A Long Lola Update

It has been just over a month since Lola began attending the Indiana School for the Blind and Visually Impaired (ISBVI) and we couldn’t be more thrilled with the progress we are seeing in our little girl. Prior to attending ISBVI, Lola had been in a three day a week, couple hour a day program. While she was learning in that type of environment, we could tell she was craving more stimulation which is why we chose ISBVI. Lola attends the school five days a week for the entire day alongside four other kiddos in her class. She is in a play-based classroom yet there is also structured learning. They focus on Lola’s abilities not her disabilities which means the classroom setting is challenging but not overwhelming for...
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Bringing Sebastian into the World

×This is a day late as life just became too busy to get it published. Exactly one month ago today, Rob and I dropped Lola off at the sitters and told her she’d be a big sister soon. We kissed her goodbye and as we left tears returned to my already flooded eyes. I was just a couple days shy of being 41 weeks pregnant and per my doctor’s advice (for reasons I’m choosing to remain private about), I was going to induce labor. The decision had been made the day prior and for some reason, it wasn’t sitting well with me. While it was ultimately my choice, the thought of forcing our unborn child into the world made me feel somewhat guilty. I pictured our child all...
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A Look Back

And just like that another year has passed. I have no complaints about 2013 as it was a good year to our little family. In truth, no year should ever be banished as a “bad year” because with all the bad always comes good. Experiences are learned from, lessons are always taught, tears may be shed but laughter is never far behind. If motherhood has taught me one thing, it’s that you can’t control everything. You can only do your best to cherish the good moments and blossom with knowledge and strength through the challenges. It may have taken an incredibly special little girl to help teach me this – and believe me, I’m still a work in progress – but I’m trying and I’ll keep reflecting on...
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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

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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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