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!! 

“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!!!!

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............

 

 

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.

WHAT A DAY!!!!

 

 

       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!!!