July 20, 2022 • 26 mins
Diabetes is something that has hit the African-American community hard but even harder with our
toddlers. We are finding that more and more toddlers are being diagnosed with Type 1 Diabetes,
faster than we can find additional diabetic knowledge and supplies to support them.
In this week’s episode, I will be sharing my thoughts as a mom of a 3-year-old toddler who was
diagnosed with Type 1 Diabetes. We will be discussing my struggles of being a mom to a Type 1
Toddler. What I go through as struggles on a daily and weekly basis, as well as on a long-time
basis….will all be shared in this two-part series.
To learn more about Ce’Onna Meilani Johnson, you can follow her here
https://www.instagram.com/ceonnameilani/?hl=en
https://www.youtube.com/c/CeOnnaMeilani
If you like to learn more about Dr. Dionna, you can follow her here
https://drdionna.com
https://www.instagram.com/drdionnalifecoach
https://www.youtube.com/drdionnalifecoach
You can also purchase her two bestselling books titled
Be Your Own Life Coach: How to Life Coach Yourself Into What You Want here
https://drdionna.com/product/be-your-own-life-coach/
Where Did My Half Brother Come From here https://drdionna.com/product/be-your-own-life-
coach/
toddlers. We are finding that more and more toddlers are being diagnosed with Type 1 Diabetes,
faster than we can find additional diabetic knowledge and supplies to support them.
In this week’s episode, I will be sharing my thoughts as a mom of a 3-year-old toddler who was
diagnosed with Type 1 Diabetes. We will be discussing my struggles of being a mom to a Type 1
Toddler. What I go through as struggles on a daily and weekly basis, as well as on a long-time
basis….will all be shared in this two-part series.
To learn more about Ce’Onna Meilani Johnson, you can follow her here
https://www.instagram.com/ceonnameilani/?hl=en
https://www.youtube.com/c/CeOnnaMeilani
If you like to learn more about Dr. Dionna, you can follow her here
https://drdionna.com
https://www.instagram.com/drdionnalifecoach
https://www.youtube.com/drdionnalifecoach
You can also purchase her two bestselling books titled
Be Your Own Life Coach: How to Life Coach Yourself Into What You Want here
https://drdionna.com/product/be-your-own-life-coach/
Where Did My Half Brother Come From here https://drdionna.com/product/be-your-own-life-
coach/
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
This is the FCB Radio Network coomof the Best Personalities and we're real titlets
online at FCB radio dot com FCP. Hello, guys, it is your
(00:23):
host, doctor Deanna Handcared Johnson andmeet our on Talking Tallets with Type one
Diabetes Tonight. I am away onmy baby moon and I just wanted to
talk to you guys, get deepand personal with some things that's been on
my mind. I wanted to justshare some of the struggles I go through
as a diabet mama and just wantedto, like, you know, maybe
get some feedback from some people,some comments and things to help me know
(00:46):
that I'm not going through this aloneas well. I know it's a lot
of you guys out there who areafraid to speak up. A lot of
guys who are out there are parentswho are out there who just don't know
where to start. This is whereyou start Talking Tallets with Type one Diabetes
podcast. Let's get into this podcast. Okay, guys, we are back
(01:11):
with part two of this episode,and we're talking about the struggles of a
diabetic mama and things that I gothrough as a mom of a Type one
taller that has just been really onmy mind and my heart that I wanted
to share with you guys tonight,and let's get back into this episode.
And so basically, what I thinkI struggle with also is, you know,
(01:36):
deciding to keep her home when there'san emergency. Let's say, for
example, last fourth of July,she was rushed to the emergency room,
but prior to being rushed to theemergency room, I kept her home for
two days to determine if I couldwatch her numbers and her keytones and everything
from home. After two days ofhaving the same issue, we were concerned
(01:57):
that meaning me and the doctor's myhusband, we were concerned that she could
have went in te keto acidosis.And she's never been been te keto asidosis,
thank you Jesus, even when shewalked into the hospital on diagnosis day
at five hundred sugar. So I'mso thankful. But we had to take
her in and so I had tobe the judge, and the doctors was
(02:17):
like, look, we trust you. You've done everything that you could.
You've read the book, You've toldme everything, you went down the timeline.
Because when things get that serious,I go back and I grabbed my
little book that they gave me fromthe day out of diagnosed, and I
go in, I study everything thatshe needs to know and that I need
to know and go from there.And I have things around my house that
(02:38):
are in like plastic hangis for emergencies, for calling the doctors, the hospital,
food and take stuff like that asif somebody was watching her, but
it's not really nobody but me andmy husband and my son, and we're
all accustomed to kind of what sheneeds or what happens or if this goes
up or go down, like whatto do. So basically I had to
(03:01):
decide if I wanted to rush herto the hospital to determine the share keto
aster doses, because I could notdetermine that at home, or I had
to keep her home and just hopeand pray she got better. What happened
is that she ate something sour orsomething and it didn't agree with her stomach,
and so she started throwing up.Once your kid is sick, no
matter if it's a cold, throwingup, whatever it is, they're not
(03:24):
gonna have regular treatment like a regularkid that was sick. You have to
take extra precautions, extra insulin,extra measures, change everything out while you're
still giving them medicine that may nottake effect right away. And that was
the case. So after two days, it was fourth of July night and
(03:45):
I had decided at about eleven o'clockat night, maybe twelve, that I
was going to take her into thehospital because I had already been done with
this for a couple of days andshe had gotten better. I would give
her instut on her legs. Atthis point in time, you almost move
away from everything, the phones andeverything else that you have hooked up to
her, and you start giving herinsul on their legs to bring things down
right away. That's what I did, actually, So if this is for
(04:08):
your kid, you're just gonna haveto do different things. And this is
why it's important to be skilled onwhat you do need to know about your
baby in any circumstances, so thatyou can react fast or have stuff around
handy that you can review when youneed it quick. Because that was the
issue for me, And when Igot home day one, I had this
(04:29):
everywhere. Even now at the daycare. I'm like, this is the sheet
that you need to keep out,this is the stuff you need to put
up. And that was just that. But what I'm saying is that I
decided to rush her to the hospitalbecause the unknowing of whether or not she
had keyto asidosis was driving me crazyand there was no way for me to
check that at home. After herkeytones would come down, they would go
back up, come down, goback up. They just wasn't like where
(04:50):
they need to be where it wasnone. And if I had the keytone
container, I can show you guys, or tell you guys exactly what it
is. Maybe that would be ina future part cast, but it's the
normal range, which is the firststep of knowing if you have keytones in
your urine. And hers didn't reachthat quite but it kept coming close enough
(05:11):
to it and then going back up. So long story short, I took
her in and when I got there, they made me change everything again,
and we saw that the insulent wascoming down from the needs and the leg
We saw that her levels were comingdown from the insulin and her legs,
but not so much from her pump. So we realized the pump was the
issue. Where we thought again wewere doing something right, and we had
(05:34):
changed stuff out again and moving toofast. Her stuff was not inside her
area like it should have been.It was bent, so she never got
insulent. That could have saved herfrom going to the hospital, could have
brought her numbers down. It justwas a whole thing and I'm just so
thankful that she definitely did not haveketo acidosis. But those are struggles you
(05:57):
have to decide are you scared enoughto stay at home and watched them from
going like watching the Keytones versus knowingif they're going in. T Keto,
I said, thoses after so long, And what she told me is that
if she had went in. TeKeto, I said, thoses, it
could start to mess with her brainfunction. That was it for me.
