>> Hi.
I'm Sophie Cannon.
My two-and-a-half-year-old daughter, Stella, has spina bifida and hydrocephalus.
Stella is very, very sassy and very stubborn.
She always makes people laugh.
And she's extremely loving.
She's determined, kind.
She's amazing.
She's up to 21 surgeries now.
And they were all done at Penn State Children's Hospital.
Since all of the shutdowns have started, I think that she has been inpatient in the hospital
four times.
And I remember the first time just sobbing, thinking about oh, my gosh, she needs this
care.
And there's a pandemic.
And I have to take her into an emergency room.
And I said, oh, my gosh, this is the last thing that I want to do.
Good morning.
Kiss you good morning.
Stella is getting ready to age out of early intervention.
Once she's three, she'll be done with that.
So today, we're having her transition meeting for early intervention.
Normally, it would be held in person.
But because of the COVID-19 situation, we need to do this over the computer instead.
Who do you see?
>> There we go.
And there's Sophie and Stella.
>> Hi.
>> All right.
It is 11.30.
We just arrived at Stella's outpatient OT appointment.
All right.
Let's see.
So first, we got to go around the car and get Stella's wheelchair out.
We'll go get Stella.
Cheese.
All right.
We're at therapy.
What do we got to do?
Masks on, right?
I initially canceled the therapy, not wanting to take her out during the COVID-19 outbreak.
She needed additional therapy.
So I got her signed up for outpatient therapy.
And it's going extremely well and hopefully get to see a little bit of how that goes for
her today.
>> Good girl.
Pretending.
I love it.
Thank you.
Okay.
We're going to do ten of them.
You think you can do ten?
One, two.
Thank you.
Good girl.
>> Good pretending.
In true Stella fashion, a day in the life is going to involve a trip to Hershey.
Stella has been having some symptoms that for her characteristic of shunt failure.
So she's being admitted for further testing.
So Anona, who thankfully is here to watch Joseph.
And Stella and I are hitting the road to go up and get admitted.
It's 2:30.
We just got to Hershey.
We're in the parking garage, getting our stuff ready.
Stella is in her chair.
We have all of our stuff that we're going to carry in.
My pump, my cooler to keep my breast milk cold for joseph, an overnight bag for me,
an overnight bag for Stella.
This is what we bring every time we come to the hospital.
So here we are.
We're in Stella's room, sort of waiting to see what the next steps are.
So it is almost 8 o'clock.
And Stella has got all of her tests done.
We have plans for her to go to the OR tomorrow just to do some more exploration and to see
what's going on.
And now that she's allowed to eat, we're all a whole lot happier.
I've been thinking about her needs and thinking about how tough it is for her to have to frequently
be in the hospital and for her to frequently have complications that make life challenging.
It makes me feel like I wish I could do something to take those challenges, to take that discomfort
away from her.
But it is a comfort having Penn State Children's Hospital.
When you're going to a place where people care about you, it makes it a little bit easier.
I do think Stella is a miracle.
She doesn't see her differences or her challenges as roadblocks.
I think that I'm lucky to have her in my life.