Friday, September 13, 2013

“Death leaves a heartache no one can heal, love leaves a memory no one can steal!

     Well we were devastated to hear about the loss of another life from epilepsy!  Alyssa Oneil, an18 year old freshman in college  told her parents she was taking a shower.  Her parents were already in bed an when they woke the next morning the shower was still running.  She was already gone, she had died from SUDEP.  

     As a parent the thought scares me to tears.  But her parents are doing an amazing thing by raising awareness for Epilepsy!!  It is the #AJO pay it forward program!!  Before Alyssa had passed she mentioned she wanted to try A pumpkin spice latte from Starbucks, so her parents went out and bought the next 40 costumers at Starbucks a pumpkin spice latte and they put #AJO on the cup.  

    We went to Starbucks last night and bought 5 pumpkin spice Lattes for the next five costumers who came through. Braydon was so excited but even more he could explain why we did it.  He has not 100% figured out that people have died from Epilepsy and to be honest I'm ok with that!  But glad B and I could experience it together!!!

     Next time your at Starbucks buy a pumpkin spice latte for someone and have them write #AJO so more people will here the story and learn about epilepsy!!!  Pay it forward, it feels great!!!

Wednesday, September 4, 2013

We must accept finite disappointment, but never lose infinite hope.

All     Well the past week has been crazy busy!!  Braydon had his EMU visit.  Which was a constant EEG with video monitoring.  

     While we stayed B had a blast!!  He got to play Xbox kinect, wii, and lay in bed and order room service!!  What kid would not LOVE that???

     Here are a few pictures of our stay!!

Although the stay was torture to me Braydon had an absolute blast!!!  Which was good for him!!  

     While we were in there a neurologist (not Braydon's) checked on is everyday letting us know the game plan.  At one point word for word she said "there is no real signs of epilepsy".  I did not tell a lot of people that this was said because I did not want to get my hopes up.  

     But I totally got my hopes up!!!  I was convincing myself the past year and a half were a bad nightmare and we were about to be woken up!!  

     Dr. Robinson sent an email stating that I must have misunderstood the Dr in the hospital!!  Which I know I didn't!!  But anyways, he is without a doubt epileptic!!   He was having what they call sparks, which means even though he did not have a seizure there he wanted to.  Which I knew deep down but man I saw that glimmer of hope and I felt in my grasp!!!   It was there, right in front of me!!  

     So my plan you ask???   Throw my self a pity party (quietly at home in my own room where the kids can't hear) with a few tears and then I will pick myself up tomorrow morning and go on with life!!

     What else can we do as mothers???   Nothing!!!!   At the end of the day things could always be worse, not ideal but always worse!!!!   Sooooo if you need me I will be in the bath tub soaking in my pity party!!!