I remember calling our therapists and to tell them the news and to my surprise, they were not shocked. Did they know? Years later, I have been told that they thought Nicholas had already been diagnosed with CP. It wasn’t until they reread their notes that they discovered why we were so shocked. Clearly, gaps in the system, gaps in the diagnosis, gaps in attention to this disability. I can’t think of one other disability or disease that this would have happened…except Cancer.

Believe it or not, there was a level of denial. He was just early, and he would catch up! CP – NO WAY! Looking back, Nicholas was a poster child for mild Cerebral Palsy. But we didn’t want to believe it, because it would have meant that our expectations and our dreams would have been over. After a 2nd opinion at the Rainbow Children’s Hospital in Cleveland, reality sunk in….we cried, we mourned, we needed to figure out what to do next. Dr. Wilson-Costello, the doctor at Rainbow Children’s, highlighted parent’s attitude as being one of the most important characteristics she saw in families that had a child that responded well and progressed. She also encouraged increasing our therapy sessions, and specialty therapies where allowed, and “never say never. If you say he can’t, he won’t.” We never said he can’t, and he always did!

So, after doing countless hours of research (and finding there was more press and information on how to sue a Doctor for malpractice in CP cases instead of treatment options), we set down the road of standard therapy treatments. It was surprising that there were few proven treatments available for addressing the brain injury, but the therapies had helped, so we committed to them, holding out hope that other treatments would become available.

Until this point, life seemed perfect. Nicholas’ diagnosis of CP shook our faith and tested our ability to be parents. We were faced with an unknown future. Would he ever be able to feed himself? Would he ever be able to sit up by himself? Would he be able to go to school and learn something? Would he ever be independent of us?

We didn’t have answers to these questions. And only time would tell us. We had to learn to be patient, learn to love unconditionally, learn to set aside expectations and accept what life would bring, learn to live in the moment. We found the balance tough. You want to do everything you can for your child, but with so many unproven treatments, it’s easy to spend a childhood hopping from treatment to treatment looking for the silver bullet. We searched non stop for that silver bullet, but continued on with standard therapies, and let Nicholas salvage what was left to be a kid.

With the help of dedicated therapists and a HIGHLY motivated Nicholas, progress continued. In October 2003, we met with our therapists for Nicholas’ six month evaluation. Nicholas was now 16 months old. We were thrilled to see that his Gross Motor and Fine Motor skills had increased to a six month old level, his Cognitive, Communication and Social Skills had developed to a 9 month old level.

He was now able to sit unsupported after a stretching his leg muscles. It was only for a few seconds and he sometimes had to put his hands between his feet when he was sitting on the floor. He was now reaching for toys and could release toys into a container. He still needed us to put the toys into his hands and sometimes needed verbal prompting to get him to drop the toy. He was now laughing out loud, imitating clapping and banging, smiling at himself in a mirror and saying vowel/consonant sounds (ah, uh, d, b, k, h, g). Not entirely impressive in normal conditions, but we knew how hard Nicholas had worked for these steps. Proud is not the word.

His hard work continued, and while our options for progress were significantly limited (therapy was the only option under 2 years old), progress continued in spite of science leaving him behind. Fine and gross motor skills continued their steady progress. In the middle of progress came change. A new job required our family to move to California.

Moving is stressful for any family, but with Nicholas’ progress, I constantly second guessed our decision. He had therapists and a special education teacher whom he really enjoyed working with. He was doing well with them. And I was afraid that weeks without therapy and then adjusting to new therapists would somehow hurt his progress. What we failed to remember is that Cerebral Palsy is not a regressive disorder. Once you learn a skill, it’s yours. Once you retrain your brain to do something, it doesn’t forget.

Every state handles therapies differently. Our therapies in NY had been home based and in CA therapies are based out of a therapy center. Each has pro’s and con’s, but we found that the therapies were equally effective, and progress continued.

Orange County, CA offered many more options for treatments and services than we saw in Buffalo. We also saw blatant evidence of the lack of a protocol treatment plan, or standard treatments. Ideas differed significantly, leaving us to try and figure out which was best. In the end, we changed some of the drugs Nicholas was taking to help with his muscle tone (we moved from Diazepam to Baclofen), which had an immediate positive impact. After seeing specialists such as a Pediatric Neurologist, Physiatrist and Orthopedic Surgeon for the first time, we were told that Nicholas had a partially dislocated hip. One doctor recommended that no standing or walking take place during therapies, another doctor disagreed. Again, a case of doctors managing the care of our son, with very differing opinions, recommending different plans. With no focused treatment plan, “bickering” between doctors is common. Parents are put in a difficult position to identify who to align with, and which treatments to follow.

In February, 2005, we opted to try Botox injections in Nicholas’ legs, yet another recommendation from a different doctor. This, combined with Ankle Braces, seemed like our best option that we had been presented, and we agreed to do this.

By May 2005, when we met with Marcia Greenberg and Dr. Oppenhiem at the UCLA Cerebral Palsy Clinic, Nicholas was ready for weight bearing. Progress had continued, and it was time to take the next “step’.

Keep in mind, Nicholas was about to turn 3. He was constantly “working” to do the simplest of tasks. He was making steady improvement, but with the constant working, at times very painful, he still could not take unsupported steps. He was a very willing participant, but options presented to us, even in Orange County, were limited at best.

At 3, Nicholas began Preschool. It’s a difficult balance trying to match physical limitations and challenging his cognitive skills. Even at the preschool level, these questions exist, and it’s one that follows a CP child throughout their schooling career.

A few weeks into school, Nicholas began to change. Motivation to work dwindled and abilities to stand and sit were eliminated. Therapies were no longer effective. Our CP life was about to take a back seat to the disbelief of Cancer. Nicholas proved that his spirit was never going to be dimmed by CP. He fought through every challenge….worked through every struggle….lived life to the fullest. Like I said, he fulfilled every one of our dreams. « Page 1