Sunday, August 3, 2014

The Cliff

There's a quote by Ray Bradbury that has cemented itself in my mind. Its one of those things that keeps coming back to you no matter how hard you try to forget it. I think I heard it in high school and I keep stumbling upon it now in my adult life. It goes, "Go to the cliff and jump off; build your wings on the way down." I always thought it was about taking risks and learning as you go, but recent events have made me really think about this idea and what it actually means.

Last month was a good month with Caiden. We have learned how to better prevent meltdowns and how to interpret what it is he's trying to communicate.  As a result, our home has been a much calmer place. It came with a few obstacles though.

Blood work. The developmental pediatrician we saw the end of June ordered a ton of blood work. Things like lead leavels and thyroid function only grazed the surface. We had been putting off getting him tested for the clotting disorder I have, because we were quite frankly afraid of the battle that would take place. Now with these new labs ordered we had no choice.

To our surprise, he actually did well. It only took four people to hold him down, and though he screamed bloody murder the entire time, he was calm as soon as he was allowed to get up. He even got a prize after!

We have most of the results back, and unsurprisingly so far most have been normal. We're still waiting on his chromosomal microarray (looking for deletions or duplications on each of his chromosomes) and fragile x (a genetic abnormality on the X chromosome). Aside from the clotting disorder (which he does have), the one blood test that was abnormal was something called CPK.

CPK stands for creatine phosphokinase. Its an enzyme that your body produces when the brain, heart or muscles are damaged. His levels were slightly elevated but for no clear reason. We were told not to worry about it, it could be nothing.

He had appointments to get his eyes and hearing tested. Both went well, his eye sight is perfect and his ears work just fine!

Then, on July 28th, we had possibly the most important appointment to date. His MRI. Because of his age, Caiden had to be sedated. Totally routine, but we were warned he may wake up a little... grumpy. And grumpy he was. He left quite the impression on the staff when even the morphine they gave him didn't calm him down after he woke up. Eventually he did calm down and we were able to go home, and wait for the results which were supposed to be available later that day.

We waited.

And waited.

And called the doctor.

And waited some more.

Then we got the news on Friday August 1st (for some reason I cant get around August being a bad month).

Global Cerebral Atrophy.

His entire brain is significantly smaller than it's supposed to be and isn't expected to catch up completely. It has either stopped/slowed in growth or shrank. And right now, they have no idea what caused it.

The brain naturally shrinks with age, but this kind of damage is something thats typically seen in people with alzheimers, traumatic brain injury or serious illnesses like MS, none of which he's had.

It puts him at risk for seizures, cerebral palsy, dementia, and aphasia (a condition that hinders you from being able to communicate)- something we're already seeing.

Prognosis varies depending on the cause, type and location of damage, but its a degenerative condition by nature. If his brain has stopped growing, he will likely be stuck at the development he's at now (a one year old). If its growing slowly, we need to get him as far developmentally as we can before his brain does stop growing. If its shrinking... he will continue to regress and the condition would be terminal.

He will need additional MRIs throughout the his life to monitor the growth/shrinkage and to determine what exactly is going on.

Its seemingly rare in children, especially since his entire brain is affected and not just one part, and he has no history of illness or injury. Hopefully, the remainder of the blood work will let us know if there's an underlying condition but for now... all we can do is push him in therapy and hope that his brain doesn't shrink but continues to grow.

"Go to the cliff and jump off..."

I feel like I've been pushed off that cliff, the fall totally out of my control. I'm still a bit in shock. It seems a bit unfair, after all we went through when he was first born, this information was devastating. We started this crazy journey expecting to hear that Caiden has autism. Instead, we found out he has a potentially terminal brain condition. Even if its not terminal for him, he won't be "normal" like you and I. He is considered disabled and as having special needs. He has unexplained brain damage. Hopefully, with enough therapy, he'll be able to lead a relatively normal life though.

" your wings on the way down."

No matter what the future holds for him, he will always be my baby. I don't love him any different than I did before we got the news, and that wont change as we figure out more of whats happening in his body. We will take what comes and learn from it, grow from it, and encourage others to do the same.

Caiden has always had the ability to put a smile on the faces of the people who meet him. He is a happy little boy with a beautifully contagious laugh. He is in essence no different from other two year old boys, he plays with cars, balls and sticks and has an uncanny ability to accumulate dirt. His brain is just a little different, a bit more baby-like than it is toddler.

He deserves love, understanding, and complete acceptance of the person he is and will become.

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