Seizure disorder

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It’s been so long…

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I don’t even know where to begin! We are in a happy place, with less seizures, more smiles and lots of laughter! The Aptiom has been amazing for Brett, in addition to drastically changing his VNS settings. He has gone down to minimal seizures, with having only a few a week. Recently, he went the longest ever without a seizure for 11 days! He has done a year of PT and OT, worked really hard in both and made exceptional progress. He hasn’t used his wheelchair except for a handful of times, in almost 2 years. Initially Brett had fine motor control of a 2-4 year old. He is in range with his IQ now at 6-8 age level. He will start up OT and PT again soon and we look forward to seeing more progress. We also hope to get him into vision therapy, as he has a visual disorder that they haven’t figured out just yet. We will finally get Brett’s Service Dog in a few weeks. It has been a LONG and painful journey to get here… but it’s time. He has been through a lot and healed so much since then. I am forever grateful for the anonymous donor that donated through the Chelsea Hutchison Foundation as well as DomestiPups for this amazing miracle for Brett! 

I still can’t believe my Epilepsy Warrior Boys are 18 and 13 already!! 

24909877_10214496209856270_659568372617918225_nbrynn18

Brynnon is a handsome man now, at 18 he is still funny as ever. He still has a few seizures a week, which causes some aggression and irritability, but other than that he does relatively well. He has done well adapting to the world with his moderate intellectual disability and still loves to fix things, especially taking apart things to see how they work! 

With the time available and money needed I figured out that for me, sewing is therapy! I started the adventure wanting a quilt for Brett. When I saw the prices, I decided to make one for him. Well, that led to me making ones for all my children. I started making VNS Magnet Bracelets along the way too. Oh how I do so greatly enjoy making special needs items that will help a child feel special. I started doing vinyl decals for EMS alert, since we use them I knew other parents had a need for them as well. I got busy enough that I opened my own Shop on Etsy! Check it out! 
http://etsy.com/shop/EWB ! 
Here are some of the items I have made for our family and other special needs families! 

Say Bye Bye to those black  plain medical bracelets that come with your VNS magnets and HELLO to having your favorite colors and your name embroidered on yours. Wear them
confidently because they are stylish, adjustable and comfortable. What are your favorite colors?
Let me make yours today!

