March 26, 2025

Benign Myoclonus Of Infancy 246

Benign Myoclonus Of Infancy 246
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The moment you notice something isn't right with your child, your entire world shifts on its axis. For us, that moment came when our six-month-old daughter Paisley began experiencing strange head-dropping episodes that would ultimately lead us on an unexpected 72-hour journey through fear, uncertainty, and eventually, profound relief.

What started as a routine Friday quickly spiraled into a whirlwind of medical consultations that left us caught between two drastically different opinions. Our trusted pediatrician assured us these episodes were merely developmental—a six-month-old's muscles still learning to support a heavy head when tired. Meanwhile, neurologists reviewing the same footage urgently directed us to the children's hospital, using words no parent ever wants to hear: infantile spasms, potential epilepsy, developmental concerns.

The hours spent in Barbara Bush Children's Hospital were simultaneously endless and fleeting. Watching technicians attach electrodes to our baby's head while she looked at us with confusion and betrayal tested every fiber of our being. Yet through it all, Paisley remained remarkably resilient, smiling and charming everyone who entered her room, becoming the unexpected bright spot for hospital staff during their difficult shifts.

What this experience taught us transcends the medical diagnosis. When you're sitting in a hospital room, staring at your child connected to monitors, everything else in life—work stress, financial worries, petty grievances—simply evaporates. We found ourselves making silent promises to give up absolutely everything if it meant she would be okay. The profound clarity about what truly matters in life is perhaps the unexpected gift hidden within this terrifying experience.

We're sharing this intensely personal journey because we know someone listening needs to hear they're not alone in their medical uncertainty or parental fear. If our story helps just one family feel less isolated during their own struggle, or encourages someone to trust their parental instincts, then exposing this vulnerable chapter of our lives will have been worth it.

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00:00 - The Emotional Roller Coaster Begins

05:46 - Noticing Strange Head Dropping Episodes

15:21 - Medical Advice: Two Contrasting Opinions

24:38 - Arriving at Barbara Bush Children's Hospital

35:14 - The Test Begins: EEG Monitoring

46:58 - Finding Hope in Uncertainty

01:01:12 - The Call That Changed Everything

01:11:56 - Coming Home with Benign Myoclonus

01:24:37 - Lessons in Faith and Priorities

WEBVTT

00:00:01.824 --> 00:00:06.373
The past 72 hours have been an emotional roller coaster for the Liberty family.

00:00:06.373 --> 00:00:16.670
A routine day with Paisley spirals into multiple calls and messages with medical professionals, resulting in a weekend spent at the children's hospital.

00:00:16.670 --> 00:00:21.731
We get through it all with faith and positivity.

00:00:21.731 --> 00:00:23.283
That and so much more.

00:00:23.283 --> 00:00:28.603
On today's episode of Share the Struggle podcast, let me tell you something.

00:00:28.603 --> 00:00:30.329
Everybody struggles.

00:00:30.329 --> 00:00:35.784
The difference is some people choose to go through it and some choose to grow through it.

00:00:35.784 --> 00:00:38.229
The choice is completely yours.

00:00:38.229 --> 00:00:43.750
Which one you choose will have a very profound effect on the way you live.

00:00:43.771 --> 00:00:48.299
your life will have a very profound effect on the way you live your life.

00:00:48.299 --> 00:00:54.084
If you find strength in the struggle, then this podcast is for you.

00:00:54.084 --> 00:01:08.155
If you have a relationship that is comfortable with uncomfortable conversations uncomfortable conversations challenge you, humble you and they build you.

00:01:08.174 --> 00:01:11.027
When you sprinkle a little time and distance on it, it all makes sense.

00:01:11.027 --> 00:01:14.588
Most disagreements they stem from our own insecurities.

00:01:15.959 --> 00:01:22.248
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.

00:01:38.066 --> 00:01:44.251
Good Lord, almighty, am I so excited to be back with you?

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Oh, it's true, it's damn true.

00:01:46.933 --> 00:01:51.257
And right now it is dumping snow outside.

00:01:51.257 --> 00:01:52.677
Can you see that from where you're at?

00:01:52.677 --> 00:01:53.278
Mm-hmm.

00:01:54.120 --> 00:01:54.180
Wow.

00:01:54.200 --> 00:01:55.144
Yeah, those are big flakes.

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Big flakes right there, not referring to dandruff or that's gross or flighty people.

00:02:02.352 --> 00:02:04.700
We got big flakes right now.

00:02:04.700 --> 00:02:19.629
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.

00:02:22.408 --> 00:02:23.834
From the seat of our couch.

00:02:24.256 --> 00:02:29.111
Yeah, the old doodling couches have come in handy for today's episode of the podcast.

00:02:29.111 --> 00:02:34.604
Y'all might be a little bit surprised by the intro to today's show, the B-roll.

00:02:34.604 --> 00:02:54.193
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.

00:02:54.193 --> 00:02:57.106
What a what a time, what a difficult time for us.

00:02:57.106 --> 00:03:03.444
As we mentioned, it's been an incredibly challenging 72 hours or so.

00:03:03.444 --> 00:03:09.300
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.

00:03:09.300 --> 00:03:20.104
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.

00:03:20.104 --> 00:03:20.787
What do you say?

00:03:21.307 --> 00:03:23.133
Yeah, let's share it.

00:03:24.259 --> 00:03:29.883
So Friday we're going to the the curtain back to friday and uh, it was a.

00:03:29.883 --> 00:03:32.609
It was a routine day on friday.

00:03:32.609 --> 00:03:42.105
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.

00:03:42.105 --> 00:03:54.894
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.

00:03:54.894 --> 00:04:02.687
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.

00:04:02.687 --> 00:04:26.255
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.

00:04:26.255 --> 00:04:29.870
So it's kind of Meemaw's day with Paisley.

00:04:29.980 --> 00:04:31.379
But Meemaw had an appointment.

00:04:31.379 --> 00:04:34.891
So this morning her routine was a little bit different.

00:04:34.891 --> 00:04:40.225
So she got up and she had her breakfast in the car seat on the way to drop Meemaw off.

00:04:40.225 --> 00:04:56.288
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.

00:04:56.288 --> 00:05:03.050
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.

00:05:03.050 --> 00:05:04.583
We call it.

00:05:04.583 --> 00:05:11.687
I think that, lady, we picked up one of those I don't know what the technical term for this thing is.

00:05:12.521 --> 00:05:23.625
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.

00:05:23.846 --> 00:05:24.067
Circle.

00:05:24.067 --> 00:05:31.101
Of doom it wasn't doom.

00:05:31.122 --> 00:05:31.603
You added that yourself.

00:05:31.603 --> 00:05:31.865
It was the.

00:05:31.865 --> 00:05:32.307
Don't call it neglect.

00:05:32.307 --> 00:05:32.750
That sounds terrible.

00:05:32.750 --> 00:05:33.333
Oh, that's what they call it.

00:05:33.333 --> 00:05:38.788
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.

00:05:38.788 --> 00:05:42.324
That's what this lady had kind of phrased it as.

00:05:42.324 --> 00:05:44.555
But anyways, we got these things all over the house.

00:05:44.555 --> 00:05:58.755
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.

00:05:58.797 --> 00:06:13.346
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.

00:06:13.346 --> 00:06:18.343
Originally my first instincts were because she loves to put everything in her mouth.

00:06:18.343 --> 00:06:32.223
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.

00:06:33.867 --> 00:06:38.601
When this um happens the first time, I was like oh, she must be trying to get to that.

00:06:38.601 --> 00:06:45.353
And it happened a second time, like real back to back, and I thought she was trying to get to like the blinking lights.

00:06:45.353 --> 00:07:05.951
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.

00:07:06.841 --> 00:07:15.338
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?

00:07:15.358 --> 00:07:17.668
is it doesn't even have to be fun.

00:07:18.322 --> 00:07:21.142
Yeah, her definition of remotely cool could be two people talking, you know what I mean.

00:07:21.142 --> 00:07:22.204
It could be two people talking, you know what I mean.

00:07:22.204 --> 00:07:25.533
It could be lights in a store, it could be a program on TV.

00:07:25.533 --> 00:07:31.576
It does whatever she, if the dogs are moving around quickly, like a little more quicker than expected, that's fun.

00:07:31.576 --> 00:07:32.497
I got to keep an eye on this.

00:07:32.779 --> 00:07:36.151
She'll be laying down like in that position, like half eyes closed.

00:07:36.151 --> 00:07:41.250
The dog will walk by and she, like full undertaker, sits up straight what the hell's going on here.

00:07:41.250 --> 00:07:44.802
Looking around, like what the hell's going on here?

00:07:44.822 --> 00:07:45.666
looking around like I gotta do something.

00:07:45.666 --> 00:07:46.672
I gotta be a part of this, don't leave me out.

00:07:46.672 --> 00:07:48.661
So this kid, when she's having a blast, she definitely doesn't want to shut it down.

00:07:48.661 --> 00:07:50.685
She's uh, she's all gas, no brakes.

00:07:50.685 --> 00:07:52.509
She doesn't want to take a take and shut it down.

00:07:52.509 --> 00:07:58.069
So, um, I'm like, okay, you're, you're tired, but it was kind of a flag of like.

00:07:58.069 --> 00:07:59.052
That seemed weird.

00:07:59.052 --> 00:08:00.641
I've never seen you do that before.

00:08:00.641 --> 00:08:03.446
She dropped her head about five or six times in a row.

00:08:03.446 --> 00:08:06.690
But I picked her up and immediately she went to rubbing her eyes.

00:08:06.690 --> 00:08:09.595
Her eyes were red and she looked like she was really tired.

00:08:09.595 --> 00:08:27.822
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.

00:08:27.882 --> 00:08:53.643
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.

00:08:54.184 --> 00:08:54.888
And she had not.

00:08:54.888 --> 00:09:01.043
She had had a couple of like small 20 minute naps, 30 minute naps and I think 145.

00:09:01.043 --> 00:09:10.910
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.

00:09:10.910 --> 00:09:33.508
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.

00:09:33.989 --> 00:10:01.345
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.

00:10:01.384 --> 00:10:04.993
So, um, I had noticed her do it one time and I was like, oh, what is that?

00:10:04.993 --> 00:10:11.009
And then I had continued watching her because I was like that's strange.

00:10:11.009 --> 00:10:13.160
I never seen her do that before.

00:10:13.160 --> 00:10:19.274
And she was like just playing, acting normal, like nothing had even happened.

00:10:19.274 --> 00:10:21.542
And I was like, oh, maybe she's tired.

00:10:21.542 --> 00:10:33.059
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.

00:10:33.139 --> 00:10:43.474
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.

00:10:43.474 --> 00:10:46.120
I think like 20 minutes or so 20, 30 minutes, yeah, probably.

00:10:46.120 --> 00:10:52.799
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.

00:10:52.799 --> 00:10:54.366
Like this scares me.

00:10:55.140 --> 00:11:00.600
I actually ended up taking a video of it because I was like I don't really know what this is Like.

00:11:00.600 --> 00:11:22.505
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?

00:11:22.505 --> 00:11:24.451
Um.

00:11:24.451 --> 00:11:32.173
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.

00:11:32.173 --> 00:11:35.633
Mind you, it's like three o'clock on a friday afternoon.

00:11:35.633 --> 00:11:37.399
They don't want to hear from anybody.

00:11:37.519 --> 00:11:42.969
let's just be honest I think we're fortunate enough that one of them was at our wedding.

00:11:43.629 --> 00:11:45.633
Yes, yeah, the RN, one of the people at the office.

00:11:45.633 --> 00:11:46.815
Yeah, the triage RN.

00:11:47.139 --> 00:11:50.668
So Christine being there, I think things get answered.

00:11:50.668 --> 00:11:53.474
Oh for sure, without that they probably wouldn't be For sure For sure.

00:11:54.480 --> 00:12:00.408
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?

00:12:00.408 --> 00:12:01.542
Do you see this often?

00:12:01.542 --> 00:12:03.524
And I was like no, this is the first time.

00:12:03.524 --> 00:12:08.533
Dad had seen it this morning around nine o'clock, and that was the only other time that we had witnessed it.

00:12:08.533 --> 00:12:11.227
So she's asking me like a bunch of questions.

00:12:11.227 --> 00:12:12.658
She's like all right, I'm going to go to the doctor.

00:12:12.658 --> 00:12:16.649
Your doctor's not here, but I'm going to go to the two providers that are here.

00:12:17.812 --> 00:12:25.152
And so in the meantime of waiting for Christine, I start like Googling, which I never recommend.

