Appendix E.22 case cohort picture story

Trip to the JFK Center

Insert picture of JFK

Insert picture of JFK lobby

Danny is visiting the JFK Center
today. The JFK Center is for kids
who are just like you. Kids come
here for all sorts of reasons. This
is a picture of the JFK Center.

Danny and his mommy and daddy
walk into the building. Danny’s
mommy speaks to a nice lady
behind a big desk. She tells them
that Danny can play with some
toys until the doctor comes to see
them.

Insert picture of Kathy (psychologist) and
Kristina (study coordinator)

Insert picture of Danny in elevator

A nice doctor comes in. Her name
is Dr. Kathy. Dr. Kathy has a
friend named Kristina with her.
Kristina is here to help Dr. Kathy.

Dr. Kathy and Kristina say hello to
Danny and his parents. They all
step into an elevator to go for a
ride. Danny gets to push the
button that says BSMT because
they are going downstairs to the
basement.

Insert picture of evaluation room (with some
toys out).

Insert picture of parents and Kristina in
observation room looking through window at
Danny playing.

Dr. Kathy takes Danny and his
parents into a room with lots of
toys. Dr. Kathy and Kristina talk
to Danny’s mommy and daddy while
Danny plays with the toys. This is
a picture of the room.

Danny’s parents and Kristina go
into the room next to Danny’s
room. It has a window in it so they
can see Danny playing.

Insert picture of Danny waving/making faces
at mirror in evaluation room.

The window looks like a mirror to
Danny. He makes funny faces at
the mirror. Dr. Kathy tells Danny
his parents can see him making
faces through the mirror, so
Danny waves at his parents.

Insert picture Danny and Dr. Kathy playing
with blocks

Dr. Kathy brings lots of fun toys
out for Danny to play with. She
asks him to do fun things like play
with blocks and play pretend
games. Danny has a good time and
laughs a lot with Dr. Kathy.

Insert picture of Danny talking to Kristina

Insert picture of Danny choosing a toy from
the toy basket

After Dr. Kathy and Danny are
done playing, Danny’s parents come
back into the room and talk to Dr.
Kathy. Danny tells Kristina all the
fun things he just played with. He
really liked playing with the blocks!

Because Danny worked so hard
today, he picks out a surprise from
the surprise basket.

Insert picture of Danny and parents waving

Danny and his parents are ready to
go home now. They wave goodbye
to Dr. Kathy and Kristina.

Trip to the Children’s Hospital

Danny is visiting The Children’s
Hospital today. The Children’s
Hospital is for kids who are just
like you. Kids come here for all
sorts of reasons, sometimes
because they are sick and
sometimes because they are well.
This is a picture of the hospital.

Danny’s mommy and daddy park
their car in the car garage and
then walk to the elevator. Danny’s
mommy lets him push the number
4 because the fourth floor is
where Danny will be visiting. Danny
sees other kids who are waiting
for the elevator too.

Insert picture of CTRC room

Danny and his mommy and daddy
walk to a place named “CTRC.”
There are other kids in this place,
just like him. Danny’s daddy speaks
to a nice woman at the front desk.
The woman shows Danny and his
parents the room he will stay in,
and tells them a nurse named Mary
will be with them soon.

Danny and his parents go into
their own room. This is a picture
of the room.

Insert picture of Danny in hospital gown

Danny’s parents help Danny get
dressed in a special gown. The
gown will help the nurse see
Danny’s body better so she can
make sure he is healthy.

Insert picture of Mary (nurse practitioner)

A nice nurse named Mary comes in
the room to visit. Mary wants to
look at Danny to make sure he is
healthy. Mary says hello to Danny
and his parents.

Mary wants to see how big Danny
is. She weighs him on a scale and
he weighs 40 pounds!

Then Mary wants to see how tall
Danny is. Danny stands very still
like a soldier. With his back
against the wall, Mary moves the
ruler to the top of his head to see
how tall he is. Danny is 48 inches
tall!

Insert picture of Danny get head circumference
measured

Mary also wants to see how big
Danny’s head is. She takes a ruler
and wraps it around Danny’s head.
His head is 21 inches around!

