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Thursday, July 10, 2014

Guardian of the Night K9: 4 new puppies will be delivered to GOTNK9 on Aug. ...

Our Service Dog Trainer started a blog! Now we can all follow along with Blue's training and growing! How awesome!! ~Denise

Guardian of the Night K9: 4 new puppies will be delivered to GOTNK9 on Aug. ...: 4 new puppies will be delivered to GOTNK9 on Aug. 1st and begin their training. SDiT Athena will be a PTSD dog for a solider, SDiT Camo will...

Saturday, July 5, 2014

Moved, Settled and been to the BIG city!

We have moved, settled... Been to the Biggest Children's Hospital we have ever seen (3rd largest in the U.S.) and saw a new Epileptologist. We moved to Alabama, and have adjusted to a lot of changes pretty well so far. We are in the city, never lived in a city like this before! A big shock and change for us, having been primarily in the country for the last 20 years! Had a visit with a new Epileptologist, that was "interesting." A bit different than what we have grown accustomed to.                           
Brynn and Brett will both be having PET scans, better MRI's and 5-7 day Epilepsy Monitoring Unit EEG's. Our last visit in New
Orleans, was bitter sweet. I really hated leaving the Neurologist that we all loved and we all knew he cared for the boys greatly. It will be good for the boys to have better testing done and we can only hope that through this we will get answers and prayerfully solutions. The boys were not very impressed with the new Dr., perhaps just a little sad about loosing what they were comfortable 
 with. I will remain positive and keep pushing through until the testing is done, and we feel the new facility out a little better. I did manage to get a copy of Brett's 10 minute Complex Partial picked up in N.O.'s EMU, although it's just the EEG and not him like I wanted.

 We successfully weaned Brynn of Zonegran and switched to Fycompa, a new drug. Brynn's random jerks have returned, we are unsure if it is a seizure type or a side effect only the test will give that answer... He is overdue an EEG to look at activity/background , so it will be good to have another, and an extended EMU stay can catch so much more than a shorter stay too. The drawback is that it is outside their normal envirement, and sometimes that makes it harder to catch seizures.
Brynnon is still going strong, having his better than ever baseline of seizures. Not exactly sure whether to give the credit to the VNS or Onfi... or even both, but we are very grateful for the reduction! Brett, who had been doing a bit better seizure wise, developed heat intolerance and gets a fever when he goes outside. It is a side effect of Topamax so we added Lamictal and tried to wean the Topamax, only to see a return of the constant visual auras, tummy auras and the longer Complex Partials. We raised it back, but haven't been able to get the same level of control yet. Brett is having somewhat of a good response to the medications he is currently taking. We are seeing a lot less fear involved in the seizures and they are much less dramatic. Actually, they are a lot like Brynnon's daytime seizures now. Brett's nighttime activity is still much better as well.
We have picked a trainer and are fund raising for a Seizure Service Dog. Her name is Blue! We were inspired to name her Blue after hearing the song Blue Does, By: Blue October.
She is a German Shepherd and will be trained by Guardian of the Night K9. She will be trained to alert for seizures, assist the boys when postictal and so many other things! We are pretty excited about Blue! We have already raised her deposit and only have $3,500 left to get her trained and home! I bet we will all sleep better with Blue in the house and finaly not feel on edge all the time! She will be an official, vested, certified ADI Service Dog and will go everywhere we go!  So, there ya go... an update! Short and sweet, just the way you like them!
As always, thanks for your Love, Prayers and Support!!
~Denise and Family



Tuesday, May 20, 2014

Brett's Surgery complete and other ramblings!

Brett finally had his VNS implant surgery on 5/12. The original surgery was postponed due to both Brynn and Brett being infected with Mycoplasma (Walking Pneumonia), which aggravated his asthma. So 6 weeks was needed before he could be put to sleep for his
lungs to heal. Surgery went well, other than his heart rate dropping when it was tested, no problems. It was tested twice after the wire was moved and assumed it was the wire position so it got to stay! His VNS, like Brynn's was left on at lowest setting when they closed and he will return to get checked by neurosurgeon next week,
as well as both boys get to visit with their most favorite Neuro Dr. D. Today is Day 8 and his incisions look great! He did have some possible pus at the chest incision, as well as an ear infection last week, so he has been on antibiotics since Thursday. We are anxious, of course, to see how this will help his seizures.

