Early on, the sonogram picked up some deformity. They weren't
exactly sure what. But we knew that something was wrong.
(Dad) He had Pierre Robin Sequence. (Mom) I started noticing the way his
spine was curved around five months. At that point, we both
decided we need to see an ortho to figure out what's going on.
(Dad) It progressed so quickly. (Mom) I was worried. I mean, we didn't
really have any answers. So I didn't know how to move forward
with it. We didn't have a true plan from the doctors. He was
sitting, he was crawling, but he wasn't walking. (Dad) We kind of
had a life-changing event with him a couple years ago. He was
in his cast And he choked. And then he aspirated. And he was
unconscious and it was 9-1-1, it was ambulance, it was emergency
people resuscitating him. I tried to cut the cast off of him
and I couldn't do it, so when he got to the hospital, they took
the cast off of him. And we decided we're not putting one
back on. And at that point, we decided that we kind of wanted
to change directions and we wanted to get some other
opinions. And that's when we got associated with Children's
Hospital. We got an appointment with Dr. Garg, and the
comparison has just been remarkable. Immediately, he was
like, "It's kyphoscoliosis." He had a walker. And I noticed that
he started dragging both of his feet. He wasn't able to walk
anymore, even with his walker. (Dad) You see your kid losing
the use of his legs, you gotta do something about it if there's
something you can do. And Dr. Garg assured us that there is
something we can do. I said, "The decision is made, we have
to do this." But it was extremely difficult--it was
really hard--because you know that you're risking your child's
life. I talked in my own head about it. And it's been a lot of
adjustment to being a dad and hoping all the dad things and
what you get to do. I want him to keep up with the kids that
he's playing with, I want him to beat, bang, and bash all over
the playground. I want all those things--I want the rough and
tumble. He's a little boy and he's climbing all over stuff and
he's just having a blast.
I saw Dr. Hankinson and Dr. Garg
walking out and they were smiling. And I was like, "Ahhh.
Okay." And they were laughing together. And it must have gone
well. Okay! So that was kind of like an instant relief.
(Dad) After the two straight weeks, he started crawling. He was on the
floor here in the living room and he was just like, "Look
dad!" And then he got up on all fours and started moving
forward. And we melted. Within two weeks after that, he was
taking steps. I'm thinking to myself, "I never thought at my
age my hero would be a three-year old."