Latest / Tom's Hirschsprung's Podcast / Episode 45 - With Robyn Taylor

Transcript

Episode 45 - With Robyn Taylor · Tom's Hirschsprung's Podcast

0:05
Speaker 1: You are listening to Tom's Hirshprung's Podcast, where our provide
0:08
Speaker 1: a look into the remarkable experiences of the most inspiring
0:11
Speaker 1: people around Hirshprung's disease and sports.
0:38
Speaker 2: Hello and welcome to episode forty five of Tom's Hirshprung's Podcast.
0:44
Speaker 2: With Me Today is an entrepreneur, the host of the
0:48
Speaker 2: podcast Embrace Your Bravery, and a fellow Reach HD ambassador.
0:55
Speaker 2: Welcome Robin Taylor, Welcome to the podcast.
0:58
Speaker 3: Thank you so much for having me. I'm so excited
1:00
Speaker 3: to chat.
1:00
Speaker 2: Today me too. Thank you so much again for coming on.
1:04
Speaker 2: I'm sure a lot of people have been keeping up
1:06
Speaker 2: with your story, and we'll talk about your reels on
1:09
Speaker 2: Instagram and Facebook and everything a little bit later on.
1:13
Speaker 2: But it's an absolute pleasure to have you on because
1:16
Speaker 2: I know you are such a huge advocate of Hirshbrown's
1:20
Speaker 2: disease and finding binding answers and basically just helping people out,
1:26
Speaker 2: which is kind of all what this podcast is about.
1:29
Speaker 2: So when I saw your story and I saw saw
1:32
Speaker 2: everything you're doing, I thought, well, this is a perfect
1:35
Speaker 2: person to have, so thank you so much, so much
1:37
Speaker 2: for coming on. As I mentioned as well, we will
1:41
Speaker 2: start sort of from the beginning with your daughter, Charlie Grace,
1:47
Speaker 2: if you'd like to take us back sort of to
1:50
Speaker 2: around about I believes about two days old y sort
1:54
Speaker 2: of where everything first started.
1:57
Speaker 4: Yeah, for sure.
1:58
Speaker 3: Okay, So I'd like to go a little bit further
2:02
Speaker 3: to fully tell her story, so.
2:05
Speaker 4: Just to get the full picture of her journey.
2:09
Speaker 3: So we actually we have two older kids. She's our youngest,
2:14
Speaker 3: and we had actually been trying for baby number three
2:17
Speaker 3: for almost three years before we got pregnant with Charlie.
2:22
Speaker 3: And so that's part of her journey. That's part of
2:24
Speaker 3: her story. And we actually I found out I was pregnant.
2:29
Speaker 3: It was COVID times. So I was sick with COVID.
2:34
Speaker 3: My whole family was sick. But they were recovering. They
2:37
Speaker 3: were fine, they were all good. I was not.
2:40
Speaker 4: I was very I could not get better. It was
2:44
Speaker 4: the day before.
2:45
Speaker 3: Thanksgiving of twenty twenty and I was like, I don't
2:50
Speaker 3: I don't know, something's not right.
2:52
Speaker 4: I'm just not feeling well.
2:53
Speaker 3: I had, you know, the really bad shortness of breath
2:57
Speaker 3: and to where it was hard to even walk without
3:00
Speaker 3: like gasping for air. I couldn't even talk to anyone
3:03
Speaker 3: without hanting.
3:05
Speaker 4: It was so bad. I was coughing.
3:08
Speaker 3: I had the shortest of you know, the shortest of breath,
3:10
Speaker 3: the cough, the sore throw, all of that, and I
3:13
Speaker 3: just wasn't getting better. It was weeks some weeks, and
3:15
Speaker 3: I'm like, something's not right. So we go to urgent
3:18
Speaker 3: care and you know, because it was COVID, they weren't
3:23
Speaker 3: allowed to have any visitors in, so it was just me.
3:25
Speaker 3: My husband drove me there and had the two older
3:28
Speaker 3: kids in the car, and they wanted to do a
3:30
Speaker 3: chest sex right because they thought maybe I had a pneumonia.
3:33
Speaker 3: And they're like, is there any chance you could be pregnant?
3:36
Speaker 3: And I'm like, oh, that's funny, Like no, yes there's
3:41
Speaker 3: a chance, but I'm probably not because we've turned rye
3:43
Speaker 3: for like almost three years. Right, And find out that
3:46
Speaker 3: I'm pregnant at the urgent care and I'm just like,
3:51
Speaker 3: I mean, I'm so shocked because at this point we're
3:54
Speaker 3: kind of like maybe foster, like maybe we'll adopt, Like
3:58
Speaker 3: we're kind of like, well, maybe this isn't in our plan, right,
4:03
Speaker 3: So find out that I'm pregnant there and I'm just
4:05
Speaker 3: like freaking out. So then I go out to the car,
4:08
Speaker 3: tell my husband, Jordan and the two older kids that
4:11
Speaker 3: I'm pregnant, and you know, it's just insane, insane.
4:15
Speaker 4: So that's really where her story starts.
4:20
Speaker 2: Fantastic was wast and shocked.
4:24
Speaker 3: Yeah, we were all in shock because we were just
4:26
Speaker 3: kind of like we hadn't given up, but we had
4:30
Speaker 3: we were open to however, baby number three was going
4:33
Speaker 3: to come right. We were like, Okay, maybe that's that
4:36
Speaker 3: we're holding on too tight, and you know, we.
4:39
Speaker 4: Just kind of started letting go a little bit.
