Gettin’ Messy

I should be posting about what a rock star my kid is and how she continues to amaze me every single day, but truth be told…I’ve got some serious house hunting to do. And besides…you all know how cool she is! Just a few pictures to share this week and I’ll be back soon with a post about Lola’s new “Method” therapist, Eli. Lola’s ability to feed herself has truly begun to take off in the last couple of weeks. Rob and I are learning that in order for Lola to learn how to feed herself different textures and with different tools (aka: spoons and forks) we have to be willing to let her get a bit messy from time to time. We’ve explored various finger food textures...
Continue reading...

Yes – Neurologists Really do Smile!

Just when I was starting to get into my groove on Wednesday’s, I have already had to change up my beloved schedule. While I normally work on Mondays, I took the day off so I could be at Lola’s neurologist appointment with Dr. Zimmer. I have finally come to terms that I am indeed the crazy mother who must attend every single neurologist appointment…they mean that much to me. And while I sincerely trust my husbands ability to tell me “word for word” what Dr. Zimmer said, I just know that my worried mind rests much easier when I hear the words myself. But come on…it’s not like it is just any appointment. It’s not to check out a diaper rash, it’s not a therapy session and it’s...
Continue reading...

Slow and Steady

My apologies for not keeping up with life with Lola. We recently found out the results from Lola’s first round of genetic testing and those results came back normal. This should be good news, right? Well, it should be good news and I mean it is good news, but what had me in a stricken panic all last week was what has haunted me from the very first time Lola had her first seizure…the unknowns scare the hell out of me. This news rocked me emotionally into someone I hadn’t been in a very long time. In truth, I was a mess. I began to Google, I sobbed uncontrollably, I looked at Lola as if she were a science experiment trying to pinpoint what exactly her diagnosis was...
Continue reading...

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...
Continue reading...

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...
Continue reading...