- It's been amazing to see the flood
of love and support from our
friends here on the island.
With one phone call she was there,
and she spent the entire time
at the hospital with me,
helping me through all of that.
- [Jeremy] All of the kids
have been just showing an outpouring
of love and support for Caleb.
- Caleb had a seizure.
He does not have a history of seizures
and so it was a big surprise,
and very scary for him and for us.
What happened was it was a few days ago,
and I had put the three
younger kids to bed,
I checked on them,
they were all asleep,
and I was out in the kitchen,
cleaning the kitten.
And I heard an odd noise.
And then I heard it again.
And I asked the kids,
I was like what is that noise?
And Elie said it's Caleb.
So I walked in his room to check on him,
and I immediately knew
something was wrong.
I flipped on the lights
and he was lying on his bed in a seizure.
And while Caleb has never
had seizures before,
I have seen seizures before,
and I immediately recognized what it was,
and I called to him, "Caleb."
And I knew he needed help.
So I ran out of the room
and grabbed my phone,
and as I was coming back in
the seizure stopped.
I'm so grateful that it was not very long.
And he was still lying there.
He wasn't responding to us.
He couldn't talk and his
body was still stiff.
I scooped him up in my arms
and called for help.
Jeremy was out of town so a friend
came to help me with the kids,
and I took Caleb to the emergency room.
They did a CAT scan and some blood work,
and everything came back normal.
So they sent us home to follow
up with his pediatrician,
which we did.
We have followed up with her,
and he had another seizure.
So we are continuing on this path
of trying to figure out what is going on.
We're working with doctors here
on the island in Puerto Rico,
and we're working with
doctors in Kansas City
because we still have connections there,
and so we're working in
unison with both of them.
We're really, really lucky that an opening
for an EEG came up.
Basically he's going to have
wires covering his head,
and they are going to pick
up the electrical activity
of his brain for 24 hours.
They're gonna be monitoring it
and see what we can learn from that.
So that's what we're doing.
(piano music)
Waiting rooms are always so cold,
and we did not bring a jacket.
I had us both put on pants,
so that's a step in the right direction.
Caleb's got some Gak he's playing with
to pass the time, waiting room fun.
- Kind of fun.
- Are waiting room's not your jam?
We've restored to cuddling.
I'm okay with that.
So Caleb's doing a paint by sticker book.
My kids have really been
enjoying this Christmas one,
and I brought a book for me.
You just never know how long
you're gonna be in an office,
and I'm reading a Christmas book
that I'm really into right now.
There's our instructions.
Caleb, how many cables are
they putting on your head?
- 24.
- [Caleb's Mom] And they're
gonna use a glue and some tape
so they're gonna stay on there.
And what's the number one rule?
- Don't touch your head.
21 more to go.
- [Caleb's Mom] 21 more to go.
Your hair kind of hides that one.
Is it cold or is it just fine?
- It was cold.
- [Caleb's Mom] Yeah,
the glue's a little cold?
- I'm surprised how many cables there are.
- [Caleb's Mom] Yeah we thought there were
just gonna be a couple.
- Yeah.
We thought there were gonna be like four.
Then we had to plus that by 20
to actually get the right answer.
- [Caleb's Mom] 24.
- It's easier if you're bald.
- [Caleb's Mom] It
probably would be easier
if you were bald.
At least you have short hair.
It must be hard for
people with longer hair.
So all these cables are
gonna plug in to this box.
- How do I carry it around?
- [Caleb's Mom] I think they
give you a cool little bag.
- I'm at the last one.
- [Caleb's Mom] Oh, that one
doesn't even go on your head,
it goes on your chest.
It looks like you have
really cool colorful hair.
Like we should braid your hair back there.
Caleb your brain activity
is all going into that box.
- It should read my thoughts, right?
- [Caleb's Mom] It doesn't
read your thoughts,
it reads your brain's electrical activity.
It would be super cool
if we could just collect
all of your thoughts.
So they're gluing them down,
which makes me feel better
about them not falling off
since you're a little
bit of an active guy.
Caleb's having fun
messing with the machine
because every sound and move
he makes effects the machine.
It's a good thing we don't
have that recording with us all day.
He's putting your colorful
wire hair into a pony tail.
The setup is complete.
He's got a little bag that
all the wires go into.
Give us a little slow turn
so we can see all the wires on your head.
So for 24 hours he has
these wires on his head.
And the wires go into the little machine,
and record the electrical
activity in his brain.
As we were walking out
of the office, we saw another little boy,
pretty close to Caleb's age,
with an EEG hooked up to his head.
And I think it just
really helps kids to know
that they're not alone.
They're not the only
ones experiencing this.
I'm not the only mother
experiencing this with my child.
It's an important thing to know.
You're not the only one
wearing this getup today.
So how are we doing?
This has been hard.
Walking into Caleb's bedroom
and seeing him have a
seizure was terrifying.
I felt powerless and scared,
and it was just really, really hard.
It was hard that Jeremy was gone
when this all happened.
And it was a really hard
experience for Caleb.
I didn't know that when you have a seizure
you can be aware and hear.
And he could hear me,
but he could not respond,
and that terrified him.
I can't imagine how scary that would be.
I know how scary it was on my end
to not be able to have him responding.
So I think we're doing our best.
I think we're tired,
we're overwhelmed, we're scared,
but we are relying on our friends
and our family and our doctors.