4:42
Speaker 3: And that's actually I think how it happened because we
4:45
Speaker 3: were holding on so tight, we let things go and
4:47
Speaker 3: kind of gave it and surrendered, and then it happened
4:51
Speaker 3: in God's timing. So so then I became a COVID
4:55
Speaker 3: longhoulder my whole pregnancy. I had all those symptoms the
4:58
Speaker 3: entire pregnancy, which definitely made things complicated. Then I had
5:05
Speaker 3: placenta previa with a bleed, so placenta was blocking the
5:09
Speaker 3: cervix and there was bleeding. I was hospitalized for weeks
5:13
Speaker 3: at a time, again just like adding complexity because of
5:18
Speaker 3: COVID and you can only have one visitor. So my
5:21
Speaker 3: husband like juggling all of that like our village. Really
5:24
Speaker 3: they had to show up for us, so that was challenging.
5:27
Speaker 3: Then we have Charlie and we make it to the
5:30
Speaker 3: thirty seven weeks. We're all good, we're all healthy. We
5:34
Speaker 3: have her visc section. Things go well, and she's healthy.
5:40
Speaker 3: The first two days of life.
5:42
Speaker 4: She's pooping as she should.
5:45
Speaker 3: All of her checks are great, she's looking well. I'm
5:50
Speaker 3: doing fine. I did have to have a blood transfusion,
5:53
Speaker 3: but that seems like nothing compared to look you are
5:56
Speaker 3: whole story because I lost a lot of blood. But
5:59
Speaker 3: they're like, oh my gosh, So I had a blood transfusion.
6:02
Speaker 4: That was fine.
6:03
Speaker 3: I felt better the next day. But she we were
6:08
Speaker 3: like getting discharged from the hospital. Everything was fine, Like Jordan's.
6:12
Speaker 4: Packed up the car.
6:14
Speaker 3: He's like coming back up where we got a wheelchair,
6:18
Speaker 3: like we're literally like heading home. Called our my sister
6:23
Speaker 3: in law like, hey, we're gonna you know, we're heading home.
6:26
Speaker 4: Meet us at the house with the big.
6:29
Speaker 3: And then she started peeking up green vial and so
6:33
Speaker 3: then it was like whoa, Like something is.
6:35
Speaker 2: Not right this.
6:38
Speaker 3: We don't know what this means, Like what's happening? We
6:42
Speaker 3: called the nurses in and at first they're just kind
6:44
Speaker 3: of like, oh, it's just been up, like no, thank
6:47
Speaker 3: to you, Like, oh, that's normal.
6:49
Speaker 4: And I hadn't seen it.
6:51
Speaker 3: My husband had, so I was in the bathroom where
6:54
Speaker 3: he was like, oh my gosh, like something's wrong. And
6:57
Speaker 3: so they're just like kind of like pushing us off,
7:00
Speaker 3: like no, it's not a big deal, and he's like, no,
7:03
Speaker 3: I really I need someone to check her out, like
7:06
Speaker 3: this is not okay. We have two older kids, like
7:10
Speaker 3: this is definitely not normal.
7:12
Speaker 4: Spit up, this is green.
7:15
Speaker 3: And so so then they finally like brought doctors in
7:20
Speaker 3: and started like checking her out, saw it for themselves,
7:23
Speaker 3: and they're like, okay, you're going.
7:25
Speaker 4: To the nick you.
7:28
Speaker 3: And that's when like a series of events happened that
7:31
Speaker 3: led to her diagnosis of Hirshprunk's disease at three days old. So,
7:36
Speaker 3: you know, that was a really scary, like uncertain time
7:41
Speaker 3: for us. We had no idea what's wrong. They're running
7:45
Speaker 3: all sorts of tests. We see her in the nick
7:47
Speaker 3: you and she's hooked up to all the thing and
7:51
Speaker 3: you don't know what's you know, what's going on or
7:53
Speaker 3: why this is happening.
7:55
Speaker 2: So it was.
7:56
Speaker 3: Really really terrifying. And meanwhile, I'm like, do in a wheelchair?
8:01
Speaker 3: You know, just had major C section surgery two days prior,
8:06
Speaker 3: so I'm like, all sorts of not okay. So that's
8:11
Speaker 3: that's when she finally was diagnosed with Hirshbrung's disease and
8:15
Speaker 3: then she had a pull through surgery at eight days old.
8:19
Speaker 2: Wow, that's that's an incredible story. Thank you for sharing
8:22
Speaker 2: all the the pre two days old because I think
8:25
Speaker 2: that's that's very very interesting to hear. But was there
8:31
Speaker 2: sort of any family history of hirshbuns or was it
8:35
Speaker 2: kind of like, well my story as such and the
8:38
Speaker 2: fact that you know, I've got three brothers, none of
8:40
Speaker 2: them got hirshbruns. Nothing in my family and anything it was.
8:45
Speaker 2: Was there sort of any indication.
8:48
Speaker 3: No, So we have no known family history. We haven't
8:51
Speaker 3: done any like genetic testing. We want to just to
8:53
Speaker 3: know if it is possibly in the genetics, but no
8:58
Speaker 3: known history and had not even heard of Hirshbrung's disease
9:04
Speaker 3: prior to this, so we know we.
9:07
Speaker 4: Had no idea.
9:09
Speaker 2: Wow, that's so she has her surgery, it's sort of
9:15
Speaker 2: a few days a few days old, was she diagnosed with.
9:18
Speaker 2: I'm guessing just from the symptoms you described its short segment. Yes,
9:23
Speaker 2: short segment. Hirshbrum's around about I think about eighty percent
9:27
Speaker 2: of Hirshbrung's people are our short segments. So at least
9:31
Speaker 2: you get sort of from having an uncommon disease. At
9:33
Speaker 2: least you get a sort of common ish outcome from that,
9:36
Speaker 2: which I don't know whether that's any comfort to take,
9:38
Speaker 2: but it's yeah, but yeah, sort of eighty percent from
9:44
Speaker 2: what I've read. And I know you've done quite a
9:47
Speaker 2: lot of research yourself as well. I know we're sort
9:51
Speaker 2: of skipping a head a little bit, but do you
9:52
Speaker 2: want to talk a little bit about some of the
9:55
Speaker 2: research you've done.
