Author: prayeroffaith

prayeroffaith

11/18/11

 So Wednesday Brynnon had a Tonic Clonic seizure while awake. He was eating stood up, sat in a living room chair fell and started the clonic jerking. Unusual for Brynnon because he has never had a tonic clonic while awake. I am so thankful that he did not get hurt, a few more inches and he would have hit his head on the cedar chest… Thankful too that it was quick, as the last thing we need is further regression. He asked what happened… and he knew himself that things would have to change. For the last several months he has been riding the Scooter, his favorite thing to do. He loves that thing has a cool Motorcycle helmet to wear while riding… our next door neighbors chipped in and bought it for him to ride. It’s two wheeled… which means he would fall over if he had a seizure while riding it. He will not be able to drive the scooter for a while. Although it wouldn’t likely happen and he may stop if he has the aura he had before this seizure… there is just no way of being safe on it. I wish it had three wheels… or four.  Yeah, four wheels would be great! So of course when he woke up Thursday he started talking about the 3-wheeler that the neighbor gave him. Yeah, that has become his focus now, he wants to get that fixed. His poor brain has not exactly been up to par since Wednesday. Hope that he will start improving again, his behavior has been just awful too… but it wasn’t all that great last week either. So the protocol is if he seizes during the day and looses contentiousness give him a Klonopin… if he starts clustering or has anymore give him another Klonopin 6 hours later. If he has one longer than 2-3 minutes or has any back to back, take him to the nearest ER or call an ambulance. That first Klonopin he had did not make him go to sleep, he took it at 7:30, talked to the Neuro on call again at 1:30 AM and he was still up and rather hyper. Had him take the second one and his butt was asleep by 2:15! 

 I have been congested in my chest the last 2 days. I hope it will go away after I get some over the counter stuff… Abigail is being such a cutie… Gosh, she is getting so BIG. It is hard to believe it has been a year and a half since she was born so small… She has gotten taller these past few weeks, and actually looks like a little person now, not too much a baby anymore. What a blessing she has been in my life, I am so thankful to have her to hold… she is such a snuggle bug! Bought her a few things for her Hannukkah gift. A block sorter, wood train and some big blocks. Bought a magic set for Brynn or Brett too. Haven’t decided which one to give it to. Can only afford to spend about $30 for each person. Found Janice and Tera something that I think they will both like. Haven’t figured anything out for Bri and Brandon either. Figured I can just do a little for each one… 🙂 Wish there was a Dirt Cheap close by!

prayeroffaith

My thoughts on Suffering… and an update!

Suffering is to one what normal is to another is to what devastation is to yet another. Suffering is part of our human existence. There is no way to avoid it and not one of us will escape it. We have all done it and we will do it again. The only difference in us humans is how we suffer, and what we do when we feel the effects of suffering.
“Although the world is full of suffering, it is full also of the overcoming of it.” ~Helen Keller

We are a spoiled generation

of humanity that carries expensive cell phones, has our nails done, goes to the movies but somehow fall short and cannot afford the electric bill. We are spoiled to the point that we feel the least bit of doing without is suffering. We expect to be able to do what we want, when we want it and expect to be rescued from “suffering” when that suffering is just consequences for our actions. No, I am talking about true suffering…

The loss of a Loved One, Persecution for beliefs, Being Bullied, Not having food in your home or basic shelter, Painful Disease… The list goes on… Have you ever read the story of Job? That is “Suffering.”
There are benefits of suffering too. Paul’s thorn in the flesh (2 Cor. 12:7) kept him from becoming proud. Knowing that he had a thorn in the flesh and still kept his faith even though it is not believed that it was ever healed sure makes a great example for me. So we who suffer and continue to fight the good fight and walk in faith can be an example to others. Not only an example but because we have suffered we too can join the ranks of all those suffering and comfort those who suffer. 2 Corinthians 1:3 Blessed be God, even the Father of our

Lord Jesus Christ, the Father of mercies, and the God of all comfort; 4 Who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble, by the comfort wherewith we ourselves are comforted of God.5 For as the sufferings of Christ abound in us, so our consolation also aboundeth by Christ.
There are many examples in scripture of suffering that was brought on by transgression. Much easier to not think about, but often we are suffering because we have sinned against our Father and we are simply experiencing the consequences. Like David, we too must face consequences for our actions. For not one is without sin and we all shall reap what we sow. I am not talking about that kind of suffering here either.