I was telling my husband, getwhat you need to get. Sorry about
the ruining your fourth of July,but we got to take my baby to
the Austal and that's what we did. We drove an hour out to children
(06:18):
and we stayed there and we werethere almost twenty four hours, I believe,
and they wouldn't let us go andtell the numbers came down. And
that's one thing. When you getto the hospital, you check in.
You got to be ready to checkin because they're not trying to let you
go home, and they shouldn't forgood reasons right, but it was what
it was, and I was sothankful to have the help. And that's
(06:40):
the day I met doctor Raymond andI am so thankful to have her as
my indore canologist who is the chiefof indore Canlogists at Children's at Last.
And it's been a blessing since then. So we're like family. Now,
let me see what else. SoI kind of jotted down some things doing
a break up, other things Iwant to share with you guys, but
(07:00):
asking people for help to help youwith your baby, even when you go
on vacations with family members, theydon't really know what you go through.
They hear and see that on Google, duo, on FaceTime or at a
distance, but they do not havea clue and they think that they understand
it. And the men that youthink you explain it to them. Okay,
but she needs insulin. If you'regonna feed her that they give her
insulin next meal. They forgot tenminutes later, she wants something to drink.
(07:25):
We know that she needs insulin foreverything. They'll just go ahead and
give her some chips drink. Howdo whatever it is that she wants without
realizing this baby can't have that you'regonna hurt her then to help her.
Okay, So you gotta understand theprocess. And you can't really fault these
people because some of them don't havekids. Some of them with the grandparents,
they now used to people being around. They say they understand, but
(07:47):
they don't. So when we areaway and out of town, it's hard
like to even go and have adrink, or go and do something with
somebody else or another couple, orlet the grandparents watch Siana because you're afraid
they're not gonna do what you do. Or if you leave them overnight and
you go off to the club withyour man and do whatever, they're not
(08:07):
gonna wake up like you and giveher what she needs. They're gonna see
her phone, give her some insolentmaybe or maybe not. I mean,
these people aren't used to doing whatyou're doing, so it's hard to fault
them. But it's also hard toask them for help. Guys, it's
just really it's a hard thing.Another thing I find is just finding qualified
(08:28):
family friends or even providers that areoutside of the home to help you.
Period. You're just in this kindof alone with the people you live with
in the house because nobody understands theprocess. Besides the hospital. You know,
they understand what you're going through.They've been near, they've done that.
It is what it is. Butyou know, you just feel again
(08:52):
like you just can't depend on otherpeople, and you become secluded because your
kid's life is what's twenty four sevenof your concern, and so people may
look at you and feel some typeof way. But you know what I
say to that is it is whatit is. My daughter needs me more
than you need me, and herlife is dependent upon what I do,
(09:13):
and I have no choice but todedicate all that I have to her.
If that makes sense to you guys, that's just the mindset that I'm in
because I can't deal with the outsidenegativity. I can't deal with trying to
help people understand that I'm only goingto be with us for four days on
a trimp or on a vacation.I just do what I gotta do and
hope they catch you on or wantto support in some kind of way.
(09:35):
And so as a mama or adaddy or whoever that's taking care of this
type one toddler, know that youhave to do what you have to do
and if people are not on board, it is what it is. It's
so much to explain, like wehave gotten diagnosed at one point, and
then now we're months later and we'restill learning, so we're so far in
it. It's so far to take. It's so hard to take people back
(09:56):
to where we have been from dayone. All they says, Oh,
I get it, I understand.That's too much. That's hard, that's
this is. It's nothing we cando. It's not something that you can
just fit. It is what itis. And you're in this until your
baby's old enough to deal with itand have those things on their own.
That makes sense. A few morethings, just being satisfied, you know,
(10:20):
I think as a mom, I'mnever satisfied with where her numbers are.
I'm never satisfied with what she eats. I'm never satisfied with seeing her
go through pain. If I haveto tell you, guys, the biggest
struggle I go through is watching mybaby get these needles every week in her
body. And we're not talking aboutthe insulin in her legs like she used
(10:41):
to or the pricks in her fingerevery two hours. The insulin the leg
is like eighteen ten to sixteen aday depending on how much she ate,
and she was the one that atea lot, so you know, I
may give her insulant for this,and then I got to turn around and
give insulinent for that. So thatwent on all day. But just to
see her when she's crying with herdeck comb, to see her when she's
crying with her tandem pump sight stuffbeing put on. You know, I
(11:05):
am so in pain when I seeher, and you think it's going to
get better. And I gotta tellyou when she first started and three guys,
she was screaming so loud that Ithought the copts was going to come
and rest us. But now she'sso much better that it's still painful.
