Catching up!

 










 

There are a few of you who follow this blog of my sporadic at best ramblings who are not involved in social media, so sorry for the long span without an update. We have been on this Epilepsy journey since 2009, starting with Brynn. Never did I consider it was even possible for any of our other children to develop epilepsy. There are a few people that say things like “Your so strong.” I hate that because I am not at all strong. Without God’s grace and help, I would have never been strong enough to get through the stress and trauma I have seen in my life and surely this epilepsy monster would have put me over the top. I have likely done more research than the six neurologist, too many pediatricians, Psychologist, Neuropsychologist, two epileptologist’s and the geneticist combined trying to figure my boys condition and cause of it, what we are dealing with and how to help them. I have still not given up, like everything else in my life I am geared to over obsess over problems until I to let it go because I start to loose my mind or until I reach the answer, whichever comes first. Unless you have a child with intractable refractory epilepsy it’s impossible to comprehend the roller coaster that we live on. Every day, you wake up and brace for the unknown. Seizures seem to constantly change and evolve either for the better or worse, but nothing stays the same long. We have been blessed to see weeks without a single seizure and we have struggled when we watched the twinkle in their eyes disappear as seizures took over and stole their precious memories, learning, endurance, laughter and fight away. At least, that is how our journey has been. Plans? We don’t often get to make plans. It is much easier to live spur of the moment. We have left seizure clinic in a wheelchair half the times we have been to see the neuro and once in an ambulance for status just getting a seat belt in the wheelchair. I have forgotten to bring shoes to the ER, forgotten what medications they take, even given the wrong age and date of birth to paramedics. I am lucky I remember my own name in an emergency. I have zero sense of direction, and just so you know, I couldn’t find my own home without a GPS if I go too far from home! I am far from being smart, I know all you e-moms think I am. Trust me, I have read thousands of studies and articles about epilepsy, regions of the brain, genes, seizure types and anything else I can get my eyes on. The better I understand things the better I deal with them. Regardless of the situation, I am not the “take two of these and call the doctor if you have a problem” kind of gal. Nah, I gotta know what to call this thing we are treating, research all I can about it, know what caused it and the name and every detail about that drug the Dr. just wrote on his script pad before I put in down any one’s throat! Epilepsy has been my weakness, I don’t know why it’s happening and in spite of the years of research. I still don’t know how to fix it or even what caused it. Brett’s journey has been much worse than Brynn’s. He has had months of sleeping 16-19 hours a day and even on good days he sleeps 12-14. His seizure counts in the last six months average 3 a day. He has a large variety: Tonic Clonic, Atonic, Complex Partial and Simple Partial/Aura’s. We still do not count any seizures that are shorter than a minute, unless they come in a cluster and count that as one. When his seizure counts were lowest, his quality of life poorer. Seizure counts higher and he lost endurance, balance, cognitive function and his laughter disappeared. Since his ammonia level and platelet level scare, we never have been able to find balance again. We lowered Depakote and saw an increase, went back up added Carnitine to try to help his ammonia level stay down that helped until a few weeks later he crashed again. We added Onfi, and I assumed that he would do well on it since Brynn has and hopefully get off one or more of the other meds. That didn’t happen. What a mess! His ammonia went back up and platelets down, so we weaned Depakote. All this while Brynn started having an increase of nocturnal seizures, the Tonics came back as did the myoclonic jerks. Saw a new neurologist who is a lot like the old one the boys favorite (Dr. D). He’s almost 3 hours away, but smart and no BS kind of guy. He increased both their VNS settings and put them on rapid cycling. He also increased Brett’s Onfi and Vimpat to see a small break and watch the counts rise again.  We decided to keep things as they are with Brynn, offsetting any meds may cause him to go back to where he was. It’s likely best to just stay where we are and appreciate where he is, less is best! He has stayed on the same doses of Fycompa, Vimpat and Onfi for two years now. Brynn has maintained his 40+ pound weight loss well. His confidence is up and he is staying active happily living back in the country again. He is 16 now, so we are awaiting his new IQ test results to have him placed in a transition program that will lead to special job training.  We all really like the new house and have been doing a lot of projects around with the really huge Hickory tree we had to have cut down! We are still heartbroken over the horrible service dog experience. Brett has been affected in many ways. Just the mention of Blue can throw him into a seizure. We adopted two dogs to try to help (Flash and Daisy) and while they are fun, they still do not make up for the loss of Blue due to her unstable temperament and aggressive tendency towards men. We put a complaint in with the BBB Here: http://www.bbb.org/atlanta/business-reviews/guard-dogs/guardian-of-the-night-k9-in-locust-grove-ga-27470394/complaints and the trainer didn’t even respond. We have given up on the service dog completely. Honestly, I don’t think Brett could handle the process again and I have doubts that he could bond with another dog like he did with Blue again. It’s a really horrible thing to have gone through, but we will do all we can to make sure this does not happen to anyone else. $5,800 is a lot of money to watch turn into nothing and there isn’t much you can do about it except sue, and loose better than half the money anyway. The Service Dog industry needs to be regulated and laws need to be made to make these deceptive “Trainers” accountable for what they are doing to families. It should be illegal for anyone who has not been through training and received certification to sell a service dog. We are not the only ones, I have been contacted by so many people who have had failed service dogs. I just wish they would have contacted us before I signed that contract! When you have done all you can do just stand and wait… We have gotten this far with God, and with Him all things are possible!