9:57
Speaker 3: Yeah, So, you know, after the surgery, we were kind
10:03
Speaker 3: of misled by doctors.
10:05
Speaker 4: And in the fact of like, the.
10:07
Speaker 3: Surgery was successful, so you don't have anything to worry
10:11
Speaker 3: about ever, like she is gonna be healthy, you know,
10:14
Speaker 3: because we asked, like what could this affect.
10:16
Speaker 4: Her later in life? Like what does this look like?
10:19
Speaker 3: And by the surgeons and then all of the doctors
10:22
Speaker 3: that we came in contact with, they assured us that
10:25
Speaker 3: she would have no other issues and there's nothing to
10:29
Speaker 3: worry about. And so, you know, when she was newborn
10:33
Speaker 3: and we learned about this, then we're researching and we're
10:35
Speaker 3: googling and we're like trying to figure out all the
10:37
Speaker 3: things we need to learn about it. But then after
10:40
Speaker 3: the surgery and she was healthy. She was a healthy
10:43
Speaker 3: baby for the most spart She didn't have any other
10:46
Speaker 3: complications after surgery, and so we kind of like we
10:52
Speaker 3: knew she had it, but it was kind of like
10:54
Speaker 3: one of those things that we thought, Okay, well, she's
10:56
Speaker 3: kind of cure heed, like you know, like she had
10:58
Speaker 3: a surge and I fixed it and we don't have
11:01
Speaker 3: to worry about anything because we didn't have any other
11:04
Speaker 3: health complications to prompt us to worry about it. Now,
11:09
Speaker 3: anytime she had any sort of stomach issues as a
11:14
Speaker 3: as a baby, we would always ask, does do we
11:17
Speaker 3: need to think about the hirshprends disease?
11:19
Speaker 4: Do we need like, you know, is this anything?
11:22
Speaker 3: Is there a complication with the hirshprend disease that we
11:24
Speaker 3: need to like discover or look through, And the doctors
11:27
Speaker 3: would always tell us no, nothing related, nothing related always,
11:31
Speaker 3: and for the most part they were right. But she
11:35
Speaker 3: then when she was a little over or two, she
11:40
Speaker 3: started having this NonStop diarrhea and at first, you know,
11:45
Speaker 3: the pediatrician is like, it's a stomach bug, okay. So
11:49
Speaker 3: then a couple of weeks go by, she's still having it,
11:52
Speaker 3: and then they're like, oh, she's teething.
11:54
Speaker 4: It's teething. So then a.
11:55
Speaker 3: Couple more weeks go by, we're still doing with this,
11:59
Speaker 3: and so then they're like, well, let's do a stool
12:01
Speaker 3: sample and see if there's anything going on. She actually
12:04
Speaker 3: came back with a positive for parasite, so then they
12:07
Speaker 3: treated her for a parasite and so that was antibiotics,
12:12
Speaker 3: and then we're still dealing with the same issues weeks later.
12:17
Speaker 3: Then it's like, oh, well, the gut has needs time
12:21
Speaker 3: to heal, right, So the gut needs to heal for
12:23
Speaker 3: weeks and weeks and weeks and weeks, and I'm like,
12:25
Speaker 3: how long does the gut take to heal? I mean,
12:29
Speaker 3: because this is still going on weeks later.
12:32
Speaker 4: And so that's.
12:34
Speaker 3: When we started, you know, really trying to.
12:38
Speaker 4: Do our own research.
12:41
Speaker 3: That's when we finally got a GI referral for a
12:45
Speaker 3: GI specialist. They got it on board, they started testing
12:50
Speaker 3: all sorts of things. So they did an endoscopy, they
12:55
Speaker 3: did a colonoscopy, they did like a million stool samples.
13:00
Speaker 3: What it felt like when you're doing skills bamples and
13:05
Speaker 3: all sorts.
13:06
Speaker 4: Of X rays.
13:06
Speaker 3: I'm like, oh my gosh, I don't want to put
13:08
Speaker 3: her through another X ray. We're not you know, after
13:11
Speaker 3: months of this, we're like, we're not getting anywhere, you know,
13:14
Speaker 3: We're not like, I don't feel like we're getting any
13:17
Speaker 3: closer to an answer.
13:20
Speaker 2: You know.
13:21
Speaker 3: They thought that she had bacterial overgrowth, so they did
13:25
Speaker 3: another round of antibiotics and that didn't work. And I'm like, okay,
13:28
Speaker 3: I'm tired of giving her just antibiotics after antibiotics, seeing
13:33
Speaker 3: no results from it, not having an answer, and then
13:37
Speaker 3: feeling like, oh, this is it, this is the thing,
13:39
Speaker 3: you know, and then being so confident that they figured
13:42
Speaker 3: it out.
13:43
Speaker 4: And then it not being the thinking and so you know, that's.
13:47
Speaker 3: When we really started just getting on the internet, getting
13:51
Speaker 3: on Google searching and searching for you know, anything that
13:56
Speaker 3: would give us some guidance. I started losing trust in
14:01
Speaker 3: our you know, gi specialists, in our doctors, and for
14:06
Speaker 3: you know, it's not their fault, but it felt like
14:08
Speaker 3: they don't really know, they don't really know what this is.
14:12
Speaker 4: I don't feel confident that.
14:14
Speaker 3: We're even looking in the right spot. I don't feel
14:17
Speaker 3: confident that we're getting any closer to an answer. And
14:20
Speaker 3: so so that's whenever I found some Facebook groups, and
14:26
Speaker 3: that's whenever I discovered your podcast, you know, that's whenever,
14:30
Speaker 3: you know, I found these support groups out there, and
14:34
Speaker 3: that is how we found Nationwide Children's Hospital, and we
14:38
Speaker 3: discovered doctor would And so just searching the Facebook page,
14:42
Speaker 3: you know, asking a lot of questions and searching for recommendations.
