Author: prayeroffaith

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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… 

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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

         

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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  

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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… 
 

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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
 
    
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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!      🙂






       

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Not going to be Seizure Free??

This video is Brynn in Hyper Mode…
 Brynnon has been on Vimpat for 45 days… out of the 45 days he has had 22 seizure free days. It has cut down almost all of the twitching at night in between seizures. When he started Vimpat it was like an awakening, amazing how awake and hyper he was. This effect lasted for the first two weeks, then we saw a decline… and daytime sleepiness in the third week. The fourth week he was not as hyper, but definitely more awake cognitively. This effect seems to have gone away again this past week… he’s not as slowed as he was so I can only assume it is seizure activity related. Trying to be positive, and stay focused. Last week the I called his Neurologist to update him on Brynnon’s progress. He said he is not going to be seizure free, but because he has shown improvement at this time, we will keep all medications the same as we do  not want to raise the Vimpat dose or change anything until this honeymoon is over. We don’t want to introduce more drugs at this time because we may need those drugs in the future in an emergency situation. I have said it myself, but it stung my heart when he said “He is not going to be seizure free.” Well, I went into Children’s thinking they could get him seizure free. I assumed he wasn’t going to be seizure free and we need to take full advantage of any seizure free nights/days once the 4th seizure med was introduced. We are trying to let him ride his 4-wheeler and just be a child as much as possible. The fact that he has cognitively improved surely helps his quality of life, but it also let’s us see where he really is cognitively. It will be a year since the extended seizure, that took so much of him away, in a few months. He is not the same child, he is not anywhere close to where he was in learning. It looks like he is so slow to go forward the seizures just knock him right back. I still do not know where he is going max out with his IQ and Cognitive Disorder. I will take him back next fall to the Neuropsychologist to see where he is and where he is capable of going. The Neurologist at Children’s mentioned doing testing as well. Perhaps they would do a better job of understanding exactly what is going on and what his full potential will be.      

 Yesterday we scaled back, back, back, way back with Brynn’s Spelling… He has not retained much at all over the last 8 months… Brett (7) is doing very well… he’s actually about a year ahead Brynn (12) in Spelling and Reading,  although they are not too far apart in Math and Handwriting. It was great at the beginning of the year to teach them both the same lessons. Depressing to see Brynn get left behind. 

Tera 22 Brett 7
Tera and I

Brett tells Brynn that he is pretty smart to do everything he does because he has seizures. What a blessing…

Abigail is TWO!!
Brandon (16), Janice (20), Brynn (12), Tera (22), Brett (7) & Bri (20)
Tera (22)
Abigail’s 1st skinned knee 😦

Abigail had her second birthday on the same day as Tera got her Medical Assistant Diploma. It is great to see Tera doing so well. I am so proud of her. She has a great job at a Doctor’s office and is still working at another job nights and weekends. 

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Roller Coaster


Roller Coaster… Roll On… It’s kind of hard to enjoy the ride when you have no idea where the next loop is or even when the ride will come to a halt. So much going on in my life at the moment, it is actually hard to just enjoy the ride. Last week I learned that someone I had gone to church with as a teenager passed away almost 15 years ago and I had no idea. It got me thinking how we just never know… Yeah, I of all people already know all too well you never know, but sometimes it is so easy to get wrapped up in the moments that take your breath away and sting your heart that you forget that we are not promised tomorrow. I recently learned that a close internet friend, close to my age has cancer. What a stark reminder that we should be enjoying each day more… appreciating every moment as though it could be the last…
This is my letter I got today… Hand delivered… Spontaneous love written all over it, courtesy of my Brynnon!

~13 days since Brynnon started Vimpat, and he has had 5 seizure free nights! The last daytime seizure I saw was the day we added Vimpat!~
//www.youtube.com/get_playerHe got to go to the Monster Jam! He talked about it for 3 days, I finally decided he was going to get to go  no matter what! We had a wonderful, glorious week of the  alert, awake Brynn… the “bAd OnE” that I really missed! He was hyper, back talking… he was playful, funny and he was mischievous. That’s the Brynn that is somewhere hidden behind those seizures… behind the random crazy firing of neurons in his brain… We are seeing a decline of that sparkle in his eyes already… His speech is slowing again, he is tired and he is cranky… His thoughts linger and his eyes are dim… That little light bulb is getting dimmer by the day. Only one seizure, Monday night was over 1 minute in the 13 days so far. All the others were less than a minute, which is great… We just have to learn to appreciate ANY and ALL POSITIVE! 

