Owen’s Journey.

Owen was diagnosed with cerebral palsy at 6 months.

Getting the diagnosis

He was born with a very large, right sided hemispheric stroke. Essentially where the majority of his right brain is now was just filled with CSF, with brain fluid. On top of that he also had some sort of birth anoxic injury as well in certain smaller parts of his brain. So he has kind of a dual stroke diagnosis and HIE diagnosis, which has lead to the diagnosis of CP. And I think the neurologist said, "Well he'll probably be able to hold a pencil and he'll laugh." Not that he'll have a sense of humor. Not that he'll think things are funny. And everything in the NICU is a code and I was like, "What does 'he'll hold a pencil' mean? What does 'he will laugh mean?” Like he will laugh at nothing?

As I was left behind in the aftermath, the only question I could muster was: Is this going to be okay?

My life has gone relatively well, right? Like everything kind of went like I expected it to go. And I went to therapy after this whole thing happened and the therapist told me, "The most shocking part for you is you never, in any of your wildest dreams, this was never an expectation. So there was no way to prepare for this." And I think that's completely true. Even if I'd thought of the worst case scenario of what would happen, this was not even on the radar.

But I can now tell you now, even though you may not be able to see it yet, it will all be okay.

“Even if I'd thought of the worst case scenario of what would happen, this was not even on the radar.”

Starting Therapy

Owen was diagnosed with CP at six months by Dr. Nathalie Maitre. We knew about Early Intervention. I read all about brain plasticity. I spent most of my time in the NICU reading about how incredible the brain is. And so then we signed up for Early Intervention when Owen was five weeks old. The physical therapist looked at me like I was nuts. She was like, "Why is your kid here? Does he have torticollis?" And I was like, "Oh no. My child has far more than torticollis." It was a good experience for me. We went through a lot of therapists in the beginning. I knew there were gonna be issues.

He's been through pretty much any therapy you can think of. He goes to physical therapy and occupational therapy pretty much every week. We've done speech and swallow therapy and also aquatherapy. And the most importantly is therapy at home. It's important to remember that Owen is a baby so he needs to be interacted with like a baby and that's how his brain's gonna grow and learn. He may be missing some pieces that we can help with, but really just interacting with him letting his sisters play with him, making him laugh, doing all the things that a baby does.

My therapist is really good about "Don't let people cuddle and hold him like this. Make sure he's sitting upright. Don't treat him like he's at a six month level, talk to him like he's a one year old and interact with him like a one year old and give him the benefit of the doubt that he knows what's going on.”

“The most important therapy is at home. It’s important to remember that Owen is a baby so he needs to be interacted with like a baby.”

Positive Outcomes

A lot of times I actually kind of forget that he has CP just because he interacts just like a able-bodied baby would because of all of the therapy he’s been through. I was amazed by the fact that he's able to use his left side so much. Again, right sided stroke, shouldn't really have ability to do much with that left side. And he reaches out and gives high fives with his left hand.

That use of the left side was a direct result of a clinical trial research study that they were doing here. We softly constrain the right side for a limited period of time, which sort of just gives the left side a chance to kick in. And then it's almost that glimpse that you get in the NICU. Once it's a possibility, once for Owen using that left hand was a possibility, then he takes it and does so much more with it.

It's almost like you just have to tell him that this is a possibility and that he can do this and then he'll start doing it. He just didn't realize that there was even a possibility.

“A lot of times I actually kind of forget that he has CP just because he interacts just like a able-bodied baby would because of all of the therapy he’s been through.”

Looking ahead

“A lot of times I actually kind of forget that he has CP just because he interacts just like a able-bodied baby would because of all of the therapy he’s been through.”

So there was one nurse and Owen was cooled because it's part of the protocol, and they didn't know it was happening and he came off of cooling and he was shaking really badly. He was shaking 24 hours a day. And I kept thinking, "Is this it? Is he going to shake like this forever?" And the nurse said, "I love these brain babies because it's like The Wizard of Oz, just hang in there. It'll be black and white for so long and then it'll be color."

And I remember thinking, "How can this be for my baby?" But for him, he's been color all along. For us, my whole world was black and white and I thought everything was good, and I thought that I understood the world, and then it opened up to color and it's just life is so more complex and so much more beautiful and everybody's on their own path and normal is boring. Things in color are scarier for sure, but beautiful things in color are so much more beautiful." And she was so right about him, but she didn't even know that she was speaking to our new life, I think. So that's the new normal.