Like I was asking my husband tonight, like while I'm away, you know,
how did it go? And hesaid, what she cried, and
(11:26):
then yesterday the desk com had bledmore, so that made her cry.
So you know, these things thatwe deal with as parents that nobody really
understands and get. It is painful. It's so painful, and I hurt
for my baby and I sometimes justwant to take it away, you know,
And it's not something you can reallydo. You know, my daughter
asked me yesterday, Mom, ifI take away my dex calm and my
(11:48):
tandem pump, does this mean Idon't have diabetes anymore? Guys, my
heart broke so much to hear hersay that, To hear her ask me
that for so long guy made herthink that I could relate in a way
like I. She was like,Mom, when you're diabetic and when you
have this, and you know whenyou was dibetic, did you have this?
(12:09):
I just agreed I couldn't. Thatdidn't have words for her for a
long time because she knew that Ihad lost my dad to diabetes, and
those concerns follow over into my babylosing her life. And I know my
dad was an adult and it wasa different circumstances, but you can't help
but to think in that way.But I heard so bad for the questions
(12:31):
that they ask. Guys, itis so hard because you want to give
them comfort that we know what they'regoing through, we can't relate. But
in actuality, if we're not diabetictoo, we can't. We can't.
We see them going through pain andstuff and we just cannot relate. And
so that's how a hard situation todeal with and I struggle with that a
lot. With her questions and she'sso sweet and she's asking me things and
(12:54):
I'm like, yes, baby,and no, baby, and you know,
and I told her, you know, no, the stuff you still
need it. It's gonna save yourlife, you know, like you have
to have it. And I said, if you take that away, you
take the pump away, then Ihave to get insulin in your legs,
you take the deck come away,then I have to prick your fingers.
So she remembers those days. Andso that was just what it is.
(13:16):
Let me see, you know,our attempt to stay engaged in the research,
the knowledge, what's happening, thesocial media, the new technology available.
It's also consuming, time consuming anda full time job because you want
to stay on the up and upso that you know what to have ready
(13:37):
or what's available for your baby tomake their life easier. I struggle with
that, guys, I really really, really really struggle with that. And
I have the hardest time trying tofigure out where's my happy medium with that
stuff. It's their happy medium.Can I have one? I really don't
know. But it is a processthat I have to continue with so that
(13:58):
I am aware and I also herefor you guys as an advocate speaking up.
I have the new product called thePocket Underwear and that is the first
underwear to house an insulin pump thatyou guys can find at donate TPUC dot
com or the Pocket Underwear Company dotcom and you can pre order and donate
(14:18):
to the calls. But I haveto stay on top of all of this
stuff so that I'm here to helpother people, just like I would like
people to help me when I don'tknow. So we'll see a few more
things, guys. Like one ofmy issues is with her phone. All
(14:41):
week, it's been stay saying actuallyfor the past month, it's been saying
stand out of range. She's notreally out of range, and her phone's
right there. Things like that Dexcomgoing out before the ten days of insulin
you thought was fresh, it's notfresh. She goes to gymnastics, her
(15:01):
pump site comes off because you know, she was being a regular kid or
playing at the park with a friendand she accidentally pulled it off. These
are all struggles of things that Igo through and she goes through. I'm
not gonna even just say the strugglesthat I go through, and I may
do a podcast where I ask Sianawhat is the struggles she go through?
What she feels are the hardest things, because I think we captured a lot
of that episode one, but notwhere she could think it through some more.
(15:24):
So maybe I'll wait till she's eithera little bit older or just kind
of see if we talk about itone day what happens. Because she's always
asking me questions and stuff, buther phone is definitely not out of range,
So why is it saying that,like you know, it's just like
those things like okay, you can'tfigure it out, so then you got
to prick your finger or wait tillit comes connects together to work. One
(15:48):
of the issues I really hate isthe dex com taking two hours to upload
before her numbers come in. Sometimeswe're doing this late at night, so
that the next seven or ten daysit's at night again and not early first
thing in the morning when we gotso much going on. Last night was
one of those nights where I wasup till one. We put it on
(16:08):
her at eleven, and I wasup till one to see if it worked
or not, And as soon asit kicked in, it said high And
this is something new. It happenedyesterday and it happened today. It says
high. Normally when it's high,guys, it is past the four hundred
(16:29):
level. That's what high means onthe deck cam. On the phone,
that means it just gotten to apoint where you can't read the numbers to
off the chart. Okay, justlike if she was too low, it
would be past forty when the numbersgo out. I believe under forty.
And so for her to have thedesk cone kick in and then it says
she was high, I immediately grabbeda pricker to check her finger and she
(16:52):
was at like three sixty nine fromsomething she ate which should have showed up
on her dext cam or on herphone. Why didn't it show up?
What is this is just a newchange that we need to update on the
phone. I gotta do my research. I gotta ask, I gotta ask
the endow. And this is whyI mean her talk all the time,
because I'm running through issues where Ihave to ask these questions all the time
to her or the diabetic team.So those are things that you struggle with.