14:48
Speaker 3: You know, we talked to lots of different hospitals, but
14:51
Speaker 3: when we talked to Nationwide, we just felt like this
14:54
Speaker 3: is the team that we need on our side. Oh
14:58
Speaker 3: my gosh, that's so funny because the commer Nationwide Nationwide
15:01
Speaker 3: it isign yours.
15:02
Speaker 4: And not that yes.
15:06
Speaker 3: Anyways, so we just felt like this is a good fit,
15:10
Speaker 3: like that, we feel confident that they're going to help us,
15:14
Speaker 3: you know. And so they were great from right right
15:17
Speaker 3: from the beginning. Just any phone call I had with them,
15:20
Speaker 3: super supportive. I felt like, you know, we had a
15:24
Speaker 3: phone call with one of the nurses and it felt
15:28
Speaker 3: like in my our phone call with her that she
15:31
Speaker 3: was more knowledgeable about Hirshbrug's disease than the current doctors
15:35
Speaker 3: that we had been seeing. You know, it was like, hey,
15:38
Speaker 3: I feel yeah, I feel like we're in the right spot,
15:41
Speaker 3: We're in the right hands and so and so that's
15:44
Speaker 3: why we decided to travel from Texas to Columbus, Ohio
15:49
Speaker 3: and see doctor would And that is where we found
15:54
Speaker 3: out that she is missing eighty percent of her dentate line.
16:00
Speaker 4: And the dentate line is where your body.
16:04
Speaker 3: Is giving you this sensation to know that you have
16:07
Speaker 3: to poop. And I didn't know what a dentate line
16:10
Speaker 3: was that I had never heard of that. I'm like, okay,
16:12
Speaker 3: now I'm googling dentate line. How important is it? Like
16:15
Speaker 3: do you really need one? Like you know, like I
16:18
Speaker 3: don't know. It's like the things you take for granted, right.
16:22
Speaker 2: Yeah, absolutely, absolutely absolutely. I was just thinking, I mean,
16:28
Speaker 2: all of the things you have to search Google history
16:31
Speaker 2: must look very interesting.
16:32
Speaker 3: Indeed, yes, all the poop things, all the body parts.
16:39
Speaker 3: I'm like, okay, what's the anatomy? Like I need to
16:41
Speaker 3: picture this.
16:42
Speaker 4: We're like what.
16:45
Speaker 3: So when we were at a nationwide they did an
16:48
Speaker 3: exam under anesesia for Charlie and that's when he discovered
16:53
Speaker 3: that she was missing eighty percent of that line. And
16:56
Speaker 3: he said that, you know, his assumption would be that
17:01
Speaker 3: they cut too low in her pool for surgery at
17:04
Speaker 3: eight days old, damaging that dentate line. And what I
17:08
Speaker 3: loved about the doctor Wood was that he was very transparent.
17:13
Speaker 3: You know, he said, I'm going to tell you what
17:15
Speaker 3: I see exactly how I see it, and we're like, yes, please,
17:19
Speaker 3: because we want to know whatever.
17:21
Speaker 4: We need to know.
17:23
Speaker 3: And at the time, we like really weren't sure what
17:27
Speaker 3: does this really even mean for her for her life,
17:31
Speaker 3: Like we still are and are taking day by day,
17:35
Speaker 3: but it's like more and more I'm processing the information
17:40
Speaker 3: and understanding, you know, what that could mean for her.
17:45
Speaker 3: But basically it means that she is meeting bowel management
17:51
Speaker 3: currently and in the future. They say that, you know,
17:55
Speaker 3: she could have functioned, she could not.
17:57
Speaker 4: We don't know.
17:58
Speaker 3: They've seen people, well, you know, gain that function later
18:02
Speaker 3: in life. They've seen others that can't at all and
18:06
Speaker 3: need that management. So right now, what that looks like
18:10
Speaker 3: is either doing laxatives or daily enemas. And she's three now,
18:18
Speaker 3: so that's been interesting.
18:22
Speaker 2: Yes, very much, so very much so. No, I have
18:26
Speaker 2: enormous sympathy with that because, as I mentioned a little
18:30
Speaker 2: bit some of my stories that you know, I went
18:33
Speaker 2: through something very very similar in terms of the animals
18:37
Speaker 2: and the washouts at the STONMA at nine did the
18:40
Speaker 2: washouts up to fifteen, but big, it's crossed from fifteen onwards.
18:46
Speaker 2: Everything is normal, no washouts, no stonema, know nothing, And
18:51
Speaker 2: I'm not here to give any medical advice or anything
18:54
Speaker 2: like that, but I just really want to show that actually,
18:58
Speaker 2: you know, it is very much possible to to be
19:01
Speaker 2: quote unquote of a normal life, you know, without the washouts,
19:05
Speaker 2: without the animism and and everything. But no, thank you,
19:10
Speaker 2: thank you so much for sharing, for sharing the story
19:13
Speaker 2: so far. Well, you said a little bit about sort
19:16
Speaker 2: of Facebook groups and about Instagram, and we talked a
19:21
Speaker 2: little bit about your your reels that you've done that
19:25
Speaker 2: have been incredibly informative. Just how much has social media
19:30
Speaker 2: because we all know that social media it has great things,
19:33
Speaker 2: it has terrible things, and everything in between. But how
19:37
Speaker 2: much has social media helped you in particular?
19:42
Speaker 3: Yeah, I mean, oh my goodness, so much, like we
19:46
Speaker 3: would not have known what we know now, we would
19:50
Speaker 3: not have the knowledge, we would not have the support
19:55
Speaker 3: and the community because there were some moments. So we
20:00
Speaker 3: struggled for a year before we found doctor Wood. We
20:05
Speaker 3: struggled with you know, the unknown and being so worried
20:10
Speaker 3: and all of the emotions and feeling really alone in
20:14
Speaker 3: this and feeling a little like maybe I'm crazy, you know,
20:18
Speaker 3: like what's the thing?
