Our Newly Designed Site – Thanks Babe!

Photos of Lola

As Lola grows, so will our site! Let me start by saying thank you to my amazingly talented husband who redesigned the Say Hola Lola website.  I know it may take some time to get used to the look, the function and the overall layout (believe me…I am not the best at embracing change either), but Say Hola Lola has needed a makeover for many months if not years now.  We decided to go with purple as the primary color for the site as it represents epilepsy (it is also the color behind an organization we love and support called VIPS).  While we will continue to leave resources and past blog posts about West Syndrome/Infantile Spasms on the site, we will no longer tag posts with it as...
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A Halt, But We’re Moving Forward

Thanks for contacting Say Hola Lola!

Last Tuesday Lola had her 24 hour video EEG at Riley Hospital for Children. You may remember, Lola had one last year as well so unfortunately we were no strangers to this long procedure. The hope in monitoring Lola’s brain activity was to help give us the reassurance we needed to start a wean off of her anti-seizure medication, Trileptal. Yet sadly, we did not get the news we had hoped for this time around. Last year, Lola was having abnormal spikes in her brain which we were told could potentially lead to seizures. Per the suggestion of her neurologist, Dr. Zimmer, we decided to keep her on the Trileptal for another year just to be safe. Her body was doing a slow wean anyways due to her...
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An Image Changes Everything

“When you’re in your own realm, you have a strong sense of purpose, but there’s something about foreign territory that makes you want to loaf.” This was my Leo horoscope on May 25th, 2012…one day after Dr. Zimmer called with Lola’s MRI results. Are you ready for good, but shocking news? Lola does not have lissencephaly. Yes, you are reading this correctly. Lola does NOT have lissencephaly. Not only does Lola not have lissencephaly, but she doesn’t have pachygyria either. In fact, other than a slight abnormality in Lola’s white matter (a bit decreased), Lola’s brain actually looks quite normal. I hesitated to write because we had to process this new information. We had to give it time to sink in as for the last eight months we...
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Blogging

My lack of posts only mean one thing…I am back to work. My mother reminded me that I have a lot of people following the blog now and while I am honored and thrilled to have such a following, I also feel the pressure of “staying on top of it”. I loved staying home with Rob and Lola while I was on medical leave because it allowed me to not only hang with my family, but it also allowed me to dab into more writing. We started this blog (back then LiveLoveTravelSouls) in Costa Rica as a way to stay connected with our family and friends. I actually never wrote for it because I felt my writing was inferior to my husbands witty charm. But then came a...
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Another MRI and Another Visit

On Wednesday we received a phone call from Lola’s new neurologist, Dr. Jennifer Zimmer. She personally called herself to tell us the MRI CD from Costa Rica was simply too hard for the radiologists to read. This means Lola will indeed have to have another MRI as Dr. Zimmer doesn’t want to give Lola an official diagnosis without it. While we had hoped the MRI was readable as another MRI means Lola will be going under general anesthesia, it will be good to have images from a much more advanced MRI machine. But what I found simply astonishing was that Dr. Zimmer called herself to relay this news to us. I am so glad we sought out another neurologist as Dr. Zimmer is exactly who we were looking...
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