“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!!!

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!!!

Just when I think I have learned the way to live, life changes.

 

We went out and had some family fun today!!  Went to Pennyrile State Park at the recommendation of a friend and we had a blast!!  We hiked!! We did paddle boats!!  We had a picnic lunch!!  Stopped for ice cream on the way home!! It was damn near picture perfect......and then it happened.  The immediate attitude change, dilated eyes, anger, He turned into the highly medicated child that seems to hate life.  Shawn and Braydon literally yelling at each other in the front yard for all to see!!  When will this end???

 

Its amazing to see what battles people are fighting....what you cant see amazes me!!  On August 28th we re enter Vanderbilt for 5 days.  He will be on a 24 hour monitoring unit.  Constant EEG, so maybe we can discover his hidden battle!! Figure out what is going on!!  Here is the Ebook that Vanderbilt sent us for me to show B all about it. 

 

http://www.childrenshospital.vanderbilt.org/emu_tour/childsview.html

 

 

 

I'm doing my best to help Braydon understand and make him a little less angry, but to be honest if I was his age I would be angry too.  Epilepsy has become an everyday part of our life and seems to be a constant reminder in one way or another. 

 

Here are some websites about Epilpesy and what he is currently going through

 

http://www.aboutkidshealth.ca/En/ResourceCentres/Epilepsy/AtHomeandAtSchool/EpilepsyandQualityofLife/Pages/Epilepsy-and-Behaviour.aspx

 

And the best one I have found to date!!!

 

 

http://www.aboutkidshealth.ca/En/ResourceCentres/Epilepsy/AtHomeandAtSchool/EpilepsyandQualityofLife/Pages/Epilepsy-and-Behaviour.aspx

 

 

All journeys have secret destinations of which the traveler is unaware

      These past few months have been ROUGH!!  Braydon has had a TON of seizure activity and to be honest my emotions are not in check.  Between the two of us I feel for ALL those around us!!


     So what to do about it is the question.  How do you fix the impossible, can epilepsy be cured?  Why of course not but it can be managed.  Can my chemical imbalances causes my emotions to be hot to cold in 10 seconds or less be cured??  Why of course not but they can be managed!!  My number one concern is B.  So I have done some research......shocker!!

     I was honored to attend a weekend even at St. Jude Children's research hospital in Memphis TN for the work that LCSH does with them.  Man, what an amazing EYE opening experience!!

Here are just a few things that I saw!!

 

Truly an amazing journey!!  It was so inspirational. 

 

 

 

Everything happens for a reason and so did this trip.  It opened my eyes to many things, including my own son asking my why I spend so much time and effort on kids that I don't know and not on him.  Yes that was HEART wrenching but I needed to hear it.  Trust Braydon is no may in need of me, he is so independent it is unreal, however he is right.  I'm fighting for cures for them but not fighting for his. 

 

      St. Jude fundraising is where my heart is and I WILL NOT give it up, however what can I do to help Braydon more.  In Memphis right next to St. Jude was Le Bonheur children's hospital!!  I was so confused as to why two hospitals were so close together.  Well as I learned more about St. Jude I figured out why.  After I get home I start researching this hospital.  It is the one that will help Braydon, I just know it!!

 

       It has a state of the art EEG imaging unit and they were voted 2013-2014 pediatric neurology Department of the year!!  So I called, I emailed, and I called again until I finally got some one who could help me!!

 

 

        Braydon has his first appointment in Memphis for a consultation to get into the Neurology department at Le Bonhuer!!  We go September 27!!  This has greatly changed my emotions!!   I still need to get me figured out but this has really really helped!! 

 

 

 

    Go check out what I hope will be Braydon's saving grace and will help him get these seizures under control!!

 

http://www.lebonheur.org/our-services/neuroscience-institute/comprehensive-pediatric-epilepsy-program/index.dot

 

 

Meet his (cross your fingers) new Doctor

 

http://www.lebonheur.org/find-a-doctor/physicians/bhattarai-paras.dot

 

 

 

Wish us luck on this next journey!!



The world breaks everyone, and afterward, some are strong at the broken places.

    I write an awful lot about my kids on here and today I am writing about me.  So here goes.


     Last year I was diagnosed with Bipolar 1 disorder.  There is a spectrum of Bipolar disorder and I fall on the lower end, however I have been diagnosed.  I was diagnosed by a therapist who was unable to medicate me properly so he handed me over to someone who could.  

    I have been taking two medications everyday to balance me out.  The "Dr" who was treating me has never spent more than 5 minutes with me and never really spent the time or cared to take the time to talk to me.  Roughly 2 weeks ago I abruptly stopped taking my meds and went through horrible withdrawals.  I was shaky, tired, sweaty, nauseous, and the list goes on.  Just sucked in general!! 

     I am over the withdrawals but now I must figure out what step is next.  I without a doubt need something to balance me, that is not the question.  But what I do need to figure out is what doctor will be right for me, what medications, and what is best for me.  Shawn is trying so hard to be patient but to be honest, he tends to make things harder without knowing.  God love him he constantly picks the worst possible times to talk about things. 

    My fears are I have passed this horrible thing onto my children.  I see my tendencies in both of them and scares me so bad!!  I pray everyday they will NEVER be like me.  I hope those prayers are heard over all the other ones I have dished out over the past year.

    I am the luckiest person in the world in my support system.  No one judges me, or questions me.  They all listen and only give an opinion when asked.  Today I am finding a new doctor who can properly take care of me.  I am really hoping I can get in sooner rather than later. 

    Anyways to those of you who had no clue.......SURPRISE

    To those that have helped.......Thanks!!!

Where there is no struggle, there is no strength

One week we were doing great and the next...not so much!!!  Braydon has had a lot of seizure/seizure related activity going on.  I'm trying to play it off like it does not bother me but in the end I'm worried!!  Is this the start of what the Dr's said could be YEARS of hormone related seizures!!  Or is there something going on??  I'm really starting to get concerned!!  I'm trying really hard to not sweat it, but it's just not working!!  So frustrating!!!  Been talking very closely with his neurologist and hopefully she can help!!  Going to get some sleep and hopefully not stress it and everything will be ok!!  B is in great spirits and seems to act like it all is in big deal!!  So I can too right???

Fall seven times, stand up eight.

 

 

For people with epilpesy they miss time.  They lose portions of their lives at any given point.  Luckily Braydon has only lost minutes, some have lost hours, maybe even days.  For whatever reason this saying spoke to me. 

 

 

To think all that Braydon has gone through in the past year has brought him to Camp Carpe Diem and that has brought him soooo much joy and happiness.

 

This is Braydons path in life, this has brought him to this point. 

 

 

Thank you to Childrens Healthcare of Atlanta, Epilepsy Foundation of Georgia, Camp Carpe Diem and Camp Twin Lakes!!  You are amazing!!

 

FYI- he had the time of his life yet again at camp!!