~Denise

 

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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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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:
http://nationalseizuredisordersfoundation.org/my-seizure-journal-2014/

….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.   


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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… 

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*´¯`*•.¸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…

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*´¯`*•.¸“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
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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…

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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/

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¸…¸*´¯`*•.¸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´¯`*•.¸¸…¸

The Stream of Rushing Water

I have been reminded over the past few weeks of the stream of rushing water. Many years ago I heard a preacher preach about the stream. Over the years I have expanded the concept as I have deepened my understanding of my own spiritual walk as well as through helping others to understand this. It has always been a strengthening thing to think upon and always seems to help me get over the rough patches. We are all as human beings in the great big stream of life little stones. Some of us have many different jagged edges. Some of us have jagged edges of bitterness, jealousy, self pity and so on. Some of us have a few big jagged edges. Doesn’t matter which kind you have… These jagged edges prevent us from going through the stream of life as Abba Father intended. It is only through bumping into other stones (people and life lessons) that these jagged edges are broken away. It can be a painful experience to have those jagged edges knocked off, but it is for our own good! In my own life I have had

many jagged edges knocked off… at times I had to stay by the bank a while to recover from the bump that it took to knock the tougher ones away. At the bank, I saw so many other stones in recovery too. Some of those stones left the bank and jumped back to the stream before I did… others stayed when I jumped back in and I never saw many of them again. Some stones will have more bumps because we need to be smoother for the life that we are called for. Some seem to keep going, as if they never had any jagged edges… There are even stones that are going with the flow and are not really chosen for a purpose, they just keep going and will reach the final destination in the same state that they were created. Many are called but few chosen. If you are chosen, you cannot reach your destination of who you are meant to be and do what you are called to do without getting rid of those jagged edges.       

You see, when David chose 5 stones to concur Goliath, he carefully chose SMOOTH stones. He chose five, not one. He was prepared for battle, he didn’t expect it to be easy and he was prepared for the Father to help him, not do it for him. Smooth stones have more distance, accuracy and they will hit the mark. Jagged stones stray off course, fall short of the mark and seldom go where they are sent. The next time you get bumped and are hurt by the words or actions of others or the life lesson that is bringing you down remember, it is necessary and will strengthen you. It will also help you to become smooth so that you will go further, not stray from the target and will help you to fulfill your purpose. As you ponder this, think about the faith it took David to say “Thou comest to me with a sword, and with a spear, and with a shield: but I come to thee in the name of the LORD of hosts, the God of the armies of Israel, whom thou hast defied.” (1 Samuel 17:45) David knew his purpose, he knew his calling and he knew beyond a shadow of doubt that a small teenage boy could defeat a huge 9 foot giant, not of his own might but with Abba Father he could do anything!
In these past few months there have been lots of changes around here. Brynn has left baseline again and had a seizure riding his bike. His neuro says no more bike riding until his seizures are better controlled. Of course this means no 4-wheeler either, and this is heart breaking. Brynn has two favorite things to do in this world, ride his bike and 4-wheeler. We will be trying to purchase a recumbent bike for him to be safer since it is low to the ground and would be more stable if he had a seizure on it. We realize it could have been so much worse falling off a two wheeled bike, even with his helmet on. We have made some med changes (increasing Onfi and Vimpat PM dose) and have seen a better trend back towards his normal seizure baseline. Abigail has turned three and is learning to read very quickly. She had a surprise visit from her favorite person… Her Gan Gan!!!!!!!!