00:12:25.152 --> 00:12:28.268
I work in the healthcare field and I never recommend Googling.

00:12:28.268 --> 00:12:29.491
But I need to get some answers.

00:12:29.491 --> 00:12:37.214
I need to see what exactly this head drop is going to point me in some sort of direction.

00:12:37.214 --> 00:12:46.736
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.

00:12:46.736 --> 00:12:56.027
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.

00:12:56.628 --> 00:13:19.950
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.

00:13:19.950 --> 00:13:22.360
Well, she hasn't gone in for a six-month shot, so I like chalk that up.

00:13:22.360 --> 00:13:27.826
I was like nope, can't be that Can't be affected by the vaccines.

00:13:27.826 --> 00:13:29.986
So what other options do I have here?

00:13:29.986 --> 00:13:35.511
And then other people started mentioning infantile spasms.

00:13:35.511 --> 00:13:38.714
So I'm like, okay, that checks out.

00:13:38.714 --> 00:13:45.432
It's a head drop, a couple of times pretty repetitive, that could be a spasm.

00:13:45.432 --> 00:13:46.701
Fell into a rabbit hole there.

00:13:46.701 --> 00:13:53.961
I copied and pasted that into another Google browser and started looking into infantile spasms.

00:13:53.961 --> 00:13:59.110
Well, if you don't know, infantile spasms actually breaks down to epilepsy.

00:13:59.110 --> 00:14:01.062
Boy did I fall into a rabbit hole?

00:14:01.062 --> 00:14:05.091
And I was like, oh fuck, here we go, like this is scary.

00:14:05.091 --> 00:14:07.222
Now Like, but of course I'm not.

00:14:07.222 --> 00:14:10.110
I'm waiting for the pediatrician to come forward.

00:14:10.110 --> 00:14:11.280
Call me, what have you?

00:14:11.280 --> 00:14:13.005
So I'm still reading.

00:14:13.386 --> 00:14:17.682
Lots of people say that they send their kid the they outgrow it.

00:14:17.682 --> 00:14:23.823
Other people are saying that they put their kid through an EEG and an MRI and just a list of different things.

00:14:23.823 --> 00:14:26.216
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.

00:14:26.216 --> 00:14:30.750
Some people are saying don't do it, don't put your kid through an EEG and an MRI at that age.

00:14:30.750 --> 00:14:31.993
It's terrifying.

00:14:31.993 --> 00:14:38.600
Other parents are like, oh, just let it ride, it'll be fine, the kid will outgrow it, what have you?

00:14:38.600 --> 00:14:50.235
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.

00:14:50.740 --> 00:14:52.547
Yeah, it was easily after four.

00:14:52.668 --> 00:15:00.787
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.

00:15:00.787 --> 00:15:03.489
Like if it was a concern, they would call me like immediately.

00:15:03.489 --> 00:15:10.673
Well, they called and one of the providers who had watched the video, um, was like oh yeah, no, this is normal.

00:15:10.673 --> 00:15:11.880
I see this all the time.

00:15:11.880 --> 00:15:20.859
Um, this is actually um a developmental underdeveloped six developmental issue.

00:15:21.019 --> 00:15:34.812
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.

00:15:34.860 --> 00:15:35.923
You have a hard time keeping it up.

00:15:35.923 --> 00:15:39.159
Yeah, if you're more tired, it's going to be even harder to keep it up.

00:15:39.159 --> 00:15:48.182
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.

00:15:48.182 --> 00:15:59.143
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.

00:15:59.143 --> 00:16:02.548
So we're like, okay, well, she needs a nap and we're good here.

00:16:02.769 --> 00:16:08.527
Yep, and so we just we took it at that and didn't really think much of it.

00:16:08.527 --> 00:16:29.919
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.

00:16:29.919 --> 00:16:34.129
So it was like all right, let me have the neurologist look at it.

00:16:34.129 --> 00:16:42.590
She deals with adults, so she didn't really feel comfortable putting any sort of like exact concern or diagnosis on it.

00:16:42.590 --> 00:17:05.048
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?

00:17:05.048 --> 00:17:06.290
Let's see what he has to say.

00:17:07.212 --> 00:17:09.597
Um, and so we just went about our business.

00:17:09.597 --> 00:17:14.208
I went to walmart, got stuff for dinner, like, took her with me, like, didn't see it again.

00:17:14.208 --> 00:17:26.189
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.

00:17:26.819 --> 00:17:30.411
Well, that hour nap happened after you got a phone call.

00:17:30.411 --> 00:17:33.365
You got a phone call while you were in Walmart.

00:17:34.127 --> 00:17:35.351
Oh, yes, yes, you're correct.

00:17:35.351 --> 00:17:37.105
So that's right.

00:17:37.105 --> 00:17:40.868
My bad, these 72 hours just kind of mesh together.

00:17:40.868 --> 00:18:15.846
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.

00:18:16.361 --> 00:18:19.409
Portland Hospital is like our biggest hospital in the state.

00:18:19.489 --> 00:18:20.451
I think right Yep.

00:18:20.720 --> 00:18:23.569
And the children's hospital in there is known as the Barbara Bush.

00:18:23.589 --> 00:18:26.885
Yep, it's the only children's hospital that we actually have here.

00:18:26.885 --> 00:18:37.413
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.

00:18:37.432 --> 00:18:49.221
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?

00:18:49.221 --> 00:18:49.964
Why would we?

00:18:49.964 --> 00:18:52.815
I thought we've already covered what this is you?

00:18:52.815 --> 00:18:54.038
Know, and uh.

00:18:54.099 --> 00:19:20.630
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.

00:19:20.799 --> 00:19:21.421
Yeah, they said that.

00:19:21.421 --> 00:19:28.893
If that's the case, then they actually like to start the children on the treatment plan within like 48 hours of.

00:19:29.053 --> 00:19:31.021
Yeah, they want to be on this as soon as possible.

00:19:31.021 --> 00:19:40.044
Your likelihood of um like recovery or um you know, increases your chances of um overcoming this stuff.

00:19:40.044 --> 00:19:41.767
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.

00:24:56.701 --> 00:24:58.223
We need to see what's going on.

00:24:58.223 --> 00:24:59.125
At that point it's out of our hands.

00:24:59.125 --> 00:25:02.289
We have to go do this and like, like you said, you know we want to do what's right decision is.

00:25:02.289 --> 00:25:05.855
So, um, we headed to uh, to the hospital.

00:25:06.420 --> 00:25:06.901
Yeah yeah.

00:25:06.901 --> 00:25:09.047
We headed to the Portland um hospital.

00:25:09.047 --> 00:25:17.642
Um walked in through the ER, um, as we were directed, um did a couple of name drops for the neurologist because they were expecting us.

00:25:17.642 --> 00:25:22.093
Um, and the staff downstairs was, I'll tell you they were really quick.

00:25:22.093 --> 00:25:40.011
They were really quick when it came to me walking in, because you were parking the car and I was walking in with a newborn or a baby, uh with uh in a carrier by the time I had the car parked and came inside, you guys were two minutes away from being done with your whole check-in and we were going to a room yeah, which is?

00:25:40.413 --> 00:25:43.284
I mean, I don't know about y'all but, or where your ER is.

00:25:43.284 --> 00:25:45.087
But that's's pretty quick, that's pretty stat.

00:25:46.290 --> 00:25:52.617
Put it this way, my dad showed up at the ER bleeding and having a heart attack dropped off.

00:25:52.617 --> 00:25:59.990
You know, literally had, you know, the ambulance, call it in and you guys waited in the lobby for hours.

00:26:00.270 --> 00:26:02.034
Yeah, for five hours and then we got a room.

00:26:02.034 --> 00:26:35.392
Yeah, so we're talking about having a room in you know five minutes and they also have like an adult wing and so like, when I like name dropped the neurologist who's on call, like, they immediately pulled Paisley's record and was checking the notes and he had already put notes in there at 9 am and we were not even there.

00:26:35.392 --> 00:26:37.067
We got there at like 11.

00:26:37.067 --> 00:26:42.825
He already had notes in there and was already messaging the pediatrician telling them that they were absolutely wrong.

00:26:42.825 --> 00:26:44.269
This is a concern.

00:26:44.269 --> 00:26:48.432
This is not just your standard um six month old who can't hold her head up like they.

00:26:48.432 --> 00:26:49.698
He was on it.

00:26:49.698 --> 00:26:50.881
He was that concerned.

00:26:50.881 --> 00:27:01.086
Um, so, yeah, we get into the room and this doctor walks in who's what, like eight feet tall, like, oh yeah, that guy was huge, oh my god.

00:27:01.166 --> 00:27:04.744
I mean, he's not eight feet, but he was at least seven he's at least seven feet at least seven feet tall.

00:27:04.744 --> 00:27:20.182
He had to duck to get in the door and of course he's dealing with children, so how intimidating is that fucking jack-o'-lantern stock well, paisley's not intimidated by big people no, but uh, yeah, he walks in like, checks out, like um they all loved her, everybody in that whole process everybody yeah.

00:27:20.261 --> 00:27:26.634
so they came in um and was yeah, you know, I'd really like to, I'd like to admit her.

00:27:26.634 --> 00:27:29.544
And here's what's going to happen.

00:27:29.544 --> 00:27:34.320
Like she's going to get admitted and they'll do an EEG on Monday.

00:27:34.320 --> 00:27:37.170
And I looked him dead in his face and I said absolutely not, it's not going to happen.

00:27:37.170 --> 00:27:40.888
I said I've already been talking to Dr Heiss and he is expecting her.

00:27:40.888 --> 00:27:43.776
He said specifically that he was holding the team.

00:27:43.776 --> 00:27:45.621
He wanted us here before noon.

00:27:45.621 --> 00:27:46.923
I'm not holding off.

00:27:46.923 --> 00:27:49.289
We are not going to sit here until Monday.

00:27:49.289 --> 00:27:50.153
It's not going to happen.

00:27:50.153 --> 00:27:51.826
That's going to put her out of her element.

00:27:51.826 --> 00:27:52.731
That is going.

00:27:52.731 --> 00:27:54.298
She's going to get uncomfortable.

00:27:54.298 --> 00:27:54.961
We're not doing it.

00:27:54.961 --> 00:27:58.924
If you're going to hold her here until Monday to do that, we're leaving.

00:27:58.924 --> 00:28:00.467
We're not doing this.

00:28:00.467 --> 00:28:15.067
And so, like he had left and like, oh no, he had, he had left and then came back with the supervisor to tell us that they were admitting she got two two-thirds of a word out of her mouth and got bitch slapped back she said monday space.

00:28:15.126 --> 00:28:22.000
Yeah, she said monday and I said you better take your fucking monday ass right around left the room and we're like, okay, well, there's that, yeah no, I was.

00:28:22.321 --> 00:28:24.204
I was standing 10 toes down on business.

00:28:24.204 --> 00:28:32.900
I am not going to let my daughter sit here until Monday, when I know for a fact that I am talking to two neurologists on the back end that they don't actually know about that.

00:28:32.900 --> 00:28:38.768
That neurologist is waiting for us and so I was not taking that as an answer.

00:28:38.768 --> 00:28:55.973
So that neurologist, dr Heiss, actually came down, spoke with us, did an exam and I showed him the video, showed everybody the video, and he had run down infantile spasms and what to expect.

00:28:55.973 --> 00:28:59.548
You know what the outcome could be.

00:28:59.548 --> 00:29:03.240
The cause of it Like he went over everything.

00:29:04.282 --> 00:29:07.806
This is when things begin to become extremely scary for us.

00:29:07.960 --> 00:29:09.140
Yeah, extremely serious.

00:29:09.180 --> 00:29:14.626
Because all signs based off of what our conversation now point to these infertile spasms.

00:29:14.626 --> 00:29:23.250
And this begins the long road of developmental issues where you don't know what they're going to be.

00:29:23.250 --> 00:29:29.971
This could be learning disabilities, it could be motor skills disabilities, but it's going to have some kind of effect.

00:29:29.971 --> 00:29:38.564
And his thing is saying, like the best case opportunity or best case scenario for this is finding this as quickly as possible.

00:29:38.564 --> 00:29:47.942
And he said this is an extreme case for me because you guys are here within 24 hours of the first signs of these seizures this doesn't happen.

00:29:48.063 --> 00:29:54.508
Yeah, he says I usually see patients at, you know, three months in and you know the the pediatrician will be like, oh, what was that?

00:29:54.508 --> 00:29:56.722
Like they're doing some sort of episode.

00:29:56.722 --> 00:29:59.921
And the parents will be like, oh yeah, they've been doing that, like didn't think anything of it.

