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Saturday, August 9, 2014

Got Patience?


What is patience? 

"The quality of being patient, as 

the bearing of provocation, 

annoyance, misfortune, or pain, 

without complaint, loss of temper, 

irritation, or the like." 

My Momma use to tell me I had the 

patience of a saint... I never really knew 


what she meant, but I sure do now....  

I have had many lessons in patience. I was born graced with more patience than most people I know. Also like most people I know, I find as I get older my patience gets a little thinner.  I have had to practice a lot of patience in my life. I have to admit though, I often feel that I have had more than my fair share of the testing of my patience. I can say for certain that I have grown and learned many lessons from practicing being patient. One of my favorite sayings is, "The longer you wait the better it is." I often use this when speaking to others about patience. I know in my life, the things I have really longed for, really prayed for and anxiously awaited for in anticipation... Those are the things that I really appreciated, really enjoyed and really cherished. These past few months I have seen a glimpse of a few of those things I had been patient for...  Blue, our Seizure Service Dog's name being chosen and at last a dream came true was put in motion. 

A dear friend who I met on Craigslist, of all places, gave a wonderful miraculous gift of $1,000 to get Blue's deposit paid so she could start training! When I think back of how we met and how we became closer than most people I have in my life...
I just have to chuckle and just shake my head in awe of it all. It was after all during the breast cancer scare while pregnant with Abigail that we met.  We actually met for the first time in the hospital parking lot. She had responded to an ad I placed on craigslist looking to buy a baby swing. She had the very swing I wanted and also gave me lots of
burping clothes, a bouncy seat, bibs and other items as well. It was a dream come true, the very "cradle swing" I had oohhed and aahhed over! Over the next few weeks we chatted on facebook and became online friends. Eventually, we exchanged phone numbers and became the greatest "night owl" phone friends ever! I was blessed to have her family
come for a visit recently. Indeed, this was only the second time we actually "saw" each other. Over that four year period we had formed a friendship that was stronger than most of my lifelong friendships. It was as if we had known each other our whole lives... Our entire families gelled together like long lost cousins. It was amazing, to look back and know that this one of a kind friendship has to be a "God thing!" 
Just before her visit Brynn had a seizure that caused him to fall. He injured his knee so I took him to the ER. The ER referred him to an orthopedic surgeon who said he needed an MRI. After a week of trying to figure out how to do this with the VNS, it was determined that he can only have a MRI at Children's Hospital. The VNS has to be turned off for any MRI. His Daddy took him to Children's to see another Orthopedic Surgeon who took better X-Rays and determined that he does have a torn ligament and his kneecap is also out 
of place. He has it braced now and does daily excersises to try to get the kneecap back where it belongs. If it doesn't he will have to have surgery. The week Prior to her visit and the week of her visit the boys had their PET scans and MRI test done. Brett developed Petechiae a day or two after each test was done only on his forearms. I couldn't get answers from the Hospital nurses or Radiology staff and took him to two Doctors seeking answers.
We never did get a definitive answer as to why, except that it may be his med combo causing his capillaries to be weakened and make him prone to bruising. The boys will both go soon for a 5-7 day EMU stay. We hope that we will get some answers from these new test at the new hospital. Brynn has done relatively well the past several months. He has experienced a seizure decline over all, and when he does have them they are generally less dramatic. He is also somewhat stable cognitively, compared to how he has been in the past. We
hope that this will continue! Brett has had a lot less Complex Partial Seizures that spread into his Temporal Lobe causing the extreme euphoria and fear. It is much easier to deal with the seizures when they are not scary for everyone else in the house. We have seen a decrease in daytime seizures overall, but they still tend to cluster when they do appear in
multiples of 2-4 a day. His visual auras/Simple Partials are persistent and no longer seem to respond to the Topamax. We did initially try to wean the Topamax due to Heat Intolerance, but quickly discovered that it caused his vision to become so poor with flipping images/double vision he couldn't really
see at all. After increasing it back, he never fully regained control of that seizure type again for more than a few hours at a time. Just this week we finally were blessed with the amazing gift of love that we have wanted for two years now! The SAMi Monitors are here! 
They were given to the boys through the Chelsea Hutshison Foundation. I donated what we had left of the money raised with bracelet sales. I hope to be able to donate more soon. It is a wonderful foundation that is helping so many children with seizure disorders! I knew within two 
hours of the SAMi's being on that this is a miracle, when it actually alarmed to a Tonic Seizure Brynn had while taking a nap. Such a wonderful feeling of peace, knowing that the SAMi's are watching the boys too while they sleep! Now, back to that patience thing... 

Most people when talking about patience think it just means waiting. It's not really about just
waiting, it is waiting while not exhibiting complaining and showing your frustration with not having what you want NOW. I know full well what Momma was talking about at this point in my life. It is seldom easy to wait for something that you need at this moment and not
get frustrated and complain. Especially when it is something that your child needs, like answers to medical problems or just a matter of being set free from something that is hurting them. In this seizure journey, my patience has been tested almost daily. I recently was thinking about patience and Momma saying I had the patience of a saint. I think I too had fallen prey to the
overwhelming desire to complain about how unfair things are in my life. How unfair it is that the boys have Epilepsy, that medications are not making them seizure free... and that is when I realized that I had become like the children in the wilderness... bickering and complaining... It's very difficult to watch your child have seizures and practice being patient. All too easy to become frustrated with
not getting answers and the solutions to make these seizures stop. It was then that I realized, it's not just waiting... It's waiting knowing that it may never come. It's waiting, believing and hoping that it will come... and knowing that our Father is in control and at the right time, perhaps it too will come! Until then, I will keep practicing being patient and like Abigail... Just keep smiling and singing joyfully, knowing that it will come! When I feel the temptation to become inpatient, I think about the children of Israel. They were right there and bickered and complained so much they just stretched out their time waiting... I am amazed when I think about how far we have come. A year ago, I never would have thought we would have a Seizure Service Dog in training and Two SAMi Monitors! GOD IS GOOD!



Please find is at Facebook.com/EpilepsyWarriorBoys to help being Blue home to help Brynn and Brett fight this Epilepsy Battle...  We do not own or claim to own the song used. The song is Blue Does By: Blue October. It is the inspiration that gave Blue her name! Please help being Blue home!!!! Donations cane be made here:
http://youcaring.com/EpilepsyWarriorBoys

Or for tax exempt donations through our sponsor, NSDF, a  501(c)3 non-profit Here:
http://nationalseizuredisordersfoundation.org/brothers-winning-the-battle-of-seizure-disorder/
*Please be sure to note that the donation is for the "Epilepsy Warrior Boys" and let us know you donated!

Hebrews 6:11-12 And we desire each one of you to show the same earnestness to have the full assurance of hope until the end, so that you may not be sluggish, but imitators of those who through faith and patience inherit the promises.

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



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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.
(((((hugs))))
~Denise, Brynn and Brett