So I encourage you, if you are suffering pain, trial and tribulation today, remember…

For I reckon that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us. Romans 8:18


On a more personal note….

as I know many follow Brynnon’s story here… He is stable at the moment, staying for the most part at his baseline. Since we went on July 15th to have it increased,  he has developed a side effect of nausea and pain in the upper stomach area from the VNS and he may have to go back to have the settings changed to see if it will alleviate this side effect. We are waiting on insurance approval to try a stimulant to see if it will possibly help his cognitive disorder. We will try it at home and see if we notice improvement and at his next visit he will be dosed up so that when he has a Cognitive Evaluation they will record any changes from the last one in July. 
I wasn’t really excited about the stimulant at first, but was willing to try when his Neurologist sugested that it may help him retain information in his learning  journey and perhaps even help his slow processing. After researching it and seeing that it is used in lower IQ children and can possibly have a good effect on him. I feel that since he has stayed around his baseline (his normal 4-6 seizures a week) for the most part for several weeks now, and since he is 13, still only Reading at a 1st grade level and overall cognitively functioning at a 6-9 year old level… it is certainly worth a try. I have to admit I have since gotten a little excited at the possibilities and figure anything is worth a try. All in all, we are having a very nice relaxed Home Schooling Summer…. 
Sorry I haven’t updated lately…
    We have had a lot going on…
    Will update more soon…
    or perhaps a bit later!

   ~Denise 
“I do not ask You to take away my suffering;
I do not even want to know why I suffer;
but only this, my God….
Do I suffer for Your sake?”
~Levi Yitzhok of Berditchev

prayeroffaith

Endurance

Waiting… I never really enjoyed waiting. I admit, I use to be better at it too. I remember people use to say “Denise, you have the patience of a saint.” Just words, but I must have been given a great gift of patience. I have to work harder now at Patience, because I feel I lack something, Endurance…  I get anxious now waiting. I feel like I do not have the strength to wait things out.

When you have a child with refractory epilepsy, so much waiting is required. No matter how much patience you think you have, watching your child have a seizure will make you feel like you do not have the endurance to go on…
You start this medicine with so much hope that it will make the seizures stop. It does, for a while and another is added when things get out of control…               On and on this process goes…

 Finally one day the Dr. says, this may be the best we get. We did the VNS surgery for this reason. The medications tend to help Brynn honeymoon for a time, but once again his body just gets use to it or learns how to seize despite the medication. So, we did the surgery with the hope that he would do better than the one third chance of a 50% reduction in seizures…. and we wait… and wait… Did you know that in training for endurance, you could end up with a negative impact on strength if you do not also practice resistance training. Waiting in faith is like training and without prayer we too would end up weak. The boys and I pray every night for Brynn and all the children and adults we know that have seizures to not have seizures anymore. We praise Abba Father that one of them has stopped having seizures and a few others improved! This has encouraged our faith once again and helped me to become stronger… and continue to endure! We weaned one medication and started a new medicine… and waited some more.  And…. Once again, we have a honeymoon! Yes, Brynn is back to baseline and better with the Onfi! He is not having Tonic Clonic the moment and the Tonics and Complex Partials are so much less traumatic! This honeymoon started out great, fizzed out and then came back full force it seems! We are so excited and enjoying this time! We started fund raising to get Brynn a SAMi Seizure Alert Monitor Camera System. Brynn and Brett always being find of Survival Bracelets wanted to make them. So we bought the 550 Parachute cord in fun colors and got to learning! Brynn and Brett like to try, but they haven’t mastered the art of making