20:19
Speaker 4: I don't know, there's some insanity here, I don't know.
20:23
Speaker 3: But but so it was everything to me to find
20:28
Speaker 3: this support system online. And I think because the disease
20:32
Speaker 3: is so rare, I didn't know anyone in my in
20:36
Speaker 3: person life that has ever had this or said the
20:39
Speaker 3: word to me. So I know nobody in my real life,
20:43
Speaker 3: you know, And so just feeling really alone and feeling
20:48
Speaker 3: really scared. So the online community has been everything and
20:54
Speaker 3: it and that's really where we found, you know, our hope.
20:59
Speaker 3: We found like, Okay, we're not alone in this. We
21:02
Speaker 3: have support and I kind a group of people. You know,
21:05
Speaker 3: it's over ten thousand people in that community that have
21:09
Speaker 3: personal experience, whether that's themselves or their children, and they're
21:15
Speaker 3: a great support group when you have a question or
21:18
Speaker 3: you just need like hey, am I alone in this?
21:21
Speaker 3: You know, you can do a search in the Facebook
21:23
Speaker 3: group and find oh, actually, this is actually not too uncommon,
21:28
Speaker 3: and you know, it gives me that sense of hope
21:30
Speaker 3: and that like, oh my gosh, okay, you know, I
21:33
Speaker 3: can I can have faith that things might get better right,
21:38
Speaker 3: and I can like see the other side of things
21:41
Speaker 3: where maybe I feel so deep dark in this lonely,
21:46
Speaker 3: gloomy space right now, but there's hope that things could
21:49
Speaker 3: get better, right, And it's nice to be able to
21:52
Speaker 3: connect with other people. And I'm like so grateful for
21:57
Speaker 3: that community because it's how we found you know, doctor
22:01
Speaker 3: Would and he's so amazing and highly recommended by.
22:06
Speaker 4: So many people.
22:07
Speaker 3: I mean people travel all over the country and out
22:10
Speaker 3: of the country just to see him. And so I
22:13
Speaker 3: feel very grateful because I don't know how long we
22:17
Speaker 3: would have gone down this road with our gi doctors
22:22
Speaker 3: and not found the root cause of her issues.
22:25
Speaker 2: You know, yeah, yeah, no, definitely that's fantastic. And when
22:31
Speaker 2: it comes to doctor Woods, I've never met him myself.
22:34
Speaker 2: I'd love to have him on the show one day,
22:37
Speaker 2: but all I see white often in that I presumed
22:41
Speaker 2: that the Facebook were talking about the one with about
22:43
Speaker 2: ten thousand that hirschbrungs. I think he's family and friends
22:46
Speaker 2: or something along those lines. I see so many people
22:50
Speaker 2: talking about doctor Wood and saying how amazing he is
22:53
Speaker 2: and he he saved my life on this, he helped
22:55
Speaker 2: me with that, and just how incredible he years and
23:00
Speaker 2: for people outside in the US might not necessarily have
23:04
Speaker 2: come acrossing before, but from what I've seen, he is
23:08
Speaker 2: definitely one of.
23:08
Speaker 3: The best in the world.
23:11
Speaker 4: Yeah, definitely.
23:12
Speaker 3: And I think that you know the team there, the
23:17
Speaker 3: team that he has at Nationwide Children's Hospital, they have
23:21
Speaker 3: been such a blessing at the entire team. I feel supported.
23:24
Speaker 3: I'm in Texas, they're in Ohio. I feel more supported
23:28
Speaker 3: by them than I did with our current with our
23:31
Speaker 3: local five minute down the street doctors. So that just
23:35
Speaker 3: kind of tells you like the level of care and
23:38
Speaker 3: the level of support that they give their patients is incredible.
23:43
Speaker 2: Absolutely, that's absolutely fantastic. And talking of support as well,
23:50
Speaker 2: one of the things I know you wanted to bring
23:51
Speaker 2: up was the Ronald bcdonald House Charities. I know you
23:56
Speaker 2: just people be listening to this maybe a few weeks
23:59
Speaker 2: on from when we're recording, but I think it was
24:02
Speaker 2: yesterday or the day before you today, a really good
24:05
Speaker 2: real on Ronald McDonald House charities and how much they've
24:10
Speaker 2: sort of supported you and your family. Would you like
24:13
Speaker 2: to talk a little bit about then.
24:15
Speaker 4: Yes, absolutely so.
24:18
Speaker 3: I it's hard to even then express like in words
24:22
Speaker 3: how much gratitude I have for Ronald McDonald House and
24:26
Speaker 3: how it's so much more.
24:29
Speaker 4: On the outside looking in, you might think.
24:30
Speaker 3: Like, Okay, yeah, they have like a bed you can
24:33
Speaker 3: sleep in whatever, it's not that big of a deal,
24:36
Speaker 3: but it really is everything for you when you have
24:40
Speaker 3: a child who's sick, or a child who's in the hospital,
24:44
Speaker 3: there's so much uncertainty going on. It is that one
24:48
Speaker 3: ray of hope and sunshine and support and love and
24:52
Speaker 3: care that you get from the Royal McDonald House. It's
24:58
Speaker 3: so much more than just a place to sleep. It
25:00
Speaker 3: is that and that's a help that's so helpful for
25:04
Speaker 3: so many families, especially when you're traveling. Especially you know
25:08
Speaker 3: when you have a kiddo that's their long term.
25:10
Speaker 4: But it's more than that. It's it's a community.
25:14
Speaker 3: It's families that have that safe space where they can
25:19
Speaker 3: stay in between treatments. It's a place for your kid,
25:24
Speaker 3: you know, to really just be able to be a
25:28
Speaker 3: kid and have fun and maybe these really difficult times
25:32
Speaker 3: in their life. It could be the most difficult time
25:34
Speaker 3: in this child's life.