I am feeling very blessed lately by the generosity and love that the children have received from a few special people. Honestly, I believe in the past few months the smaller children have been given more than they ever have. $25 gift cards, headphones, remote control cars, spy gear & robot bugs for the boys, Lalaloopsy DVD’s, Dolls galore and clothes for Abigail… We even were blessed to receive a $50 gift card for immediate needs at Wal Mart. I feel so blessed and cherish those special friends and family that have made a difficult time easier to bare, it means so much to us all. I am glad to have you all in the stream with us… I am thankful for all of you that have sat on the bank with me and even thankful for those few who have knocked me a time or two. Regardless of the intentions, Abba Father will make what the enemy meant for evil into good for His glory… Thank You Abba Father for using our situation for Your glory… 

                                        Don’t ever doubt it, Abba father knows all…  

Dealing with the Present and the Past… 21 Years is too long…


We made the trip to New Orleans to have the settings set higher on Brynnons VNS Implant. I really wanted to visit with my Dad, who is now 78. I didn’t get to meet him until 1995 in person, while expecting Brandon just before we moved to MS. As a youngster, I passed notes and to him through a cousin I went to school with. I even mailed letters and pictures through an Aunt I found by looking in the phone book and calling everyone with my “old” last name. I wanted to see him, he is not getting any younger and every time we talk he says it’s been 5 years since he saw the children. So we went the night before Brynn’s appointment on Monday night November 12th. We got a bite to eat, checked in to the Hotel, brought our bags up to the room and left to go to Dad’s. I had a hard time getting around trying to remember how to get there… My mind was frazzled and forgetful. Too much to think about I suppose. Everything reminded me about Momma and riding around with her to and from the office. There we were, passing the very building she was murdered in, on the exact day she was murdered 21 years later. I thought it appropriate to take a photo of the moment, I do not think I have ever been at that building on the very day in all the 21 years. So hard to believe that she has been gone that long… Even harder to believe that all of us who loved her have not done anything to make the truth known about her murder. That is exactly what I intend on doing. If any of those that she loved would have been brutally murdered like she was, she would not have let 21 years pass without making sure everyone knew exactly Who did it and Why. So many unanswered questions, and those responsible never had to answer for their part in her murder.  It’s just been swept under the rug… in hopes that no one would ever pick it up and start sorting through the details. As I stood there at that building I wondered what keys it still holds to this day. Is there DNA evidence still there? Do the guilty still live in the area? How much of what the Police told us is actually true? Why did they not do anything, why did they fight so hard to let the guilty walk? Who really knows the truth and why after all these years have they not talked? There were a million memories and a million questions fighting for my time in the moments that I stood at the very door.. I remembered being there with Momma when we highlighted my hair… and I remembered going to pick her up and going to the thrift shop for something to do. I thought about the talks we had, the laughs and the serious talks about God and life. I also thought about all those unanswered questions and I thought about what she would look like now, what she would sound like and even what she would smell like now. When I think of her laughing, I can hear her… When I think of our talks, I can hear her voice as if she is right here. She had this way about her of telling you exactly like it was. She didn’t bite her tongue, but she wasn’t rude or cruel either. I laugh sometimes when I wonder what she would say about something… knowing full well she wouldn’t approve and would tell me so. I wish I could remember every talk we ever had and I wish I could remember every detail about her case. I wish too that it never happened and I could share my life with her. I wish I could walk in the door of that old house and see her standing ironing clothes while MASH or Perry Mason plays on the TV. I hate that I have to remember that she was taken like she was. That a human being was so full of hate and rage that they were able to stab a beautiful, loving, unselfish, dedicated Woman and Mother like her 21 times. I hate that we had that uneasy time of separation and rebellion in my older teenage years as I became a woman and stretched my wings and left the nest. I am so thankful that we were able to repair our relationship and build many happy memories before her murder. We will never have the ability to undo what was done, but it is our responsibility as those she loved and cherished to at the very least, let her memory remain alive and a blessing always. Her memory is a blessing in my life, I just wish I had more of them. I guess I will always feel like we had so many more moments to share…
