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…  

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…

 A
h, 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
 


 

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… 

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… 
 

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. 

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!

 


   

Today…

 Late yesterday afternoon Brynn complained of a headache, he even asked for something for pain and was almost crying. He laid around most of the evening and was quiet for the most part, just a little whiny. He fell asleep around 11 PM, then the myoclonics came back… I thought that the Klonopin had stopped them. His right leg and upper body, arms, shoulders and head was twitching a lot all night long. Lots of nose rubbing and lip smacking/chewing… Saw him have a 1-2 minute tonic event and more clonic activity than I have ever seen in him without the typical tonic start. I don’t know if this is due to the Klonopin making him sleep so hard or if I am just not watching closely enough and am missing the tonic part or if it is a new thing. The Neuro said to call it what you want to and describe it… Well this looked like Clonic Shivering so that’s what I will call it. He’s a bit hesitant to do his school work today… Slept till after 11 this morning. Had a pretty good day, considering the night he had… 
  Brett would pick today to not cooperate at all in doing his home school… It is getting to be more than I can handle just to wake up and function with the fibro out of whack since the accident several months back and lack of sleep with Brynnon… I have not been feeling well the last few days. Maybe I am emotionally drained… 
  Abigail is growing so fast… Over 20 pounds, running… Playing and such a happy baby. Her speech is pretty good so far, I worry more with her looking back on Brynnon and knowing what I know now. Twirling in circles she goes round and round… then she sits… leans back ever so slowly and gently to the floor… and says OH NO… FALL DOWN…. She runs all through the living room and kitchen with her baby. She loves her babies, hugs her babies and kisses her babies… She is such a blessing! The light that sparkles into the darkness….
~Denise 

iPad’s and Children With Special Needs

  If you have a child with Special Needs, you simply must visit this link! While researching teaching methods for Brynnon a while back I read again and again how great an iPad is for Special Needs kids and that there are so many apps for them as well. The website above has videos to show you what the app looks like before you buy it! They are also giving iPads to schools and children with Special Needs in each State. They are excepting donations to get this done from the app makers, businesses  and people like us too! There are also free apps as well. I know when I spoke with the Neuropsychologist that did Brynnon’s testing about it, he said that Brynnon would benefit from one as he is a visual learner and learns best when a picture or chart is used to teach. The only problem I have in getting an iPad for Brynnon is the cost $500+ which I am sure that most parents would struggle with. I have sent a description of Brynnon to this site, although I think the giveaway’s are already assigned. I know Brynnon would do well with it as he has made a lot of progress since we started using  Time4Learning.
Which I highly recommend for those that home school! This is a flash based program so it will only work on a computer, and will not work on the iPad. Which is best for Brynnon anyway, as they would be separate activities helping his cognitive & attention difficulties.
  Not too much going on here… I have done some soul searching and praying… and I feel better about Brynnon’s situation. It was one thing to point out his symptoms do not match Rolandic Epilepsy… A completely different thing to hear Frontal Lobe Epilepsy, Cerebral Cortex Malformation and can become Retractable in Children Like Him within an hour of meeting a fantastic Pediatric Neurologist who has probably seen it all… I realize that the future could become bleak and I accept that. I also realize that it can be just as wonderful if not better than I ever imagined and that is what I hope for. We are not there yet and have a long way to go, so for now I simply will take it one day at a time… Through much prayer and with a lot of faith we will go forward… I will try to stay positive! In the meantime, we have painted the bathroom, hall and living room… Hopefully tomorrow we will paint the kitchen. Something about painting always makes me feel better. I suppose it is an outward sign of the inward change that is happening. I am forever grateful for all the blessing I have in my life and Brynnon is indeed a special child. I am thankful that the Father thought enough of me to place him in my arms… I don’t have a problem with having him stay a child longer than usual, I love children… if I didn’t I would not have had six of them!  

~Denise

Brynnon (12) and Abigail (1)

Almost…

So, getting a little anxious about the Appointment (Thursday) to get the Neuropsychologist results for Brynnon… Seems like it has been 6 months waiting, but it has actually been 2. Of course I have some updating to do with him as well as far as the regressions we have seen in Brynnon since he was tested and had the major seizure. He still has not caught up back to where he was, which makes me wonder if it was permanent? Surely he will catch back up to where he was, but in the big picture the regressions are bigger than the catch ups, seems it takes forever to catch up. I was going through some of his home school from two years ago. It is so sad that his handwriting was actually better two years ago than it was even before the last major seizure. The computer schooling seems to help, as it does all the reading for him and doesn’t seem like what he calls “baby work.” The headphones drown out all the distractions in the household, which interferes greatly in his concentration. I hope if nothing else the neuropsychologist will have great positive things to say about Brynnon’s future. His future is what I worry about most. I realize that people who have Intellectual disabilities can live normal lives in society. I just worry that he will not be able to grow and flourish with the regressions happening. Just can;t seem to shake the feeling like we make all this progress only for a terrible seizure event to wipe it all away… There we are left to try to get it all back in again before we loose anything else…So Thursday is the BIG day for getting some answers concerning Brynnon’s learning journey…. 
 The 18th is the Neurologist appointment to get the results of the 24 hour EEG. I will also bring my videos of Brett and ask about his night time events. It is bothersome, as Brynnon did the same things before he was medicated and I am very afraid that it is the same thing. Scares the crap out of me, that Brett could have the same thing wrong…  I hope I am just paranoid and it’s nothing… That’s not what my gut says though. I hope he has better answers about what seizure types he is seeing and why his EEG was so erratic. I expected it to be normal while medicated… and I have yet to find a sleeping EEG that looks like his. I have looked at hundreds of them online… but not one looks like his. I will also be asking a lot more questions this time, as I know a lot more now. At the end of the visit I will have to tell them I need a copy of his records to bring to New Orleans for the Epilepsy clinic at Children’s Hospital. I hope if nothing else they will have answers… I just need to feel secure that everything is being done that can possibly be done to prevent anymore seizures or regression. While would  we are at it, I would like to know if it is or could be genetic and if Brett could possibly be showing early signs. 
 It is so frustrating not having the answers to so many questions, but it is exciting to think that sometime in the next month I may have most if not all of them!