25:36
Speaker 4: And they're able to stay in a fun place.
25:38
Speaker 3: I mean, the you know, the one in Ohio was
25:42
Speaker 3: so much fun for us. It was like we decided,
25:46
Speaker 3: we decided before we went that this is going to
25:49
Speaker 3: be an adventure. We're very scared, they have a lot
25:52
Speaker 3: of fear, but you know what, we are going to
25:54
Speaker 3: flip that and this is going to be the adventure
25:57
Speaker 3: we had never taken just Charlie, me and my husband
26:00
Speaker 3: and you know, on a trip. So we're like, we're
26:02
Speaker 3: gonna have fun. Yes, we're going to do some things
26:05
Speaker 3: that aren't so fun, but we're hopeful that we're going
26:08
Speaker 3: to find answers that's going to help her.
26:11
Speaker 4: So that was all positive.
26:12
Speaker 3: It was we're gonna have an adventure, we're gonna find
26:14
Speaker 3: the fun, We're to find the joy. And the Ronald
26:17
Speaker 3: McDonald House made that possible in.
26:19
Speaker 4: So many ways because they have so many fun things
26:22
Speaker 4: her kids.
26:23
Speaker 3: They had a princess room, they have a library, they
26:26
Speaker 3: have a music room. They have so much to distract
26:30
Speaker 3: in the best way possible for these children who are
26:33
Speaker 3: not having such a fun time, you know, And it
26:37
Speaker 3: was so much fun. She called it the Donald Hotel,
26:40
Speaker 3: and she still asked me, like, are we gonna go
26:42
Speaker 3: back to the Donald Hotel?
26:44
Speaker 4: Like it was so fun?
26:45
Speaker 3: And I loved that experience. She got something fun out
26:49
Speaker 3: of it, she got a positive, you know, a takeaway
26:52
Speaker 3: and a memory that she's probably going to have for
26:53
Speaker 3: the rest of her life.
26:55
Speaker 4: And it's a memory that's good.
26:57
Speaker 3: You know.
26:57
Speaker 4: It's not all negative.
27:00
Speaker 2: Absolutely, no. I love the thing that you you turn
27:02
Speaker 2: it into a positive because it would be it would
27:05
Speaker 2: be so easy, you know, to go, oh, I'm going
27:08
Speaker 2: for a surgery, we go to check out, we're going
27:10
Speaker 2: to you know, a stay in a hospital, you know,
27:13
Speaker 2: and when people say stay in a hospital, automatically they think, oh,
27:17
Speaker 2: something wrong, et cetera, et cetera. And I love the
27:20
Speaker 2: fact that you went, this is an adventure, this is
27:22
Speaker 2: a positive experience, and it's obviously had a great effect
27:27
Speaker 2: on your daughter because she now has as a much
27:31
Speaker 2: as a as a bright outlook. But the Donald House
27:35
Speaker 2: that she calls it, yes.
27:37
Speaker 3: Oh absolutely, And I think that that was key because
27:40
Speaker 3: leading up to it. I felt a lot of anxiety,
27:43
Speaker 3: you know, I felt a lot of worry, and I
27:48
Speaker 3: had to shift into something better to make it a
27:52
Speaker 3: better experience for her and for us, and so we
27:56
Speaker 3: did that the best we could.
27:57
Speaker 4: We had some rough nights there, but it.
28:00
Speaker 3: Was still something that you know, we wanted to make
28:04
Speaker 3: as fun as possible, and it really helped us stay
28:07
Speaker 3: there and have that experience for her. And then something
28:11
Speaker 3: else that I didn't realize, you know, I would find
28:16
Speaker 3: there is the like the other community support from other families,
28:21
Speaker 3: and so we actually met a family that has a
28:26
Speaker 3: child with Harshprings disease who was seeing doctor Wood as well,
28:30
Speaker 3: and so that was just incredible in itself. We just
28:35
Speaker 3: spent time connecting and sharing our stories, and I mean,
28:39
Speaker 3: it gives me chills to just talk about it because
28:42
Speaker 3: I'm still connected with her.
28:44
Speaker 4: You know, we still keep up, we still keep in.
28:46
Speaker 3: Touch, and you know, I'm rooting for her kids, She's
28:51
Speaker 3: rooting for mine. You know, I have another support system
28:55
Speaker 3: that I can lean on, and it was just incredible
28:58
Speaker 3: to like have that in person interaction with someone that
29:02
Speaker 3: knows what I'm talking about and gets it from a
29:04
Speaker 3: parent perspective as well, yeah, I think.
29:07
Speaker 2: You're absolutely right with that. And I know talking on
29:11
Speaker 2: zoom and speaking to as many people I have as
29:14
Speaker 2: I have about persh Brongs is fantastic and I love it.
29:19
Speaker 2: But it must be something have a slightly different feeling
29:22
Speaker 2: when you meet somebody you know, actually in person, face
29:27
Speaker 2: to face type thing as opposed to sort of over
29:30
Speaker 2: zoom or anything like that.
29:33
Speaker 4: Oh for sure, absolutely.
29:36
Speaker 2: But it's no, that's fantastic. And thank you so much
29:39
Speaker 2: for the kind stuff on Ronald with doll House Charities,
29:42
Speaker 2: because as I've mentioned to a couple of people, I
29:45
Speaker 2: do have somebody from the charity coming on in a
29:49
Speaker 2: couple of weeks time to come and talk about everything
29:52
Speaker 2: that they do and all the fantastic work that they
29:56
Speaker 2: do all across the world. Because I have so many
30:00
Speaker 2: people who've come on this show and said, I really
30:02
Speaker 2: want to talk about the charity. I really want to
30:04
Speaker 2: say about the great work they do, And I thought, well,
30:07
Speaker 2: instead of me sitting here having had experience at roalbods
30:11
Speaker 2: Old Charities, I thought, I'll get someone who knows what
30:13
Speaker 2: they're talking about. So I thought that, so I think
30:17
Speaker 2: that that will be coming up. I've got Jazz from
30:22
Speaker 2: Ronald the Dold House UK coming up in a couple
30:24
Speaker 2: of week time, so hopefully that'll be a really good
30:28
Speaker 2: one to listen to as well, because it's touched it
30:31
Speaker 2: has touched so many many people. I think they were
30:34
Speaker 2: saying something in the region just in the UK of
30:37
Speaker 2: one hundred thousand families, which is not just one hundred
30:41
Speaker 2: thousand people, but a one hundred thousand families, so times
30:43
Speaker 2: that like what three or four that's an enormous amount
30:47
Speaker 2: of people that they help.