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Spinning Wheels

IMG_6778We have been in AL for almost two years now. Frightening thought, considering that I had anticipated better care for the boys here and ended up with less than they had before. To date, they have seen 4 Pediatric Neurologist, 1 Geneticist and still just spinning our wheels as far as the “why.” Currently, we are traveling longer than we were from MS to New Orleans just to see a Pediatric Neurologist who at least seems to  have the ability to think outside the box. I still would never leave MS given the chance to do that over!
I don’t think anything could have prepared me for this journey with Brett, even Brynn’s journey was so different, looking back seems less stressful and complicated in comparison. IMG_6885
Tonight, Brett had a mild seizure as he walked down the hall towards his room for bed. I stood there talking to him and when he was ready we proceeded to his room. I read their Warrior Devotional, said our prayers, kissed both my warrior boys on the cheek and headed out the room. Brett’s headphones are broken, so he wanted to listen to his music on his iPod dock. Simple, but unacceptable to Brynn who had to take an Ativan minutes before because he was slurring speech, racing thoughts just spouting out and his left arm was jerking in those familiar myoclonic twitches, all signs it was not going to be a good night. So argue they did and Brynn took the iPod from Brett and slung it to the bottom of the bed. Abigail calls out “Brett’s having a seizure.” Indeed, he is, so I get the magnet and swipe.
He IMG_6721seems to come around and I assume that’s all. I explain to Brynn that his headphones are broken and it would be nice if he could listen to K-Love to go to sleep. I find K-Love, wait for the play button and for it to load and ahhh, a lovely song is playing. All this time Brett has been tummy down on his bed with his chin on his arm on top the wood low headboard. I say “Brett, scoot down and lay right.” To which he answers, “Who’s Brett?” I ask him if he is okay and he looks at me, and I know by the look he has no clue who I am. So I find myself standing there thinking, how wrong it is that this is “normal” in my world. Nothing could have prepared me for the heart-shattering pain and fear I felt the first time I heard those words, yet here I am staring at my precious blue-eyed baby boy who just said them and I didn’t feel panic. As with any other part of our IMG_6648Epilepsy journey, and many others like us, I was not informed or prepared to ever hear those words. So many things that have happened have been exactly the same. I can’t tell you how many times I have stayed up and researched all  night something that happened just trying to make sense of it. I never heard about SUDEP until I read about Danny on Dannydid.com.  Ms. Willa who did Brynn’s first EEG told me, “It’s okay Momma, people don’t die from seizures.” The very first Pediatric Neurologist Brynn saw after his first known Tonic Clonic while sleeping said, “People don’t have seizures while sleeping, he won’t have another at night it will be during the day, if he has another, everyone is allowed one.” The second Pediatric Neurologist said, “His Cognitive challenges and seizures are not related.” I never heard nocturnal seizures, even though Brynn had his first Tonic Clonic seizure while sleeping until I researched it. Thankfully, we went for a second opinion and stayed there for a few years, long enough to be educated, eventually get Brett diagnosed as well. I have been known to say that no one gave me a book, a pamphlet or even some printouts that could explain most of what we have had to get blindsided with. I imagine it would be frightening to tell a parent, one day your child may not know their own name, how old they are and they may become afraid of you because they do not know who you are. I still feel as though if I had the proper knowledge it may have been less scary and could have saved me hours researching the medical literature available online! Hopefully, we will make some progress soon. I feel it’s important to get those answers, the why my two boys have this obviously genetic seizure disorder and where do we go from here would be nice too!
So here’s to you dear parent with a newly diagnosed with epilepsy child. 
1. There are at least a thousand things that could happen and very few are positive things. The most important advice I can give is to take it one day at a time and keep a really good seizure journal describing every detail until you figure out what type they are.
2. Epilepsy can damage the brain, but most seizures do not. If you feel that your child is showing signs of regression find a psychologist or neuropsychologist and get testing done. This will not only  give you a reference point should true regression occur, but it will likely also help you understand and strengths and weaknesses your child has.
3. Changes are going to happen. It’s rare to come across a parent who says that their child always has the same exact seizures at the same exact times. For most parents this can be the most frustrating part. You can never know when it will happen and this can cause a lot of stress and anxiety for a parent if the seizures become or remain intractable. This is also known to cause stress on marriage and friendships. It is imperative that you have a support system in place. Know the symptoms of Caregiver burnout, especially if you have other stressors in your family dynamics:
http://www.helpguide.org/articles/stress/caregiving-stress-and-burnout.htm
4. Please, I cannot stress enough how important it is to learn the basics of seizure types and their symptoms.  I posted about this not long ago:
https://epilepsywarriorboys.com/2016/04/04/what-does-epilepsy-look-like-anyway/
5. Find other parents! There are several groups on facebook, you can find them by searching on facebook for “Child Epilepsy,” or similar terms and you may even have a local support group. Contact your local or State Epilepsy Foundation.
6. Know when to seek a Level 3/4 Epilepsy Center. The guidelines are here:
http://www.naec-epilepsy.org/spec_care/guidelines.htm
and to locate one use this link:
http://www.naec-epilepsy.org/find.htm

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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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Abba Father is always faithful…

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

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

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


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


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

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

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

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


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

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

Brynn, Brett & Abigail ~May 2010~

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

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

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

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


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

Brynn, Brett & Abigail ~January 2014~

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


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

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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´¯`*•.¸¸…¸
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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…  
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Ones Mountain is anothers Molehill…

 Being Brynns Momma has brought me to many support pages, so many blogs and many places reading about some really special children. Across the Special Needs community, even the Epilepsy support groups there are as many varied parents as there are children. Some parents tend to take it all with stride, on the outside it appears that they have it so together it makes you wonder just how they do everything they do. Others are so fragile, you pray that the next moment will be met with relief as you just feel that they cannot possibly handle another thing. I tend to be somewhere in the middle, at least I would like to think I am.
 

 I remember when Brett was 2 and I found out that his “never-ending sickness and reoccurring respiratory infections” was actually asthma. I remember how traumatic it was for me to watch as they pricked his little back 25 times to do the allergy test. For me as a parent, before that moment even with four older children at that time, that was the most traumatic thing I had ever experienced with my children. The first time he had to be rushed to the ER because he couldn’t breath despite the treatments at home was more than I thought I could bare… Not because I couldn’t handle it, but because to me it was the worst thing ever. My reality, my world and my perception was shaken and changed forever in under 15 minutes…

It was as if the whole world stopped….. In one split second.

