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...
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...

Blogging

My lack of posts only mean one thing…I am back to work. My mother reminded me that I have a lot of people following the blog now and while I am honored and thrilled to have such a following, I also feel the pressure of “staying on top of it”. I loved staying home with Rob and Lola while I was on medical leave because it allowed me to not only hang with my family, but it also allowed me to dab into more writing. We started this blog (back then LiveLoveTravelSouls) in Costa Rica as a way to stay connected with our family and friends. I actually never wrote for it because I felt my writing was inferior to my husbands witty charm. But then came a...
Continue reading...

Improvements and Much “More”

Lola girl is finally over her first cold and the second top tooth is ever present which means…our happy baby is back! [column size=”1-3″ last=”0″ style=”0″][/column] [column size=”1-3″ last=”0″ style=”0″][/column] [column size=”1-3″ last=”1″ style=”0″][/column] We have witnessed such changes in Lola this past week. There is a level of awareness that is emerging in really all aspects of her life. She is becoming aware of her body and its movement. She watches her hand as she waves it by or she’ll look at her toes as they wiggle. The other day at lunch, I snapped this photo of Lola observantly watching as her finger tapped the table. She’s also much more purposeful as she plays. Of course she still bangs everything in an effort to hear a noise...
Continue reading...

In All Honesty

Last night my mind wandered off to a place I hadn’t allowed in to go in a long time…I began to think about the far distant future for my Lola. Yesterday Rob, Lola and I went to the Developmental Disability building to fill out an application for a waiver in an effort to make sure Lola is taken care of as she ages. The waiver offers many services for the developmentally disabled such as home assistance, home modification help, entrance to assisted living homes, wheelchairs and much more. The current waiting list is 10 – 12 years as there is no money in the State for these services, but if something were to happen to Rob or I, Lola would sort of be grandfathered into the system if...
Continue reading...