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...
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The New New Neuro

Yesterday Rob took Lola to go see a new neurologist, Dr. Jennifer Zimmer, out of Riley Hospital for Children. You may remember, we were not impressed with the last neurologist and decided to find someone who showed a genuine interest in the care of our daughter. While I was not able to attend due to work commitments, Rob gave me a full detailed report of the appointment. Dr. Zimmer began the appointment by thoroughly examining Lola. The usual measurements were taken (weight, height, head circumference) and then she took a close look at her spine, her feet, her abdomen as well as her eyes. She went through a detailed history of Lola’s background with Rob and asked numerous questions about her care in Costa Rica, the tests that...
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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...
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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...
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Therapy Began

I had been anticipating Tuesday since we said our good-byes to Moises (Lola’s Costa Rican PT) this past November. I worried Lola would fall behind without the help of Moises and Melissa as we simply didn’t know what was to lie ahead in her future yet we knew we were seeing something awaken within Lola thanks to their team. So the long drawn out process it took for Lola to get approved for First Steps was agonizing. But then something happened I didn’t expect (and shame on me for not thinking so)…Lola began to blossom developmentally without the help of any therapist or team. She just started to get it. She taught herself how to sit up on her own, how to sit up from the lying down...
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