 At present, Brett is having clusters a few times a
week, with days in between with some night time seizures now and again or none at all. This is an improvement from the everyday seizures we saw over the past few months. We are learning to be thankful for every little thing!

“Prayer is not overcoming God’s reluctance, but laying hold of His willingness.” ~Martin Luther

 Brynn, however, is holding strong with the greatest seizure freedom he has ever had. Only having small seizures most nights and daytime he is having only really small "lost moments" not obvious bigger complex partials like before. VNS? Onfi? Med combo?  All of the above?

Who knows,
but we are very happy with his current condition!  He is having improvements in his general cognition, and we will likely talk about weaning one of his medications this neuro visit. Pretty exciting stuff! 
  We have a lot of changes
coming over the next few
weeks, many new experiences... The possibilities are endless! We are all excited!! :) More on that later! ~Denise

"So we are always of good courage. We know that while we are at home in the body we are away from the Lord, for we walk by faith, not by sight."
~2 Corinthians 5:6-7

Monday, April 7, 2014

Circles of Reality....

Ever feel like your going in circles? I mean really going in circles, in life. When something happens it doesn't seem new, just a repeat of the same circle. I find myself feeling this way a lot now, especially with the boys. So much of what they are going through is the same, watching Brett is just like watching Brynn all over again. I have a tendency to obsess over things. (Pretty sure you may have already figured that out with my past ramblings.) I suspect it roots from Mommas murder. It's hard not to think that had I asked the right questions or researched it better, maybe the truth would have been known. 
There comes a time when you have to just accept things as they come to preserve your sanity. That's where I am with this monster called Epilepsy. It has stolen so much from Brynn and to see Brett affected by it is just heartbreaking. The reality is that I can do nothing to change it, I can do nothing to fix it and I have done everything I can do. I pray every day for a cure  and the
seizures to stop, have spent days, weeks and months researching and trying to figure it out. I have tried a few diets, omissions in diet and even several herbal and even homeopathic remedies with no success. The answer is obviously not a simple one and maybe I am just not meant to have it today. I have accepted that, although that will not stop me from looking or praying it will!  
Brett's VNS surgery was scheduled for April 4th. We spent Epilepsy Awareness Day (March 26, 2014) at the Zoo, celebrating Purple Day and having a fun family day before Brett's surgery. It was a lovely day! We handed out lots of Purple Bags with Cards, pictures, Purple Epilepsy Warrior Boys Bracelets and had so much fun! Met some realy nice people and got to talk about Epilepsy with some really nice people. I hope we can go to a bigger "Real" event next year!      

I took Brynn to the ER on Sunday, with seizure clustering, fever, congestion and he had become lethargic. He was given the diagnosis of Mycoplasma infection. This is the third time Brynn has had Walking Pneumonia. I kept them separated as much as possible, used Lysol like crazy... but it wasn't enough. On Tuesday, Brett was at the Dr. and given the diagnosis of Acute Bronchitis, likely the start of Mycoplasma Infection. He was given a Steroid and an Antibiotic Shot to try to ward it off as well as scripts for  Oral Antibiotics and Steroids. Thursday morning it became apparent that he was not going for surgery on Friday. Now that it was established that he had Mycoplasma, surgery could not be scheduled for 6 weeks. So Brett's surgery has been rescheduled for mid May.

