Monday, March 26, 2012

Purple Day...

Today is Purple Day.  The day to stop and wear purple to raise awareness for those living with epilepsy.

The Seizure Monster made it's appearance early in Max's life.  Of course, there's no way for us to know for certain at this point, but there has been speculation that Max was having multiple seizures a day even while still inside of me growing and developing.  What I thought were near constant "hiccups", may have been his malformed brain firing off, making his forming body jerk.

As he was being born, he came out, right arm up, and silent.  He was breathing, although very shallowly. We know now he entered the world seizing.  That has always been Max's type of seizure, it's how we first noticed something was wrong, right arm up, eyes to the right, then up went his legs.

At first I thought it was he was cold.  He was an October baby.  Then I thought he was getting startled...a lot!  Then I thought he was just really tired.

In reality, he had a severe form of epilepsy called Infantile Spasms.   Max was having over 200 seizures a day, because of a portion of his brain not forming correctly.  At four months old he had that part of his brain removed surgically, and it took a year after that to get his seizures under control.

For years we've fought with the Seizure Monster.  On our move back from California, Max's brain had a storm brewing.  He wouldn't eat and therefor, wouldn't take his medicine.  We knew by the time we got back to Colorado he needed to go in to the emergency room for his seizures, as he was into status epilepticus.  He couldn't stop having seizures.  The following years we fought that Seizure Monster, throwing medicine at it, knocking on wood to keep it away, praying and hoping it would forget where we lived.

Eventually, it seems, we just needed the right combination of medicine, and a g-tube to regularly give Max his food and medicine.  He has been seizure free for almost two years.  It seems unreal.  To live with that monster lurking under Max's bed, waiting for him to drift off to sleep each night to strike as soon as we all found our sleep.  Now, it only comes around when Max is very sick, or in a lot of pain.

Max's epilepsy will not likely go away.  There is no cure.  His brain was not formed correctly, but he has been able to show that Seizure Monster who is boss.

Which is why today we've asked all of our friends and family to wear purple in support of Max, and all his buddies who have lived with epilepsy.  And we thank you all who have showed your support through purple, or smiles, or pictures and notes on his Facebook Page.

No comments: