The Diagnostic Journey- A Warburg Micro Patient Story

They call it the “diagnostic journey”.

In the beginning she seemed so strong. She was 5 pounds when she was born, but she held onto my finger with the grip of a football player.

At four months we took her to be evaluated for physical therapy. Not because it seemed like she needed it, but because we knew her vision was poor and she’d need all the help she could get.

At the appointment I held her in the air and showed them how she could fly and one of the women said “that baby doesn’t have hypotonia”.

But my mom knew before even some of the doctors could see it. She had had three kids.

And so she had started working with her even before that day. Showing her how to hit toys, how to hold a pacifier to her mouth. When I just wanted to let my baby be a baby.

Now every moment feels like therapy.

Because it is really.

If we’re carrying her, we know she’s getting vestibular stimulation. If she’s waiting for a bath, she’s sitting on the bed until she falls. And she doesn’t really mind- it’s almost as if that’s who she is, Kiri Kiri the hard worker.

We try to keep it fun though, so that even though we know it’s work, she doesn’t have to know it’s work. And so she keeps growing and getting stronger. And we keep telling ourselves not to be upset.  She doesn’t know what she can’t do, only what she can.

And just like her, we have a job to do every day- even more important, maybe, than the exercises and the stretching and the appointments. To applaud when she rolls, not be sad that she doesn’t walk.