(17:14):
You're going to struggle with. It'sjust not perfect setup, and it's
not a perfect system. I'm lookingforward to them bringing I think the G
seven because they said the warm uptime it's gonna be quicker. We need
that, guys, we need it. Anybody who is a parent and want
to be an innovator, some ofthese issues that are mentioning police, take
it upon yourself to fix the problem. Just like I created the pocket underwear
because that's what I felt my babyneeded at the time. Felt like everybody
(17:37):
wants to have the pocket underwear sothat they can deal with their diagnosis in
privacy and peace at their own discretion, you know, to share. And
so that was the reason behind creatingthe pocket underwear. But we can have
a whole podcast on that, andyou guys can check that out on the
website. More of my daughter's documentaryis on their two telling her story about
(17:59):
when she was diagnosed. So letme see, I wrote down where I
live. I live about a hoursome change from Children's LA and I can't
partake and a lot of the thingsthat they offer the Bombast the parents,
I can't partake in a lot ofthe things that they do for training people
that you find in your family outsideproviders and stuff because I live so far
(18:22):
i just can't depend on anyone inmy area that's willing to first go the
mile to be there for my baby, but also willing to take in as
much as I'm willing to take into learn, you know, And that's
again going back to find and qualifiedfamily friends and outside providers to help you
with your baby or help learn theprocess of what it takes to take care
(18:44):
and type one taller. It's justnot happening. So that's a struggle for
me. And I'm looking to liveclose to the LA sometimes soon so that
I could be in a part ofthe some of the support groups. Now
that she's older, we can goto the camps, we can be a
part of a lot of things thatshe wasn't that wasn't available for her when
she was a younger kid. Soyou know, we're making waves through this
(19:06):
and we're meeting more people and morefamilies and stuff that is helpful, but
again we don't live close to them. So the financial difficulties of relying on
the insurance to cover everything. I'mthankful I have the insurance and I'm in
a position to have insurance to coverbut sometimes when you're about to run out,
you got to rely on them toprovide more. For example, the
(19:29):
transmitter that goes into the dex comsensor. You only get one of those
every ninety days. I had asituation where her transmitter would not pick up
on her new phone, and thenshe had just got the new desk com.
It went on like that for solong that it scared me because I
was like, if this doesn't comeon eventually, I don't know what to
(19:49):
do. I don't have a backuponce. So I called the next day
and complained to the insurance coming likewhy is it there? Not too at
a time giving out and I thoughtthey was going to change the laws a
while back. What they said theywould give you more than one, but
they didn't, and I still onlyget one every ninety days. But eventually
I had to restart the phone overand over, restart the bluetooth, let
it pick up. The next calm. The transmitter was not picking up,
(20:12):
guys, And it took maybe twohours, but he eventually picked up,
and I just prayed, guys,I prayed for that to pick up.
I didn't know what else to do. So prayer is your answer when you
need to, okay, because sometimesyou're just not gonna know how it works,
just like praying that it doesn't hurther the next time, praying that
she doesn't cry, praying that thenumbing cream works. Guys, I put
(20:33):
tons of numbing cream on her.Some parents put like the sandwich and see
the clear glad stuff on her ontheir babies and let it sit for a
while to make sure it's really numb. I don't do that, but I
do let it sit for five minutes, and I put two different creams on
at the time, and it stillmakes her cry. So anybody else had
better solutions, please lease, pleaseshare with all of us, because we
(20:55):
definitely need to know what to do. Okay, we need to that is
important priority, so all babies cannotfeel as much pain during the process.
The last thing I'm probably gonna talkabout, guys, is you know,
I already talked about keytones versus ketoacidoses. But the hyper and the hypoglystenia
(21:15):
and the hyperglistenia, those are thethings that we have to monitor. Two
that is usually like a concern tome, just like the keytones and the
keto acidosis. It is something thatyou really have to be concerned about,
and you need to watch it withyour kids and just kind of stay in
the know. Ask questions you don'tknow anything that is just of alarming to
(21:37):
you. Remember that there's no questionthat's stupid or should not be answered.
You should always ask anything you feel. But I wanted to let you guys
know that with the hypo, andwe'll talk a little bit now, but
in the future we'll talk about itmore. The hypo glysinia is when you
go lower than seventy and if yougo too low, then it could be
(22:00):
things that cause us a confusion foryour baby, seizure, coma, or
death. Okay, And so youhave to be conscious of this and aware
of this. Now your doctor willtell you the best range to stay in,
but I think for our kiddos it'sseventy two one fifty. Anything above
the normal range of und fifty youwant to work on bringing down with insulina
(22:21):
for sure. Now, when yousay, hi, what's too high two
hundred, three hundred, four hundredhigher or above can be a serious issue
that could cause long term damage toyour baby's body. And that is could
be strokes or heart attacks or eyedisease and things like that. And I
(22:41):
always struggle with this because I feellike, Okay, has she been too
high too long, even though it'sbeen once a month, maybe twice a
month here, but after a longperiod of time two three years now,
has that affected her to where she'srisk for eye disease? Especially now that
(23:03):
she's wearing glasses. That's concerned tome. And it is because of me
wearing glasses, the doctor's the eyedoctor is saying it's because it runs in
the family where I'm the first towear glasses in my family. So my
dad didn't start win until he wasdiagnosed as diabetic in his older years.
So I don't know if to believethat. I'll believe that's she's been affected
with an eyesight because I do knowquite a few diabetics that do have glasses
(23:26):
that has been affected through the eyesightsince being diagnosed. So I go through
these struggles with concerns, guys,and I gotta tell you, it is
a lot, and I'm sorry I'mpacking so much in this into this episode,
but it is a struggle as aType one taller mama. But it
(23:48):
is a beautiful struggle because I knowthat my baby is still happy and healthy.
If you want to check her out, you can find her on Instagram
at Siana Milani at sea E nA N E I L l A n
I, and I'll put it inthe description as well. She is just
so vibrant, so happy, soeverything to where I just can't imagine anything
(24:14):
else, and I'll do all thatI can to see that smile on her
face. So that's what I meanby it's a struggle, but a beautiful
struggle it is. Of Course,I wouldn't want her to be the one
diagnos. Of course I would wantto be the one diagnos rather than her.
