In His hands...

the mental capacity or faculty of retaining and reviving facts, events, impressions, etc., or of recalling or recognizing previous experiences (dictionary.reference.com)                 
For in this hope we were saved.
   Now hope that is seen is not hope.
       For who hopes for what he sees?
            But if we hope for what we do not see,
                    we wait for it with patience. -Romans 8:24-25 
    I find myself reliving the old memories, I would much rather forget. Watching Brett's Epilepsy get out of control, the medications not stopping the seizures, watching him struggle to do what he would have said was "baby work" two years ago and the fear of what could happen is at times more than I think I can bare.

Yesterday, Brett had a bad. He was eating lunch and his head dropped hitting the counter. Eyes rolled back, drooling, unresponsive for what seemed like an eternity. After a few moments he raised his head looked straight into my eyes until the rolled up and to the right. Both arms started jerking... His eyes came down as he babbled nonsense words lost... completely lost in a seizure.....   
Of course it is not me who should carry this burden, at times it is difficult to put all of this in the Fathers hands and leave it there. It's more than I can handle and there is nothing I can do to fix it. All I can really do is surrender it to the Father and trust Him and Him alone.
Two more Complex Partial seizures followed, rescue medication given...
I thought he seemed okay three hours later and traveled to town to pick up a few things. In the parking lot a Tonic Clonic occurred... Made it home with my now wobbly and confused boy... only to see him endure 5 more seizures...

Aftermath... I sit here sometimes and I get so frustrated. Hearing Brynn stomp loudly enjoying the pleasure of making noise, tap with and on just about everything, yelp & bark... I sit frustrated and then I think back, realizing what a battle he has been through. Realizing how blessed we are they he is doing so well. Realizing just how special he really is. It's hard sometimes to look at this BIG 14 year old boy and accept him where he is. To accept that to him it is perfectly acceptable to get such pleasure from such noise making adventures. I am his Momma and I have to remind myself at times that he may be 150+ pounds and although he has hair on his upper lip, his brain has not caught up with his body. I do worry will someone be able to see him as the beautiful blessing he is, a child at heart when I am gone. I watched him gain and loose so many things over his lifetime. I watched as parts of him slipped away and never returned. I watched his struggle and I fought to keep him, every part of him here with us. I struggle not knowing with every seizure what memories may be lost or what parts of my sweet Brett may return.     

Rejoice in hope,
      be patient in tribulation,
             be constant in prayer.
                            -Romans 12:12 

I find myself in struggle between Brett's now and Brynn's past. I struggle because we have been here before. We have seen what can happen. What we are seeing Brett struggle with Epilepsy worse than Brynnon was at this point. Brett was a year ahead in his home schooling, over the last two years he has regressed to struggling to work at grade level. At this moment he is likely almost a year behind in some areas. Brett's loss of ability is more profound as Brynn was never ahead on anything or even on level. Same age, 9... Same seizure types... Same behavior... It was horrible enough to see it once. My heart breaks even thinking that I am watching it all over again and knowing that there is nothing I can do to stop it. I thought I knew what it felt like to watch a train screaming by at 100 miles an hour toward a broken bridge. That is exactly what this feels like. One thing that comes from struggle, from pain, from any battle is FAITH. 

Reminding myself tonight that my strength doesn't come from within myself, it comes through my faith the the Father. My Hope that everything is going to be okay... in HIS time. All those years I spent wondering around in the dessert, I had no idea I was being trained for battle. Just when I thought I may be home free, all relaxed and ready to settle into the promises... I came across this wall called ePiLePsY. It's huge, it can be deadly, doctors don't know how to take it down, no one knows why it is there, when it was put there

... but we DO know that the Father knows. Not only does He know, but He has the master plan for these precious Epilepsy Warrior Boys He has blessed us with. Now some people think faith is looking at a situation and expecting the Father to move fast and fix it. No, faith is putting the situation in His hands and trusting HIM to do with it as He wills. That is exactly what we intend to do...
!HAVE FAITH! !SURRENDER! !TRUST HIM! !BELIEVE! !NEVER LOOSE HOPE!