The whole house ended up with Mycoplasma, and that stuff was brutal for Brynn and Brett. Pretty mild for everyone else, except Abigail's ear infections. Brynn's seizures were irritated by being sick. He was given oral antibiotics, as he cannot take steroids due to psychosis reaction to them. He is returning back to normal baseline now, and for that we are thankful.
Brett is also doing pretty good now, his asthma reared it's ugly head but seizures have returned back to his baseline already. I will keep my eyes on the road, keep my heart on the goal and keep moving forward!                                                             
We were working today on adding and subtracting fractions. It was wonderful to see that "Aha Moment" in Brynn, when he beamed as he said 1/2 + 1/2 = a whole!  It has been a while since I got to see such a big Aha Moment in him, very refreshing after such a bad few weeks! I have been doing the Sequential Spelling with them both again. Brett has no problem in Spelling except those "little sparks" that make him write the word wrong when he knows how to spell it. Reading
is an issue as his eyes will not work the way they need to, likely a result of the Convergence Insufficiency and his Occipital Lobe Epilepsy strong focus fighting to keep him from being able to see correctly. Math seems to cause Brett to struggle most, especially once he looses focus or gets frustrated. Comprehension is good when I read to them both. Brynn is still struggling in Reading, even at an early second grade level.
I suspect that his Convergence Insufficiency may be the root cause complicating his lower IQ and Cognitive Disorder NOS. He knows some bigger words by sight from memory, but really doesn't seem to have the memory and processing capabilities for much higher "Fluent"  reading. He does perform well at the 3rd Grade Math level, verbally and working in group, as long as we stay in the same area long enough and revisit often. I think we will stay on factions for some time now... with some multiplication mixed in! It is working well to do Brynn and Brett's home School together. As for the circles I seem to be going in, I have accepted that at least for now this is just how it will be. I can make changes to better the experience. If I am going to go in circles, I want them to be filled with as much love, peace and joy as possible! Here's to more of those things for our family!            

Friday, March 21, 2014

Epilepsy Awareness Day, March 26th!

It's Almost Time!!!
Epilepsy Awareness Day is March 26th!!

What will YOU do to raise awareness?

  We went to our Children's Appointment to meet with the Neurosurgeon who will do Brett's VNS implant surgery this week.
We brought Purple Bags with Purple Goodies (Lavender Awareness Ribbon Butter-mints, Wings of Hope Purple Ribbon Pens, White Purple Ribbon Grip Pens, Wings of Hope Purple Ribbon Calendar Cards)  to the Office Staff, our Neuro, the first Neuro Brett saw there, the Epileptologist who does the Video EEG testing and our most favorite Nurse ever who is so great and works hard for Brynn and Brett. I had a really cute Dr. and Nurse character made for our Neuro & Epilepsy Nurse. They are wonderful and are always there for us, always respond when we are in crisis, have a question or a need. They both go above and beyond what we could ever have imagined in care for our Epilepsy Warrior Boys, Brynn and Brett. The boys signed them and I wrote a card of thanks. We will be going out asking businesses to let us put up Brynn and Brett's photos and giving out pens next week. I thought I would write about Epilepsy, as if I do not write enough about it!

Did you know that 1 in 26 people will develop Epilepsy in their lifetime?
Did you know that there are many different types of seizures. Symptoms can vary from disruption of the senses lasting seconds, to short periods of unconsciousness to the full convulsions most people associate with Epilepsy.

Did you kno
w that Epilepsy affects more people than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson's combined? Historically, epilepsy research has been under-funded.  Each year NIH spends $30 billion of medical research, but only ½ of  1% is spent on epilepsy.

Did you know Sudden Unexpected Death in Epilepsy (SUDEP) accounts for 34% of all sudden deaths in children?

Did you know Only in about 30% of cases is the cause of epilepsy determined. The other 70% remain unanswered, in what is referred to as idiopathic epilepsy?
Did you know about 150,000 new cases of epilepsy will be diagnosed in the United States each year?Did you know early in the 19th century, people with severe epilepsy were cared for in asylums?

Did you know estimates are that up to 50,000 deaths occur annually in the U.S. from status epilepticus, Sudden Unexpected Death in Epilepsy (SUDEP), and other seizure-related causes?

Did you know an estimated 3 million Americans and 65 million people worldwide currently live with epilepsy?
Did you know the Greek philosopher Hippocrates was the first person to think that epilepsy starts in the brain (460-377 BC)?Did you know With the right AEDs, up to 70% of people with epilepsy could have their seizures controlled, leaving 30% uncontrollable/medically refractory?

Did you know in America, Epilepsy is as common as Breast Cancer, and takes as many lives?
Did you know Epilepsy can develop at any age and can be a result of genetics, stroke, head injury, and many other factors?

Did you know the mortality rate among people with Epilepsy is two to three times higher than the general population?
Risk of sudden death among those with Epilepsy is twenty-four times greater.

Did you know about 30% of those diagnosed with Epilepsy are children?