Of Course I would want to bedealing with the pain she's going through
instead of her. But it's nothingI can do besides support her, be
(24:37):
here for her, love on her, show her that she's doing the right
thing, let her know that thisis just all that she has to do
to continue to be healthy and happy, and that it's not as bad as
it seems easier for me to say, because I'm not the one taking the
needles every week every day, orthe pain and dealing with highs and lows
(24:59):
and your body signals and stuff likethat, which it's also going to be
hard. If your baby is youngerthan six, it's hard for them to
tell you what they're going through.Siana did not know for a long time
whether she was high or low,guys, and it's important to stay on
top of checking everything, getting yourpump when you're recommended to do so,
and just being well in tuned tothe diabetic community and what our babies need,
(25:23):
asking all the questions you have toeverybody, and just keeping yourself grounded
as a parent to make sure you'rein the right head space before you can
be there for your baby. Andthat's basically it, guys, that's going
to be a rap on this episode. I'm so glad you guys tuned in.
(25:45):
I'm so glad you're here, you'relistening. I need you, guys.
I know you need to hear fromme what I'm talking about. And
we are going to be one bigfamily and I look forward to hearing and
seeing you guys in the next episode. Thank you for tuning in too.
Talking talks with Type one diabetes eatsand I am your host, Doctor Deanna,
and I am out the FCB RadioNetwork, first class broadcasting worldwide
This is the FCB Radio Network coomof the Best Personalities and we're real titlets
online at FCB radio dot com FCP. Hello, guys, it is your
(00:23):
host, doctor Deanna Handcared Johnson andmeet our on Talking Tallets with Type one
Diabetes Tonight. I am away onmy baby moon and I just wanted to
talk to you guys, get deepand personal with some things that's been on
my mind. I wanted to justshare some of the struggles I go through
as a diabet mama and just wantedto, like, you know, maybe
get some feedback from some people,some comments and things to help me know
(00:46):
that I'm not going through this aloneas well. I know it's a lot
of you guys out there who areafraid to speak up. A lot of
guys who are out there are parentswho are out there who just don't know
where to start. This is whereyou start Talking Tallets with Type one Diabetes
podcast. Let's get into this podcast. Okay, guys, we are back
(01:11):
with part two of this episode,and we're talking about the struggles of a
diabetic mama and things that I gothrough as a mom of a Type one
taller that has just been really onmy mind and my heart that I wanted
to share with you guys tonight,and let's get back into this episode.
And so basically, what I thinkI struggle with also is, you know,
(01:36):
deciding to keep her home when there'san emergency. Let's say, for
example, last fourth of July,she was rushed to the emergency room,
but prior to being rushed to theemergency room, I kept her home for
two days to determine if I couldwatch her numbers and her keytones and everything
from home. After two days ofhaving the same issue, we were concerned
(01:57):
that meaning me and the doctor's myhusband, we were concerned that she could
have went in te keto acidosis.And she's never been been te keto asidosis,
thank you Jesus, even when shewalked into the hospital on diagnosis day
at five hundred sugar. So I'mso thankful. But we had to take
her in and so I had tobe the judge, and the doctors was
(02:17):
like, look, we trust you. You've done everything that you could.
You've read the book, You've toldme everything, you went down the timeline.
Because when things get that serious,I go back and I grabbed my
little book that they gave me fromthe day out of diagnosed, and I
go in, I study everything thatshe needs to know and that I need
to know and go from there.And I have things around my house that
(02:38):
are in like plastic hangis for emergencies, for calling the doctors, the hospital,
food and take stuff like that asif somebody was watching her, but
it's not really nobody but me andmy husband and my son, and we're
all accustomed to kind of what sheneeds or what happens or if this goes
up or go down, like whatto do. So basically I had to
(03:01):
decide if I wanted to rush herto the hospital to determine the share keto
aster doses, because I could notdetermine that at home, or I had
to keep her home and just hopeand pray she got better. What happened
is that she ate something sour orsomething and it didn't agree with her stomach,
and so she started throwing up.Once your kid is sick, no
matter if it's a cold, throwingup, whatever it is, they're not
(03:24):
gonna have regular treatment like a regularkid that was sick. You have to
take extra precautions, extra insulin,extra measures, change everything out while you're
still giving them medicine that may nottake effect right away. And that was
the case. So after two days, it was fourth of July night and
(03:45):
I had decided at about eleven o'clockat night, maybe twelve, that I
was going to take her into thehospital because I had already been done with
this for a couple of days andshe had gotten better. I would give
her instut on her legs. Atthis point in time, you almost move
away from everything, the phones andeverything else that you have hooked up to
her, and you start giving herinsul on their legs to bring things down
right away. That's what I did, actually, So if this is for
(04:08):
your kid, you're just gonna haveto do different things. And this is
why it's important to be skilled onwhat you do need to know about your
baby in any circumstances, so thatyou can react fast or have stuff around
handy that you can review when youneed it quick. Because that was the
issue for me, And when Igot home day one, I had this
(04:29):
everywhere. Even now at the daycare. I'm like, this is the sheet
that you need to keep out,this is the stuff you need to put
up. And that was just that. But what I'm saying is that I
decided to rush her to the hospitalbecause the unknowing of whether or not she
had keyto asidosis was driving me crazyand there was no way for me to
check that at home. After herkeytones would come down, they would go
back up, come down, goback up. They just wasn't like where
(04:50):
they need to be where it wasnone. And if I had the keytone
container, I can show you guys, or tell you guys exactly what it
is. Maybe that would be ina future part cast, but it's the
normal range, which is the firststep of knowing if you have keytones in
your urine. And hers didn't reachthat quite but it kept coming close enough
(05:11):
to it and then going back up. So long story short, I took
her in and when I got there, they made me change everything again,
and we saw that the insulent wascoming down from the needs and the leg
We saw that her levels were comingdown from the insulin and her legs,
but not so much from her pump. So we realized the pump was the
issue. Where we thought again wewere doing something right, and we had
(05:34):
changed stuff out again and moving toofast. Her stuff was not inside her
area like it should have been.It was bent, so she never got
insulent. That could have saved herfrom going to the hospital, could have
brought her numbers down. It justwas a whole thing and I'm just so
thankful that she definitely did not haveketo acidosis. But those are struggles you
(05:57):
have to decide are you scared enoughto stay at home and watched them from
going like watching the Keytones versus knowingif they're going in. T Keto,
I said, thoses after so long, And what she told me is that
if she had went in. TeKeto, I said, thoses, it
could start to mess with her brainfunction. That was it for me.