     

Fund Raising Flier

Both brothers have numerous life altering seizures. Brett recently went through a day of experiencing 14 seizures and Brynn, regardless of medications and a VNS implant, still experiences unpredictable seizures. 


About The Family
“We’re doing all we are able and we are on the right track. A seizure service & alert dog for the boys will give them a sense of safety and increased confidence while giving me much needed Peace and stress relief.” says mom Denise.
They are winning because they have a strong support circle surrounding them. Their mother, Denise is a strong prayer warrior believing in healing and standing in Faith. Their dad, Brian is hard working. The Brothers also have four other siblings. The family has the National Seizure Disorders Foundation, our resources and support at a moment’s notice.
Consider the life these brothers lead.  Their seizures, although diagnosed, are uncontrolled and unpredictable. This leaves the whole host at unrest. The family needs peace, mom needs rest, and the boys need healing.

What You Can Do
National Seizure Disorders believes to achieve positive seizure management, the only true and positive journey to healing with seizure disorders, one must believe and practice Hope, Faith, and Love.  Among these, Love is the emotion that heals.  Brynnon and Brett need the Love of those around them, those that know them, and strangers right now.  Everyone reading this has the opportunity to Love these brothers through positive thoughts, prayers, donation, and sharing this story with others.  National Seizure Disorders Foundation has made it easy to donate.

We are Fund Raising to get the boys a Seizure Service Dog!! Brynn and Brett are sponsored by: 

The National Seizure Disorders Foundation  http://nsdf.us

Please Find, Like and Share: http://Facebook.com/EpilepsyWarriorBoys


Abba Father is always faithful...

  The past few weeks have been filled with so many different emotions. The strength and endurance that only faith can bring, remained constant and persistent, I am ever so grateful for the peace that only Abba Father gives, remaining steadfast in my heart, regardless of how things look or how they feel. Regardless of the fear that comes... the thoughts that race through my mind... Abba Father is always faithful... 

¸...¸•*´¯`*•.¸He who dwells in the shelter of the Most High will abide in the shadow of the Almighty.  I will say to the LORD, “My refuge and my fortress, my God, in whom I trust.” ~Psalms 91:1,2´¯`*•.¸¸...¸
 

Brett's seizures have persisted during the day, then went back to just at night, then they balanced out to both night and day seizures. It has been difficult for the entire family, a whole new experience of not knowing when they will hit. Not knowing if the Simple Partial visual symptoms will stay, go away or continue to a Complex Partial. He experienced a dramatic increase on Sunday and had to be taken to the Emergency Room after having 3 long Complex Partials followed by 4 back to back with little or no recovery in between. He had seizures continue on the way to the hospital and while in the Emergency Room. Our oldest Son was with us and counted 14 seizures... Ativan was given for the first time to help stop the clustering, thankfully it worked. The after effects were terrible, bouts of crying that were hard to determine if they were repetitive seizures or after shocks in his brain from all the seizures. Abba Father is always faithful...

¸...¸•*´¯`*•.¸Trust in the LORD with all your heart, and do not lean on your own understanding. In all your ways acknowledge him, and he will make straight your paths. ~Proverbs 3:5,6´¯`*•.¸¸...¸

Monday, we went to Children's and he was still in a pretty bad postictal state. Off balance, confused, irritable, extreme sensory sensitive... That visit was a good one, we made tremendous progress. Neuro agrees, Brett is likely multifocal, since I have video showing Left side posturing with Complex Partial onset as well as Right side. The decision was made to go forward with the VNS implant like Brynn has. Abba Father is always faithful...

