wires that get plugged into a box that you know gets attached to you.
00:24:06.603 --> 00:24:24.846
Um, that gets kind of all wrapped up on your head and it's a 24 hour minimum on this test because they want to see your brain activity in the daytime, processing things, how you, how your brain works when you're taking naps, when you're sleeping at night, when you're eating, when you're playing and then when these events happen.
00:24:24.865 --> 00:24:28.574
So so they do the test for 24 hours with a child.
00:24:28.574 --> 00:24:37.809
It all has to happen there with a camera on the child, so they're being videoed at the same time and it's a 24-hour process.
00:24:37.809 --> 00:24:42.885
So when you were reading the day before all these things, people are saying like don't do this, don't do this to your kid.
00:24:42.885 --> 00:24:45.549
So in the back of our mind we're thinking about this too.
00:24:45.549 --> 00:24:56.681
But when we now have, you know, a neurologist calling on a Saturday saying like we're expecting you to be here this is serious.