    The next morning we got up, got ready… ate I Hop for breakfast and went to Children’s Hospital.
Brynnons VNS settings were upped, but his Neuro decided we will have to take his adjustments a bit slower than usual. He seems to be extra sensitive to it. He coughed when the magnet was used before the settings were raised and said he felt like he would throw up. Now that he has gotten use to it, he doesn’t feel sick anymore. When the VNS comes on he says Ahhhhhh, as it makes his voice sound like a robot. He did this the first day every 5 minutes when it came on. Now it’s getting further and further apart as he adjust to having it happen. Sometimes he talks through it now and doesn;t pause and say Ahhhh… I have talked with a few people who say that it feels like a tickle or a choking sensation when it comes on. He is doing much better with it now! We will return in December to have it adjusted higher again, unless his seizures surpass his baseline again and we can go in sooner if that happens. Yes, he is back at his baseline again! The Zonegran increase does seem to be holding on and doing it’s job… So thankful! We talked about Brynn needing to learn to swallow a pill. His Neuro decided that instead of weaning Depakene he would like to try him on Depakote ER (Depakene is the liquid form). He says that the Extended Release may work better and his dose could possibly be lower. It could explain why he has breakthroughs because the liquids of these drugs tend to work in waves, whereas the ER would stay constant. Seems to make sense to me and I am all for it. Told Brynnon I will give him $5 if he can swallow an M&M and $1 for a Skittle. Cognitively he has made some progress with the Zonegran as well. His processing speed has gained enough to make a noticeable difference when he is talking sometimes. The Neuro feels this is due to the decrease in the little seizures that we cannot see. I will be anxious to see another EEG report with the VNS to see what the difference is once the settings are where they need to be. I wish we could just get a 24 hour Video EEG once a month! That would make it so much easier to know where we are and where we are going! The Neurosurgeon says his incisions look great! They are healing very nicely and are just about completely closed now. The nurse told him the VNS is part of your body now. You need to know where it is and get familiar with it. It’s okay to touch it and feel it, it is part of you! Brynn seemed to like this idea and has been very interested in it since she told him that. He asked me what if the battery needs changed and I explained that they will have to do surgery again, but this time they will only replace the part in your chest. He asked if they will connect the wires to the new one, and I said yeah… cool huh? Then he asked what if we change our mind, what if I don’t want it anymore. I told him that they can turn it off but they usually will leave it in. He seemed disturbed by this. He asked why, so I told him they can take out the part in your chest, but the wires will always be there. We hope that this is the answer for Brynn and that some day SOON he will be sEiZuRe FrEe!!! 


REMEMBER…
~ November is Epilepsy Awareness Month!! ~

Surgery & all moved in, back to MS!!


Depart from evil, and do good; seek peace, and pursue it. (Psalms 34:14)

 
Whew, what a ride!  

Look at that smile! 🙂 Day 3 after surgery.
Creek…

The children & I are settling in, back in.. the Mississippi woods!                 What an adventure it has been! Packing for weeks, Brynn’s surgery and two U-Hauls later and here we are! Was crying out for Shalom in the home for a very long time in LA, well we got it! There is even a beautiful creek along side the rental property. What a gorgeous view! Brynn has had so much fun exploring and is looking forward to many days on the creek once he is healed all up! Love the peace we are feeling… absolutely wonderful! Who doesn‘t move to another state and have a few hiccups… I am just glad that the move is complete, well almost. There are still a few things in LA that we have to get here to MS.