00:29:59.921 --> 00:30:09.779
And then they have to go start the process and basically backtrack and like try to get the treatment necessary to basically fix the last three months.

00:30:09.779 --> 00:30:18.738
He tells us that you know we would administer an EEG 24-hour test, possibly 48-hour test.

00:30:18.978 --> 00:30:21.425
If we couldn't get the episodes, if we couldn't get the episodes to happen.

00:30:21.465 --> 00:30:22.328
He needs enough data.

00:30:22.328 --> 00:30:26.902
Couldn't get the episodes to happen.

00:30:26.902 --> 00:30:27.904
He needs enough data upon those results.

00:30:27.904 --> 00:30:45.513
If they determine that this is what's happening, then, um, they would schedule an mri where she would have to be put under anesthesia yeah, because she can't sit still that long to determine, you know, what areas of the brain are affected, to then decide on the best course of action for medicine, most likely a steroid.

00:30:45.513 --> 00:30:52.839
And he says we want these things all administered, this medicine to be administered within three days of the diagnosis.

00:30:52.839 --> 00:30:54.928
Like we want to be on this.

00:30:54.928 --> 00:31:06.113
That is our best case chance of trying to defeat this or to slow this, but even so, the success rate in medicine is 50% to 60%.

00:31:06.280 --> 00:31:07.285
Yeah, it wasn't very good odds.

00:31:09.122 --> 00:31:13.573
The best case scenario was a 60% chance of this making a difference.

00:31:13.573 --> 00:31:28.740
And he said you know, I think we could be looking more towards that higher percent chance based off of how soon you guys have found this, yeah, this, yeah.

00:31:28.740 --> 00:31:49.476
But um, to start hearing the, you know the words of epilepsy and developmental issues and disabilities and um, like, everything just starts to, just starts to punch you in the face at that point yeah and so, uh, as he's going over all these things, he says you know, I want to admit her and we'll start the process.

00:31:49.576 --> 00:31:52.968
And I called him on it and I said, well, they just said Monday.

00:31:52.968 --> 00:31:54.291
And he was like, absolutely not.

00:31:54.291 --> 00:31:59.529
He's like I have an EEG tech with her name on that list right now.

00:31:59.529 --> 00:32:06.251
There's a possibility that they can hook her up today, if not tomorrow morning by 8 am.

00:32:06.251 --> 00:32:08.468
She has a bed upstairs waiting for her.

00:32:08.468 --> 00:32:10.865
He's like I have him holding it.

00:32:10.865 --> 00:32:31.311
And again, if we just circle back to the fact of like we were in the emergency room and within five minutes we're in an ER room, and now it's been at least a couple of hours of the providers coming in and doing their, doing their evaluations and forming a game plan, and now we're right upstairs and have a bed.

00:32:32.101 --> 00:32:40.984
Like this is very quick turnaround, one of the most difficult areas probably, you know, in the state to get a bed, yeah right yeah, because it's.

00:32:41.346 --> 00:32:48.440
It's the only children's hospital in our state and there's never a bed open.

00:32:48.440 --> 00:32:52.951
And if there's a bed open like I, looked at you and I was like we have to do it.

00:32:52.951 --> 00:32:53.883
We can't hold.

00:32:55.059 --> 00:33:00.712
I could schedule you for a time even at 8 o'clock in the morning, but he's like it's RSV, like flu season right now.

00:33:00.712 --> 00:33:03.990
Kids come in here tonight and get admitted even for a flu.

00:33:03.990 --> 00:33:10.363
We're not going to have a room and then I'm writing referrals for you to get a test and then now we're talking that it could be a week.

00:33:10.683 --> 00:33:26.833
And I know how neurology is in his office because I work for the Biddeford office and so I know for a fact that I mean I understand that children are different, but I know for a fact that they are booking six months to a year out in Scarborough.

00:33:26.833 --> 00:33:31.612
I know that because we have their patients call us our office all the time.

00:33:31.612 --> 00:33:40.211
So, like I am not interested in holding out on a referral, as soon as he said referral for a neural, I'm like nope, not back up, we're not doing that.

00:33:40.211 --> 00:33:45.941
So I was like we're doing it, like if you can.

00:33:45.941 --> 00:33:51.361
I was like if you can promise me that she'll be hooked up by tomorrow, no matter what, by 8 am, if not today, then fine, we'll do it, we'll do it.

00:33:51.361 --> 00:33:56.463
And he was like, okay, then we're doing this like we're gonna, we're gonna get upstairs, we're gonna get her all checked in.

00:33:56.463 --> 00:33:59.153
They may come um and and hook her up.

00:33:59.294 --> 00:34:03.284
And by the end of the conversation he did come back and say, unfortunately they're not.

00:34:03.284 --> 00:34:04.567
They do not have her on the list.

00:34:04.567 --> 00:34:07.953
There's just been too many patients ahead of her.

00:34:07.953 --> 00:34:18.471
Mind you, that EEG tech had already been over her shift by like three hours and they were still trying to get Paisley on the list.

00:34:18.471 --> 00:34:23.190
They were supposed to be out of there by noon.

00:34:23.190 --> 00:34:26.144
That was like nine to noon is the only time that they were supposed to be out of there by noon.

00:34:26.144 --> 00:34:36.954
That was like nine to noon is the only time that they were there and we were getting upstairs at three o'clock and she was just leaving, like she had not had the opportunity to to hook Paisley up, but 7.45 the next morning.

00:34:37.777 --> 00:34:38.318
She was in there.

00:34:39.125 --> 00:34:43.114
She was in there, yeah, so to get back to our Saturday at the hospital.

00:34:43.364 --> 00:34:54.817
They bring us up to the Barbara Bush Children's Wing and we get settled in there and it was just such an odd feeling.

00:34:56.485 --> 00:35:09.400
Oh, I walked in and I started crying because the the bed they have in there is so heartbreaking, because you always see those pictures of children who are so sick.

00:35:09.746 --> 00:35:41.400
Yeah, and they're in those, those chambers, and I was like just knowing that we're on that wing um was was difficult and um thinking about the possibilities of this maybe becoming a regular in our lives and those things was all just kind of weighing on me and I kept trying to trying to push that out and I also kept thinking about the children that I think about on that wing and telling myself that we don't belong here.

00:35:41.625 --> 00:35:42.949
You know, she's too healthy for this.

00:35:42.949 --> 00:35:43.893
We don't belong here.

00:35:43.893 --> 00:35:51.556
I feel like we're taking something away from a child that needs it, like I was going through, like guilt and denial, you know the whole time.

00:35:51.556 --> 00:35:59.137
The last time I was on that wing was many, many years ago.

00:35:59.137 --> 00:36:07.697
My cousin, tammy and Howie, their little son, had been on that wing and spent quite a bit of time there.

00:36:07.737 --> 00:36:11.474
Shortly after birth they wanted to do something as a thank you.

00:36:11.474 --> 00:36:14.628
We raised all these turkey points.

00:36:14.628 --> 00:36:16.753
They used to call it back in the day, shaw's used to.

00:36:16.753 --> 00:36:18.155
You spend so much money.

00:36:18.155 --> 00:36:21.802
You get points towards, like thanksgiving dinners, like all this.

00:36:21.802 --> 00:36:23.585
You know the whole fixings, the whole nine.

00:36:23.606 --> 00:36:41.577
So we ran this campaign to save as many of those as possible to feed the barber bush wing for thanksgiving and, um, it was tammy's idea and and we collected all these turkey points and mom worked at shaw's and we had so many turkey dinners, you know, full turkeys and all the fixings and everything.

00:36:41.577 --> 00:37:19.650
And I remember going to the hospital, you know, in the morning on Thanksgiving morning, you know, super early, and rolling in there and setting up tables and and just putting out this whole spread and going into children's rooms that, um, you know couldn't come out to have dinner or to go talk to them and I remember sitting down and playing video games with a kid on his bed and just my image of that place was I don't know man, 25 years old, right, and to think about the heartache and the things that those kids went through and like it was hard.

00:37:19.650 --> 00:37:21.235
It was hard to process that we're there.

00:37:21.235 --> 00:37:22.498
You know what I mean, yeah.

00:37:22.925 --> 00:37:35.465
And, um, one of the things that, um, I kept thinking about is that my timeline has been full of friends that they're they're battling issues with their children.

00:37:35.465 --> 00:37:54.750
You know, you have, uh, we have like family of family that's going through it, you know, and friends and acquaintances and like I don't know, I don't know how to really put this out there, but we've been extremely private and quiet about this situation.

00:37:54.750 --> 00:38:01.518
We're sharing this on the podcast because this is the deal we made with this show.

00:38:01.625 --> 00:38:10.715
This is the obligation we have to the listeners and to our daughter that we're always going to share these things because there's strength in this for somebody right, absolutely.

00:38:10.885 --> 00:38:14.655
And there's going to be somebody listening that's going to go through this or deal with this.

00:38:14.655 --> 00:38:19.307
That's why we're doing this, but we haven't we've been private about this.

00:38:19.307 --> 00:38:22.876
You know, nobody really knows about this until this episode comes out.

00:38:22.876 --> 00:38:41.431
Um, part of the reason for that in my justification in my mind, was that, like I, I didn't want to put it out there and and wrongfully take attention and prayers away from somebody that needed it I don't know if that sounds funny to people.

00:38:41.610 --> 00:38:42.152
You know what I mean.

00:38:42.152 --> 00:38:48.434
But like to me, I was like if I were to post right now where we are and what we're going through without knowing anything.

00:38:48.434 --> 00:38:52.766
That's basically just like taking attention.

00:38:52.766 --> 00:38:54.268
Does that make sense?

00:38:54.568 --> 00:39:03.400
I also didn't want to post because I didn't want to be flooded with a bunch of text messages and Facebook posts and stuff like that.

00:39:03.400 --> 00:39:06.795
Like, my attention was on her the entire time.

00:39:06.844 --> 00:39:08.793
I wholeheartedly just wanted to put all my energy into her.

00:39:09.326 --> 00:39:36.869
And that place sucks the energy out of you like just watching our little girl go through whatever she's dealing with, the uncertainty of like what the outcome is, and you know, having them come in and like, poke and prod her, like just I mentally did not have the capacity to eat, I didn't have the mental capacity to sleep, I didn't have the mental capacity to sleep.

00:39:36.869 --> 00:39:52.291
I constantly would just stare at her and and wonder why, and and just pray that everything was going to be okay and that you know we're strong enough to to come out on top of this.

00:39:52.291 --> 00:39:59.791
And I mean it's okay, like that we that we post and or not post, but talk about it now and and people want to reach out because we're home now.

00:39:59.952 --> 00:40:01.076
Yeah, it's different.

00:40:01.076 --> 00:40:05.804
I think all of our energy had to be given to her.

00:40:05.804 --> 00:40:08.932
Like you said there was no.

00:40:08.932 --> 00:40:15.135
It was weird to explain there was no energy for anything else.

00:40:22.105 --> 00:40:29.655
Like so much so we left the tv on the same channel for hours and it was like not, it wasn't even like cartoons, like either one of us even wanted to watch it I didn't, it was just noise in the background that you know.

00:40:29.655 --> 00:40:38.739
We're just like you're just staring at these four walls, that, and your and your daughter in in this crib, and you're just like I.

00:40:39.706 --> 00:41:06.295
I don't even know what the right thing to do what the right thing to say is, at this point like, neither one of like, neither one of us spent much time talking to one another, like we just didn't know I think my mom was with us too, and I think the three of us really were just processing on our own and, um, you know, other than like me and my mom walking downstairs to get food for us or something like there was not, I don't even know how to put it like to your point like we just weren't talking.

00:41:06.295 --> 00:41:09.813
We weren't, we were all just processing and and trying to figure it out.

00:41:09.813 --> 00:41:17.273
Occasionally, one of us, you could tell we'd all been thinking about things for hours, cause, you know, a couple of hours would pass by and then one person would open their mouth about something.

00:41:17.273 --> 00:41:20.538
You know what I mean and then that would, but it was, it was.

00:41:20.778 --> 00:41:26.820
It was tough, I mean, when time came to um bring my mom home and do the chores for the night.

00:41:26.900 --> 00:41:39.235
Like it was so incredibly difficult to leave the hospital you know, and um, like you kept telling me like nothing's gonna happen tonight, you can stay home, and I was like you're absolutely out of your mind if you think I'm not gonna be back here.

00:41:39.235 --> 00:41:45.197
Like, yeah, you know, as soon as you begin to pull away, it just like it just starts to eat you apart.

