Nicholas

 

Diagnosed at six months old with cerebral palsy, Nicholas (Nicky Bear) has gone through a lot in his five years of life. But you wouldn't know it from the smile on his face. A rare disease called kernicterus (caused by jaundice) likely caused the cerebral palsy. His parents knew something was wrong when they noticed that their son wasn't developing the way he should. They later learned that in addition to the cerebral palsy, Nicholas was hearing- and visually-impaired and had severe motor dysfunction. Nicholas' mother describes their experiences below.

 

What is Nicholas like?

He is constantly happy and always has a smile on his face. He's a little devious … your typical five year old. And he's very tenacious. When he wants something he'll figure out a way to get it. He's very bright and we're blessed by that. He loves to kiss and touch.

 

What does he like to do?

He's in a wheelchair, but he gets around really well. He loves his swing and loves to move. He wants to be part of everything that's going on. His all time favorite is Bear in the Big Blue House. The world stops when it's on.

 

What treatments and surgeries has he had at Phoenix Children's?

He's had numerous rounds of Botox injections, had a baclofen pump put in, and had his tonsils and adenoids removed to help with his breathing. But he's been here for other things too. He's on a ketogenic diet because of his epilepsy and he was treated in the Hospital's Epilepsy Monitoring Unit. He also had a cochlear implant put in. He was deaf, but now he can hear again.

 

What was that like?

I felt like I had him all over again. He was hearing in the womb and hearing when he was born. Sure enough, as soon as he had the implant, he started giggling uncontrollably.

 

What did they do in the Epilepsy Monitoring Unit?

They wanted to know where the seizures were originating. He was having 20 to 40 seizures per day. But they found he was non-operable because the seizures were on both hemispheres of his brain.

 

Describe the care you've received at Phoenix Children's.

We call it our second home. The nurses all know him because we're there so much. They've sat with me in the middle of night when I couldn't take anymore. I feel very at home there, and it's not a threatening environment for the kids. I'd rather not be there at all, but if I have to go someplace, that's where I want to be. We love his doctors. We call them Nicky's Dream Team. The whole staff is just unbelievable, right down to the woman who cleans our room. I can't imagine being at another hospital.