Now that you know... We hope you will wear Purple or Lavender this March 26th and tell people about Epilepsy. Not just for Brynn and Brett, but for the 65 million people worldwide living with Epilepsy.
~Denise, Brynn and Brett

Wednesday, March 5, 2014

Comfort through the why...


2 Corinthians 1:3-7 Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort,  who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God. For just as we share abundantly in the sufferings of Christ, so also our comfort abounds through Christ. If we are distressed, it is for your comfort and salvation; if we are comforted, it is for your comfort, which produces in you patient endurance of the same sufferings we suffer. 
And our hope for you is firm, because we know that just as you share in our sufferings, so also you share in our comfort.

At times in this Epilepsy journey, I find myself questioning WHY? Why do my boys have to suffer like this. It doesn't seem fair that they have seizures, that they struggle to hold memories, that they struggle to learn. It doesn't seem fair that we have to face every day, not knowing what the day will hold, not knowing at any moment when another seizure will hit. It doesn't seem fair at all, I know it must not seem fair to them. As with most things in my life I struggle with, I think about what I would tell someone who came to me with the same struggle. The answer is simple... The Father is not going to give us all the same struggle, but every human being will struggle with something. I never imagined that we would be in this struggle. Life was so wonderful looking back, but I remember struggle then too. Of course looking back, I have to giggle at myself at the little stuff that I thought was so awful, so heavy, so overwhelming at the time. At the time it seemed like the worst, now it seems like it was no big deal. It's about perspective. We hold the ability as humans to keep a positive or negative perspective. It's difficult at times to keep a positive perspective, especially when you feel overwhelmed. The more you focus on the negative the bigger it seems and the greater difficulty you face in finding positive again. I am reminding myself daily, that the Father is still in control... and no matter how it looks or feels He has a plan. I look at Brynn and Brett, amazed at their strength and perseverance.
Surely, the Father has a wonderful plan for their lives. How many people will they be able to help years from now, who are struggling with seizures. They are true Warriors, Fighting Epilepsy one day and one seizure at a time. What a wonderful testimony they will have, to stand firm one day and tell their stories.
Brett received a lovely Hernando Bear to comfort him during his VNS implant surgery and healing. It was sponsored by: Angels 4 Epilepsy, TG Bears and donations by group members. He will be going in less than two weeks to meet with the neurosurgeon about his VNS implant surgery. Brynn had his implanted on Oct. 25, 2012, we believe it has helped reduce the number of seizures that generalize and perhaps even reduce his postictal lengths as well. We feel it is a good option for Brett too and should be at least somewhat beneficial. Brynn has recently had either a return  of daytime seizures or an awakening to realize they are happening, no way to know really. It's new for him to "know and express" that he has had a seizure. He has remained somewhat stable over the past several months. Staying at the baseline of
2-4 seizures a week. Brett is still on a roller coaster, having one, two or clusters of 6 or more almost daily. Both boys now have the diagnosis of Refractory Cryptogenic Focal Epilepsy. (Meaning they have a cause that is unidentified, are resistant to medical treatment and have focus areas where the seizures start)The Courtagen Epilepsy Panel revealed no answers as to the cause of Brett and we assume Brynn's Epilepsy cause. We obtained and are now using seizure journals from the National Seizure Disorders Foundation (the Foundation that is sponsoring Brynn & Brett's Seizure Service Dogs fund raising). They are beautiful and make seizure journaling so much easier than our printed pages, which were hard to keep together! They can be found here, if anyone is interested:

....Back to the scripture I started with. I think people may assume that when it says comfort, that it means rescue. The Father comforts us by encouraging, strengthening you and giving you hope. When you come out on the other side you will be able to comfort others.  I hope that you will be comforted, in whatever struggle you are going through. I hope that through Brynn and Brett's Epilepsy Journey, we will always find a way to see the good and focus on the positive. I HOPE for the day that we can comfort others in the same path, having overcame the struggle, the pain and the uncertainty of Epilepsy. We must remain steadfast in faith, that one day, videos like this one will no longer be recorded our home.   


Monday, February 10, 2014

In His hands...

the mental capacity or faculty of retaining and reviving facts, events, impressions, etc., or of recalling or recognizing previous experiences (                 
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...