00:41:45.197 --> 00:41:49.931
And, um, I did everything I could to remain positive and we're going to talk about that.

00:41:49.931 --> 00:41:52.346
That that's really all that you could really do.

00:41:52.346 --> 00:42:01.972
And to continue your point on not having the energy for anything, like I came home and I said we could be here for a few days.

00:42:02.626 --> 00:42:22.367
We could be here until Tuesday, whatever you know, so, um, I packed my computer for work, my notebook, my, my calendar, uh, some some journals, a Bible, like everything, to keep myself busy and to keep myself focused and, uh, none of those things made it out of my bag.

00:42:22.367 --> 00:42:32.614
I was so emotionally and physically drained in that hospital that it's mind-numbing, Like you don't move, you just sit there and you don't move and the next thing you know you're just staring at a clock.

00:42:32.614 --> 00:42:34.793
It's weird.

00:42:34.793 --> 00:42:40.838
Unfortunately, when I was driving back, that's when they came in and started trying to do blood draws and stuff.

00:42:40.925 --> 00:42:42.550
And I know that wasn't good.

00:42:42.550 --> 00:42:42.610
No.

00:42:43.905 --> 00:42:49.425
They had to do a standard blood panel.

00:42:49.425 --> 00:42:57.438
They were checking metabolic panels and a full CBC, so a complete blood count, rightfully so.

00:42:57.438 --> 00:43:02.168
They had checked glucose, so we're checking her sugars.

00:43:02.168 --> 00:43:24.170
So they had to do a couple of heel sticks and if you've never seen a heel stick happen before, they basically take a needle and prick your heel but unfortunately, like your veins, when you prick the heel you have to continuously squeeze the heel to get drops of blood to come out.

00:43:24.170 --> 00:43:28.398
That's not an easy process for a baby.

00:43:28.398 --> 00:43:37.914
It's not like they could put, you know, a tourniquet on and get blood to, you know run to that area on an ankle and a heel stick.

00:43:37.914 --> 00:43:38.675
That's not what they did.

00:43:38.675 --> 00:43:46.637
So in my mind I'm looking at this like I'm not sure why we're doing this.

00:43:46.637 --> 00:43:51.713
This seems a little bit wrong to me.

00:43:51.713 --> 00:44:00.851
I could understand when they were doing it when she was born and they only needed a little bit, but they needed For a glucose test, not for an actual blood draw.

00:44:00.891 --> 00:44:01.974
Correct, correct.

00:44:01.974 --> 00:44:07.175
They needed two tubes of blood and they were squeezing her heel.

00:44:07.175 --> 00:44:08.298
And squeezing her heel.

00:44:08.298 --> 00:44:21.755
She was screaming at the top of her lungs and it was this scream that I have never heard in my life and I'll tell you right now, I never want to hear it again in my life, I don't.

00:44:21.755 --> 00:44:46.219
This little girl was hurting and all I could do was just hold her and tell her that I'm there, it's okay and I can hear it, and it just hurts me because there was nothing that I could do except for watch them continuously squeeze her heel to get this blood.

00:44:46.219 --> 00:45:00.240
And so the nurse the night nurse had come in and, as she was talking to me, kind of doing, doing her rounds, getting, um, you know, the getting to know us.

00:45:00.240 --> 00:45:05.356
Um, really, she didn't just want to be the nurse, she wanted to know who we were and why we were there.

00:45:05.505 --> 00:45:19.074
And yeah, lindsey was really nice she was super nice I came in during the conversation yeah, portion of it and then she unfortunately got a phone call that both of the blood draws failed because they they clotted which of course they did.

00:45:20.467 --> 00:45:26.831
You're squeezing the ankle and you're getting blood out and you're putting it into a tube and you're tapping it, which is allowing air to get to it.

00:45:26.831 --> 00:45:29.807
So of course that blood is doing what it's supposed to be doing.

00:45:29.807 --> 00:45:40.990
Unlike a standard stick, there's a tube that runs to the collection tube and there's nowhere for air to get in there, so it's not going to, it's not going to clot.

00:45:40.990 --> 00:45:43.653
So why this wasn't the first option?

00:45:43.653 --> 00:45:45.672
I will never know.

00:45:45.672 --> 00:45:51.235
I will never, ever allow them to do a heel stick again.

00:45:51.235 --> 00:45:55.445
Ever knowing, I'll just never let it happen again.

00:45:55.465 --> 00:45:56.831
They had to do it a third time.

00:45:57.565 --> 00:46:04.632
Lindsay was super nice and she was like let me try, let me try to see if I can do it and get it not to happen.

00:46:04.632 --> 00:46:13.568
Let's warm her heel for 10 extra minutes, because if you do warm up the heel you might be able to get it quicker and it's not going to clot.

00:46:13.568 --> 00:46:18.913
And unfortunately that third time didn't work either.

00:46:18.913 --> 00:46:29.579
So Lindsay said you know, we can give her a break or we can do a standard blood draw.

00:46:29.579 --> 00:46:35.413
And I said let's just do it, let's just get it done and over with.

00:46:35.413 --> 00:46:45.172
She unfortunately has had this done three times, but let's just get this done because I don't want her to have to go through this again.

00:46:45.172 --> 00:46:45.753
I I don't want to prolong it.

00:46:45.753 --> 00:46:48.362
Uh, my thought process is let's just get it done and over with um.

00:46:48.362 --> 00:46:58.394
She's already dealt with blood work three other times, unfortunately, um, but I don't want her to have to do it tomorrow too yeah I would rather just get it done and over with.

00:46:58.626 --> 00:47:13.568
So I give Paisley a bottle, they call down to the lab and of course Miss Thang falls asleep in my arms and they walked in and Lindsay was like if she's sleeping, we'll do this tomorrow.

00:47:13.568 --> 00:47:17.130
And I was like no, ma'am, let's just get it done and over with.

00:47:17.130 --> 00:47:22.393
So I laid her on the bed and the nurse.

00:47:22.393 --> 00:47:23.615
I feel bad.

00:47:23.615 --> 00:47:24.336
I feel bad.

00:47:24.336 --> 00:47:28.617
The nurse came in and she was like all right, so we're going to do a heel stick.

00:47:28.617 --> 00:47:30.525
Lindsay and I both looked at her and bit her head off.

00:47:30.525 --> 00:47:31.487
I was like absolutely not.

00:47:31.487 --> 00:47:32.728
Nope, not happening.

00:47:32.728 --> 00:47:33.650
We've done it three times.

00:47:33.650 --> 00:47:37.175
It failed, we're not doing it, we're not doing it.

00:47:37.516 --> 00:47:44.253
So they tried to find a vein in her arm and unfortunately could not.

00:47:44.253 --> 00:47:48.329
But they did find one in the top of her hand and it was quick, it was.

00:47:48.329 --> 00:47:49.994
You know, they got what they needed.

00:47:49.994 --> 00:47:52.407
She actually got a little bit of extra just in case.

00:47:52.407 --> 00:47:57.614
So, yeah, and that blood work came back.

00:47:57.614 --> 00:47:58.936
It came back.

00:47:58.936 --> 00:48:02.967
Good, it was not, it did not clot or anything like that.

00:48:02.967 --> 00:48:04.650
So that was done and over with.

00:48:04.650 --> 00:48:08.748
Unfortunately, the poor girl had to go through three heel pricks.

00:48:09.750 --> 00:48:26.757
So Saturday um that night, we spent the night in the hospital we stepped in a reclining chair and I had the little kid's bed in the window and um tried to get sleep and prepare for the the next morning.

00:48:26.757 --> 00:48:33.331
Um you know, sleeping in a hospital is never fun, um you?

00:48:33.371 --> 00:48:35.673
know, and I think I woke up every 30 minutes.

00:48:36.235 --> 00:48:39.820
The thought of the inevitable is like the most difficult thing.

00:48:39.820 --> 00:48:52.608
And before we get to the testing, I just this entire time kept holding on to the fact that, like this is not possible, this is not possible.

00:48:52.608 --> 00:49:09.019
And when we started you roll the clocks back to us having our first conversations on Friday I had said that you know, for me, one of the reasons why it took me so long in life to decide to have children was the fear of this.

00:49:09.019 --> 00:49:29.206
Feared about having kids is having to deal with the heartache and the heartbreak and and and dealing with um, you know, trying to um be there for your child and help through like these things that are out of your control, right, like disabilities and things that you just can't control.

00:49:29.206 --> 00:50:01.164
And that's one of the things that scared me the most about having children and um, for me, when we found out that we were going to be parents right after my father passed, when we, literally you were pregnant, when we were giving, like the eulogy, all of those things signified to me that my dad is a part of this and that he had a hand in picking who our little daughter was going to be.

00:50:01.164 --> 00:50:05.335
And I remember, if you go back to all these you know conversations.

00:50:05.335 --> 00:50:16.117
Before I was bound and determined that it was a little boy, cause my dad always wanted to have a grandson and I thought, that's, you know, he was going to send me, um, the boy that I, that I wanted.

00:50:16.117 --> 00:50:30.413
And ultimately my dad sent me the little girl that I needed and um, you know you can hear me have those conversations on previous episodes but, uh, he absolutely did right and sent me what um we needed.

00:50:30.413 --> 00:50:44.521
And this whole time I've led into a positive mindset and the faith that Paisley Rain arrived here when she did, because she needed to save this family.

00:50:44.521 --> 00:50:53.639
My father and the good Lord knew that the three of us wouldn't pull through over his loss without a miracle.

00:50:53.639 --> 00:51:01.925
And she was our miracle, a miracle, and she was our miracle.

00:51:01.925 --> 00:51:19.378
And I was steadfast and confident in the fact that nothing could be wrong with our miracles, because the last thing that would happen would be to save us, to send us our miracle, followed by great heartache and that's all I kept clinging to the whole time.

00:51:19.639 --> 00:51:34.213
And, um, I tried to do my best to not focus on what could be um, because when I found myself doing that, you'd kind of very quickly wind up in a dark hole, you know.

00:51:34.213 --> 00:51:42.018
And um, like, my mom was asking me on the ride home on Saturday when I was dropping her off, like are you okay, whatever?

00:51:42.018 --> 00:51:44.871
And I just kept telling her I'm not, I'm not thinking about it, like I'm not trying to think about it.

00:51:44.871 --> 00:51:50.867
And, um, I told her exactly what I just told you and she said, well, what if it goes the other way?

00:51:50.867 --> 00:51:57.152
And I was like I honestly I don't, I can't process that.

00:51:57.152 --> 00:52:04.036
I said, but I'm probably going to ride my train straight to hell, because if this comes off the tracks for me, I don't know if I can hold on.

00:52:04.036 --> 00:52:10.702
I don't know where I'm going to go or what I'm going to do or how I'm going to respond if this doesn't come true.

00:52:10.702 --> 00:52:12.407
You know what I mean.

00:52:12.407 --> 00:52:15.876
I couldn't even think about what would happen.

00:52:15.876 --> 00:52:20.128
So I couldn't, you know what I mean.

00:52:20.128 --> 00:52:20.710
I just wouldn't do it.

00:52:20.731 --> 00:52:23.659
But I, I just hung to my faith that this was going to be okay.

00:52:23.659 --> 00:52:28.096
This was going to be okay and that you know, there's going to be a reason for what we're doing.

00:52:28.096 --> 00:52:33.117
Um, it's going to show us the true priorities in our life.

00:52:33.117 --> 00:52:53.833
It's going to make all of us slow down and focus on what's important and realize that all the things that are going around in our lives, that are spinning around in our worlds, that are bringing us down, that are causing us stress, that are causing us anxiety, that you know is robbing us from sleep, we're going to realize after this experience that none of that shit matters.

00:52:53.833 --> 00:52:57.320
If you have each other and you have your health, that's it.

00:52:57.320 --> 00:53:00.186
That shit matters.

00:53:00.186 --> 00:53:01.630
If you have each other and you have your health, that's it.

00:53:01.690 --> 00:53:03.135
And I just kept telling myself and praying and saying I get it.

00:53:03.135 --> 00:53:04.159
I understand the lesson.

00:53:04.159 --> 00:53:07.250
You're putting me here for a reason, like I understand the lesson.

00:53:07.250 --> 00:53:10.518
Please don't use my child to teach a lesson anymore.

00:53:10.518 --> 00:53:11.425
I get it.

00:53:11.425 --> 00:53:12.710
She's what's important.

00:53:12.710 --> 00:53:13.972
This is all that's important.

00:53:13.972 --> 00:53:17.831
All the things that I can't fix, I can't afford, I can't remedy, it doesn't matter to me.

00:53:17.831 --> 00:53:18.394
This is all that's important.

