The Results

On Monday morning, without hesitation I called Lola’s neurologist in hopes to find out the results from her 24 hour Video EEG (VEEG). If you haven’t noticed, I am not a very patient person when it comes to my daughter and the healthcare industry. I want her to be as much of a priority to others as she is to me and I’ve had to realize that there are just certain things (like test results) that can’t be rushed. I spent the morning at work anxiously waiting for the call and it finally came…but unfortunately it was Dr. Zimmer’s nurse and not Dr. Zimmer herself. I’ll come back to why this differentiation is so important. The nurse said she had the preliminary results, but Dr. Zimmer was still...
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The Anat Baniel Method

A couple weeks ago, I was moseying around the “Special Needs” section at Barnes and Noble. While I don’t exactly know what Lola’s special need is, I was up for a bit of insight and what better place to look than at books. A midst the overwhelming stacks of books about Autism – that seems to be the most written about diagnosis in the special needs world, I found a book crammed in between. It was called, Kids Beyond Limits – Breakthrough results for children with autism, Asperger’s, brain damage, ADHD and undiagnosed developmental delays. Perfect, I thought. Lola is now classified as a child with an undiagnosed developmental delay since her lissencephaly diagnosis was retracted. I read the back of the book and I read a couple...
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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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“Normal” Never Sounded so Good

Well first off we have BIG news to share…Lola’s EEG came back normal! Thankfully there were no signs of seizure activity which means that either the medicine is working or Lola is simply not having seizures. It is too soon to wean her off of the Trileptal as seizures could still do significant damage, but the fact that she is still seizure free is an excellent sign. We were told the doctor would call if she wanted Lola to have a 24 hour EEG to determine if Lola is having seizures as she sleeps, but the fact she hasn’t called yet leads me to believe that Lola is simply living a seizure free life. We are incredibly grateful for all of the extra love and prayers you sent...
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The Tour and the Neuro

Yesterday Lola and I went with a close friend to visit the Indiana School for the Blind and Visually Impaired (ISBVI). I was warned up front that many times emotions can get the best of parents (mothers especially) as the school has children on all different levels of the visual spectrum. I hesitantly thought about it and decided that touring the school was indeed something I wanted to go through with. While I have my ups and downs regarding Lola’s disability, her well-being and future are always what weigh heavy on my mind. Driving up, I felt jitters of excitement. I didn’t expect to feel as drawn to the place as I did. It was established in 1847 although it moved from the original downtown location when the...
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