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... 

Surgery countdown, Moving and back to Peace!

WINNERS!! $5 Math Challenge!!

Here we go... Surgery is in 10 days, next Thursday for Brynnon's implant. We should be able to leave the hospital that afternoon after the approximate 2 hour surgery. His will be on when we leave the hospital, which is relatively new as I understand it they have been doing it this way at Children's Hospital in New Orleans for about 6 months. With the Zonegran back on board and increase to 400 MG he has returned to his "normal Baseline" of 4 seizures a week lasting over 30 seconds. We will be moving as well, planning to sleep in our rental soundly when we get home from the surgery. We are greatly looking forward to going home where we can have PEACE again. Recharge after the last 4+ years, which have been terribly hard on us as a family.

Brynn and Brett with Pop Ollie in MS

The children and I will be returning and my Husband will stay here for now. Trying to make it the least stressful as possible for Brynnon. Hard to do when he loves the neighbors here so very much. Going to be leaving the two oldest children (22 & 20) here as well, that just makes things harder on us all. I know that in the long run it will all work out and this move will bring the needed changes our family desperately needs. So, home we will go... back to the peace and quiet that we loved so much. Back to nature and back to good God believing and fearing people. People call Pearl River County Mississippi God's Country and Holy Land USA. The reason is the remarkable peace that you feel there, it's like no other. We have been in many places and that is the only place that ever felt like home. I will update when I can, will be back and forth over the next week or so... and looking forward to going HOME when the surgery is done. The next ten days will be intense... Packing, Moving things, surgery, moving more. We will be having some fun and visiting family for a few days too though! Prayerfully the nest time I post, it will be from the Mississippi woods... Ahhh, I can almost feel the peace just thinking about it! :)

Brett and Abigail

         

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... 
 

Brynn had a wonderful time at Camp Alabama provided by Med Camps of Louisiana! For 5 days at Camp Shining Stars for children with Seizure Disorders. He was able to ride a horse, swim, shoot arrows, enjoy nature and he even danced! What a blessing it is to have him have so much fun with children just like him. Priceless, you just cannot put a price on his tremendously happy smile and knowing he feels like he belongs somewhere. Please visit http://www.medcamps.com/ to learn more about MedCamps. They provide Camp experience in a medically supervised environment at no cost for children who other wise would never know a Camp experience. 

They have a wish list for musical instruments, archery arrows, soccer nets, bedding for twin size beds, pillows, art supplies, golf carts, puzzles, costumes, board games, Gift Cards, beds, (Wal-Mart, Target, Lowes), Paint balls and CO2 cartridges. They also have an "Adopt-A-Camper" Program. The program covers 9 wonderful Camping programs for children with Spina Bifida and Orthopedic Conditions, Cerebral Palsy, Developmental Disabilities, Asthma, Autism, Sickle Cell, Hearing/Speech/Vision Impairments, Epilepsy/Seizure Disorder and Asthma.  
                                                

  We got the 21 hour Video EEG results back while Brynn was away at Camp. No seizures were captured on the 21 hour recording! He of course does still have the same areas of dysfunction as well as the Epileptic Spikes. At this time, he does not appear to be in a state of Encephalopathy. We will keep the three medications exactly as they are and will only change anything if he starts a downward spiral again. I will be getting him in to the Neuropsychologist soon to see where he is cognitively. I would guess he is about where he was last August, perhaps making strides in a few areas, but perhaps falling back in a few also. I am looking forward to moving soon... More about that another time! :) Brynn did get approved for SSI last week too. I expected to have to fight for it and he would be closer to 18 before he got approved, but they approved him the first time. Such a relief knowing that if anything happens to either my Husband or I or us both, he will be taken care of. Here in LA there is a 5-6 year waiting list for Waiver services for MR children/adults. I have already picked one of his siblings and discussed with them all that someone will have to take care of him, he is blessed to have 3 older and 2 younger siblings. So it's only natural to look forward... with praise and thanksgiving that the Father got us this far... and knowing that He and He alone holds the future... With that I look forward with great anticipation, praying for His will to be done, now and always... ~Denise

 

    

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!      :)