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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The MRI

This morning Lola had a MRI at Riley Hospital for Children in Downtown Indianapolis in hopes to get clearer images so that an accurate diagnosis can be made. While the actual diagnosis doesn’t change much of anything in regards to her treatment and therapies, it is still necessary to know. Lola’s neurologist in Costa Rica diagnosed her with Isolated Lissencephaly in the occipital lobe. The first neurologist Lola saw here in Indy thought it was more Pachygyria than Lissencephaly. And Lola’s current neurologist simply said she wasn’t going to put her name behind any diagnosis without better images. So a diagnosis needs to be made which is why we agreed to subject Lola to another MRI. The girl handled it like a champ though. In fact, I think...
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Developmental Pediatrician

Today Lola had an appointment with Dr. Tom Lock who is a developmental pediatrician at Riley Hospital for Children. At this point in the game you sort of go into these appointments with little expectations as it comes as no surprise that Lola is developmentally delayed. But per the suggestion of one of Lola’s therapists, we thought it would be a good idea just to hear what he had to say. Seeing that we blew Lola’s general pediatrician away with our detailed knowledge of her conditions, we felt it would be nice to have someone understand the lingo we were speaking. Unfortunately we had to wait almost an hour for Dr. Lock to enter in which Lola was not in the mood to be playing anymore. She was...
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