00:53:18.394 --> 00:53:19.164
All the things that I can't fix, I can't afford, I can't remedy, it doesn't matter to me.

00:53:19.164 --> 00:53:20.431
This is all that's important to me.

00:53:20.431 --> 00:53:35.253
And when you spend a few days in those four walls focusing on your child and realizing this is all that ever-loving matters in this world, when you're in there and you're talking to yourself and telling yourself I'll give up everything else.

00:53:35.253 --> 00:53:37.478
I have to make sure she's okay.

00:53:37.478 --> 00:53:39.311
That's all that's important to me.

00:53:39.311 --> 00:53:44.255
It really puts your life in a whole different perspective.

00:53:44.496 --> 00:53:48.931
You know, yeah for sure.

00:53:48.931 --> 00:53:51.664
That's definitely all the things that I've been thinking about.

00:53:51.664 --> 00:54:01.036
It was just, I need to focus on her, and I think it was Saturday night.

00:54:01.036 --> 00:54:18.530
You ended up going home and that was hard for me because you guys you and your mom were there from when we got there on Saturday morning until you left.

00:54:18.731 --> 00:54:28.855
And as soon as you guys left, I just held her and cried because I was like, why us, why now?

00:54:28.855 --> 00:54:46.333
Um, and I just prayed and she just, paisley, just sat there, happy as can be, just playing and smiling at me and talking, and I did the same thing.

00:54:46.333 --> 00:55:03.510
I said whatever it takes, whatever it means to make sure that my little girl is healthy and happy, I don't care, I'll give it all up, but please just watch over her.

00:55:03.510 --> 00:55:11.317
I prayed to my mom, I prayed to your dad and I said, please, whoever, everyone, just watch over my little girl, just make sure that she's okay.

00:55:11.317 --> 00:55:29.958
Just having her there, just so happy, helped me during those times of just watching the clock and counting down the hours, until I knew that they were going to come in and put her machine on.

00:55:32.349 --> 00:55:38.318
It was just the ironic thing is that she was the strongest one in the room.

00:55:38.318 --> 00:55:39.099
You know what I mean.

00:55:39.099 --> 00:55:41.889
And, uh, she was just so happy all the time.

00:55:42.150 --> 00:55:46.393
And um, it puts a different, a different perspective on things.

00:55:46.393 --> 00:56:09.411
When she's the one going through it and she's just smiling through it and, um, you know, she clearly screamed her way through it too Like when, when they came in on Sunday morning and started gluing all those things to her head and, uh, you know she's losing it and when she will literally just lock eyes with you and just look through your soul, like, like, why are you letting them do this to me?

00:56:09.692 --> 00:56:23.853
it's hurt like that, um, that's is, uh, it's hard to process Because you know, like I, like she knows, hey, my dad has the ability to take me out of here.

00:56:23.853 --> 00:56:26.396
You can remove me from the situation while you're still leaving me here.

00:56:26.396 --> 00:56:28.836
You know you can't explain to an infant.

00:56:28.836 --> 00:56:30.918
You know that, hey, man, we have to do this.

00:56:31.699 --> 00:56:34.922
I can't tell you how many times I just held her and said I'm sorry.

00:56:35.121 --> 00:56:35.681
I'm sorry.

00:56:38.184 --> 00:56:38.726
I love you and I'm sorry.

00:56:38.766 --> 00:56:54.873
I'm sorry, I love you and I'm sorry Seeing her with all the wires glued to her head, with the fishnet on and the tape all around her head and just the train of wires to the back of her head and the wires come off her feet and everything.

00:56:57.025 --> 00:57:01.222
You could watch her heartbeat and pulse on the screen, and it was just too much.

00:57:01.985 --> 00:57:07.637
There's a computer screen with all these different wavelengths on it.

00:57:07.637 --> 00:57:11.925
They're measuring all different areas of her brain and her body movements.

00:57:11.925 --> 00:57:15.856
They're looking at oxygen and heart rate and everything at the same time.

00:57:15.856 --> 00:57:34.733
So there's all these monitors, there's a camera that films all of us at all times and as the test is rolling on on Sunday, we're looking at things and they have a button that every time she would drop her head, you hit the button to kind of log the event.

00:57:34.733 --> 00:57:40.958
And she had so many instances where she dropped her head.

00:57:40.958 --> 00:57:55.726
She's changed from dropping it repeatedly, like five or six times in a row, to dropping it once or twice, but doing it a lot more often, which ultimately us staying home on Friday was helpful because she wasn't even the testing.

00:57:55.726 --> 00:57:57.094
Waiting until Sunday was helpful because it just ramped up testing.

00:57:57.094 --> 00:58:01.309
Waiting until sunday was helpful because um she, it just ramped up the

00:58:01.349 --> 00:58:11.528
activity ramped up on sunday yeah, because saturday we didn't see it much right, when you're watching this computer screen and you're seeing every time she does something, how does it react?

00:58:11.528 --> 00:58:17.230
When you're seeing it log things on its own and you're trying to like observe what's going on next.

00:58:17.230 --> 00:58:25.824
You know, like we talk about dr google I'm on google looking at eeg maps for healthy brains in a six-month-old versus.

00:58:25.824 --> 00:58:37.389
You know seizures and epilepsy and all these things and you're trying to compare wavelengths and you're going back and forth and you're trying to get a freaking a google degree on what's happening, because you need some damn answers.

00:58:37.389 --> 00:58:42.719
You know, and we're like well, if we, if we push the button, this is how it logs it.

00:58:42.719 --> 00:58:45.554
And then we're like okay, we've logged 20 events here.

00:58:45.554 --> 00:58:48.565
What happens if she drops her head and we don't hit the button?

00:58:48.565 --> 00:58:49.527
Does this record it?

00:58:49.527 --> 00:58:50.208
What's going on?

00:58:50.208 --> 00:58:55.918
We're analyzing every single thing and, um, it was.

00:58:55.918 --> 00:58:58.353
It was crazy because she just played through all of it.

00:58:58.505 --> 00:58:59.670
Like she was just herself.

00:58:59.670 --> 00:59:08.896
She didn't change herself so much so that, um, like everybody, all the nurses, every nurse came in to see her.

00:59:09.036 --> 00:59:14.769
Yeah, even if she wasn't there, her their patient, like we heard multiple times.

00:59:14.769 --> 00:59:16.657
I heard the cutest baby is in here.

00:59:16.657 --> 00:59:19.230
Like and they all just came in to to see her.

00:59:19.289 --> 00:59:23.179
She would wave to them and um, smile and and um.

00:59:23.521 --> 00:59:33.213
I don't know about you, but before we started monitoring um you, but before we started monitoring um, we actually had dr heist.

00:59:33.213 --> 00:59:33.534
He did rounds.

00:59:33.534 --> 00:59:36.940
We didn't touch on that um when the machine had gotten put on her.

00:59:36.940 --> 00:59:38.302
Yeah, um and uh.

00:59:38.322 --> 00:59:51.380
I honestly, after that conversation, had a glimpse of hope that that maybe this wasn't yeah the seizures, like, yeah, I had a glimpse of hope and I held on that the entire time.

00:59:51.380 --> 00:59:56.822
I said this is it, this is this, and and you hate to do that because you want to be prepared for the worst.

00:59:57.510 --> 00:59:59.496
Yeah, it's tough when you hang onto the glimmer of hope.

00:59:59.496 --> 01:00:08.146
I did that the whole time my dad was sick, you know, every day I found a new layer of hope that I could lean into and and that just kind of ramped up the disappointment.

01:00:08.146 --> 01:00:16.286
But we needed, we needed a dose of hopium and yeah, um, the um, the the test had just begun.

01:00:16.286 --> 01:00:21.960
Yep, no events had happened she was sleeping taking a little nap and he came in to do an evaluation.

01:00:21.960 --> 01:00:24.338
He was looking at the results and he said this is encouraging.

01:00:24.358 --> 01:00:37.780
I'm actually yeah really encouraged of what I'm seeing already he says I like this, I like this a lot yeah and that's when he mentioned something else to us yeah um, and you're the medical person in the room, so you can he um said that it's um.

01:00:37.820 --> 01:00:44.940
There's a possibility of benign myoclonus um epilep uh it's over here.

01:00:44.940 --> 01:01:00.701
I can't read it I know it's benign myoclonus of infants, I think is what it's called Yep Benign Myoclonus of Infancy.

01:01:00.701 --> 01:01:03.336
So he dropped that on us.

01:01:03.336 --> 01:01:06.820
I'm going to tell you right now, I didn't remember what he said.

01:01:06.820 --> 01:01:20.545
I actually asked the night nurse or we had conversations later on in the day about what he had said, because all I heard, like Charlie Brown, it may not be.

01:01:20.545 --> 01:01:22.637
It may be that I don't know what he said.

01:01:22.637 --> 01:01:24.255
I did not that name.

01:01:24.949 --> 01:01:43.652
All we knew was what he said was if it is that case, then she'll outgrow it yeah and um so I grasped onto that as a doctor, you don't usually, in the middle of a test, throw something that you know your patients and patients family is going to cling on to, unless you think there's a possibility of it.

01:01:43.652 --> 01:01:46.717
So there was something he saw in the results early now.

01:01:46.717 --> 01:01:50.003
This is a sunday, he's you know he's on call Until 6 o'clock.

01:01:50.003 --> 01:01:51.355
He's leaving for the day.

01:01:52.931 --> 01:01:54.657
We're not going to see him when the test is done.

01:01:55.570 --> 01:02:00.481
He even said at that time the discouraging part was this is a 24-hour test.

01:02:00.481 --> 01:02:04.981
I'm not taking it off until tomorrow morning, and that's only if we get a bunch of events.

01:02:04.981 --> 01:02:14.534
If those events don't happen, then I'm going to keep you on this until at least tuesday we're going to do at least 48 hours, and he also said I won't be here to read your tests on monday or tuesday.

01:02:14.534 --> 01:02:17.847
Another dr, will um, who was a professional.

01:02:17.847 --> 01:02:22.157
That obviously she actually ran a clinic in chicago and stuff.

01:02:22.157 --> 01:02:23.960
So we knew we were in good hands.

01:02:24.081 --> 01:02:29.641
But you know, we were hopeful that this wouldn't have to be an all-day, 24-hour, 48-hour scenario.

01:02:29.641 --> 01:02:47.000
So, like you said, we kind of cling to that hope and, you know, throughout the day we're just talking ourselves in and out of so many scenarios, but trying to remain as positive as possible and explaining to everybody that this only happens when she's tired.

01:02:47.000 --> 01:02:49.994
It doesn't happen when she's laying down.

01:02:49.994 --> 01:02:55.161
A seizure could happen at any time yeah, you can't plan if her head starts dropping and you lay her down.

01:02:55.161 --> 01:02:55.603
It's over.

01:02:55.603 --> 01:02:56.608
It doesn't happen anymore.

01:02:56.768 --> 01:03:04.804
We don't see her tensing up um throwing her hands, doing all the things that a seizure patient would would do.

01:03:05.411 --> 01:03:18.436
It's to the point of us, like I'm literally been reading, like pupil dilation and infants, you know, and I'm like going through every single thing I possibly can, like what do I need to be looking for?

01:03:18.436 --> 01:03:30.251
You know, trying to get any kind of clue, um, which probably wasn't the best thing, but I wanted to at least be prepared enough that, if it didn't go our way, then I was more prepared to ask questions.

01:03:30.351 --> 01:03:42.403
Right, you know what I'm saying yeah, and it was getting to the point where we like continuously kept telling like dr heist, uh, he had seen her do it, which was, which was perfect.

01:03:42.403 --> 01:03:44.735
He had seen her before we had gotten brought upstairs.

01:03:44.735 --> 01:03:50.653
Um, on saturday she was sitting there because she was overtired, because again doesn't want to be left out.

01:03:50.653 --> 01:03:55.391
Um, after being evaluated in the er, she we're like she's gonna do it.

01:03:55.391 --> 01:03:59.440
Like we could pinpoint it, like we're like give me five here.

01:03:59.701 --> 01:04:00.362
This is gonna happen.

01:04:00.402 --> 01:04:06.713
Give me five more minutes, I'm gonna sit her up and she's gonna do it because she's overtired and you don't want her to do it right, but we can.

01:04:07.032 --> 01:04:07.893
we can make her do it.

01:04:07.893 --> 01:04:08.735
We knew that well.

01:04:08.735 --> 01:04:11.099
I could tell you within 10 minutes whether she was going to do it.

01:04:11.099 --> 01:04:11.920
She's going to do it, yeah.