them… So at present I have made oh about 70 of them!  Saving and Hope to buy him a Recumbent bike soon too! After he had the seizure while riding the bicycle he has been heartbroken that the neuro said no more bike riding. He has only been able to ride his 4-wheeler once so far. The recumbent bike sits low to the ground, has three wheels and in the event he has a seizure while riding at least he will be close to the ground and not fall over… We even had a Lemonade Stand for the first time last Sunday! The boys had so much fun and raised $20 for the SAMi fund!!

So here we are again, waiting… and being patient… Knowing ever still that Abba Father is in complete control… It will be as it will be, in HIS time and only then… Not the easy fun we had hoped for, but you know… at least we are having some fun along the way!!
Ah, indeed…
The longer you wait the better it is!!

Don’t Ever Doubt It,
Abba Father Knows ALL!!
prayeroffaith

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…  
prayeroffaith

Ones Mountain is anothers Molehill…

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

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

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

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

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

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

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


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

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


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


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

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

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

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

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

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

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

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

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

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

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

 

prayeroffaith

It’s been a while!

It has been a while since I have taken the time to update here. We have been busy with home school and a few other things. Brynn has finally tested at a 1st Grade level in all areas of Reading. We have worked really hard on Inferring, Context Clues and Reading Comprehension.

This has made a bigger impact than he has experienced to date in his learning. It is a beautiful thing to see he figure out a word based on context and his confidence has grown so much that he does not hesitate to guess a new word or one he can not decode. He seems to have lost some decoding ability along the way, so we will have to figure out how to get that balanced.  Brynn received a Hernando Bear, sponsored through Angels 4 Epilepsy and TG Bears. He loves his Hernando and sleeps with him. He is a good companion and as Brynn says he is his Epilepsy Fighting Bear. He was promised a bear through another organization months before his VNS surgery. He never got it, so I bought him another bear. He said he didn’t want to take it to surgery because it was not an Epilepsy Fighting Bear. Hernando is so special to him… Monica, the beautiful woman who hand makes the bears, said she put extra fight in his Hernandos stuffing! He cut out the sticker from the box he came in and proudly displayed it on his memory shelf. That shelf is full of beautiful memories… 


  Seizure wise Brynn has experienced an awakening cognitively since the introduction of Onfi stopping a lot of the little seizures that you can not see. The bigger seizures are still there, just not as often, which has made a difference in our lives! He is spending a lot more time talking and has had spontaneous laughter more and more. Silly boy, we have really enjoyed having more of the real Brynn back these past few weeks. Just before his Children’s visit last week, we saw a decline cognitively and an increase

in seizures. He had a runny nose, headache and was declining so quickly cognitively, I took him to the ER. It was decided there that it was an increase in seizures and allergies due to the high pollen count. We went to Children’s Monday. His neuro increased the Onfi from 10 mg to 15mg 2X Daily. This has already made a difference, and we will not start the daytime dose until Monday! We also agreed it was time to l et go of the Klonopin, since he does not need to be on 2 Benzo type drugs regularly. He was only on .5 before bed and it has been two years since he started it. I haven’t noticed a difference, except perhaps a little clustering, which seems to have been helped by the Onfi increase. I expect once we increase the daytime dose we will level out again. We also were able to attain the Zonegran Brand Name Medically Necessary again. I do wonder if he may have done better with the brand name when he started the Onfi. It was such a dramatic difference… I guess time will tell. This time when his VNS was adjusted he had no change in is voice, no hoarseness and no coughing at all. I kind of missed the robot voice all the way home… but I us am happy that he seems to have gotten use to the device. His VNS is set to 1.25 cycle and 1.5 magnet. Speaking of the VNS,

