Our Newly Designed Site – Thanks Babe!

Photos of Lola

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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 Lola no longer has West Syndrome…she now has a more general form of epilepsy.   I dedicated much of Lola’s life learning about West Syndrome therefore, while I’m no expert, I still welcome any questions regarding West Syndrome.  We are also leaving the blog posts about Lissencephaly and Pachygyria as well because, just like West Syndrome, I immersed myself with knowledge about those conditions.  We now know Lola does not have Lissencephaly, but that information will stay on our site because it could help someone else. If you scroll to the bottom of the website, you will find this information under “Popular Categories”.

The site is still and will continue to be a work in progress.  We want the site to serve not only as a blog about Lola, but also a place where people can get resources and gain insight to the medical conditions Lola has had to face.

The site is still and will continue to be a work in progress.  We want the site to serve not only as a blog about Lola, but also a place where people can get resources and gain insight to the medical conditions Lola has had to face.  I know I was devastated when we got the West Syndrome diagnosis and I got to relive that devastation when we heard the words Cortical Visual Impairment, but I want to show the world that those diagnoses do not define your child.  They only suffocate your child’s abilities if you let them.  I hope this site gives others inspiration, resources and tools to help navigate through life with a special needs child.  I know when Lola was first diagnosed, I needed current information, up-to-date pictures, something that showed me that she could go on to live a ‘normal’ life.  And while our life is by no means normal, it is our normal and it’s a pretty amazing life.  That’s the hope I needed when our journey in the special needs world began.  I didn’t have the strength to simply find it within myself and you might not either and that’s OK.  It’s always easier to embrace the unknown when someone has been through something similar.  I get that.  Believe me, I get that.  Looking back to the beginning of our special needs journey, I never thought I’d be one giving advice or offering glimpses of hope, but here we are almost three years later and while not all days are filled with butterflies and rainbows, I have to say life is pretty darn good.

Now the rest of the site is pretty self-explanatory.  If there is something you’d like to see more of on the site, I always welcome comments and suggestions.  I will warn you…I’m due to have our next child in just two weeks and I want to embrace that invaluable time with my newborn.  So if you don’t see a post, just know that I’ll be back to blogging as soon as life settles down.  You can always follow us on Facebook to see quick updates and pictures of Lola.