No matter how bad things are, you can always make things worse.

     Its been a while folks!!  Sorry things have gone fairly well the past few months but today something happened that made me want to blog.  Someone gave me something to talk about today.  For the most part my stories are funny and you just cant believe what happened to me.  I am that 1% in a million and most times I can laugh about it.  Today I couldn't laugh in fact I cried.

     Went to Church this morning and we talked about the fact that there is no real peace with the spirit of Christmas.  Everyone is so busy and hurried that they forget what Christmas is really about.  So after Church I needed to finish a few last minute Christmas things and Shawn took the kids with him to his Moms so I could get things done and it gives me a little "me" time which as a Mom I need way more than I get!!

     I was leaving a store and had a few bags.  We decided to do Christmas very light this year.  We are doing the Dave Ramsey Financial University and all though Dave is taking it easy on me budget wise this season I cant be sloppy with our money.  For those of you that don't know we have been noticing some things with Braydon lately at home.  After sharing those things with his Neurologist she agreed he needed to have further testing to test his cognitive skills and abilities.  Of course we couldn't get in until the beginning of the year which means we will have to pay for the testing out of pocket.  It is 6-8 hours worth of testing so I can only really imagine how much we are going to have to pay.  At least the first $2600, that's our deductible.  It will also have to be paid up front. 

     To say the very least I'm stressed, I'm tired, and ready for a new year to bring us some much needed luck.  Of course with the new year brings higher insurance deductibles, paying more for insurance a month and Shawn spends another year at his company who cant afford to give him a raise.  So we are starting the new year out making less money than we did this year.  I try not to let everyone see just how stressed I am however today I might have let my stress get the best of me.  I was super distracted.

     I was walking back to my car (a 1998 blue Chevy Malibu, its old and beat up but it is paid for and its mine) trying to add up what I had just spent with what I needed to keep in the bank and what i still needed to get.  Dave keeps me on a tight budget ;).  I was walking around a nice SUV when one of my bags accidentally hit the corner of the SUV.  The woman (owner of the SUV) who was with her children looked at me with disgust.  I apologised for hitting her car double checked to make sure there was no damage (I know there was no damage it was a plastic bag full of underwear and socks).  My car was right beside hers. 

     While I'm loading my car she makes a very loud phone call to who I am guessing was her husband.  She informed him that some Welfare Rat had hit her beloved vehicle and she was unsure what to do.  I'm assuming the person she was speaking with asked with what because she answered with "her bags".   Being called a Welfare Rat peaked my interest, Ive been called alot of things but this was a first.  She went on to tell the person how she could not believe that I had done that and that she probably paid for my purchases with the money she pays to welfare. 

     You re probably wondering what I did at this point...........and I did.......nothing.  She really wasn't worth my time.  Also at this point I really really wanted to punch her square in the face, however I don't want to explain to anyone why I was arrested.  Any ways my point behind this is this

    This woman made me feel beneath her.  And for what???  Nothing, her SIMPLE (and simple minded) words hurt to my core.  But not because they were true but because anyone would assume these things about any one person they just met. 

     Never assume you know anyone or the life they lead.  For the record I am not against welfare for those who need it and I am however very much against ignorance. 


     Now I plan to completely forget that ANY of this even happened and return to my very happy, very stressful life.  Please enjoy your Christmas and please please remember the Christmas spirit. 

     From my Family to Yours MERRY CHRISTMAS!!!!!!!!

It's not whether you get knocked down, it's whether you get up.

Well........... This week marks two years ago that Braydon had his seizure and that he was diagnosed.  He had a seizure yesterday. 

 

 

I was miles away and dad was with him.  There was nothing for me to do but I still went home.  This seizure has been a little different than the past ones, he was much more confused than normal coming out of it.  He is recovered and the cloudiness was gone with in an hour and he is now fine.  He forgot his medicine and I'm hoping that was all it was, but it could be he is out growing his dosage.  It could also be the hormone seizures that Dr. Robinson told us to be on the look out for. 

 

We were doing so great and of course this is a major set back.  We were looking at August 2015 for weaning from medicine and now it will be at least March 2016 if ever.  Dr Robinson reminded us last time any seizure activity this year (meaning in his 12-13 years) would determine whether or not we could ever attempt to take him off of his meds.  The later in his life that he continues to have them means it is not juvenile and will continue the rest of his life. 

 

 

We went about 7 months with nothing.  Well, what to do now.  Nothing.  I notified Dr. Robinson and will email his teachers to let them know the chance  of another of the next few days into the next week of two are high and hope and pray nothing happens while he is at school.  That's his biggest fear with all of this, having one at school and mom not being there to help.  So today we will pick our selves back up and keep an eye out on him and go on with our lives.  That's all you can do.  Thanks for the texts and calls from family and friends.  I appreciate more than you will all ever know!

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.

HAPPY THANKSGIVING EVERYONE

 

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!!

 

 



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. 

 

 

https://www.facebook.com/#!/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

“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