¸...¸•*´¯`*•.¸“Come to me, all who labor and are heavy laden, and I will give you rest. Take my yoke upon you, and learn from me, for I am gentle and lowly in heart, and you will find rest for your souls. For my yoke is easy, and my burden is light.” ~Matthew 11:28-30´¯`*•.¸¸...¸

YES, We Will DO Genetic Testing Before even considering brain surgery again. Brett was chosen by his neuro to be the patient that gets a complimentary genetic Epilepsy Panel done. We have been blessed by Brynn and Brett's neuro in that he chose Brett to get the test. This was far away from our reach, very costly and our insurance would not cover it. This is a miracle for us to have this opportunity, just when I had made my mind up that it had to be done as soon as possible. I was so amazed by how this worked out perfectly, as usual just in time as Abba Father always does things... Just when you are about to throw your arms up in complete frustration and despair. Abba Father is always faithful...

¸•*´¯`*•.¸But you, O Lord, are a compassionate; gracious God, slow to anger, abounding in love & faithfulness. ~Psalm 86:15´¯`*•.¸¸...¸

Brynn has remained so stable over the past several months. He is now staying at baseline some weeks better, only averaging 3-4 seizures a week. Even a bigger wonderful blessing, he has only had ONE Tonic Clonic Seizure in the past 3 months and only averaging ONE Tonic Seizure a month. He has remained stable long enough to conclude that the medicine combo and the VNS is keeping him more stable than he has been in a long time.  Abba Father is always faithful...

´¯`*•.¸May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope. ~Romans 15:13´¯`*•.¸¸...¸

Brynn, Brett & Abigail ~May 2010~

What a journey this has been over the last several years...
Thinking back it is difficult, Brett is the same age that Brynn was when he entered the seizure sick  world. Both boys were born in October. It was January 25, 2009 the first time Brynn went to the ER after his first recognized 10+ minute Tonic Clonic seizure. Here Brett is, same chronicological age as Brynn was in the same month... and his seizures are worse than they have ever been. I do not believe in coincidence and there is no such thing as "bad luck," I hope that we will have answers soon through that test for my blond hair, blue eyed boys that have so many similarities... Abba Father is always faithful...

¸...¸•*´¯`*•.¸Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing. ~James 1:2-4´¯`*•.¸¸...¸

I made a video for awareness of Complex Partial Seizures, since Brett's are unusual and I had a hard time finding a video that showed a seizure anything like his. I hope it will bring awareness to this type of seizure and will help others who may be looking for answers, and knowing that you are not alone! Abba Father is always faithful...

http://www.youtube.com/watch?v=_orIXJ8CrbA

¸...¸•*´¯`*•.¸For ye have not received the spirit of bondage again to fear; but ye have received the Spirit of adoption, whereby we cry, Abba, Father. ~Romans 8:15´¯`*•.¸¸...¸

Brynn, Brett & Abigail ~January 2014~

So, after that exhausting Sunday filled with seizures, Monday filled with 5 hours of driving, both boys seeing the neuro, Brett being so postictal, the joy of knowing Brett would have a genetic test done, the uncertainty of why his seizures are so out of control... and the decision to do the VNS... This Momma was done! I was just at the end of my rope and so exhausted.... Abba Father is always faithful...

¸...¸•*´¯`*•.¸A merryheart doeth good like a medicine: but a broken spirit drieth the bones. ~Proverbs 17:21-23´¯`*•.¸¸...¸
Then Tuesday... Your never going to guess what happened! The National Seizures Disorder Foundation's Founder, Tonya sent me a link for the boys... She is sponsoring a fund raising campaign to raise the money for the boys to get their very own Seizure Alert Response Service Dogs! This is going to require a lot of work, and prayerfully, a lot of help from a lot of people... What a blessing indeed... and yes, just when your at the end of your rope... Abba Father is always faithful... Very grateful and feeling so blessed! However, for the first time ever I BELIEVE it not only Can Happen, but IT WILL HAPPEN! Can you help?? Here is the link, please share! Abba Father is always faithful...

http://nationalseizuredisordersfoundation.org/brothers-winning-the-battle-of-seizure-disorder/

..

¸...¸•*´¯`*•.¸You keep him in perfect peace whose mind is stayed on you, because he trusts in you. Trust in the LORD forever, for the LORD GOD is an everlasting rock. ~Isaiah 26:3,4´¯`*•.¸¸...¸

Fast Forward Realities...

