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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Just Living

Over the past couple of weeks, I have made a valiant effort to sit down and write a post. But each time, I had to think and think about what to write about. This is rare for me because as you all know…I always have something to say. This blog started out in Costa Rica. It was originally called “Live Love Travel Souls” and it was pre-marriage and pre-Lola. Rob and I thought we were going to be trekking around to various adventures and the blog would be a great way to share our newfound lives with our family and friends in the States. Then I became pregnant so I was prompted by Rob to write about my pregnancy in a foreign country. Then we got married so...
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A Quick Catch-Up

I’m neglecting this blog I know…forgive me. I have much to say, but virtually no time to say it. So here is an update on life with the girl. Thanksgiving Thanksgiving was perfect because it was low-key. We ate mucho, we laughed with friends and we simply relaxed. It was the definition of what Thanksgiving should be. No pressure to do anything except for bake the perfect apple pie. VIPS-Bloomington Holiday Party I was ecstatic to receive the invitation to the VIPS-Bloomington Holiday Party as I knew my mom would be in town from Costa Rica. I tell her almost daily about how much VIPS has changed our lives so I was looking forward to the opportunity for her to meet our VIPS family. So she, Lola and...
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Posy Lane

When we first began this blog, it was simply a way to stay in contact with our friends and family as we embarked on our journey in Costa Rica. Little did I know, we’d get pregnant, have a baby and that amazingly awesome baby would have some challenges in her life. What once began as silly scribblings about life has turned into not only a place to document Lola’s extraordinary existence, but it has become a resource for people from all over the world. Parents looking for hope in the darkest of days when their beloved child has just been diagnosed with West Syndrome, mothers yearning for a virtual friend who can say in all honesty “I know what you’re going through,” and others who just admire watching...
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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...
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