In Recovery…

On Oct. 25th Brynnon had the VNS Implant  Surgery. The surgery went well, no complications during surgery. After surgery, well things could have been better. He had a difficult time waking up, had a seizure upon waking and threw up until just before midnight. After that, things have gone uphill. He is healing well, feeling good... Incisions are looking good so far, and he is eating well too!

http://old.epilepsyfoundation.org/about/treatment/vns/vnssurgery.cfm#.UJH_vIUhxq4
 
The children are having fun, getting a break from major Home School work last week and this one. We will prayerfully be back on a better schedule next week, these past few weeks have been so busy and rough! Most of the unpacking is complete, pictures are up… and even staying caught up on dishes and laundry! Ah, the PEACE!   

The LORD bless thee, and keep thee:
The LORD make his face shine upon thee, and be gracious unto thee:
The LORD lift up his countenance upon thee, and give thee peace.
And they shall put my name upon the children of Israel; and I will bless them. (Numbers 6:24-27)

 

Seizures are back to the 4 a week (30 sec. or greater) baseline, mostly Complex Partial, some Tonic and a few Tonic Clonic… Praying that this VNS will help him, but fully aware that this is going to take some time, lots of time if it does help before we see it. Starting to see the little ones return causing the absence type and the little cognitive ones that cause stuttering and slurs when he is talking… The Zonegran increase really helped those, not sure if the return is due to the stress on his body from surgery or if the increase of Zonegran is wearing off. Not too worried, as long as the bigger ones stay at 4 or less a week. Least that is tolerable and so much better than the seizure monster we saw in August… 

\0/ How beautiful upon the mountains are the feet of him that bringeth good tidings, that publisheth peace; \0/ that bringeth good tidings of good, \0/ that publisheth salvation; \0/ that saith unto Zion, \0/ Thy God reigneth! \0/ Thy watchmen shall lift up the voice; \0/ with the voice together shall they sing: \0/ for they shall see eye to eye, when the LORD shall bring again Zion. \0/ Break forth into joy, sing together, ye waste places of Jerusalem: for the LORD hath comforted his people, he hath redeemed Jerusalem. \0/ The LORD hath made bare his holy arm in the eyes of all the nations; and all the ends of the earth shall see the salvation of our God. Depart ye, depart ye, go ye out from thence, touch no unclean [thing]; go ye out of the midst of her; be ye clean, that bear the vessels of the LORD. (Isaiah 52:7-11)


  Don’t Forget!!
NOVEMBER IS EPILEPSY AWARENESS MONTH… 

Children’s trip update


Brynn’s appointment went well. Dr. Einstein was there today after he sent the Intern in… I gave a good lecture to the Intern who will become a Pediatrician soon. Explained to her that Brynn should have been diagnosed at two years of age or even earlier. Explained that his symptoms were overlooked and explained with “Night Terrors, Infant Gas, Articulation Disorder ect.) Told her that I made a promise to myself that I would tell this to every Intern and Pediatrician I come in contact with. If someone would have listened to me many years ago we could have helped him a lot sooner. We are going to schedule a trip down to chat with Surgeon about VNS and set the VNS implant surgery date. He thinks it will be a valuable tool for Brynn, but cautioned me on thinking it is a cure for him. He said we can Hope for a 50% reduction, but he doesn’t expect it to be that for Brynn. I appreciated his honesty. I expressed my fear of the future and said I want it because I want to have any tool that could potentially stop status, he understood and agreed that it is important to have any available tool to help Brynn.

Brynn 12 Brett7

He said because he is Refractory and failed so many meds he doesn’t see him being seizure free, but it is important to only do one change at a time. By the way, if he has failed so many, why is still on all the failed ones except Trileptal? We are going up to 400 mg on Zonegran. We’ll keep the Depakene at 1,250 mg twice daily, Vimpat 200 mg twice daily and Klonopin .5. Once Brynn gets back and stays at his baseline average of four seizures a week for a while we will try to wean Depakene and introduce Onfi, since Brynn’s brain seems to like Benzo’s. While doing the Neurological exam he noticed the small seizures I have been asking about for two years now, asked me if I noticed him spacing out… Told him he has always done it, he said he didn’t notice it before. Told him I call it checking out, that sometimes he goes back to what he was doing, sometimes he doesn’t remember what he was doing.