We are going to do whatever we need to
for Caleb to be healthy.
And we're working with doctors here
and doctors in Kansas City.
There's a chance we might go back
to Kansas City to have
some appointments there.
There's a chance we might stay here.
So we just don't know exactly
what the future holds.
Maybe more testing, maybe medications,
but we're gonna do whatever we need to do.
It's been amazing to see the flood
of love and support from our
friends here on the island.
With Jeremy being gone, I needed help,
and these friends rallied.
My friend came and stayed
the night with our kids.
Another friend met me
at the emergency room.
She speaks Spanish fluently,
and with one phone call she was there.
And she spent the entire time
at the hospital with me,
helping me through all of that.
Another friend, the
next morning, 6:45 a.m.
Showed up at my door.
I didn't even know that I needed her help,
but she came, and I needed her help.
Caleb and I had gotten back
from the hospital at four a.m.,
so he was finally asleep.
And she got all my four other kids ready
and took them to school,
took Jenai to another friend's house
to stay for the day.
Seriously, people fed and cared for
and drove my kids around all day.
And I am so grateful for
the amazingly wonderful
people in this world.
We haven't found a cause
yet for these seizures.
A lot of seizures are idiopathic,
and that means you don't
know the cause for them,
and that's where epilepsy comes into play
as a possible future diagnosis
that they're looking at.
Like I said, we don't know what is ahead.
But we're gonna do everything we can
to figure this out
and take the best care
of Caleb that we can.
In the midst of it there's,
it's scary, but there's a lot of good.
So we can't choose to only see the scary,
we have to keep our eyes
open for the good as well.
- I'm going through right now
and editing the video.
And there was one piece of the story
that I really wanted
to remember and share.
And that's that Isaac and Elise
were so tender and loving to Caleb
through this experience.
They actually wrote notes to him,
and put it in his bag
as they were packing for him
as he was getting ready
to be rushed off to the emergency room.
All the kids have been just showing
an outpouring of love
and support for Caleb.
I just wanted to throw that in.
We can get back now to
the rest of the blog.
- I wanna watch a movie.
- [Caleb's Mom] Okay
you can watch a movie.
- [Jeremy] You wanna watch "How
the Grinch Stole Christmas?"
- Yeah.
- [Caleb's Mom] Lise and
Laura both wore green today
in honor of Grinch day.
- I tried to do a lot of green,
I don't have much green.
- [Caleb's Mom] Yeah.
- I wore a lot of green.
- [Caleb's Mom] Dun, dun, dun.
Caleb how are the wires doing?
- I like wires.
- You like the wires?
I've been very impressed,
Caleb has had times where
he's wanted to itch today
and wanted to touch it,
and he hasn't.
He's been very disciplined.
I'm proud of him.
- [Caleb's Mom] 'Cause one of the rules
is don't touch your head.
- I just feel normal, except for sometimes
I'm a little itchy,
or I just feel stuff on my head.
- [Caleb's Mom] So, Caleb, you
had a friend come over today
to play with you.
You've been doing a lot
of drawing, board games.
- I'm really proud of Caleb,
it is not an easy thing to do,
and he's done a really great job today
with all those wires attached to his head.
- Tonight is our annual Grinch night.
We are eating roast beast and Who hash,
which we just call that potatoes,
'cause I don't know what it is for real.
We're gonna eat lime
Jello because it's green,
and then we're gonna read "How
the Grinch Stole Christmas"
and we're gonna watch "How
the Grinch Stole Christmas."
We've done this for several years,
and it kind of accidentally
has become a tradition.
And I love it because it's super easy.
Read a book, watch a movie, eat food.
That's my kind of a tradition.
(upbeat music)
While he knew every
Who down in Whoville...
Then he growled with his Grinch
fingers nervously drumming.
I must find some way to
stop Christmas from coming.
And then oh the noise.
Oh the noise, noise, noise, noise.
Then the Who's young and old
would sit down to a feast,
and they'd feast and they'd feast,
and they'd feast, feast, feast, feast.
He stared down at Whoville,
the Grinch popped his eyes.
Then he shook,
what he saw was a shocking surprise.
He hadn't stopped Christmas
from coming, it came.
Somehow or other it came just the same.
And he puzzled three hours,
til his puzzler was sore.
Then the Grinch thought of something
that he hadn't before.
Maybe Christmas he thought
doesn't come from a store.
Maybe Christmas perhaps
means a little bit more.
So we're getting ready for bed,
and Laura asked me the cutest question.
She said "mom, what did they do
"in the olden days on Grinch day?"
and I was like what are you talking about?
And she said "you know, you
know what they used to do
"on Christmases a long time ago,
"but what did they do on Grinch days
"a long time ago?"
And I'm like "oh you're so sweet honey.
"Grinch day is not a real thing,
"it's just something
that we do at our house."
Kids are cute, they ask cute questions.
Merry Christmas.
So Caleb gets to sleep with
these wires on his head tonight,
and we are having him
sleep on a cot in our room
so we can keep close eye on him.
How are you feeling?
- Good.
- [Caleb's Mom] Are you ready
to get these things off tomorrow morning?
- Yes.
- [Caleb's Mom] Yes.
You've been such a good sport about it.
Can you tell us good night?
- Yeah, good night.
J House out.
- A present!
- It's a present.
(laughing)
(yelling)
(laughing)
