Thursday, November 28, 2013

Be thankful for what you have; you'll end up having more. If you concentrate on what you don't have, you will never, ever have enough.

So today is the day we call can remember the things we are thankful for!!  I'm so excited to share with all of you the things I am thankful for!!
1) Family- Without them where would I be?  Shawn is the best husband.  I want to kill him on a daily, but at the end of the day I am spoiled by the amazing man that he is and tend to let the little things annoy me.  Braydon and Claudia are the very best children in this world!!  They have the best personalities and I love the young adults they are turning into.  My mom and Step dad who always are there for me and can make me laugh like no other.  My mom especially, she can always make me smile!! My mommy is my everything, I love you mums. My sisters who I can call with any problem and they will listen or tell me when I'm being ridiculous!!  My mother in law and My Father in law-AMAZING they take my kids when I need help and they are always the first to jump in and help us when we need it!!  And that's just the family that surrounds me.........I'm truly blessed!!
2)  In todays economy and job market your an idiot if your not super thankful for your JOB!!  With my job you never really know what your going to get!!  literally- to beans up the nose, to broken arms, to counseling a parent on an issue.....everyday is an adventure!!!  Most days I go home laughing some days in tears but at the end of the day I love my job and ALL the girls I work with.  Debby & Lori I cant thank you enough for ALL the opportunities you have given me over the years and I hope that most days I make you proud!!  (I know the days I don't....they usually start with me saying "well guys I have something to tell you" hehe)
3) My friends-  Wow to all my friends you will never know how much you mean to me.  You are my family as well!!  I love you guys all SOOOOO much.  You are always there for me, listen when I need it, and straighten me out when I need it too.  I LOVE YOU ALL!!!
4) My home and things I have-  I am thankful that I have a husband who works so hard for the things we have.  Its not much and I don't drive a fancy car, but we have a nice home.  We have nice things and my kids are warm.  At the end of the day that is all that matters.
I hope all of you dig deep and find the things you are thankful for as well!!

Saturday, November 16, 2013

Don't watch the clock; do what it does. Keep going.

A couple reason why I haven't posted in a while
1) Nothing has really changed!! WHOOP WHOOP
2)  Braydon is doing fantastic!!
     The Fowlers are actually in a great place right now.  Although all the testing did not give us any more news it shed a light onto his future.  It will be a bright one!! 
     Dr. Robinson is having Shawn and I propose a 5 year plan that will eventually lead him to be behind a steering wheel!!  OMG!!!  Driving!!!!  Tn has very relaxed laws when it comes to Epilepsy and driving so that is good for him, bad for Shawn and I, lol!!  Looks like from the days in the hospital that with or without seizure meds he has a lot of seizure discharges going off in his head.  The meds seem to keep them from becoming full blown seizures.  However this means he is without a doubt on meds for another 2 years.  His Doctor is really convinced this will be a life long issue but is willing to try to remove him from seizure meds in 2 years given that there have been no issues. 
     So in two years we have to decide if we want to even attempt to take him off the meds.  I can say we wont do it unless alot of tests convince us that the discharges are gone.  Before he gets behind the wheel of a car I better be sure of one of two things, his seizures are well controlled or are gone.  It is soooo crazy to me that we are thinking of him driving!!
     On a personal note he has his first middle school crush!!  Her name is Becca and she has purple strips in her hair!!  He asked her via a friend to "date" him and she said she was not allowed to date but if she could he would be her choice.  He grinned from ear to ear!! 
     Although things are much easier I will say that everyday I spend at least 5 minutes thinking of the families who have not been as lucky.  The families who are struggling with a new diagnosis or have lost their loved ones to epilepsy.!/AJOforeverinourhearts   Take a moment to read or look at this families story!!  I'm scared to death that one day my life will come to a crashing halt like theirs, but I don't watch the clock, I keep going!!
Please take time, money or an experience out of you day and spread the word!!  #AJO

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!!!

Sunday, August 18, 2013

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. 

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

Saturday, July 27, 2013

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!!
Meet his (cross your fingers) new Doctor
Wish us luck on this next journey!!

Friday, July 5, 2013

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!!!

Sunday, June 30, 2013

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???

Monday, June 3, 2013

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!! 

Sunday, May 26, 2013

“How did it get so late so soon?” ― Dr. Seuss

We are in the car on our way to camp Carpe Diem!!!  Amazing what a year can do!!  Last year was crazy,  I was super emotional, cried the whole way home!!!   This year I can't wait to drop him off!!!  I know he is so excited and can't wait and all my fears just fall to the side!!

Over the next few months the Fowlers are embarking on many new adventures that both scare me and excite me!!  Life is only one journey,  there are no redo's or rewinds!!  You have to embrace it and do what you can with the time you have!!!

