Calm Amongst the Chaos

August 28th 2002

Welcome to the world Princess LilyAnna Blu! Only after 29 hours of labor your beautiful little self came into the world, pink and crying. We had no idea what you had in store for us.

Only a few weeks later we found ourselves back into the hospital doing test on my baby girl that I had only heard of on Medical shows

And that first year was more of the same

2 months
7 months
Even though your first few years we spent aggressively searching for a diagnosis and a way to tame your uncontainable seizures, we still had fun!

First birthday Lily had Keto Cake!

At 11 months you were diagnosed with Infantile Spasms and at 13 months we treated you with what I think was one of the worst things we had to do to you. We gave you shots every day of the steroid ACTH. This picture explains how you felt and how your mommy and daddy felt. Grumpy!

But we still did fun things and tried to make your quality of life the best we could!

Trips to San Diego!

And Daddy setting up your red riding wagon just for you, and of course cute clothes!

Your second birthday in our new house was fun!

Your second year was very eventful. You were a flower girl! That was fun.

But your uncontrollable seizures had us in a tailspin. We took you to a specialist in San Diego and he ran lots of tests on you.

And the most heartbreaking decision we ever had to make, and one mommy is still unsure was the best thing for you and something we wish had never had to happen. You had to have brain surgery on Jan. 31st 2005. (unfortunately unsuccessful)

I cry still thinking about all you have had to go thru in your little life.

After San Diego and the surgery Mommy and Daddy decided to lay low on or diagnosis search and to accept seizures as a part of your life.

On March 17th 2005 you became the best big sister ever!

Then you turned 3 a few months later and as a strange turn of events, we finally found a great medication combo that helped control your seizures. Although never seizure free, life got much easier.

Then preschool at the best preschool ever! The Foundation for Blind Children! The bus came to our house and picked you up!!

You had the best teacher for two years and made some really good friends there (as well as did Mommy!)

You finished your first school year showing off your skills!

Here you are on your 4th birthday

And Easter that year

Disney World was a blast!!

You graduated from FBC in May 2007 and that was a little sad for all of us.

You had another Video EEG after a couple years

You started Kindergarten before you were even 5!

Your 5th birthday was fun at Peter Piper Pizza!

In October 2007 we went to San Diego with family friends and had a great time! You rode this roller coaster 3 times and kept asking for more!

Gorgeous girl!

This past year you started Hippo therapy, kept up with all your other therapies (OT, Speech, PT and Music), finished Kindergarten, started 1st grade and just had a super fun birthday party at Grandma Nancy’s with all your friends and family and you celebrated your actual birthday with cupcakes in your class.

Even though nothing has been easy for you, you still try. You still smile and you still warm my entire soul with your just being you. I love you more than I could ever say with simple words. You are my first born beautiful daughter who made me the woman who I am today and I will forever be indebted to you and if I could ever teach you an eight of what you have taught me I can die a happy woman.

I love you my LilyAnna Blu! You and I are one heck of a team!