Tera 22, Abigail 2 and Brynn 12

Of course this is probably seizure activity that we cannot see and he said once we get the big ones under control we need to work on those as surely they effect his daily function. So thankful he noticed them… His Neuropsychological report from a year ago questions is this is happening because he noticed it while spending time with Brynn. His 3 day EEG even mentions seizure spikes with no clinical signs. So, productive visit for Brynn… many more questions for Mom… Still feeling insecure about all this, as I don’t feel like my Brynn is safe. I still daily fight fear of what if, when and why. On the why, we talked about that too. He said he just doesn’t feel like we will get anything back from genetic

Brandon 17, Abigail 2

testing. Even if we did it would not change anything. I said well at least I would know WHAT it is. He said we cannot go in and rewire his brain, it’s just not wired correctly. There is not easy fix here and having a name for it is not going to change it. I disagree, but respect and understand his opinion as a physician. I am in hopes that increasing the Zonegran will bring positive changes… and I am looking forward to ANY change for the better that the VNS will give Brynn. He suggested I wait on the Neuropsychological re-testing, as he needs to be in better Neurological shape for it to be accurate, to see where he is in comparison to his baseline cognitive function before that horrible seizure that took away two years. He looked at the 2006, 2009, 2010, 2011 & 2012 writing samples from Brynn’s home school. He wouldn’t talk about regression, says it’s Cognitive Disability. Not looking forward to that trip again, but perhaps we can get a room next time and actually visit family. There is always Ronald McDonald house for the Surgery day. Here’s to HOPE… and lots of it! It’s all in YHVH’s hands anyway, what do they know… I got a message while at the Dr. and my phone was off. The buyers for our property were approved for the loan, so looks like we will be moving really soon… No idea where, LOL It’s all in the Father’s hands… Don’t want to make any more poor decisions like we did coming here. We will walk away with considerably less than our down payment… and loose all other funds we spent getting Bri’s room built and so on… Oh well, live and learn… boy did we! Kind of excited about what the future could bring… ~Denise  

Horrible Month…


Wow, this while month has been completely stressful in every area of our lives. The month of August was terrible for Brynnon, not counting the small seizures (Absence) his total for the month was 65. He suffered 38 Complex Partials, 23 Tonic and 4 Tonic Clonic. This all started with 7 Tonics in a cluster on July 31st. His average was 4 per week in the months of April-July. On July 13th we completed the wean of Zonegran to try to help his cognitive function. He was at MedCamp the following week. He did have a Tonic Clonic on 7/25 that was 1 1/2 minutes. I considered it all to be stress, especially since my Husband was offered a job in NC. So off to NC my Hubby Flew to talk about this wonderful opportunity.  Before he even landed our cash buyer on our property backed out! Argh…   Our 2 year old Daughter took off running from us with a pencil and fell lacerating her eyelid. If that wasn’t horrifying enough the ER left a pencil shred in her eye. Lots of other little stress inducers… I assumed it was stress… 
All assumptions came to a crashing halt when I went back over all the video and filled in the seizure calendar. I was horrified at the amount of seizures. Horrified even more that I let anyone convince me that 4 seizures a week was okay. Horrified that I had let my guard down and let this go on… 

  It’s one thing that I was giving that extra Klonopin for clusters several times a week…..



When I saw that it didn’t seem to be working and worse this didn’t seem to end. I made the call to his Neuro. He started him on Ativan to break the clusters up. It took three nights to see any effect, but gradually it did work and broke the clusters up. The assumption was made that it was taking the Zonegran away. Looking at the calendar it makes sense. So we started the Zonegran again. 100 mgs for 4 days, then 200, then 300. Finally on the 3rd night of the full dose everything has calmed down. Not quite where he was before August, but certainly much better. Brynnon has always completely detested Zonegran. It’s a capsule and he cannot swallow it, so we put it in pudding. We will go back to Children’s on 9/11 and we will be talking about the VNS implant. His Neuro says it’s best to think of it like a medicine. Some do not see results at all, some receive seizure freedom.He feels Brynnon has about a 33% change of receiving a 50% reduction of seizures with it, but it will take at least 6 months to see this result. I have already decided it is worth the risk based on the assumption that it could help him in the event of another status seizure and it would be wonderful if he could be one of those that it stops all seizures! He also mentioned Onfi… Knowing how great Klonopin worked for so long and after seeing the Ativan kick in and get control of those clusters, well I think Onfi is worth a try with it being in the Benzo family. I just don’t know where they will fit it in. We will surely be talking this over next week. After going through these past weeks, I know one thing for sure… FOUR SEIZURES A WEEK IS BETTER THAN 13 or 14 A WEEK, BUT HE NEEDS TO HAVE ZERO. So, praying that September will be a better month for Brynnon and our family.