30:51
Speaker 3: Absolutely, the impact is so great and it's incredible the
30:56
Speaker 3: work that they're doing. So for sure, I'm happy. I'm
30:59
Speaker 3: so excited to listen to that episode as well. And
31:02
Speaker 3: I think the other thing that touched me is that
31:06
Speaker 3: there's nonprofit organizations that help support Ronald McDonald house. So
31:11
Speaker 3: you know, we got this huge goodie bag of all
31:14
Speaker 3: sorts of things that were donated from other nonprofit charities
31:19
Speaker 3: and it really inspired me. You know, it's like, how
31:23
Speaker 3: what can I do to serve you know, this this group,
31:27
Speaker 3: What can I do to help these families in that
31:31
Speaker 3: hard time? Because it may seem like just like a
31:33
Speaker 3: little thing, but it makes a big impact when you're
31:37
Speaker 3: going through something so hard.
31:39
Speaker 2: Yeah, absolutely, and speaking all you help me you are
31:45
Speaker 2: also you have joyed me in becoming an ambassador for
31:50
Speaker 2: Reach HD in America slash Canada. Obviously they've sort of
31:55
Speaker 2: put out a release a few weeks months ago. What
32:00
Speaker 2: made you think, obviously, apart from all of the experiences
32:03
Speaker 2: you've talked about today, what made you think, actually, I
32:06
Speaker 2: really want to be to be an ambassador.
32:11
Speaker 4: Yeah. I think for me, it's helping other it's helping.
32:15
Speaker 3: Other parents find resources for their children. It's helping them
32:20
Speaker 3: find a community, find people that just get it, you know.
32:25
Speaker 3: And I remember, you know, that feeling that I had
32:29
Speaker 3: whenever I felt alone in this, and I want to
32:32
Speaker 3: help others to find, you know, that sense of support
32:36
Speaker 3: that they need when they're going through a similar journey.
32:41
Speaker 2: Fantastic that I'm very much similar and having had. I
32:45
Speaker 2: think there's now five ambassadors as in Timent Recording, and
32:50
Speaker 2: you are the I think third person I've had from
32:53
Speaker 2: them for the Reach Ambassadors.
32:55
Speaker 3: Yeah.
32:55
Speaker 2: I had Steph on as well a couple of times.
32:59
Speaker 2: So yes, I'm going through the Reach Ambassadors on the podcast.
33:04
Speaker 2: So a constant stream of podcast guests, which is always
33:07
Speaker 2: very handy for these.
33:08
Speaker 3: Yeah, absolutely, and I think it's just helpful to spread,
33:12
Speaker 3: you know, the awareness of it and that there you know,
33:16
Speaker 3: that there is hope and there is reasons, you know,
33:19
Speaker 3: to find the joy and to find the good in
33:22
Speaker 3: all of it.
33:23
Speaker 2: Absolutely. I know we mentioned at the very beginning that
33:28
Speaker 2: you are an entrepreneur and that you have your own
33:32
Speaker 2: podcast as well. It's nothing to do with persprugs, But
33:37
Speaker 2: would you like to explain a little bit about sort
33:40
Speaker 2: of the history of that podcast and why you started
33:43
Speaker 2: it and what it's about.
33:46
Speaker 4: I guess, yeah, for sure.
33:49
Speaker 3: So I started it because I wanted to help support
33:55
Speaker 3: women on their journey of becoming an entrepreneur, and so
34:01
Speaker 3: it highlights stories of female entrepreneurs, you know, and how
34:05
Speaker 3: they started out, and it's really about, you know, how
34:10
Speaker 3: to not allow the fears that you have inside of
34:14
Speaker 3: you to hold you back in your life with whatever
34:17
Speaker 3: you want to accomplish. And it's really interesting because you know,
34:21
Speaker 3: I started it. It's I guess two years old now,
34:24
Speaker 3: and I started it as an example of bravery and hey,
34:30
Speaker 3: I'm going to start this thing. I'm scared, but I'm
34:33
Speaker 3: going to show to you that it's okay to do
34:35
Speaker 3: something while you're scared and just take that next step.
34:39
Speaker 3: It's really about empowering people to take the step, take
34:42
Speaker 3: the messy action. It doesn't have to be perfect, and
34:45
Speaker 3: guess what, it can't be perfect anyways, So like let's
34:48
Speaker 3: just go.
34:49
Speaker 4: You know, you'll learn as you go.
34:52
Speaker 3: And something will maybecome of it that you didn't even expect.
34:56
Speaker 3: And so it's really been a lot of fun, and
34:59
Speaker 3: it's been a way to connect with other uh with
35:01
Speaker 3: other people who are you know, out there doing something
35:05
Speaker 3: that scares them, but they're doing it anyways, and they're
35:08
Speaker 3: showing others by example to just go forward, you know,
35:12
Speaker 3: be that person that you need to be in the world,
35:15
Speaker 3: be that leader for someone else. And so that's been
35:18
Speaker 3: a lot of fun. And I'm just a natural community builder,
35:21
Speaker 3: so I do have a community of female entrepreneurs. You know,
35:25
Speaker 3: it's networking, it's support, it's mentorship, that sort of thing.