Life is like a Roller Coaster for everyone that ever has lived… Some just have more highs, more lows and more surprises than others! I was talking to my cousin, who I consider a dear friend today. She asked a question that I have asked myself too… when did it all get crazy out of hand… It was after the second known 10+ minute Tonic Clonic… in the early morning hours of Brynnons 11th Birthday. After that second “known” seizure is when it all came crashing down… that’s when my peace and life as I knew it was gone. It was that day that I questioned every moment before and would begin to question everything after. Those weeks I spent on the sofa bed with Brynn and Abigail were my training ground to become Brynn’s fighter, his voice and his Mom in a way that I couldn’t be before. It was there on that sofa bed that I learned about different kinds of seizures… it was there that I fought through the fear to face the seizures… and there that I knew that all I could do for him was ask questions, research and beg for answers… it was also there that I watched as part of him slowly slipped away. I didn’t know much about Epilepsy then… I didn’t know what Intractable or Refractory meant then… After we started Depakene, life seemed to go back to a new normal. The seizures slowly faded away into the background and it was lovely to feel that it was all going to be okay. There were 8 months in between his Birthday Seizure and the 12+ minute Tonic Clonic. That early morning in August I had no idea where we were headed. I had no idea how terrible epilepsy could be… I soon learned that all my little worries that I had, all of Brynn’s life… they were all clues. They were all pieces to the puzzle of Brynn. From the “Night Terrors” to the “Articulation Disorder” to the “Below average IQ,” and everything in between… they all meant something. It just took ONE Doctor, who I am so grateful for, to actually read ALL of his medical history. To ask the right questions and to listen to the answers. So here we are… yes, I am facing it… yes, I know only Abba Father can change it! We don’t have all the answers yet, but we do have hope… We will never ever give that up!

 


   

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Children’s New Orleans Update

  It was a great trip to New Orleans for the Children’s Hospital appointment last week. Spent some time Thursday with Family and Brian’s first boss and our Church of the Nazarene friend Leo, on Friday after the appointment. One of these trips we need to save up and actually visit the Zoo or the Aquarium! Abigail did great until she realized we were sleeping in the Hotel. She said she wanted to go home! It was nice to get away and spend time together the day before and nice after to visit too. Brynnon’s appointment went well. Doctor has upped the Zonegran dose to 300 Mgs. and requested the Name Brand as being Medically Necessary. Of course the insurance wants us to finish the Generic off first. Once he is on the increased dose and the Doctor has lab results back the plan is to move up on the Depakene next, he is already taking 1250 Mgs. a day. I am a bit nervous about that decision, as his blood levels a few months back were 96 for the Depakene… but it does seem to be the best to keep the extended Tonic Clonics at bay. The Tonic Clonic’s he is having are quick at the moment, and we don’t want that to change, but he is still averaging 4-6 clear obvious seizures a week… Not to mention the questionable Seizures or the ones I do not exactly know how to classify. I was not surprised when I read his EEG report and saw that there were 2 events each night that looked like clear seizures to the Epileptologist that did not read as seizures on the EEG. EEG did confirm he does have Seizures with no clinical signs, as the Neuropsychologist questioned also. I took home a copy of the report, wish I knew what it all meant.   
“So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.” (Isaiah 41:10)

Abnormal Electroencephalogram due to the presence of:
1. Persistent focal slowing over left occiput.
2. Intermittent to focal slowing over the left centroparietal head region.
3. Intermittent bursty slowing over the left anterior quadrant in sleep.
4. Frequent epileptiform discharges over the right centrotemporal head region.
5. Infrequent epileptiform discharges embedded in the left centrparietal slowing.
6. Infrequent epileptiform spikes over the left occiput.
7. Three electroclinical seizures that apparently arise from the left anterior quadrant.
Clinical Correlation: These findings are consistent with multifocal  areas of potentially epileptogenic cerebral dysfunction including an area of persistent slowing raising the question of underlying structural abnormalities in the occipital head region…. 
 At the visit the Neurologist mentioned the term “Epileptic Encephalopathy.” He did say it’s not Dravet when I asked about Genetic Testing, which I knew from my research. He said we will increase the Depakene and Zonegran one at a time as they are helping, keeping the Trazadone and Klonopin where they are. He wants to bring him in when he gets to a new baseline in seizure control or lack of and do a better MRI with finer cuts to look at the area in the left back that seems to be a hot spot. 
“Delight yourself also in the Lord, and He shall give you the desires of your heart.” Psalm 37:4 