I was telling my husband, getwhat you need to get. Sorry about
the ruining your fourth of July,but we got to take my baby to
the Austal and that's what we did. We drove an hour out to children
(06:18):
and we stayed there and we werethere almost twenty four hours, I believe,
and they wouldn't let us go andtell the numbers came down. And
that's one thing. When you getto the hospital, you check in.
You got to be ready to checkin because they're not trying to let you
go home, and they shouldn't forgood reasons right, but it was what
it was, and I was sothankful to have the help. And that's
(06:40):
the day I met doctor Raymond andI am so thankful to have her as
my indore canologist who is the chiefof indore Canlogists at Children's at Last.
And it's been a blessing since then. So we're like family. Now,
let me see what else. SoI kind of jotted down some things doing
a break up, other things Iwant to share with you guys, but
(07:00):
asking people for help to help youwith your baby, even when you go
on vacations with family members, theydon't really know what you go through.
They hear and see that on Google, duo, on FaceTime or at a
distance, but they do not havea clue and they think that they understand
it. And the men that youthink you explain it to them. Okay,
but she needs insulin. If you'regonna feed her that they give her
insulin next meal. They forgot tenminutes later, she wants something to drink.
(07:25):
We know that she needs insulin foreverything. They'll just go ahead and
give her some chips drink. Howdo whatever it is that she wants without
realizing this baby can't have that you'regonna hurt her then to help her.
Okay, So you gotta understand theprocess. And you can't really fault these
people because some of them don't havekids. Some of them with the grandparents,
they now used to people being around. They say they understand, but
(07:47):
they don't. So when we areaway and out of town, it's hard
like to even go and have adrink, or go and do something with
somebody else or another couple, orlet the grandparents watch Siana because you're afraid
they're not gonna do what you do. Or if you leave them overnight and
you go off to the club withyour man and do whatever, they're not
(08:07):
gonna wake up like you and giveher what she needs. They're gonna see
her phone, give her some insolentmaybe or maybe not. I mean,
these people aren't used to doing whatyou're doing, so it's hard to fault
them. But it's also hard toask them for help. Guys, it's
just really it's a hard thing.Another thing I find is just finding qualified
(08:28):
family friends or even providers that areoutside of the home to help you.
Period. You're just in this kindof alone with the people you live with
in the house because nobody understands theprocess. Besides the hospital. You know,
they understand what you're going through.They've been near, they've done that.
It is what it is. Butyou know, you just feel again
(08:52):
like you just can't depend on otherpeople, and you become secluded because your
kid's life is what's twenty four sevenof your concern, and so people may
look at you and feel some typeof way. But you know what I
say to that is it is whatit is. My daughter needs me more
than you need me, and herlife is dependent upon what I do,
(09:13):
and I have no choice but todedicate all that I have to her.
If that makes sense to you guys, that's just the mindset that I'm in
because I can't deal with the outsidenegativity. I can't deal with trying to
help people understand that I'm only goingto be with us for four days on
a trimp or on a vacation.I just do what I gotta do and
hope they catch you on or wantto support in some kind of way.
(09:35):
And so as a mama or adaddy or whoever that's taking care of this
type one toddler, know that youhave to do what you have to do
and if people are not on board, it is what it is. It's
so much to explain, like wehave gotten diagnosed at one point, and
then now we're months later and we'restill learning, so we're so far in
it. It's so far to take. It's so hard to take people back
(09:56):
to where we have been from dayone. All they says, Oh,
I get it, I understand.That's too much. That's hard, that's
this is. It's nothing we cando. It's not something that you can
just fit. It is what itis. And you're in this until your
baby's old enough to deal with itand have those things on their own.
That makes sense. A few morethings, just being satisfied, you know,
(10:20):
I think as a mom, I'mnever satisfied with where her numbers are.
I'm never satisfied with what she eats. I'm never satisfied with seeing her
go through pain. If I haveto tell you, guys, the biggest
struggle I go through is watching mybaby get these needles every week in her
body. And we're not talking aboutthe insulin in her legs like she used
(10:41):
to or the pricks in her fingerevery two hours. The insulin the leg
is like eighteen ten to sixteen aday depending on how much she ate,
and she was the one that atea lot, so you know, I
may give her insulant for this,and then I got to turn around and
give insulinent for that. So thatwent on all day. But just to
see her when she's crying with herdeck comb, to see her when she's
crying with her tandem pump sight stuffbeing put on. You know, I
(11:05):
am so in pain when I seeher, and you think it's going to
get better. And I gotta tellyou when she first started and three guys,
she was screaming so loud that Ithought the copts was going to come
and rest us. But now she'sso much better that it's still painful.
Like I was asking my husband tonight, like while I'm away, you know,
how did it go? And hesaid, what she cried, and
(11:26):
then yesterday the desk com had bledmore, so that made her cry.
So you know, these things thatwe deal with as parents that nobody really
understands and get. It is painful. It's so painful, and I hurt
for my baby and I sometimes justwant to take it away, you know,
And it's not something you can reallydo. You know, my daughter
asked me yesterday, Mom, ifI take away my dex calm and my
(11:48):
tandem pump, does this mean Idon't have diabetes anymore? Guys, my
heart broke so much to hear hersay that, To hear her ask me
that for so long guy made herthink that I could relate in a way
like I. She was like,Mom, when you're diabetic and when you
have this, and you know whenyou was dibetic, did you have this?