we bought this custom made band for his VNS Magnet from Kimberly’s Crafts on Facebook. It’s just what he needed as it fits his ankle instead of his wrist. The magnet will destrtoy any electronic devices, credit cards and so on that it comes in contact with. So we needed one for his ankle, when I could not find one I contacted her to make it! It came out great! His neuro once again said that we will likely not see seizure freedom with Brynnon, and that our goal is to keep seizures at a minimum for him while not affecting his cognitive ability negatively. I am anxiously awaiting seizure freedom, I will not loose hope that he will one day be seizure free. We are still only 6 months out with the VNS, perhaps before this honeymoon phase ends we will notice a difference. We will likely discuss trying to wean Vimpat next, as we are not sure what impact this medication has on his seizures either. No matter what we will not touch the Zonegran, having the month of August as a permanent reminder of just how much he needs that medication.
 

Brett is doing great with the Alpha Omega Life Pacs. It was a good decision to place him in that curriculum to allow more one on one time with Brynn, since Brett has the ability to work independently.
 

Abigail has begun to want to home school. We are working slowly on the Starfall books and preschool workbooks. Hard to believe she will be 3 in just two weeks. 


We had a wonderful day on Epilepsy Awareness day! Everyone wore PURPLE and it made Brynn feel so special that it was his day! So here are a few pictures of our lovely purple day!

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New Year off to a good start!



I am really liking this year so far!
Brynn’s 8 week Depakene wean in COMPLETE! Only noticed an increase in small seizures and some increased daytime tiredness, which seems to be leveling off now. We are enjoying his stability seizure wise, with only 1-3 larger seizures a week. Not sure if it is the VNS or the Zonegran increase that is making it possible, I guess time will tell! Even the larger seizures he seems to bounce back from easier and have less effects afterwards. We will go back to Children‘s hospital next week for his VNS increase. I dofeel so much more relaxed with the last several weeks feeling so positive for Brynn. I worry when he sleeps 12-14 hours a day, but if he is not having a seizure increase I can see, I remind myself that he may just need that extra sleep. Will still discuss it with the Neurologist as we know he has seizures we cannot see also. Excited to get our tax refund in a few weeks to help fund fresh new materials for home school. I purchased McGuffy’s Readers for Brynn and he seems to like them so far. A change from the Merrill Readers he has used for so long. I hope that we can bring him to at least the 1.5 level in Reading with them. We have pulled Sequential Spelling from our curriculum as well. It started with his Neuro stating in the office that if he needs assistance in any way to answer the questions (additional statements or questions) it is not counted as right. He couldn‘t answer where he was (Children’s Hospital), What city he was in (New Orleans), What day it was or even what Month we were in. We had talked about going to the appointment on Tuesday, in New Orleans at Children‘s for weeks. He writes the month and day everyday in his home school. I was kind of upset at first thinking, but it’s not his fault that he needs reminders or hints. It’s just the way his brain works, he has to have something to tie things together. He knows New Orleans is where the Super Dome is and he knows Children’s is the Hospital he goes to. After the initial shock that he couldn’t answer, I was upset. I was upset because it got me thinking, well if he can only spell “should” if you give clues (Should, would, could-U should know this) then does he really know how to spell should? If you have to say anything to get the right answer, is it right? My gut ached as I realized, no it’s not. It feels better to think it is, but in the real world it’s wrong. If after 2+ years of giving those reminders in the AVKO Sequential Spelling he still cannot spell those words without me sounding them out for him and giving hints, I must conclude that he has not been successful with it. So we started an old Jones Spelling book. He will be given three words every Monday to dictate sentences for. I will write the sentences and he will copy and read them a few times a day. On Friday he will be given the sentences and be asked to  write them. It’s his sentences, that he made up, so he will be connected to them. Hopefully, this will give better results than spelling 25 words a day has. Brett (8) is Reading at a 3rd grade level, so he will begin to use Alpha Omega LifePacs this year. He is confident and able to work independently, which will allow more time for me to work one on one with Brynn. Abigail will be working in Pre-K to keep her busy! 🙂 I will be buying Brynn lots of work books focused heavily on inferencing, Context Clues, Writing, Punctuation and Thinking Skills. After discussing things with a teacher friend of mine, she helped me realize the reality that he is 13, and he just may never read above a first grade level. I knew this before, but I thought if we worked hard enough he would advance forward over time. He has stayed at this same exact level for almost two years now. So at this point we need to focus on fine tuning the skills that he has attained as we add more, hoping that he will retain them. Deep down inside I am a bit excited to see if this lower seizure baseline will stay as it certainly will help his cognitive function. I will be asking about Neuropsychological testing again at this visit. As it is important to know what if any impact the past seizures have had on his overall ability. 
 A real beautiful person, the swing lady I talked about before, is sending the boys and Abigail $100 gift cards to spend on clothing. What a blessing! She is also giving a $200 gift card for household stuff. I think I see a new set of pots in my future! 🙂
We are definitely more at peace here in MS, the air is cleaner and our minds are too! I am learning to trust in our Abba Father and lean on Him for understanding instead of fighting through all the details myself, trying to figure it all out. Learning too, that we don’t have to understand every single thing, we just have to trust Him and His will in all things and know that it will all work out for His Glory. I have done all I can do, now I will stand and trust Him! He who began a good work in me, will be faithful to complete it!  ~Denise
    

