Friday, March 26, 2010

I am aware!

Today is epilepsy awareness day and I never in a million years thought I would have to be dealing with this.

Emily's form of epilepsy is labeled as catastrophic. It is also rare. Some sites say 1 in 2500 are diagnosised.

Most of the time they find a reason infantile spasms begin.

Genetic, traumatic birth, premature birth, or different types of infections in the spinal cord or brain are a few of the reasons.

So far we have done 3 rounds of genetic testing, including a lumbar puncture and all have come back normal. She was delivered via c-section at 38 weeks and she just had her very first fever in the hospital after surgery a couple weeks ago.

We cannot find a reason for Emily to have this horrible disorder.

There are many other theories as to what might cause this such as vaccines and I have even read somewhere stress. I am not sure I believe those things though.

Emily's prognosis is poor. She has had brain atrophy (shrinking) and is delayed. We don't know if these things are caused from her seizures alone or if it is indeed a genetic issue that the doctors just have not found yet.

It is hard to watch my almost 10 month old not sitting or crawling, barely able to hold her head up, or be able to say mama or dada.

I know that I am partial but Emily really is a beautiful baby. She does not have one blemish or birthmark and her eyes sometimes seem green and other times blue. She has the most perfectly shaped lips that I could just kiss off and my grandma's little upturned nose.

I pray that one day Emily will be seizure free. I also pray that the seizures she has had have not caused too much damage. I long for her to run and play and sneak my fingernail polish and write on the walls!

God gave me Emily because He loves me. That I know. Why she has this horrible disorder is something that I just can't figure out. I trust and have faith that one day we will figure it out. Until then I have a beautiful, amazing blessing that has epilepsy, but epilepsy does not have her!

So I am asking all of you to pray for a cure not just for Emily but for all the people suffering with this nightmare.

All of these pictures where taken before her diagnosis. I will get our picture of us wearing purple up later on today, she has had a very rough night so far and is asleep from all the meds. Please also pray that we don't have to go back to the hospital.

Thank you all so much for your support!!!


  1. Oh my gosh...I love seeing those pictures again... And you may be partial, but I totally agree - Emily IS just the most beautiful little Princess!!!

  2. your baby is so beautiful. i'm a follower of rebecca jo! here is my purple post.

    you are in my prayers. much love!

  3. I wore my purple for Emily! I was thinking about her all day. I hope all is well...I did hear from the office she had a few more seizures. I am hoping and praying the diet and medication helps. You are all in my prayers. Take Care!