35:30
Speaker 3: So it's all online right now, and then it's also
35:33
Speaker 3: locally here in uh Forward, Texas. Fantastic.
35:37
Speaker 2: That sounds absolutely brilliant. And just to sort of tie
35:41
Speaker 2: it up and bring it back to sort of HD
35:43
Speaker 2: for a moment, a lot of the things you said
35:46
Speaker 2: there about sort of empowerment and embracing challenges and trying
35:52
Speaker 2: to overcome them and sort of having that sort of
35:58
Speaker 2: fear that a lot of people have when they especially
36:00
Speaker 2: when they're facing operations and things like that. Did you
36:04
Speaker 2: take a lot of that, that podcast and your business
36:08
Speaker 2: that you built and sort of have to then put
36:11
Speaker 2: it into just some use it in your own journey
36:14
Speaker 2: and put it into practice instead of sort of saying, right,
36:18
Speaker 2: I'm going to do this in my business, I've now
36:20
Speaker 2: got to apply it to my personal lives as well.
36:24
Speaker 4: Oh yeah, everything everything applied.
36:26
Speaker 3: And it's funny because it's like, be careful what you
36:29
Speaker 3: wish for, right, because if you're gonna wish for showing
36:34
Speaker 3: bravery and being an example of bravery, well you're going
36:37
Speaker 3: to be kind of handed a lot of things that
36:39
Speaker 3: you have to show up for and be brave for.
36:41
Speaker 3: And it's very interesting to reflect on just that because
36:45
Speaker 3: I had no idea when I started, you know, the
36:47
Speaker 3: podcast and this mission of helping others be brave, just
36:51
Speaker 3: how brave I'd have to be in these moments and
36:56
Speaker 3: in ways.
36:57
Speaker 4: That I had not expected at all.
36:59
Speaker 3: So it's been very very interesting. Yeah.
37:02
Speaker 2: You then you then end up becoming the sort of
37:04
Speaker 2: living embodiment of having to be brave as well. But
37:09
Speaker 2: I think that also must help in terms of the
37:13
Speaker 2: podcasts and the business as well, because you you can
37:16
Speaker 2: then instead of you know, telling and whatnot, you can
37:20
Speaker 2: then say, actually, this is what I've done, you know,
37:24
Speaker 2: and to face these enormous challenges as as a mother
37:29
Speaker 2: and then have to overcome them myself. So I guess
37:33
Speaker 2: that sort of brings more and more legitimacy, I guess
37:36
Speaker 2: in the way.
37:37
Speaker 4: Yeah.
37:38
Speaker 3: Absolutely, And it's like it just builds, it builds that
37:41
Speaker 3: courage muscle even more to a level that I didn't
37:45
Speaker 3: have before.
37:46
Speaker 1: You know.
37:48
Speaker 2: No, I think that's fantastic, and it's it's really interesting
37:51
Speaker 2: how the two have sort of dovetailed together in a way. Yeah,
37:55
Speaker 2: And just as we sort of wind towards the end
38:00
Speaker 2: in terms all of suits and talked about everything that
38:03
Speaker 2: Charlie Go has been through, what would she like see
38:07
Speaker 2: for her in this s future?
38:11
Speaker 3: Yeah, I would love to see, you know, hershpruings disease
38:17
Speaker 3: not hold her back in any way, you know. And
38:21
Speaker 3: I think that the way that we have handled the
38:23
Speaker 3: challenges that we've had and the things that we've been dealt.
38:27
Speaker 3: I think are encouraging of that. You know, we're going
38:31
Speaker 3: to not dwell on all the challenges and all of
38:36
Speaker 3: the negative. We're going to flip it and really use
38:39
Speaker 3: it to build up our strength and to build up
38:43
Speaker 3: that resiliency. And she's also teaching us so much because
38:47
Speaker 3: kids are so resilient and what I am worried about
38:50
Speaker 3: and think that's going to be, you know, like an
38:52
Speaker 3: impact of her. She's proving me wrong like no big
38:55
Speaker 3: deal whatever, Like it's not even a thing. And so
38:59
Speaker 3: I think that I want her to continue that. You
39:01
Speaker 3: know that really she's got a wild spirit. I want
39:05
Speaker 3: her to continue her wild spirit and be full of
39:09
Speaker 3: life and joy and always you know, find the joy
39:13
Speaker 3: even in the hard stuff.
39:14
Speaker 2: Yeah. No, that's absolutely fantastic and to sort of continue
39:18
Speaker 2: that positivity I guess. But now, thank you ever so
39:23
Speaker 2: much for sharing your story in Charlie Grace's story, and
39:27
Speaker 2: I know that you'll keep us up to date with
39:30
Speaker 2: all of your reels on Facebook and Instagram. Where can
39:34
Speaker 2: people find those who find you?
39:37
Speaker 3: Yeah, well, thank you so much. I'm so grateful for
39:40
Speaker 3: this podcast in the community, and I'm grateful to be
39:43
Speaker 3: here with you so on Instagram and Facebook, It's Robin Underscore,
39:48
Speaker 3: Lynn and L It's r O B y N Underscore
39:52
Speaker 3: L y n n E. And then my website is
39:55
Speaker 3: Robin L. Taylor dot com, so that's where you.
39:58
Speaker 4: Can find me.
40:00
Speaker 2: Fantastic. Thank you so much, And I know it kind
40:02
Speaker 2: of goes without saying, but I'll say it anyway. I
40:05
Speaker 2: wish all of you the very best of luck with
40:09
Speaker 2: the future, and thank you so much for sharing your
40:13
Speaker 2: story and coming on the show. Thank you, Thank you
40:19
Speaker 2: for listening to the podcast.
40:21
Speaker 1: Find us on Instagram, Tom's Underscore Hirshbrung's Underscore podcast. Listen
40:26
Speaker 1: to previous episodes on Spotify by searching Tom's Hirshbrung's Podcast