It is with a heavy heart that I sit to write this blog update.  A lot has happened since my last post so I will try to catch up with pictures as I give the most recent update on Brett.

                                               

We had a wonderful Hanukkah! Abigail really enjoyed it this year and even helped light the candles. The Boys both enjoyed the Epilepsy Awareness in Disneyland bears and T-shirts that I got them! They both love their new cool beanie helmets I got them!  Last year at this time I was seeing cognitive decline in Brett, behaviors similar to Brynnon's in Brett. I saw an increase in what I could only describe as extreme emotional outburst for no known reason and he

couldn't explain it either. He would say things like he couldn't see the words while Reading or he didn't know how to borrow or carry in Math. A bright boy since birth, Brett was struggling to work at grade level when a year prior he was a year ahead. I tried to see it for what it wasn't as long as I could. I had been catching events that looked like seizures in Brett for a few years while recording Brynn.

After being told by the Pediatrician he was faking seizures and peeing himself for attention, it eventually became easier to believe her, than to even think it really was seizures. One night while watching a movie Brett fell asleep. He got up and was completely blank looking. He stood and was making hand motions like he was touching something. I watched, tried to talk to him with no response and thought, well whatever that is it's not normal. I researched... and I finally came to the conclusion it could be seizures and that Dr. was wrong or it could be Parasomnias. Ah, yeah

Parasomnias make more sense and the cognitive decline likely just the effects of having so much go on in his sleep. I took him to a local Family Physician showed her a few videos and said I am not saying these are seizures, but they are similar to what Brynn does, maybe they are Parasomnias. She agreed and thankfully Brett was referred to Children's. We went for the first visit and I think I may have been the only person who saw the video there that was convinced that it was Parasomnias. He had a sleep deprived video EEG and was diagnosed with Epilepsy in September. He started Keppra, which caused horrible rage and anger. 

We switched to Trileptal and over time it did seem to help his daytime become a little better. I did not see much change in his nighttime. We went to his first visit with Brynn's neuro Oct. 1st, and at that visit he said he would not wait until he is maxed out on five drugs to consider Epilepsy Surgery and that he was concerned about genetics.

All of a sudden, just when I got comfortable a few weeks later, he became very verbal about what was happening to him visually. All those crazy symptoms he had complained about blurred vision, altered perception of what he was seeing, altered sizes of things, his vision moving...

The more questions I asked, the clearer the picture became. I reported these things to the Neuro. It was decided that he needed another medication added, so we added Topamax. The dose was to be 25 mg AM & 100 mg PM to avoid any further problems in his schooling. It was great at first, he slept soundly and peacefully more nights.                                                                                                         

His daytime seemed much better... but over the next few weeks my life became a whirlwind. Brett started having bigger daytime events that terrorized him and everyone who saw it. I did not know if he was loosing contact with reality or having symptoms of a terrible mental disorder... 
but he started having something happen after the Complex Partials that I did not know could happen.

TERROR, Irrational Fear, Screaming, Wandering and if being restrained or stopped RUNNING. We started recording the events on the third day. Something was happening that never happened before. I called the Neuro to report these events after I researched and figured out that the fear could be part of the Complex Partials. I suggested that perhaps the daytime dose being so much lower wasn't protecting him well enough in the daytime, because now his nighttime events had disappeared. The neuro agreed and we doubled the daytime dose. After a few days it was evident it was helping some. I called again and was told to go ahead and get the doses even. It spaced out the events for several days.

Then as if nothing had changed it went back to every day. I decided the best action I could take was to request the neuro watch the videos. After he viewed them, it was decided that we needed to take action and have him go in for an extended EEG to see if he could be a possible brain surgery candidate. We returned home yesterday from Brett's first Children's Hospital admission. Brett had a seizure while being hooked up to the EEG leads, which made me think that may be a wasted visit. I did have the nurse that helped keep him on the table as well as the EEG Tech witness what happened, but I knew without it being on EEG it wasn't enough.