(12:09):
I just agreed I couldn't. Thatdidn't have words for her for a
long time because she knew that Ihad lost my dad to diabetes, and
those concerns follow over into my babylosing her life. And I know my
dad was an adult and it wasa different circumstances, but you can't help
but to think in that way.But I heard so bad for the questions
(12:31):
that they ask. Guys, itis so hard because you want to give
them comfort that we know what they'regoing through, we can't relate. But
in actuality, if we're not diabetictoo, we can't. We can't.
We see them going through pain andstuff and we just cannot relate. And
so that's how a hard situation todeal with and I struggle with that a
lot. With her questions and she'sso sweet and she's asking me things and
(12:54):
I'm like, yes, baby,and no, baby, and you know,
and I told her, you know, no, the stuff you still
need it. It's gonna save yourlife, you know, like you have
to have it. And I said, if you take that away, you
take the pump away, then Ihave to get insulin in your legs,
you take the deck come away,then I have to prick your fingers.
So she remembers those days. Andso that was just what it is.
(13:16):
Let me see, you know,our attempt to stay engaged in the research,
the knowledge, what's happening, thesocial media, the new technology available.
It's also consuming, time consuming anda full time job because you want
to stay on the up and upso that you know what to have ready
(13:37):
or what's available for your baby tomake their life easier. I struggle with
that, guys, I really really, really really struggle with that. And
I have the hardest time trying tofigure out where's my happy medium with that
stuff. It's their happy medium.Can I have one? I really don't
know. But it is a processthat I have to continue with so that
(13:58):
I am aware and I also herefor you guys as an advocate speaking up.
I have the new product called thePocket Underwear and that is the first
underwear to house an insulin pump thatyou guys can find at donate TPUC dot
com or the Pocket Underwear Company dotcom and you can pre order and donate
(14:18):
to the calls. But I haveto stay on top of all of this
stuff so that I'm here to helpother people, just like I would like
people to help me when I don'tknow. So we'll see a few more
things, guys. Like one ofmy issues is with her phone. All
(14:41):
week, it's been stay saying actuallyfor the past month, it's been saying
stand out of range. She's notreally out of range, and her phone's
right there. Things like that Dexcomgoing out before the ten days of insulin
you thought was fresh, it's notfresh. She goes to gymnastics, her
(15:01):
pump site comes off because you know, she was being a regular kid or
playing at the park with a friendand she accidentally pulled it off. These
are all struggles of things that Igo through and she goes through. I'm
not gonna even just say the strugglesthat I go through, and I may
do a podcast where I ask Sianawhat is the struggles she go through?
What she feels are the hardest things, because I think we captured a lot
of that episode one, but notwhere she could think it through some more.
(15:24):
So maybe I'll wait till she's eithera little bit older or just kind
of see if we talk about itone day what happens. Because she's always
asking me questions and stuff, buther phone is definitely not out of range,
So why is it saying that,like you know, it's just like
those things like okay, you can'tfigure it out, so then you got
to prick your finger or wait tillit comes connects together to work. One
(15:48):
of the issues I really hate isthe dex com taking two hours to upload
before her numbers come in. Sometimeswe're doing this late at night, so
that the next seven or ten daysit's at night again and not early first
thing in the morning when we gotso much going on. Last night was
one of those nights where I wasup till one. We put it on
(16:08):
her at eleven, and I wasup till one to see if it worked
or not, And as soon asit kicked in, it said high And
this is something new. It happenedyesterday and it happened today. It says
high. Normally when it's high,guys, it is past the four hundred
(16:29):
level. That's what high means onthe deck cam. On the phone,
that means it just gotten to apoint where you can't read the numbers to
off the chart. Okay, justlike if she was too low, it
would be past forty when the numbersgo out. I believe under forty.
And so for her to have thedesk cone kick in and then it says
she was high, I immediately grabbeda pricker to check her finger and she
(16:52):
was at like three sixty nine fromsomething she ate which should have showed up
on her dext cam or on herphone. Why didn't it show up?
What is this is just a newchange that we need to update on the
phone. I gotta do my research. I gotta ask, I gotta ask
the endow. And this is whyI mean her talk all the time,
because I'm running through issues where Ihave to ask these questions all the time
to her or the diabetic team.So those are things that you struggle with.
(17:14):
You're going to struggle with. It'sjust not perfect setup, and it's
not a perfect system. I'm lookingforward to them bringing I think the G
seven because they said the warm uptime it's gonna be quicker. We need
that, guys, we need it. Anybody who is a parent and want
to be an innovator, some ofthese issues that are mentioning police, take
it upon yourself to fix the problem. Just like I created the pocket underwear
because that's what I felt my babyneeded at the time. Felt like everybody
(17:37):
wants to have the pocket underwear sothat they can deal with their diagnosis in
privacy and peace at their own discretion, you know, to share. And
so that was the reason behind creatingthe pocket underwear. But we can have
a whole podcast on that, andyou guys can check that out on the
website. More of my daughter's documentaryis on their two telling her story about
(17:59):
when she was diagnosed. So letme see, I wrote down where I
live. I live about a hoursome change from Children's LA and I can't
partake and a lot of the thingsthat they offer the Bombast the parents,
I can't partake in a lot ofthe things that they do for training people
that you find in your family outsideproviders and stuff because I live so far
(18:22):
i just can't depend on anyone inmy area that's willing to first go the
mile to be there for my baby, but also willing to take in as
much as I'm willing to take into learn, you know, And that's
again going back to find and qualifiedfamily friends and outside providers to help you
with your baby or help learn theprocess of what it takes to take care
(18:44):
and type one taller. It's justnot happening. So that's a struggle for
me. And I'm looking to liveclose to the LA sometimes soon so that
I could be in a part ofthe some of the support groups. Now
that she's older, we can goto the camps, we can be a
part of a lot of things thatshe wasn't that wasn't available for her when
she was a younger kid. Soyou know, we're making waves through this
(19:06):
and we're meeting more people and morefamilies and stuff that is helpful, but
again we don't live close to them. So the financial difficulties of relying on
the insurance to cover everything. I'mthankful I have the insurance and I'm in
a position to have insurance to coverbut sometimes when you're about to run out,
you got to rely on them toprovide more. For example, the
(19:29):
transmitter that goes into the dex comsensor. You only get one of those
every ninety days. I had asituation where her transmitter would not pick up
on her new phone, and thenshe had just got the new desk com.