Everyone have a super safe Memorial Day weekend and I hope you choose to embrace life and remember its only one life!!!   Thank you to all the soldiers who's life was cut short so I can embrace mine!!!!

Friday, May 3, 2013

It takes courage to grow up and become who you really are.

My baby on the day of his Middle School Tour
It is so incredibly scary to think how quickly your children actually grow up.  In a few short months he will be in Middle School!!  OH MY GOSH!!!
There were many times when B was little that I just knew he was destined for great things.  Anyone who has meet the kid knows he has passion and determination.  He is so emotional and loving.  Unfortunately we have to tell him this year there is no Santa, being naive is one of his best traits.  However being naive and being in middle school scares the holy bejesus out of me!!
Since the discovery of Epilepsy and his dreams of being a pilot were crushed he has been dead set on being in the military.  Which as a mother scares me and makes me so very proud at the same time. 

To think that one day Braydon will be saving the lives of the American people by risking his own scares me.  Don't get me wrong I'm proud, but very scared.  He is very excited about things like JROTC and other activities. 
Any way, he is so grown up and it is scary.  So to all you out there who still have little ones......record every moment, cherish every minute, and remember every little thing you can.
Don't let life get you to busy that you don't take the time to see the little things in life.  Take the time to be a mom or dad............

Tuesday, April 16, 2013

We gain strength, and courage, and confidence by each experience in which we really stop to look fear in the face... we must do that which we think we cannot.

       Well today was our one year visit with Dr. Robinson to get Braydon's noggin checked out.  Last month Shawn and I attended an Epilepsy Syporium in which Dr. Robinson spoke.  We learned alot including that 99% of people who are diagnosed with Epilepsy are only diagnosed after 2 or more seizures.  Well, of course this got me to thinking, we had jumped the gun and started meds when they were not needed.  So in true E style I do a TON of research and just as we were told 99% of all patients are diagnosed after two or more seizures.  So I went into today I had high hopes that we would hear today that we could try without meds for a while.........and I was disappointed!!  BUMMER!!!!!!!!!!!!!!!!!!!!!
     So here is what I learned today
                       Idiopathic Generalized Epilepsy is his diagnosis, I also learned that he was diagnosed past the window of time in which he could "grow out of it".  Which that is something we had been told last time so that was not that new.  Here is a break down of what we were told from the Dr.
 Idiopathic generalized epilepsies (IGEs) constitute one third of all epilepsies. They are genetically determined and affect otherwise normal people of both sexes and all races. IGEs manifest with typical absences, myoclonic jerks, and generalized tonic-clonic seizures, alone or in varying combinations and severity. Absence status epilepticus (ASE) is common. Most syndromes of IGE start in childhood or adolescence, but some have an adult onset. They are usually lifelong, although a few are age-related. The EEG is the most sensitive test in the diagnosis and confirmation of IGE. EEG shows generalized discharges of spikes, polyspikes, or spike/polyspike-waves either ictally or inter-ictally. These discharges are often precipitated by hyperventilation, sleep deprivation, and intermittent photic stimulation (IPS). Inconspicuous clinical manifestations become apparent on video-EEG and with breath counting during hyperventilation. The EEG is unlikely to be normal in untreated patients. In suspected cases with a normal routine awake EEG, an EEG during sleep and awakening should be obtained. Molecular genetic analyses have led to important breakthroughs in the identification of candidate genes and loci; genetic heterogeneity is common.
     Dr. Robinson took her time with me today when she noticed my disappointment.  She actually she showed me his EEG today.  I was told that the "spikes" that they are referring to are spikes in the brain waves.  He had a 90 minute EEG, during which they have him go to sleep.  During the 10 minutes he was asleep he "spiked" 8 times and spiked a total of 48 times.  That's in 90 minutes that his brain hit "seizure spikes".  I guess I realized that this was alot when the original Dr diagnosed him but to actually see it so much more real. 
     Realistically Braydon will be battling Epilepsy the rest of his life and Man do I hate that for him.  However Dr. Robinson told me if we can keep him seizure free for the next year we will start weening him from all meds.  We are now only having to go and see her every 6 months which is nice.  We don't go back until October 15th, she wants to wait until he is 12. 
     My fear.......  Later this year he is starting Middle School.......and man kids can be cruel.  I'm scared to death that he is entering a huge battle.  She agreed that next year we will reevaluate the EEG and re take one and try but man a year is a long time.  If he has a seizure at school or if children find out he is Epileptic my fear is he will be picked on. I realize I cant fight all of his battles, but I'm scared to death for him.  Hopefully middle school will be his time to shine and I'm making mountains out of Mole hills!!!
     I'm just being a Debby Downer tonight because I did not get my way......tomorrow will be different and I will be back to my optimistic self!!!

Wednesday, March 13, 2013

“The doors we open and close each day decide the lives we live.”