That first day while hooked up he had a few auras that I didn't push the button for. That night he was a teeny bit restless but not anything to push the button for. The next morning he got his breakfast tray and was not excited about that bagel he asked for once he saw it. He picked at the bagel and the rest of his tray. A bit later he asked when is lunch... at 10:30 lunch is a bit far away for a growing boy, so I offered to go buy him one of those Red Baron personal pizzas out the machine downstairs. After asking him if he was sure he didn't have the vision thing or feel like he was going to have a seizure, I asked his nurse if she could

keep an eye on him and she agreed. I waited for a while for the elevator, and eventually made it down. I anxiously looked for it... the shiny package that he wanted... Cheesy goodness, there it was! The machine wouldn't take my debit card so I scrounged up a few bucks from my wallet. I grabbed a Green Tea for myself and was out of there... a guy called Ma'am your change! I grabbed that and again was on my way. Made it back up... and found the Nurse next to Brett in an obvious seizure... tears in running down his face... I spoke to him and he had that fearful look...

My little boy was lost,  completely lost. Didn't know where he was or even who I was. I told the nurse he is having a seizure, pushed the button... Dr. M came in soon after and asked if that was a typical seizure. I didn't see onset, but knew by the last part I saw it likely was, other than he didn't try to get out the bed or take the wires off. So she said she would look it over and if it was enough, we may be able to leave.It seemed like forever before she came back. When she did she said you never want a neurologist to say your child is fascinating, but his seizures are very fascinating. He appears to be a good brain surgery candidate based on that seizure and it was such a good example she

will be using it in the future. She totally got how it was diagnosed as "Night Terrors" and how it was confusing to me that it could be a seizure, because his awareness comes and goes. It's an unusual etiology and the progression of the seizure was very unusual. With the amount of Auras he was having she suggested that we stay the extra night and try to capture more.

I was done, and felt like I needed to go home. So I opted to do just that. So... all those crazy visual symptoms are Simple Partial seizures confirmed by EEG, as well as the Complex Partial seizures confirmed. She confirmed as well that a seizure he had a few days prior with jerking in both legs that eventually became whole body jerking was indeed a Tonic Clonic. He had the Right side only jerking every now and again at night and eventually during the day. When the seizure focus goes off it in the Occipital Lobe it moves to the Left Visual Assoc. Cortex causing the crazy Visual symptoms. At that point it is considered a Simple Partial seizure. It it keeps going and shoots through his Temporal Lobe causing the fear, euphoria and

more obvious Complex Partial it is considered an Aura. An Aura is a sign that a bigger seizure in coming experienced by much of the people with Temporal Lobe seizures. When his right side starts jerking it has spread through to the Motor strip and that time it was both sides jerking it had generalized (spread to the other side of the brain) into a Tonic Clonic. It is a good thing to have answers and know that there are options. I still have a lot of questions before Brett will be having Brain Surgery. The main question is Genetics. I cannot

think that it is "bad luck" as she put it. It's too much like Brynnon. Both boys have the same genetic makeup, you can see it by looking at them, by the seizure type and progression and by so many other signs.  I think it would be very traumatic to have Brett go through Brain Surgery, and it is a step I am not willing to even consider without genetic testing. Brynn only had one Focal area at one time, now he has three. So in my mind, why would you go through that kind of trauma and hope for seizure freedom if eventually it will return and what if it is worse?

I don't think I have the courage to even explore the surgical option without knowing a whole lot more. Whatever happens, I know without a doubt that our Abba Father is in control. No matter how it looks or feels, I have full confidence that Abba Father has Brynn and Brett in his hands and they are perfectly made.

The beanie Helmets I got the boys are from:
http://crasche.com/
The Cute bear Brett has with him at the hospital was a gift from CeCe Cares:
https://www.cececares.org/

The wonderful totes, bears and awesome T-Shirts came from:
http://www.epilepsyawarenessday.org/

.