01:04:11.920 --> 01:04:13.443
Yeah, which is not a seizure.

01:04:13.443 --> 01:04:14.824
You can't plan, you still can yeah.

01:04:15.190 --> 01:04:19.135
You can't plan when she's going to have, like when someone's going to have a seizure.

01:04:24.157 --> 01:04:25.559
So I think she needs to be evaluated.

01:04:25.619 --> 01:04:29.204
Yeah, he said yeah, this is definitely what I'm, you know.

01:04:29.204 --> 01:04:34.358
I think this is infantile spasms and I want to have her have the test.

01:04:34.358 --> 01:04:45.842
So we're like not even halfway through the test and she's like down for the count, Like she's like taking a nap.

01:04:45.842 --> 01:04:48.769
I'm sitting in the recliner chair and she's like watching.

01:04:48.869 --> 01:04:52.641
She'd nap with you for like two hours, right it was two and a half hours.

01:04:53.211 --> 01:04:55.382
She was like we were hitting like an hour nap.

01:04:55.382 --> 01:04:56.045
That was normal.

01:04:56.045 --> 01:04:58.858
And I was like you know what, whatever, we're not doing anything.

01:04:58.858 --> 01:05:03.793
I literally sat there and watched, like well, that was five minutes, because the clock is right next to the tv.

01:05:03.793 --> 01:05:06.717
I'm like trying to keep myself occupied on, I don't even know.

01:05:06.717 --> 01:05:12.063
I think it's like chicago zoo or something, and I'm like, okay, well, this is cool and I'll look, glance over.

01:05:12.063 --> 01:05:13.405
And I was like, well, that was 10 minutes.

01:05:13.405 --> 01:05:25.954
Look back at the clock and I'm like, god, almighty, like I want to throw a towel over that thing and just not even watch, because I'm like I know we're here for 24 hours and we're like it's two in the afternoon, like it's.

01:05:25.954 --> 01:05:30.284
This is just not going very well.

01:05:30.284 --> 01:05:44.893
And I tell you what I had been watching the clock and watching the clock and sure as shit I look up at that goddamn TV and there, mind you, we're watching a zoo show.

01:05:44.893 --> 01:05:47.079
Okay, chicago Zoo.

01:05:47.079 --> 01:05:48.001
And what comes up?

01:05:48.001 --> 01:05:49.293
What are they talking about next?

01:05:49.293 --> 01:05:51.690
A fucking bald eagle.

01:05:51.690 --> 01:05:54.175
Yep, I'm done.

01:05:54.175 --> 01:05:55.077
I'm done.

01:05:55.318 --> 01:05:56.360
I just start crying.

01:05:56.360 --> 01:06:00.532
I'm holding Paisley, looking at her with all these cords and cables.

01:06:00.532 --> 01:06:01.695
I'm like crying.

01:06:01.695 --> 01:06:03.679
I'm like thanking Pops.

01:06:03.679 --> 01:06:06.954
I'm like that's it, that's what I needed, we're going to be okay.

01:06:06.954 --> 01:06:15.112
That's what he would always say Everything's going to be okay, we're going to be fine.

01:06:15.112 --> 01:06:15.851
And I just let her sleep.

01:06:15.851 --> 01:06:17.213
I said you know what, screw it.

01:06:17.213 --> 01:06:21.295
They want her to sleep, they want to see her sleeping, they want to see her active.

01:06:21.295 --> 01:06:22.755
And we've done all the things.

01:06:22.755 --> 01:06:28.639
We've been playing, we've been chilling, we've been eating, we've done all the things.

01:06:28.639 --> 01:06:30.860
I'm like we've logged it 20 times.

01:06:30.860 --> 01:06:34.282
I'm like we're going to have all the data and then some.

01:06:34.282 --> 01:06:40.965
There's not going to be any chance that we're going to have to redo this test or not have the information that they need.

01:06:40.965 --> 01:06:46.807
And I was like fine, screw it, you want to sleep for two and a half hours because we're in the hospital and what else can we do?

01:06:46.807 --> 01:06:52.516
Fine, I'll tell you what I wanted to take a nap, so bad during that time.

01:06:52.516 --> 01:06:53.974
But I know that I'm on camera.

01:06:54.355 --> 01:06:54.536
Yeah.

01:06:54.836 --> 01:07:04.835
And they made a point to let me know that if they caught us on like not doing safe sleeping, if we were sleeping with her in our arms and stuff, they would write us up.

01:07:04.835 --> 01:07:08.159
Yeah, and after would write us up and after two they have to report it because they're mandated reporters.

01:07:08.159 --> 01:07:14.842
I had not slept friday into saturday at all at all.

01:07:14.842 --> 01:07:16.945
30 minutes here, 30 minutes there.

01:07:16.945 --> 01:07:22.148
I was so exhausted I barely had eaten anything and I was like I want to close my eyes.

01:07:22.148 --> 01:07:26.596
So bad, but I'm not getting I'm not getting written up it was.

01:07:26.856 --> 01:07:27.536
It was bad.

01:07:27.536 --> 01:07:31.043
So two and a half hours went by.

01:07:31.043 --> 01:07:31.965
She woke up.

01:07:31.965 --> 01:07:35.740
Another doctor came in who was on doing rounds, checked on her.

01:07:35.740 --> 01:07:37.635
They thought she was great.

01:07:37.635 --> 01:07:39.034
You know she looks good.

01:07:39.034 --> 01:07:44.072
They came in to do vital signs and sometimes they just came in just to say hi, they just wanted to see her.

01:07:44.112 --> 01:07:45.333
They repeatedly did that, yeah.

01:07:45.373 --> 01:07:45.693
Yeah.

01:07:46.954 --> 01:08:06.632
Right around this time we were kind of having conversations where, like I needed to come home or somebody needed to come home because we had stuff that needed to be taken care of, and then we needed supplies so we can, like, take showers and stuff, and we're going to be stuck there for at least one more night.

01:08:06.632 --> 01:08:08.994
So we're making all those plans, at least one more night.

01:08:08.994 --> 01:08:11.579
So we're making all those plans.

01:08:11.579 --> 01:08:21.300
And you had said, you know, if you don't need to go, then, like I need a break, like you had a break yesterday, I need to get myself out of here for a minute.

01:08:21.489 --> 01:08:30.237
So the tables turned and this time you took a break and you left and I stayed with Paisley and um.

01:08:32.661 --> 01:08:58.524
Before um, right before you left, I was on my phone scrolling around and um on Facebook, and I saw, uh, a friend of mine, somebody that's like a, an acquaintance, more so that I sold motorcycles to him and his family and he has a little boy that has been dealing with a lot of medical difficulties and challenges.

01:08:58.524 --> 01:09:21.963
And I saw his post pop up on my timeline and it was from the same place we were in and the post is basically him and his family preparing to say goodbye to their son, who's just over a year old at this point.

01:09:21.963 --> 01:09:23.456
No thank you.

01:09:24.069 --> 01:09:26.338
And it's the same hallways that I've walked.

01:09:26.338 --> 01:09:27.989
It's the same benches I've passed.

01:09:27.989 --> 01:09:29.057
It's the same hallways that I've walked.

01:09:29.078 --> 01:09:29.783
It's the same benches I've passed.

01:09:29.804 --> 01:09:35.282
It's the same doors right they could be one door, two doors, ten doors down from us, you know.

01:09:35.689 --> 01:09:40.418
You had actually seen him when we were there to visit your dad and I was there right before my dad passed.

01:09:41.131 --> 01:09:44.699
His little boy had just been born and I remember greeting him downstairs and talking to him.

01:09:45.100 --> 01:09:45.841
Yeah, right in the lobby.

01:09:46.430 --> 01:09:57.435
And to think about all that, and then even for me to be back in this hospital, walking these halls with my mother after all the time we spent there with my father, that was weighing on me heavily.

01:09:57.435 --> 01:10:10.661
And just reliving all of those experiences with him and all those memories, and trying to separate those things.

01:10:11.390 --> 01:10:14.420
And like the process, all that was just really weighing on me.

01:10:14.420 --> 01:10:30.228
But when I'm sitting there and I'm seeing these messages, literally I just turn my phone on and that's what's looking me in the face is a friend dealing with something to the one millionth degree of what we're dealing with, something to the one millionth degree of what we're dealing with.

01:10:30.228 --> 01:11:30.100
And I just looked at that and I prayed for him and for his family and uh, immediately begin to just thank thank God for for us and our situation and to pray that we're going to, everything's going to gonna be okay, but to be thankful for what we have and where we are, you know, and, um, you almost feel guilty for for having those thoughts of like, why me, when you know somebody else is going through something so much greater than what you are, you know, but, um, you, you, you had to come home and, um, I did what you did when I, when, when I left, and I just, you know, bundled her up and and sat there with her and uh, talk to her and apologize and prayed until she slept, and then we just just sat there the whole time we were gone.

01:11:30.100 --> 01:11:39.918
You know, and I think you can talk about how difficult it is when you realize how difficult it is to actually pull away from the hospital.

01:11:39.918 --> 01:11:40.541
You know what I mean.

01:11:42.710 --> 01:12:01.434
So you came home to run errands and we just sat there and she slept for another hour and a half or so and, uh, then she, we had some nurses come in and check on her and start doing some vitals and I kind of woke her up.

01:12:01.434 --> 01:12:14.356
So I set up like a little play area for her and, uh, we were playing and then I think three or four nurses came in because they were like we just heard this beautiful baby on the planet is in here hanging out, so we wanted to come in.

01:12:14.356 --> 01:12:22.828
I began to get suspicious whether they were coming in and saying wow, there's the cutest baby with the honkiest of a dad by himself in there.

01:12:22.828 --> 01:12:23.149
You know what?

01:12:23.168 --> 01:12:24.413
I mean, don't let me catch a charge.

01:12:24.895 --> 01:12:28.617
Wow, you know, I'm sure dad had something to do with it.

01:12:28.617 --> 01:12:34.612
A charge, wow, you know sure dad had something to do with it.

01:12:34.612 --> 01:12:40.123
But uh, his nurse just kept coming in to check on her and, um, you know, we're getting prepared for another night in the hospital.

01:12:40.123 --> 01:12:47.537
Then you're gonna pick up chipotle and you've got your home doing chores and packing clothes.

01:12:47.658 --> 01:12:49.220
Yeah, but before we even got there.

01:12:49.260 --> 01:12:59.957
That was like walking out to the parking garage was like very hard, like it was like heartbreaking, like I was like I shouldn't be leaving.

01:12:59.957 --> 01:13:03.449
How do I leave my baby uncertain?

01:13:03.449 --> 01:13:08.399
Because the only time that I've actually left her is gone to work, and I knew that she was fine.

01:13:08.399 --> 01:13:13.516
I knew that she was fine, I knew that she was healthy, happy with you guys, she's fine.

01:13:13.516 --> 01:13:19.570
So for me to walk away from her with the uncertainty, I was crushed.

01:13:19.570 --> 01:13:47.981
I got in my car, turned my car on and we have a camera that faces her car seat and it was empty and I just cried, like that just empty feeling in your, in your heart, like that feeling of, like a ball in your throat just overcame me and I just sat there in the parking garage for at least 10 minutes before I could know clear my eyes enough to actually see where I was going.

01:13:49.645 --> 01:14:16.442
Um, so yeah, then I, you know, got the courage to to drive home and when I got home, I raced around as quickly as I could to to get gas and pack up the um, all the stuff that we needed and do the barn chores, take care of the animals and do all those things, um, to get out of here and get back to you as quickly as I can, yeah, um, and so you know I do all those things.

01:14:16.442 --> 01:14:24.637
And I was like, all right, you know how's everything going there, like I'm checking in with you and you're like, well, she's still sleeping, we're good, we're, we're okay, like she's doing great.

01:14:24.637 --> 01:14:32.298
Um, I'm like panicking, like I'm like, oh, my god, she's probably gonna have a big like a big situation happen, like while I'm not there and I'm not there to like help.

01:14:32.298 --> 01:14:34.115
And so I'm like freaking out.

01:14:34.115 --> 01:14:37.695
And so I was like, well, I'm on my way back, I'm just finishing up the chores.

01:14:37.695 --> 01:14:52.612
I'm running upstairs Like damn pig is choking again, but I don't really care, like I'm what's going on.

01:14:52.671 --> 01:14:53.654
I'm there and she helps me do some things.

01:14:53.654 --> 01:14:56.545
And then I hit the road and I'm, you know, at the, at the gas station.

01:14:56.545 --> 01:15:02.829
I'm like watching the gas, like I'm like let's go, like I need to get out of here, like you're taking all day.