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It’s Not Really "About the Backpack!"

This really amazing thing happened. This Back Pack that I so wanted Abigail to have was purchased through the generous offer of Scott Stratten, President of Un-Marketing. http://www.unmarketing.com/ He is an expert in Viral, Social, and Authentic Marketing which he calls Un-Marketing. Author of The Book of Business Awesome / The Book of Business UnAwesome. I saw a friend post about it and figured this could be fun. I had always wanted to do an Amazon wish list anyway. SO the children and I had a wonderful time creating this awesome Wish List! We posted the link on the Unmarketing facebook page as requested like the other hundreds of people. I never gave any information about our circumstances, just a simple link saying how much fun it was creating the list. The list has become in our home a target for dreams, we all have dreams don’t we? I highly recommend you go ahead and go over to Amazon and create your own wish list. This is so much fun for the whole family and has brought us countless hours of wishing. Anyway, when the highly treasured Dora backpack arrived I was surprised. I had forgotten all about the link I posted. I mean that list if jam packed with wishes, how could anyone of known that Abigail (2) wanted that Backpack more than anything? It took me days to figure out this mystery. Last night, I went on Amazon looking for the hard to find Merrill Readers that Brynn does best with. Now I am not talking about the new fancy ones, no the ones that Brynnon does best with are the old ones, MERRILL LINGUISTIC READERS, A BASIC PROGRAM http://www.amazon.com/Merrill-Linguistics-Readers-Program-Skills/dp/0675013356/ref=wl_it_dp_o_pC_nS_nC?ie=UTF8&colid=2CYGA5AC07W21&coliid=I20515PZNFYTD9
and they are from 1966 of course! I have spent a lot of money on the new ones, believe me I wish he did as well with them! So, of course when I was discouraged at the availability of them… and the fact that no one has a complete set of these… I moved on to have some fun! To the Wish List! We added all sorts of fun things… Then I decided to separate the list that had grown to a few pages. Well, there it was… THE BACKPACK…. Oh my heart was racing! Could it really be that someone we do not even know purchased that Backpack? I finally saw the tab that allows you see “purchased” items from your Wish List. Sure enough when I did that, someone had indeed purchased that Backpack from Amazon, from my wish list! How amazing is that? It’s more than a Backpack… it’s my renewed confidence in mankind. It erased so much negativity, so much disappointment in people in general. As terrible as this sounds, I had really lost the ability to believe that people do good, without getting something in return. I am sure that it began long ago, but it was actually year before last around the holidays that I started really feeling strongly negative about giving. It was in a group setting, where iPads were being given to “Needy” families with children with Special Needs. The goal was to get to know people and pick them to nominate them to receive one. It was through this experience that I realized I was not “normal.” I became facebook friends with the person I chose. Her Daughter had Autism and she was new to the group, so sympathy played a part in that decision. It was not long after that decision that I realized the extent of greed. She did not get chosen, but it wasn‘t about that. It started with a photo of a gaming chair that she posted a photo of, that she had purchased for her husband. I couldn‘t help but think to myself, dang that must be about half maybe more of an iPad right there. The pictures continued to show up games, a new game system, tons of toys… and it happened, I was then a full fledged negative person about giving. I could not for the life of me see how anyone could in good conscience go to a group like that, claiming they were in need of and could not afford an iPad with priorities like that? I mean what is important, can the average person not tell the basic human difference in NEED and WANT?
