Epilepsy Awareness #purpleforlola

On March 26th, we participated in an epilepsy awareness effort called Purple Day. Purple Day began in 2008 when a girl named Cassidy Megan had an idea to wear purple in an effort to raise awareness about epilepsy. Megan had struggled with epilepsy herself which is why she wanted to educate people about epilepsy, she hoped to debunk epilepsy myths and she simply wanted to start a conversation about epilepsy. It started out as a grassroots movement, but quickly turned into an international day of epilepsy recognition. Since epilepsy affects Lola’s life, we wanted to participate and we were blown away by the overwhelming amount of support we received! Friends, family and strangers from all over the country (and in Costa Rica!) wore their purple to help spread...
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Happy Birthday Lola!

Image Credit Dear Lola, Today, my darling sweet girl, you are four years old. Four years ago, you came into this world with your own agenda — to make it a better place. And you’ve done just that. You inspire strangers and impress everyone who knows you. You have been handed challenges, but the way you gracefully navigate through them without fuss make your challenges seem unimportant. You are a fighter. Your ability to persevere even when life knocks you down is a trait you developed on your own. I wish I could take credit for this, but lord knows Mommy isn’t as strong as you baby girl. But you make me stronger each and every day. You help me realize spontaneity is an unappreciated characteristic of life....
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NR2F1

NR2F1. This combination of five letters and numbers meant absolutely nothing to me until a few weeks ago. Now those five letters and numbers have given us the answer to, “Why Lola?” They are the sole reason why the course of Lola’s life changed so drastically. They are the letters and numbers making up a long awaited diagnosis. When I first received the call from neurology informing me a diagnosis had been found, I was elated. I quickly called Rob, my mom, sent out texts, posted on Facebook and Instagram. I was ecstatic. We finally knew what exactly we were up against. The main symptoms were optic atrophy (Lola has CVI and small optic nerves) and intellectual disability (she is globally delayed). We would have to keep an...
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If You Have a Child, Please Watch These Videos

Today I’m sitting here on the couch with Lola sprawled out across me. She’s home sick for the second day in a row due to the annual ‘flumageddon’ virus. She gets it every year and this year is clearly no different. While I’m sad she isn’t feeling good, I’m elated with one important aspect of her illness — she hasn’t had any seizures. For most epilepsy sufferers there are underlying causes that can trigger seizures. For Lola they are generally illness (fever or not), physical or cognitive developmental leaps, overexcitement, weight gain, and excessive tiredness. Yesterday marked one week since Lola has had a seizure. While I celebrate this one week seizure free milestone, I am especially hopeful the medicine increase is working because little lady is pretty...
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And Just Like That

Its been two days since I posted about Lola’s one month seizure free milestone and as I said before, you just never know when a seizure will emerge. This morning just happened to be that day. Something seemed off about Lola this morning. She was unusually cranky, her vision was erratic (running into tables, large chairs, etc), she was extra mean to her brother and she was moaning/crying non-stop. This is a day when communication with words would have been stellar. We had no idea what was wrong. I hear parents complain that their kid talks too much and I want to punch them in the face. Too harsh? But seriously, I would have given anything for my daughter to have been able to articulate her frustrations this...
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