     Well what can I say other than what a day!!  This week marks our one year of Braydons seizure and epilepsy diagnosis.  Over the year I have gained a few followers here on my blog so for those that do not know my job I am the quality assurance director of an amazing early childcare center and preschool.  Today was a major blow to my senses.

     A small child whom I know on a personal level suffered a seizure.  Let me first start and say that we as a center rock our emergency's and again today we worked as a team and with AMAZING strength got through it.  This little girl has been a part of my life even before she even arrived on this earth.  Her mother and father I love dearly and their other children are a part of this family.  They have celebrated every birthday with both of my children and they are an amazing family.

     What I felt was tremendous fear for her mother.  Anxiety.  Stress.  Pain.   The list could go on and on.  Is this mother going to face the toughest year of her life?  Will she feel the same way I do?  The list of questions go on and on.  But it stirred an emotion in me that I cannot explain.  Just yesterday I had posted this on Facebook  

Yesterday was an important day in the Fowler household!! It was one year ago yesterday that Braydon had his seizure that lead to his diagnosis of Epilepsy!! Please always know seizure first aid as I will always remember the two woman who helped Braydon that day, they were his angels that day!! Maybe one day you can help someone as well!!!
     Little did I know it would be me having to deal with someone having a seizure.  Little did I know that I would hold a small child in my arms waiting on the Ambulance to meet mom at the hospital and it NEVER crossed my mind that it would be someone who I cared so much about. 
     The little girl is home with mom and dad and sleeping last I heard.  I hope her mother gets the answers that she needs.  I am glad that I was the one who could be there and even more glad that I could try to comfort someone with Braydons story, although every story is just as heart breaking.  I am also OK, like the others who were there and helped I probably wont get much slept over the next few days.  It is traumatizing without question no matter who it is.  But we will all be OK because we are all a team, from the directors to the teachers to the parents and even the children.  That's what makes us great!!

Sunday, February 24, 2013

If you don't like something, change it. If you can't change it, change your attitude.

This is me as of April 2012!!  If anything I have gained weight since this picture!!  Over the past few weeks I have had a few health issues that indirectly all go back to my weight.  Some genetics, some just bad luck but at the end of the day if I watched what I ate then I would be healthier. 

     Don't get me wrong I am very happy with me.  I love a lot about myself (not to sound like an ass) but I love love love my hair, my boobs are pretty awesome and I have beautiful eyes.  But I want to be a healthier me.  I want to be able to run miles.  I want to be able to not worry whether or not I can "fit" in certain things. 

    I am a lover of life, I love to grab life by the horns and run with it like my shoes are on fire.  But my weight has hindered this for me.  Today start a better me, today starts the healthy me!!  I want to weigh what I did pre children which to be honest is A LOT of weight to shed.  However I can do it!!  I know I can.

     So today I change the unhealthy me which makes me change my habits and my attitude!!  What are you going to change?  What do you not like that you could also change??

Wednesday, February 20, 2013

We are not given a good life or a bad life. We are given a life. It’s up to us to make it good or bad.


          We are coming up on that year mark of the day that will forever change my life.  March 11th 2013 will mark one year since the start of Braydons Tonic Clonic seizures and a few days after that his diagnosis of Epilepsy. 

     Over the year I have learned a few things about Braydon, myself, my family and my friends.  Today I want to share those!!

         I learned that Braydon is TOUGH with no doubt.  I learned that he is an amazing child.  He is not letting this bet him.  All though he gets very depressed at times, he is shining like a bright bright star.  His schooling has actually improved over the year and he has done better.  He is my boy wonder.....he is my amazing little man. 

     I learned that I need to be better about taking care of me.  I had to start some medications to "balance" myself out and to be honest I never realized how bad I needed them until I realized the sane person I could be while taking them!!LOL!!   I learned I'm stronger than I ever thought I could be and I feel as though I am a better person.  I also have learned that the stress, anxiety, and poor life style I have been living is without a doubt affecting my health and I will be a healthier person by this time next year!

     My Family-  they are ALWAYS there for me and make me laugh and smile when I need it.  Claudia and Shawn have dealt with a lot this year as well and I thank them for being patient with me.  I think sometimes that they are the two sane ones in the loony bin!!  :)  My mom, sisters, in laws, and work(who by the way are family as well) have stood by and let me cry when I needed, let me vent when I needed and have told me when I'm being unreasonable and or crazy!!

    My friends-  I learned this year about true friendship and I will tell you it is the BEST feeling in the world!!  To know that I have people who will catch me when I fall, and have caught me several times over the year is the best feeling in the world.  To know that someone loves you cause they want to and not because they have to is amazing.  I love you guys very much!!

      So what Have I really learned this year????

     To live the life that I want.  To not worry about what others think or what others will do.  To love with ALL of my might and to learn to sit back and enjoy it.  I will make my life and the life of those I love the best I can!!