01:15:02.829 --> 01:15:15.865
So I I did get my gas and I get my car and I'm like trying to like queue up the directions to make sure that I like get there, because my mind is just mush at this point.

01:15:16.110 --> 01:15:16.652
So that point.

01:15:16.652 --> 01:15:26.842
I've driven to that hospital hundreds of times and when I was returning on Saturday night I missed a turn and ended up in the ghetto.

01:15:27.042 --> 01:15:27.243
Yeah.

01:15:29.015 --> 01:15:31.706
And to your point, like your mind's just not in the right place, like I'm just like.

01:15:31.706 --> 01:15:32.668
So I totally understand what you're saying.

01:15:32.789 --> 01:15:36.400
Yeah, I'm like I don't even I know how to get there, but I don't know how to get there right now at this moment.

01:15:37.935 --> 01:15:48.623
So I'm doing that and all of a sudden my phone, like my dash, lights up and it's like someone's calling me and I'm like oh my God, oh my God, like I'm shaking trying to answer it because I can see that it's a Scarborough number.

01:15:48.623 --> 01:15:49.886
So I'm like, oh my God, what happened?

01:15:49.886 --> 01:15:53.877
Like you can't get to your phone, like I immediately anxiety straight down a rabbit hole.

01:15:53.877 --> 01:15:57.479
I'm like you can't get to your phone and something happened, an emergency, like what's going on?

01:15:57.479 --> 01:16:04.694
And I was like I answer it and I was like hello, like you.

01:16:04.715 --> 01:16:09.478
And he's like on the other line and he's like hi, is this Allie?

01:16:09.478 --> 01:16:13.942
And I was like yeah, and he's like this is Dr Heiss.

01:16:13.942 --> 01:16:16.743
And I was like why do you sound so happy?

01:16:16.743 --> 01:16:18.404
Like I'm not saying that, but I'm like what's going on?

01:16:18.404 --> 01:16:23.430
He was like I have great news and I was like don't lie to me, don't lie to me.

01:16:23.430 --> 01:16:31.335
I like literally said it twice and he was like nope, he's like I, I have some wonderful news and, uh, you can go home yeah and I said are you kidding me right now?

01:16:31.615 --> 01:16:32.918
and I just started crying.

01:16:32.918 --> 01:16:34.042
I was like you're lying.

01:16:34.042 --> 01:16:38.057
No, this is you're, you're serious, you're serious, we can go home.

01:16:38.057 --> 01:16:43.082
And he says, yep, um, I'm gonna send them up, I'm gonna send up my team right now and we're gonna unplug her.

01:16:43.082 --> 01:16:47.194
And, uh, it's not seizures, you're, she's gonna outgrow this.

01:16:47.295 --> 01:16:56.483
This is the, in fact, what he called it, the benign myoclonus of infancy, and there's no rhyme or reason as to why it happens.

01:16:56.483 --> 01:16:59.492
Babies are weird.

01:16:59.492 --> 01:17:00.474
They have it.

01:17:00.474 --> 01:17:02.118
It comes, it goes.

01:17:02.118 --> 01:17:04.743
It will get worse before it gets any better.

01:17:04.743 --> 01:17:09.942
He said but they're coming to your, coming to your room right now.

01:17:09.942 --> 01:17:10.730
Are you at the hospital?

01:17:10.730 --> 01:17:13.538
And I said I'm not, but my husband is, um, he's like I'll call him.

01:17:13.538 --> 01:17:15.032
And I was like no, no, let me call him.

01:17:15.032 --> 01:17:18.542
And he was like you're driving, I want you to get there safely, let me call him.

01:17:18.542 --> 01:17:23.712
And I was like no, I'll call him, like I was just so excited that I had to get you on the phone and tell you that we are going home.

01:17:23.712 --> 01:17:32.689
Like we still had eight hours to go on this at least, because it is probably seven o'clock now.

01:17:32.789 --> 01:17:33.854
We had another 12 hours.

01:17:33.854 --> 01:17:34.657
I think Something yeah.

01:17:35.570 --> 01:17:38.680
Like we still had time on the clock.

01:17:38.680 --> 01:17:48.393
I'm looking at the discharge paper right now and it said that we did 10 hours, 10.75 hours on that machine yeah, 10.75 hours on that machine.

01:17:48.393 --> 01:17:54.095
And he had enough information to rule out any sort of epilepsy across the board.

01:17:54.576 --> 01:18:00.938
Basically what we did with her the fact that you gave her a two and a half hour nap.

01:18:00.938 --> 01:18:02.498
I gave her an hour and a half nap.

01:18:02.498 --> 01:18:04.118
That mimicked a night's sleep.

01:18:04.118 --> 01:18:06.579
Yep, all the activities we'd logged.

01:18:06.579 --> 01:18:09.582
He was basically like you've given me 24 hours of data in 10 hours.

01:18:09.582 --> 01:18:10.462
Yep, all the activities we'd logged.

01:18:10.502 --> 01:18:13.823
He was basically like you've given me 24 hours of data in 10 hours, yep.

01:18:13.823 --> 01:18:18.425
When you called and I answered the phone, I just figured you wanted an update, you know.

01:18:18.425 --> 01:18:26.608
But I could hear in your voice like you were like crying when you were talking to me, so I didn't know what was going on.

01:18:30.050 --> 01:18:30.793
I remember I said we're going home.

01:18:30.814 --> 01:18:31.577
You kept saying going home, I I didn't.

01:18:31.577 --> 01:18:39.284
I didn't know if, but like the way you were crying at first, I didn't know if, like, like, we're going, she has seizures.

01:18:39.284 --> 01:18:41.730
We're going home like or or like yeah or she?

01:18:41.751 --> 01:19:02.506
doesn't you know like and uh I didn't know how to even like put the words out when it's only everything was okay, like I just I just I mean, I'm looking at her, you know, and she like looks right into my eyes and I just started bawling.

01:19:02.506 --> 01:19:08.757
I told her we're going home, you're okay, and I'm holding her.

01:19:08.757 --> 01:19:13.360
I told her we're going home, you're okay and I'm holding her.

01:19:13.360 --> 01:19:15.802
And minutes after getting off the phone with you, the door blew open and it was our night nurse.

01:19:15.802 --> 01:19:17.342
Did you hear the news You're getting out of here?

01:19:17.563 --> 01:19:17.743
Yep.

01:19:18.224 --> 01:19:44.829
And they moved so quick that before I would say 20 minutes to a half an hour before you made it to the hospital I had all of her stuff was disassembled, the doctors or whatever the nurses came in took everything off of her, cleaned her head, gave me the discharge paperwork and we packed up most of the room before you, you know 20 minutes or so before you could even make it there.

01:19:44.829 --> 01:19:46.978
That's how they were motivated to get us out of there.

01:19:46.978 --> 01:19:51.976
She did not like the stuff coming off all the glue and adhesive all over.

01:19:52.511 --> 01:19:59.715
It was so bad and she was having such a reaction to it that I basically stripped down to my skivvies and jumped in the shower with her so we could wash the stuff off of her.

01:19:59.715 --> 01:20:05.877
But they were so motivated to get us out of there, to get us home.

01:20:07.890 --> 01:20:12.016
They were sad to see her go because she was so happy and they loved her so much, but they were.

01:20:12.056 --> 01:20:30.081
We had the conversation, that the amount of stuff that they have to deal with, the heartache and heartbreak that they have to deal with to have um six month old, happy little girl yeah greeting them at all times, always smiling um, with a positive, showing them her new trick of waving high.

01:20:30.100 --> 01:20:33.297
Yeah but with a positive prognosis at the same time.

01:20:33.297 --> 01:21:02.481
Like I think they just wanted to be around her, it was positive energy, you know um, another thing that's kind of crazy about this whole scenario is, during the mix of all of this, like everything that's happened, is my little girl called me dad, mm-hmm.

01:21:06.747 --> 01:21:10.854
Yeah, first words dad.

01:21:10.854 --> 01:21:12.476
Yeah, first words dad.

01:21:12.476 --> 01:21:16.043
So much so that the eeg tech said did she just say dad?

01:21:16.043 --> 01:21:20.721
And I looked at you and I said yep, she sure did.

01:21:22.934 --> 01:21:31.359
She hasn't said mom or anything, nothing this has been, uh, I don't even know how to.

01:21:31.359 --> 01:21:36.521
I don't even know how to sum this up, man, I really don't like.

01:21:36.521 --> 01:21:40.519
Some of it seems like a dream, you know what I mean.

01:21:40.519 --> 01:22:00.297
Some of it seems like a nightmare, like, uh, the whirlwind of emotion that we went through, the fact it all started with my little girl playing and her head falling, to all of this, you know, to a few days later, the phone call like we're okay, we can go home.

01:22:00.297 --> 01:22:07.296
Like I don't even know how to really truly sum up what we just went through.

01:22:09.655 --> 01:22:09.957
I don't.

01:22:10.016 --> 01:22:22.780
Yeah, I don't have it either you go into a weekend with like your list of things right, like you have a couple days off and I look at weekends as time for me to work you know what?

01:22:22.780 --> 01:22:35.354
I mean so like we're all writing things up and think about what we're going to do, when we were so far away from anything we thought possible of doing yeah we could never have imagined our weekend going the way that it did.

01:22:35.655 --> 01:22:45.277
you know you never want to dream up the frightening experience that we had, but you are so thankful for the positive news that we received.

01:22:45.277 --> 01:22:51.145
It's wild, I don't know how to explain it.

01:22:51.145 --> 01:22:51.805
I really don't.

01:22:52.210 --> 01:23:02.243
All I can do is thank my lucky stars and everyone upstairs who's watching over us, and just continue to pray that they watch over us during this journey of life with her.

01:23:02.890 --> 01:23:42.320
I mean, we came out of this on the way home saying that if there's one thing that we need to do after this weekend is to lean so much more into our faith because that's the only thing that pulled us through to continue to train our brains to remain positive, but to lean into our faith because that's ultimately all we had, and there's a lot of lessons learned over the weekend on priorities and on, you know, spirituality and positivity, and I don't know.

01:23:42.320 --> 01:23:46.377
I don't know how long it's going to take for me to truly process what we went through, like we.

01:23:48.461 --> 01:24:07.060
I'm so, I'm so grateful and thankful that this was a a three-day experience, not a three-month, not a three-year, not a 30-year experience you know what I mean so many families go through this stuff long term like I was worried I was signing up for like the type of uh, long drawn-on experience we had with my dad.

01:24:07.060 --> 01:24:17.158
The fact that we had to go through it was difficult, but the fact that we made it through it as quickly as we did was such a blessing.

01:24:18.449 --> 01:24:24.680
I mean, we do still have a little bit of a road ahead of us when it comes to her overcoming this.

01:24:24.680 --> 01:24:34.341
We do have things that we have to put into play we need to take away, like specific hard toys when she's getting tired, because she is still going to drop her head.

01:24:34.341 --> 01:24:41.456
And she could certainly hurt herself with what she's doing, you know, so it takes a lot of attention, you know.

01:24:41.676 --> 01:24:53.301
but we do have follow ups, with the neurologist coming up in the next couple of weeks, and they're going to monitor her and kind of watch this process just to ensure that it doesn't turn into anything else.

01:24:53.301 --> 01:24:55.774
So they are going to monitor that.

01:24:55.774 --> 01:25:06.332
But it's going to be the same provider that saw us through this entire process and the one that gave us the good news, and so that makes us feel good that we're going to be able to circle back with him.

01:25:06.332 --> 01:25:15.613
He, he has the data, he has everything that he needs, um, and he has no doubt in his mind that she's going to outgrow this and and we're going to be okay.

01:25:15.613 --> 01:25:33.371
So, um, you know, there is a little bit of a road ahead of us that we're going to have to, um, you know, still monitor and and be cautious of um, but to know the outcome was yeah, this was as positive as a result as we could have hoped for.

01:25:33.390 --> 01:25:47.332
Yeah, um, you know the initial pediatrician was wrong and saying it was a developmental yeah you know thing, it actually is a condition yeah we're so grateful that it wasn't the spasms that lead to these seizures.

01:25:47.332 --> 01:25:49.913
Um, we're so grateful that we wasn't the spasms that lead to these seizures.

01:25:49.934 --> 01:25:51.534
We're so grateful that we went and had it done.

01:25:51.534 --> 01:25:53.896
You know what I mean, because it did get worse.

01:25:55.078 --> 01:25:58.740
Like time she's done it, the frequency in which it happens.