In S L O W M O T I O N….
I watched in horror as he laid on the floor jerking, foaming at the mouth…. His Daddy with him talking to him, calling his name… 
Brynnon, Brynnon…. Oh GOD please help him… I think it’s a seizure… 
He’s not breathing… I am screaming to the operator… 
Flagstaff Street…. F L A G S T A F F Street… 

Oh my God, please Abba Father…
Please help him breath… What is happening…. Oh God please make it stop……. Flagstaff is on the left…… Oh God please hurry…… 

He is breathing…… He stopped Jerking……… He won’t wake up…….

Thank God the ambulance is here…
 Ah, now this was different territory than I had ever experienced. To see your child with eyes rolled back, turning blue, shaking and not knowing what is happening… that is by far the scariest thing I had ever experienced. My perception of the event in that moment was a billion times worse than it was. Simply because I had never experienced anything like that in anyone, or my child.


Brynnon….. Brynnon….. Oh GOD Please No…….
Screaming for help, no one can hear me…. 

He’s not breathing….
HELP…. Okay, I can do this… Turn him on his side….
His Daddy comes… Gets on the bed with him… Holding him……
Time always seems to go so S L O W L Y….
911… My Son he is having a Seizure….  
He is not breathing……..
He will be 11 tomorrow…


Over  the years, my perception has changed some… I am still terrified when I see a Tonic Clonic seizure, but as long as it stops before that 5 minute mark I can handle it pretty well. Once it reaches over 5 minutes my adrenalin runs wild and I am scared to death that he will not come back to us. The Complex Partial and other seizures I can handle a bit more, those too scare me after the first minute or so. I guess because I have seen so many, your tolerance grows as with any other thing. So when you come across a Mom, a blog, a support site and you are tempted to think that person is making a mountain out of a molehill… remember that everyone’s mountain is different.


I think Brynn is having a seizure… The words echoed in my mind…. 

Handing Abigail to somebody…  I can do this…
TIME… What Time Is It?????? 1:39 AM…. 

Oh GOD he is not breathing… Call 911, we are supposed to wait…

TIME??? 5 Minutes…. He is still not breathing…

His lips are blue… His chin is BLUE… CALL 911….
He’s not breathing…….  I am Suctioning his mouth… 

He’s still not breathing…. Oh Father please let him Breath…

Okay time he is breathing and lightly jerking…. Time…. 12 minutes….
He is going into another seizure I think… Okay, Brynnon stay with me… 

He is having another seizure I think… and another…
Fire Department is here… Ambulance is here… 
A shirt…
I can’t believe I forgot his shoes….

 I have had people express that they don’t know how I do all I do, when I feel like it will never be enough.
I too have had a family member look me straight in the eye and say “There is not a GD thing wrong with that boy.” and another say “He’s not retarded, if you keep treating him like something is wrong your gonna make him retarded.”  Ignorance abounds in every area of the world. In our families, in the grocery store, in schools, even in the very Special Needs Communities that are supposed to help and support hurting parents. Some people think that all children affected with Cerebral Palsy are severely intellectually disabled. Some people think that all children that are Autistic are completely non-verbal. Some people think that all persons with Epilepsy will be intellectually disabled. Some people, even physicians, think you cannot have seizures while sleeping.  Some people think there is only one degree of intellectual disability. Some people just do not think. They assume that they know what they are talking about, refuse to take the time to learn anything… because to them your mountain is just a molehill. Nothing you could ever say to them will change that… 

 So let the tears of that hurt roll off that mountain and eventually, it will create the most beautiful garden for you and your child to sit in and explore all the beautiful flowers that the Father has created in His awesome wonder and perfection…

Each and every one of those special children whether disabled or seen by the world as perfect are indeed perfect. God does not make mistakes… and even if you feel like you cannot handle the mountain in your life. I can tell you with all certainty, that God knows your mountain and He would never give you more than you are able to bare. Every parent has their own mountain to deal with on a daily basis. Some more scary, some more life threatening, some more stressful, some more life altering than others… but never forget… all are traumatic to that parent. Yes, your mountain may be a Molehill to someone else and even more shocking your Molehill may be a Mountain to someone too… Just remember…
“I can do all things through Christ (Messiah) who strengthens me.” Philippians 4:13
 

 

prayeroffaith

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!! ~

prayeroffaith

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  

prayeroffaith

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!      🙂