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...
Continue reading...

Celebrating Me is Celebrating Being Lola’s Mom

For me, Mother’s Day began on Saturday this year as I was scheduled to work on Sunday. Really, I feel like it’s Mother’s Day every day as my wonderful husband is always sure to make me feel special no matter if it is a holiday or not. Saturday felt like a crisp fall day rather than teetering on the edge of spring. It was chilly and the cloud cover left the sunshine to remain a mystery. Regardless, we bundled up and headed to town to join in on the festivities at Celebrate Irvington Day. The tiny streets were lined up with artists, local businesses and everyone in between. There was a craft sale going on which is where you could find me a good chunk of the morning....
Continue reading...

He’s Not Worried

I just got off the phone with Dr. Luna and he did not seem overly concerned about the seizures. I explained that Lola’s daily dose of Trileptal was 2 ml and asked if perhaps she needed a stronger dose given that she now weighs more than she did five months ago. He agreed that her dose should be upped and put her on 4 ml each day. He said to call if the seizures continue, but hopefully this will work. Please, please let this work....
Continue reading...

Our long awaited trip to the doctor

4:45 pm felt like it would never come yesterday.  I had been incredibly anxious to see Dr. Luna so we could discuss what was next for Lola’s treatment.  I was literally counting down the minutes and tried everything to keep my mind occupied.  I knew this visit would essentially give us a glimpse in what to expect for our little girl’s future.  I even decided to put some red lipstick on to make myself feel better. Since Dr. Luna’s office is in San Jose and because it was a Friday evening, it took us well over an hour to get to his office.  I felt like I was going to jump out of my skin as the clock ticked past 5:30 pm… the time we were supposed to be at...
Continue reading...