My sweet Brandon will be 17 on 9/5. I just cannot believe that time has passed so quickly. I have always reffed to him as a “Dear Child” after hearing a sermon years ago. The Pastor said a dear child was one that was after the Father’s heart, obedient to his parents and full of love for others. That Brandon has always been. He only lied to me once in his lifetime, about whether he completed his home school work. I do  not remember ever having to discipline him. All he ever needed was to be told, sometimes firmly, but that was enough… 
 

Okay, I put this off long enough….  Went back to Children’s for our June appointment. Brynn is currently stable at an average of 4 Complex Partials and 1 or 2 tonics a week. Just ONE Tonic Clonic in the whole month of June and one so far in July. May be the best we will get… Could get better…. could get much worse and fast. Wouldn’t it be nice to know…


 Cognitive functioning has slowed again, and we have weaned Zonegran.   Keeping Klonopin, Depakene and Vimpat for now. We went for a Video EEG on Thursday and Friday last week. He had a good night, so I am unsure if they caught any seizures. Talked to the Eleptologist about Brynn also. She said that he has Congenital Intractable Multifocal Epilepsy.
I asked if it caused his Cognitive Disorder and MR,
she said no… He was born that way. She also told me that with his left Occipital Lobe, Frontal Lobe and Right Centrotemporal .     He actually could be blind, could have not talked or walked. She said he does very well in spite of what is going on in his brain and that Children’s brains are amazing that they can go around these issues and one area takes over the others lack. She told Brynn he was brave and she was proud of him for doing so good through the testing… and she told him he is AMAZING! We talked a little about Genetic testing, said I will have to ask his Neuro about that. I mentioned Fragile X, she said most Fragile X  children are moderate/severe MR, he is mild MR with Cognitive Disorder, could be Fragile X but could be Prader Willi or others too…

Hmmm, Prader Willi… that syndrome that I was laughed at for suggesting to that Neuro before his second known Tonic Clonic? Yeah, oddly enough I haven’t even thought about that syndrome in the two years since Brynn’s Epilepsy got out of control. Looking back on the conversation I should have asked tons of questions… but I froze mentally after she said he could be blind… could have never learned to talk and walk… I was so taken back by the miracle of it all. He can ride a bike, a four wheeler… He may only read on a 1st Grade entry level, but you should see him change a tire and work on a bike…. You should see him play on his iPad… You should see him laugh and play… 

          
Of course now I think what if it moves, starts somewhere else? What then? No negativity Denise, you didn’t come this far to become a faithless fearer of the future! No, take it all one day at a time and be ever so grateful that my precious Brynn can indeed walk, talk and see. Appreciate everything he can do and make the best out of what he has, whew. So… onward we will go. Going to ask again for genetic testing. I went back over his previous Video EEG report and I understand it better now after talking to her. I understand th faulty wiring comments better and I actually comprehend what dysfunction in the brain means. I still have a lot to learn about this Epilepsy monster, but I have come full circle to reality…
The reality is that he was just born this way. Our Abba Father makes no mistakes. He is a beautiful miracle, as all children are. He just sparkles differently and his light just so happens to flicker too much at times. What an amazing boy he is indeed! Hard to believe in just a few months he will be a… TEENAGER!
 Brynn
is so excited to go to Med Camp on the 15th for a whole week!! I am excited for him to have such a wonderful opportunity to have a fun filled week in a medically supervised environment to ride horses, canoe, swim, hike, archery and most importantly meet other children like him! 🙂 

 
 

Lots of beautiful sparkly children will be there… just like him!      🙂