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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What Life Means Today

Some years ago, this blog began as a way to stay connected with family and friends while Rob and I embraced our new life in Costa Rica — it was actually called Live Love Travel Souls. I then became pregnant with Lola so I thought I’d blog about the healthcare system in Costa Rica and raising a baby in a foreign country. And then over a course of time, life changed drastically when Lola was diagnosed with infantile spasms (a rare form of epilepsy), cortical visual impairment and global developmental delays. The blog morphed into Say Hola Lola. When Lola began to have seizures, countless medical appointments, endless diagnostic testing, a daily regime of medication and therapies to help her get strong both physically and mentally, I scoured...
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Lil’ Melon Baby Knee Pads Giveaway!

Lil' Melon Baby Knee Pads Giveaway

From the moment I found out I was pregnant with Lola, my maternal instincts quickly kicked in. My new job in life–to protect. I watched the types of food I ate, I didn’t allow myself to be around smoke, I didn’t take any medications that weren’t prescribed, I did everything in my power to protect my growing child. That’s what we do as parents, right? We love, we nourish, we care for and we protect our children. That need to protect has evolved into various forms. When Lola began to roll, I made sure she was never close to an edge. When she began to eat solids, I made sure her bites were small enough so she didn’t choke. When she began to crawl, I began to baby-proof...
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