Mary will get blood from Danny’s
arm later. She puts a magic lotion
on Danny’s arm to make it so that
Danny doesn’t feel any ouchies.
She puts a clear patch over it to
keep it from getting on Danny’s
clothes. Danny gets to keep the
magic lotion on his arm until he has
his blood taken.

Insert picture of Mary holding lamp

Mary shows Danny a special light
she will use to look at Danny’s skin.
This is a picture of the special
light.

Mary turns off the big light in the
room. The room gets dark.
Danny’s eyes get used to it in a
couple minutes and he can see
again. Mary turns on the special
light and it shines purple light.
The light helps Mary see spots on
Danny’s skin that are hiding in
regular light.

Insert picture of Mary using lamp to look at
Danny’s arm

Insert picture of Mary taking photographs of
Danny

Mary holds the light near her own
skin first to show Danny what her
skin looks like in the purple light.
Then Mary holds the light near
Danny’s skin. She looks at his back
and his arms and legs. She looks
at his whole body with the special
light. After Mary is done looking
at Danny’s skin, she turns the
lights back on in the room.

Mary shows Danny a camera so she
can take pictures of him. She asks
Danny to sit very still. Mary takes
some pictures of Danny’s face and
his hands and feet. Danny thinks
it’s silly to have pictures of his
feet taken. Danny is good at
sitting still like a statue until Mary
is done taking pictures.

Insert picture of Danny with hands on a
photocopier

Next it’s time to make a copy of
Danny’s handprint on a
photocopier. Danny puts his hand
on the glass. It’s a little bit cold.
Mary pushes a button and a light
flashes. A piece of paper comes
out of the machine with a copy of
Danny’s hand. It looks like
handprints Danny made with paint
at school.

Insert picture of Mary taking hair sample from
Danny’s mom or dad

Now Mary wants to cut some of
Danny’s mommy and daddy’s hair.
She cuts a tiny bit of hair from
the back of their heads.

Insert picture of Mary taking hair sample from
Danny

Next it’s Danny’s turn and Mary
cuts a little bit of Danny’s hair.
She wants to look at the hair with
a special machine to make sure
Danny is healthy. Mary only needs
a little tiny bit of Danny’s hair
from the back of his head. Mary
tells Danny to lean forward and sit
very still. Danny sits very still and
does not move at all.

Insert picture of hair sample

After Mary cuts a little bit of
Danny’s hair off, she shows it to
Danny, and then puts it in an
envelope.

Insert picture of phlebotomist

Mary’s friend Jenny comes to visit
Danny and his parents. Jenny is
there to get some blood from
their arms.

Insert picture of Danny’s dad doing blood
sample prep

Danny’s daddy rolls up his sleeve.
Jenny puts a big rubber band
around Danny’s daddy’s arm. She
ties the rubber band so she can
see his veins.

Insert picture of Danny’s dad doing blood
sample prep

Insert picture of Danny’s dad getting blood
taken

Next, Jenny uses a small sponge to
make sure Danny’s daddy’s arm is
really clean.

Mary takes out a syringe to get
blood from Danny’s daddy’s arm.
Jenny puts the syringe in his
daddy’s arm. After a few seconds,
it’s all over.

Insert picture of Danny’s mom getting blood
taken

Now is Danny’s mommy’s turn.
Jenny ties the rubber band around
her arms and cleans it with the
sponge. Jenny puts the syringe in
Danny’s mommy’s arm. Just like
with Danny’s daddy, it’s all over
after a few seconds.

Now it’s Danny’s turn. Jenny puts
the big rubber band around
Danny’s arm. She ties the rubber
band so she can see Danny’s veins.
is healthy.

Next, Jenny takes off the clear
patch off Danny’s arm. She wipes
off the magic lotion with a cloth
and then uses a small sponge to
make sure Danny’s arm is really
clean. It feels a little bit cold and
wet.

Jenny takes out a syringe to get
blood from Danny’s arm. Jenny
tells Danny he might feel a pinch,
but the magic lotion will keep him
from getting any ouchies. Jenny
tells Danny to count to three, and
then puts the syringe in Danny’s
arm. It doesn’t hurt! It’s all over!

Insert picture of toy box

Because Danny worked so hard
today, he picks out a surprise from
the surprise basket.

Insert picture of Danny and his parents waving
goodbye

Now it’s time for Danny to go
home! He waves goodbye to Mary
and Jenny.