Aliyah VS Infantile Spasms won 1st place in the Midwest Region of the Epilepsy Foundation Campaign

The Epilepsy Foundation started the "Now I know" Campaign.

Aliyah VS Infantile Spasms won 1st place in the Midwest Region of the Epilepsy Foundation Campaign back in January 2013

They asked "When it comes to epilepsy, what do you know now that you wish you knew sooner?"

This video was made to share some of the things I wish I knew when my baby was initially diagnosed with Infantile Spasms, a rare and severe form of Epilepsy.

I did this video in one night! I messed up on the campaign's name!!!
I know how embarrassing :/ But that was the name my friend informed me of :( Oh well I just wanted to make this video to help in any way.

If you are planning to make one please let me know!!!! So I can share with other IS parents, especially the ones that just found out.

Watch the Video

Aliyah's 4th Birthday.. (will upload videos later this month)

After my good meltdown the night before her Birthday, the next morning we sang to our birthday girl! Prepared for her Minnie birthday party! I cannot let my sadness ruin my beautiful little girls big day, she turned 4! I cannot allow Aliyah to see me cry. There is no reason why she should ever see me cry. She is so tender, serene, sweet, gentle. Her world should be full of happiness, my only duty as a mom is to make sure she is happy.



Aliyah doesn't understand yet to look at the camera for photos, which is why the picture above is gold to us! Sometimes she does say "CHEESE" because she hears everyone else saying it. :) 

8/5/13 3days/2night Video EEG

In April 2013 overnight Video EEG report Aliyah had 3 silent seizures, also known as subclinical seizures there was also talk about partial seizures... Aliyah has had those for a while too.  You cannot see the subclinical seizures, only through an EEG is it possible to report such seizure activity. They told me these type of seizures are not good for a growing child to have, makes learning difficult for the child. This was while we were only on Sabril (Vigabatrin)... We asked our neurologist if we could get her off of Sabril because it was going to be a year of her on Sabril and we were concerned about it damaging her peripheral vision.

Dr. Bergqvist at Children's Hospital of Philadelphia suggested a good replacement medication is Lamictal.

We are now entirely off of Sabril and on full dose of Lamictal. We were only suppose to do an overnight EEG, but right before Aliyah leads were being "glued" on the EEG tech saw what might have been a subtle myoclonic seizure...... Which is why her EEG lasted 3 days and 2 nights. They were trying to catch another myoclonic seizure, but they didn't..... It was mentioned it might have been her body reacting to having no Sabril in her system, regulating ...

But other than that Aliyah's EEG looked promising, this time she had no Subclinical seizures! But her EEG showed constant discharges.... meaning her brain is in a constant "seizure mode", they explained to me this should not hurt Aliyah's learning potential, it just shows her brain is very prone in having another seizure.

Our instructions were to log and report any more seizure activities.

Yes... I still get emotional on Aliyah's Birthday... A reminder I am racing against time for Aliyah.

August 2 , 2013 "So Birthdays are really difficult for me to handle, I am at my most fragile state of mind because I feel as though time is ticking and Aliyah has not made as much of progress as the typical children, and with a new year acquired the gap keeps widening making it even more imposible for Aliyah to catch up.

On her birthdays I realize Aliyah, well the Aliyah I would of have is not coming... Epilepsy took her away from me.

I will never be at her ballet recital. She won't be able to speak Spanish with me or learn Latin. The lost language which is the root of many other languages which would have facilitated her journey to try other languages. Or let me teach her how to play the viola or flute. Or take advance salsa classes.  Let me set up her sweet 16 ..let me say "no boyfriend untill your out of college"..pay for her wedding, let me take care of her children... Epeilepsy took all of this from her and her mother... Even before she was born I planned her life, i know god must have laughed at my plans...

I love my sweet and tender Aliyah but I cannot help it to mourn for the Aliyah I would have had.. Epilepsy did too much damage to her brain...I feel as I lost a child, I know that sounds ridiculous... But I get this way on Birthdays.. Healthy little girl.... Everything went great until her seizures started.. A few a day then hundreds a day.... They were so subtle.... They were not the traditional convulsions... Epilepsy disguised itself so well.. We might of missed Aliyah  window of opportunity.

I know I have issues.. But I could have sworn I thought I was over this I thought I accepted the fact I have a beautiful special needs child.

I guess i am not there yet.. But i wish i can get there because this feeling i have right now is killing me, i hate this.. I feel as I have no one to really talk to about this. I know you ladies are their but i guess its easier writing and letting go of ky thoughts here... Getting this off my chest. I just want this feeling to go away.... I just don't do well with birthdays"