01:25:58.740 --> 01:26:05.067
We would have been scared and we would have been starting this process and waiting on appointments and things Looking to get in.

01:26:05.828 --> 01:26:11.139
You always say that when you sprinkle time and distance on it, you know things make sense and and you know it happens for a reason.

01:26:11.139 --> 01:26:13.243
So we did what we had to do when we had to do it.

01:26:13.243 --> 01:26:18.860
It went the way it had to go, and we're thankful to now know that our baby girl is going to be okay.

01:26:18.860 --> 01:26:20.711
Yeah, and um.

01:26:20.711 --> 01:26:33.662
Chalk it up to um a confirmation of faith and a lesson in priorities, and and um to truly be thankful for our blessings and what we truly have.

01:26:33.662 --> 01:26:38.966
You know, I think it really makes you not take health for granted.

01:26:39.146 --> 01:26:39.606
You know what I mean.

01:26:39.606 --> 01:26:48.515
I think it's also really important to remind the moms out there and dads.

01:26:48.515 --> 01:26:59.337
I don't know how the dad intuition works, but I did not feel well on Friday at all at all and just I have migraines.

01:26:59.337 --> 01:27:02.904
But to think about it, I did not.

01:27:02.904 --> 01:27:03.845
This was not a migraine.

01:27:03.845 --> 01:27:08.815
I felt different, I felt odd, I felt off, so much so that I left work early.

01:27:08.815 --> 01:27:14.442
I do not call out, I do not leave work early unless it's planned Like it's on the schedule already.

01:27:14.442 --> 01:27:28.676
I went to my boss and I was like I feel sick to my stomach, I have to go home, and it was like within 15, 20 minutes of me being home early that I had seen the episode.

01:27:28.676 --> 01:27:29.737
Would I have not and not caught it on camera Right?

01:27:29.737 --> 01:27:31.399
Would we be frantically looking now?

01:27:31.720 --> 01:27:35.926
Well, we also know that messages never would have made it to a pediatrician Correct.

01:27:40.430 --> 01:27:42.055
You know what I mean we never would have had their input.

01:27:42.055 --> 01:27:42.858
Who knows how things would have went so?

01:27:42.877 --> 01:28:06.319
clearly, we were put in a position to see these things when we did to identify them and to make the course of action that we did to identify them, um, and you know, and and to make the course of action that we did so so just trust your gut when it comes to your children and if you are uncertain, take a video, like you know, send it in to your pediatrician I know they were all thankful everybody we ran into during this process that we had a video.

01:28:06.338 --> 01:28:07.746
So they're like can I see the video?

01:28:07.746 --> 01:28:08.028
Can I see?

01:28:08.028 --> 01:28:10.181
The video even the nurses like everybody, can I see the?

01:28:10.202 --> 01:28:10.484
video.

01:28:10.484 --> 01:28:10.947
Can I see it?

01:28:10.947 --> 01:28:12.591
I'm like, yeah, absolutely, here you go.

01:28:12.591 --> 01:28:19.957
And it gave them a full perspective of what they're watching for on the floor as well.

01:28:19.997 --> 01:28:23.166
We were handled with such class.

01:28:23.166 --> 01:28:28.578
We had received the top-notch best attention.

01:28:28.578 --> 01:28:29.220
You what?

01:28:29.220 --> 01:28:36.675
I mean, we were, we were taken care of, they were, everybody was very professional and um they were actually surprised how like self-sufficient we were.

01:28:36.716 --> 01:28:39.225
They were like you guys can go downstairs, we'll watch.

01:28:39.225 --> 01:28:42.154
Nope, I'm not leaving her like do you need anything?

01:28:42.154 --> 01:28:42.896
Nope, we're good.

01:28:43.279 --> 01:28:54.015
Nothing, nope, we're good, I know there's um, before we wrap this up, before I forget, I know there's a lot of people that are listening right now that are going to be like they're going to reach out and say dude, why did you guys not reach out to us?

01:28:54.015 --> 01:28:55.257
You didn't reach out to anybody.

01:28:55.939 --> 01:28:59.578
Why did you, you know, not ask for help?

01:28:59.578 --> 01:28:59.878
Why did?

01:28:59.878 --> 01:29:01.351
I could have done the chores for you.

01:29:01.351 --> 01:29:06.601
The honest truth is that we don't know.

01:29:06.601 --> 01:29:17.335
You know what I mean, like my, my, um, all my mental capacity, all my every ounce of energy and being, and who I was, was dedicated to my little girl and I couldn't really process anything else I'm honest, I couldn't.

01:29:17.354 --> 01:29:22.175
I have missed text messages in my phone that like sorry if I didn't get to you.

01:29:22.175 --> 01:29:24.826
I just I'm supposed to be planning a baby shower.

01:29:24.826 --> 01:29:27.011
I just I mentally could not do anything.

01:29:27.011 --> 01:29:29.435
I'm supposed to be working and doing, making flyers and stuff.

01:29:29.435 --> 01:29:31.099
I just I don't have it in me.

01:29:31.099 --> 01:29:36.835
I have no mental capacity to do anything else except for stare at my daughter.

01:29:36.835 --> 01:29:39.189
I didn't even have the mental capacity to talk to you.

01:29:39.331 --> 01:29:39.972
Let's be honest.

01:29:39.972 --> 01:29:41.817
Yeah, and you're talking about me.

01:29:41.817 --> 01:29:43.100
You're looking at me Right?

01:29:43.100 --> 01:29:43.561
Not?

01:29:43.561 --> 01:29:45.091
I want people listening.

01:29:45.091 --> 01:29:47.416
We're not talking about you saying we didn't have like.

01:29:47.416 --> 01:29:48.237
She's talking about me.

01:29:48.318 --> 01:29:50.501
Yeah, I'm staring at you in the eyes.

01:29:50.681 --> 01:29:51.462
Not speaking.

01:29:51.563 --> 01:29:51.762
Yeah.

01:29:52.505 --> 01:29:55.278
Um, so I apologize, I just.

01:29:55.278 --> 01:29:58.779
There was no ability to really reach out, there was no energy.

01:29:58.779 --> 01:30:00.184
Um.

01:30:00.363 --> 01:30:01.146
I also think that it's.

01:30:01.146 --> 01:30:26.637
It's important for you've talked about it on your podcast before that in times of need, sometimes you have to go to the core, your core, and me, you and your mom are the core, so like and now paisley being there, like we clung to each other and that was it we didn't have the ability to even think about anyone outside of our core.

01:30:27.439 --> 01:30:36.420
It was every ounce of energy and, being that, we had to keep the like the four of us um on the up and up you know what I mean.

01:30:36.420 --> 01:30:36.931
So.

01:30:36.931 --> 01:30:44.617
I apologize to those of you that are listening that we didn't reach out to you, cause that's basically all of you that are listening that know us.

01:30:45.298 --> 01:30:50.136
Um, you know it just nothing against you guys, nothing against anybody, man, it was.

01:30:50.478 --> 01:30:52.435
Um, I didn't.

01:30:52.435 --> 01:30:57.931
I would have not had the proper energy to actually give you a proper description of what was going on.

01:30:57.931 --> 01:31:08.317
You know what I mean, yeah like if I told you, hey, we're in the hospital, like I would, I couldn't have even fed you, yeah, the information for you to understand and it probably you would have been like who is this guy talking?

01:31:08.337 --> 01:31:13.274
or or it probably you would have been like who is this guy talking, or or me myself, cause it would have been like that are listening that we had conversations.

01:31:13.936 --> 01:31:26.585
Um, you reached out to me for something and I expressed to you this is where I'm at, this is what I'm doing, because I knew I also couldn't get in a conversation with you and like and and be myself.

01:31:26.664 --> 01:31:26.784
Yeah.

01:31:31.770 --> 01:31:32.453
You like and and be myself.

01:31:32.453 --> 01:31:32.895
Yeah, you know what?

01:31:32.935 --> 01:31:35.203
I mean I couldn't respond and be who I you expected me to be or give you answers you needed.

01:31:35.203 --> 01:31:49.400
So, um, katarina in particular, like I was like one word answers to her, because I'm just like I can't, like I I'm like answering like on my watch and I'm like, okay, yep, in the morning, like just very I I had missed a phone call from brian.

01:31:49.820 --> 01:31:53.471
Um, and hours had gone by before I realized.

01:31:53.471 --> 01:31:56.180
It might have been eight hours before I realized and I'm like should I?

01:31:56.180 --> 01:31:59.435
I mean, brian just put his life on hold to travel to florida with me.

01:31:59.435 --> 01:32:09.904
I owe him a message and it turned into what was going on and and you know, and, and it's like it's hard to put out there to people.

01:32:09.904 --> 01:32:10.404
You know what I mean.

01:32:10.649 --> 01:32:18.064
I had Matt Perkins had asked me a question and I was like this is what I'm dealing with, you know, and Finnegan as well.

01:32:18.064 --> 01:32:19.336
Those are the only people I talk to.

01:32:19.336 --> 01:32:32.824
I still, as we're having this recording, haven't reached out to anybody because, like I'm still trying to define the words and the energy to put it all together, yeah it was much easier for us to press record and tell our story.

01:32:33.405 --> 01:32:38.402
So I know a lot of people are going to hear the opening credit to this and be like what the fuck are you talking about?

01:32:38.402 --> 01:32:42.681
Yeah but this is this is it.

01:32:42.681 --> 01:32:48.731
I think that we learned a lesson on, you know, banding together and giving all you have to what's important, and that's our little girl.

01:32:48.731 --> 01:32:56.798
Yeah, and that's what we had, and that's about an hour and 30 minutes of us telling our story.

01:32:57.038 --> 01:32:58.659
Sorry, Kevin, if you were on cardio.

01:32:59.140 --> 01:33:01.122
Yeah, your legs are on fire if that's the case.

01:33:02.182 --> 01:33:04.926
So all y'all that are listening, thank you for listening.

01:33:04.926 --> 01:33:05.886
Thank you for your support.

01:33:05.886 --> 01:33:07.408
I know you would have been there.

01:33:07.408 --> 01:33:08.914
I know you would have prayed for listening.

01:33:08.914 --> 01:33:09.163
Thank you for your support.

01:33:09.163 --> 01:33:09.368
I know you would have been there.

01:33:09.368 --> 01:33:09.530
I know you would have prayed for us.

01:33:09.530 --> 01:33:09.672
I know you would have pulled for us.

01:33:09.672 --> 01:33:11.498
I know you would have offered to do many things for us.

01:33:11.498 --> 01:33:14.252
Just know us.

01:33:14.252 --> 01:33:20.679
Knowing you would have done those things meant the world to us and they continue to and they will always mean the world to us.

01:33:20.679 --> 01:33:23.497
We apologize for not reaching out to you.

01:33:23.497 --> 01:33:35.322
We truly, truly, were just giving every ounce of who we are and our being to our little girl and that's all we could do, and we didn't know how to proceed or to function or to process these things.

01:33:35.322 --> 01:33:38.560
But now we do and that's why we're sharing them with you.

01:33:38.649 --> 01:33:46.622
We want to say thank you and we love you and we thank you for supporting Little American Dream.

01:33:48.551 --> 01:33:53.573
Now go wash your fucking hands, you filthy germ-bot.

01:33:54.176 --> 01:33:56.221
Germ-bot Savage.

01:33:56.221 --> 01:33:58.797
That's it and that's all Biggie Smalls.

01:33:58.797 --> 01:34:25.319
If you're a loud, proud American and you find yourself just wanting more, find me on YouTube and Facebook at Loud, proud American Put the face page, as my mama calls it.

01:34:25.319 --> 01:34:28.369
If you're a fan of the Graham Cracker, you want to find me on Instagram.

01:34:28.369 --> 01:34:32.521
Or all the kids by tickety-talking on the TikTok.

01:34:32.521 --> 01:34:39.981
You can find me on both of those at loud, underscore, proud, underscore American.

01:34:39.981 --> 01:34:55.929
A big old thank you to the boys from the Gut Truckers for the background beats and the theme song to this year's podcast.

01:34:55.929 --> 01:35:00.878
If you are enjoying what you're hearing, you can track down the Gut Truckers on Facebook.

01:35:00.878 --> 01:35:02.456
Just search Gut Truckers.

01:35:02.456 --> 01:35:04.778
Give them, motherfuckers, a like too.

01:35:04.778 --> 01:35:08.300
I make it bleed.

01:35:08.300 --> 01:35:25.164
I hate to.

01:35:25.164 --> 01:35:28.006
I truly thank you for supporting my American dream.

01:35:28.006 --> 01:35:33.399
Now go wash your fucking hands, you filthy savage.