 Perhaps it was my opinion that Christmas is a horrible holiday, packed with pagan roots and the terrible displeasure of people wanting to buy to get that started this downward spiral. All my life I had heard people say, we have to buy for so and so because they will buy for us. It has become a game of who can buy the most gifts to get the most back, disgusting to say the least. I had even had someone invite me to Christmas dinner and add that they needed to know if we would be coming, because they wre only buying for my children of we were going to be there. Seriously, was that supposed to make me show up? I was at my wits end after hearing so and so didn’t buy me anything and I bought them such and such. I had watched this private group get all these gifts for a very needy little girl for her fist Christmas with a new family. What a wonderful thing right? Yeah, it was… Until it turns out that the gifts were for the woman who claimed to be helping a family in need. Ugh… how terrible is that? Apparently, this whole internet thing is FULL of people that are trying to scam people out of FREE STUFF. As the Father would have it, I cannot be as negative about all this now. That backpack has restored in me a new breath of fresh air about giving and receiving. The person who purchased that backpack may never know that Backpack was one of two new gifts that Abigail received for the Holidays, and it was the only gift that anyone besides her Sister and I bought her. She was blessed beyond measure by getting this totally awesome Dora Talking House with the people and furniture previously loved by another child. Her Sister (22) sent her a wonderful Princess Piano! Brynn and Brett got 4 airsoft BB Guns each with 6,000 plastic BB’s and Brandon got a used T-shirt lot from ebay and a Foo Fighters Guitar Tab. Their Sister sent all the boys a pair of headphones. This is what we see as normal. When the older children were young times were better and we could afford to buy a  few gifts each for the children. It has been several years since we have been able to do anything like that. We celebrate Hanukkah every year. In 2005 we celebrated both and let the children decide which they would rather celebrate and Hanukkah won, so we have ever since. I hope one year to be able to buy everyone a gift for each of the eight nights. This year, the boys offered to let me spend what we had to spend on Abigail, I just couldn‘t not get them anything. They had a blast with those BB guns, and it turns out that if your buying cheap plastic BB guns 6,000 BB’s is about all you need! The positive thing about doing things this way is, my children can tell you exactly what they got for Haunkkah this year! 🙂 Not too many children can do that! So, with this new giving receiving attitude, I went to Amazon and entered people‘s names from my facebook friends list. I bought something from one of their list, just a small item and didn‘t really affect my bank balance. Won‘t they be surprised? I so love the idea of giving in secret that I have decided to randomly do this when I have an extra few dollars. I think it is a good thing for the children to take part in and we will make a tradition out of it.
“So when you give to the needy, do not announce it with trumpets, as the hypocrites do in the synagogues and on the streets, to be honored by men. I tell you the truth, they have received their reward in full. But when you give to the needy, do not let your left hand know what your right hand is doing, so that your giving may be in secret. Then your Father, who sees what is done in secret, will reward you.” Matthew 6:2-4
~Denise
prayeroffaith

End of the year wrap up!