 We came back home Friday night and have had friends from North Carolina here since Sunday. We have had a wonderful week. The boys got to go fishing on Eric’s boat, they had a blast! Caught some Catfish, kept some to give to the non-Kosher eating neighbors! Brandon and Eric got to go to the Bay and into the Gulf of Mexico today. Fishing is planned for all the men and boys tomorrow afternoon also. Abigail, Debbie and I will be going to have Dinner and perhaps we can find something else to get into too! Eric announced this evening that he is giving us his boat and trailer. What a blessing! I suppose if you are stuck in Cajun Land surrounded by water you really do need a boat! I see fishing in the future… Going to be focusing on making fun memories, especially now. It’s all any of us can do really… Make the best out of what you have, remembering that each day is a beautiful gift given from our Creator to do with it the best you can. There are certainly more smiles around since we got Brynnon his 4-wheeler. I know the boat will bring even more. Such a blessing!! So that’s where we are… have no idea where we are going… but I do know one thing for certain… Our Father is with us…

This I recall to my mind, therefore have I hope. It is of the LORD’s mercies that we are not consumed, because his compassions fail not. They are new every morning: great is thy faithfulness.  The LORD is my portion, saith my soul; therefore will I hope in him. The LORD is good unto them that wait for him, to the soul that seeketh him. (Lamentations 3:21-25)

prayeroffaith

Next week Children’s…

Well… Since the Zonegran was increased, I do see a “slight” decrease in seizures. Counting the definite obvious seizures that were 30 seconds or longer… He has had only 6 seizures in 12 days. Seemed like a lot until I looked at the 12 days before the increase… in which he had 8 definite 30+ second seizures. So… 14 Seizures in 29 days. We have seen much better… but we have seen worse too, so I will choose to be happy about that! May need to bump it up again to see a “honeymoon phase” as they call it… We will meet with the Pediatric Neurologist at Children’s again on Thursday next week. We will talk about the EEG that was done at the end of November, his MRI and what has changed. We will hopefully get to discuss genetic testing, if there is still any possibility that Brynnon’s condition is a genetic defect. We will also be discussing “other options” that couldn’t be discussed over the phone. House has been pretty busy the last few weeks… 

 I installed this great APP for Brynnon’s iPad called Rover. It allows him to do time4learning and other flash based programs for his school work and fun things he enjoys like Animal Jam. So he used it the first week for home school and was comfortable enough to play around on it. He found a book… “Diary of A Wimpy Kid” which he had heard about from his friend that comes and stays the night, or more often than not the weekends 🙂 So he’s looking this digital book with great interest and then it happened…. As if nothing strange or uncommon or different was happening, just as naturally as he would ask me for help tying his shoe… he asked his little Brother Brett (7) to read it to him… It secretly broke my heart for him being (12)asking Brett for help, but it was so touching to see Brett step up and read to him… the love was so big, so bright… It was just so touching… 

This Momma is burnt out with lack of sleep, stress from many sources and Brynnon’s seizures on top. I will be taking some time to get the house organized, get my life in order spiritually as well as physically and focus on the important things starting now. I have been thinking about Brynn and his future a lot. Realizing that I am going to have to take care of him as long as possible and have everything in place for someone great to take over should my life’s purpose be complete. Obviously, I need to drop some weight, eat healthier, rest more and get rid of some of the stress in my life. I intend to make this the year to do just that. I mean it’s bad enough that I am 40 with a 1 year old! I will turn 62 just days after Miss Abigail Sariah turns 21, geeezzzeee…. I quit the biggest addiction I ever had just before my 40th birthday in July, smoking. I have gained almost 20 pounds in doing so though, and it’s not like I was skinny before! Cut calories and exercise I must… Unless I can cut corners and do what seems to be the in thing now and go have gastric bypass! Which I could not afford, so I am gonna have to do it the old fashion way… Good ole diet and exercise. Was talking to a friend a few days ago and she reminded me about the Blood Type Diet. I gave it some thought and I think I am going to go back on it. It did help the Fibro and I know it will help with the weight also. I use to walk 4 miles 4 days a week, before Fibromyalgia kicked my butt… but there has to be exercise I am able to do without causing much turmoil in my poor aching body… I know that not getting adequate sleep night after night is not helping the weight nor the Fibro, but what’s a Mom to do? Stress… oh the stress has got to stop, I know I am on my way to a heart attack and life long blood pressure problems if I don’t nip some of the stress like NOW. Enough is enough… and believe me I have had enough. I am going to focus on changing what I CAN CHANGE, and believe in faith for what I cannot change, knowing my Abba Father CAN.