Max's first diagnosis was that of epilepsy. We hadn't heard anything of metabolic diseases, or neurosurgery, or special needs equipment, or therapies. We just knew that our baby was having over 200 seizures a day. He had a severe form of infantile epilepsy called infantile spasms.
Throughout his life, it's the one thing we feel we have had the least amount of warning or control over. The icky seizures can just pop up at any moment...and then they decide when to stop...unless they don't, then we have to go to the hospital to have the hard hitting medicine knock him out to stop them.
We been cautious to mention that Max hasn't had a seizure since last September. It's the longest he's gone in his life, seizure free. It had come such a "normal" part of his life, of our lives, that it has been weird not waking to the irregular breathing, or the jerking stiff body of our son in the bed next to us.
This Sunday, we went as a family to do the Epilepsy Foundation of Colorado's 5k walk for Epilepsy. We raised a little money for the foundation through Max's team, Monster Max's Strides for Epilepsy. They are a good organization that helps kids, adults, and families with education and support on epilepsy.
It was a pretty hot morning, and I wasn't sure how Max would handle it, but, he did great!
It was held in beautiful City Park in Denver.
My sister and niece joined us too!
Addie wanted to "run for Max".
We finally made it around, what felt like much more than 5k's! But, maybe just because it was hot!
And Max's finish was pretty special too. It always makes me misty eyed seeing him do new things in life...like finishing his first 5k.
He's on his way to running marathons.
my name is Jenna and i came across your site. U are an amazing, courageous, strong and determined fighter. U are a brave warrior, smilen champ, inspirational hero, super trooper, and a tough cookie. I was born with a rare life threatening disease. I love it when people sign my guestbook.
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