It went on like that for solong that it scared me because I
was like, if this doesn't comeon eventually, I don't know what to
(19:49):
do. I don't have a backuponce. So I called the next day
and complained to the insurance coming likewhy is it there? Not too at
a time giving out and I thoughtthey was going to change the laws a
while back. What they said theywould give you more than one, but
they didn't, and I still onlyget one every ninety days. But eventually
I had to restart the phone overand over, restart the bluetooth, let
it pick up. The next calm. The transmitter was not picking up,
(20:12):
guys, And it took maybe twohours, but he eventually picked up,
and I just prayed, guys,I prayed for that to pick up.
I didn't know what else to do. So prayer is your answer when you
need to, okay, because sometimesyou're just not gonna know how it works,
just like praying that it doesn't hurther the next time, praying that
she doesn't cry, praying that thenumbing cream works. Guys, I put
(20:33):
tons of numbing cream on her.Some parents put like the sandwich and see
the clear glad stuff on her ontheir babies and let it sit for a
while to make sure it's really numb. I don't do that, but I
do let it sit for five minutes, and I put two different creams on
at the time, and it stillmakes her cry. So anybody else had
better solutions, please lease, pleaseshare with all of us, because we
(20:55):
definitely need to know what to do. Okay, we need to that is
important priority, so all babies cannotfeel as much pain during the process.
The last thing I'm probably gonna talkabout, guys, is you know,
I already talked about keytones versus ketoacidoses. But the hyper and the hypoglystenia
(21:15):
and the hyperglistenia, those are thethings that we have to monitor. Two
that is usually like a concern tome, just like the keytones and the
keto acidosis. It is something thatyou really have to be concerned about,
and you need to watch it withyour kids and just kind of stay in
the know. Ask questions you don'tknow anything that is just of alarming to
(21:37):
you. Remember that there's no questionthat's stupid or should not be answered.
You should always ask anything you feel. But I wanted to let you guys
know that with the hypo, andwe'll talk a little bit now, but
in the future we'll talk about itmore. The hypo glysinia is when you
go lower than seventy and if yougo too low, then it could be
(22:00):
things that cause us a confusion foryour baby, seizure, coma, or
death. Okay, And so youhave to be conscious of this and aware
of this. Now your doctor willtell you the best range to stay in,
but I think for our kiddos it'sseventy two one fifty. Anything above
the normal range of und fifty youwant to work on bringing down with insulina
(22:21):
for sure. Now, when yousay, hi, what's too high two
hundred, three hundred, four hundredhigher or above can be a serious issue
that could cause long term damage toyour baby's body. And that is could
be strokes or heart attacks or eyedisease and things like that. And I
(22:41):
always struggle with this because I feellike, Okay, has she been too
high too long, even though it'sbeen once a month, maybe twice a
month here, but after a longperiod of time two three years now,
has that affected her to where she'srisk for eye disease? Especially now that
(23:03):
she's wearing glasses. That's concerned tome. And it is because of me
wearing glasses, the doctor's the eyedoctor is saying it's because it runs in
the family where I'm the first towear glasses in my family. So my
dad didn't start win until he wasdiagnosed as diabetic in his older years.
So I don't know if to believethat. I'll believe that's she's been affected
with an eyesight because I do knowquite a few diabetics that do have glasses
(23:26):
that has been affected through the eyesightsince being diagnosed. So I go through
these struggles with concerns, guys,and I gotta tell you, it is
a lot, and I'm sorry I'mpacking so much in this into this episode,
but it is a struggle as aType one taller mama. But it
(23:48):
is a beautiful struggle because I knowthat my baby is still happy and healthy.
If you want to check her out, you can find her on Instagram
at Siana Milani at sea E nA N E I L l A n
I, and I'll put it inthe description as well. She is just
so vibrant, so happy, soeverything to where I just can't imagine anything
(24:14):
else, and I'll do all thatI can to see that smile on her
face. So that's what I meanby it's a struggle, but a beautiful
struggle it is. Of Course,I wouldn't want her to be the one
diagnos. Of course I would wantto be the one diagnos rather than her.
Of Course I would want to bedealing with the pain she's going through
instead of her. But it's nothingI can do besides support her, be
(24:37):
here for her, love on her, show her that she's doing the right
thing, let her know that thisis just all that she has to do
to continue to be healthy and happy, and that it's not as bad as
it seems easier for me to say, because I'm not the one taking the
needles every week every day, orthe pain and dealing with highs and lows
(24:59):
and your body signals and stuff likethat, which it's also going to be
hard. If your baby is youngerthan six, it's hard for them to
tell you what they're going through.Siana did not know for a long time
whether she was high or low,guys, and it's important to stay on
top of checking everything, getting yourpump when you're recommended to do so,
and just being well in tuned tothe diabetic community and what our babies need,
(25:23):
asking all the questions you have toeverybody, and just keeping yourself grounded
as a parent to make sure you'rein the right head space before you can
be there for your baby. Andthat's basically it, guys, that's going
to be a rap on this episode. I'm so glad you guys tuned in.
(25:45):
I'm so glad you're here, you'relistening. I need you, guys.
I know you need to hear fromme what I'm talking about. And
we are going to be one bigfamily and I look forward to hearing and
seeing you guys in the next episode. Thank you for tuning in too.
Talking talks with Type one diabetes eatsand I am your host, Doctor Deanna,
and I am out the FCB RadioNetwork, first class broadcasting worldwide
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