I have thought a lot this past week about how much we have been through this year. Some good and some not good… So let’s begin with a recent good thing… A few weeks ago I got a phone call. It was a fellow Mom who I met through craigslist (of all places) about 3 years ago while expecting Abigail. I bought a swing from her. She gave me in addition to the swing bath towels, some clothes, a bouncer seat, cloth diapers, burp cloths, toys… It was a greater blessing than she could have ever realized. I was on that very day we met going for my 2nd mammogram while pregnant. I had something behind the nipple that could have been cancerous. My symptoms started soon after finding out I was pregnant. We had health insurance, but as most of you know that doesn’t mean free health care. Thank Abba Father, I convinced them to wait it out and when I returned a few months later for the 3rd Mammogram it was GONE! We were overwhelmed with the medical cost, the addition of a 6th child when we were struggling with the 5 we already had. A cancer scare on top of that was just really stressful. So, needless to say this gal was a real blessing. I added her on facebook and eventually we were sharing there and over the phone. So, she calls a few nights ago and says that she wants to ask  a question. She proceeds to say, I want to do something for your family… one time, within reason, whatever your family needs most. Well, that is a question that I have never been asked. I was perplexed… I mean this is a one time thing, what do we need the most. My Husband answered it as quickly as I asked and that’s the answer I gave… More than anything else, my children‘s greatest need is clothing and shoes. More times than not my children‘s clothing and shoes come from Thrift Stores. There is nothing wrong with living this way, it gets us by… but the clothes that the children have are worn and often not correctly sized. I am not sure if y’all have noticed, but through the years and brands clothing sizes change. To add to the misery of trying to clothe them this way, Brett and Brynn are “oddly” shaped and it is hard to find clothes to fit them, much less in a thrift store with only so much to choose from! My children do not get “gifts” very often from people for Holidays, much less just because. The younger four have never know the kind of Holiday gifts that the older two had. Money does not stretch like it use to and there is only so much to go around. We do try to treat them to special “gifts” when our income tax refund comes in. It’s about the only time we have extra money to buy a toy, bike or a wanted item that we normally couldn‘t afford. We also budget carefully for the higher priced items and save accordingly. This is how we acquired Brynn’s iPad, the other boys iPods and the big items we do have. We were responsible with the money from the sale of the property a few months ago and did not spend any of it frivolously, besides getting Pizza and Brynn’s much desired Chili’s meal :). Sadly, we did just move away from our much loved Neighbor (Jackie) who did so much for the children, she was more like a  Grandmother to them than anything they have ever known. She kept Abigail looking beautiful 🙂 and would often buy for Brynn and even Brett. When she knew we could not afford to buy Brynn clothes and he gained so much weight with the Depakene one year to the next for Med Camp, it was Jackie who blessed Brynn with new jeans for Camp. I don‘t think he will ever wear another brand! Before she came into our lives, my children didn‘t know about receiving things from anyone but us, with the exception of a rare relative or friend here and there. I guess that is what my Momma would have done all these years or she could have gone with me to the thrift stores! I am sure if she would have still been alive I would not have strayed as far from my family and them from us as we all have. I see that in a lot of families now, I suppose it’s not like it use to be for anyone anymore. Perhaps technology and the business of the world has hampered and destroyed good ole family values. Long gone are the Family bar-b-Que’s of long ago, where family gathered and shared their lives, their children and their food. I tell you what, I would give anything to go back and redo the past with my family. It’s so sad that one person missing from the bunch can cause such discord and separation. I will be looking forward to the children experiencing a “Pay It Forward” experience. I am sure it will be a life changing experience for them that they will cherish always. Someone that has never even laid eyes on them, other than in pictures, wants to provide them clothes… How awesome is that? In thinking about that question, it raised a lot of interesting thoughts between a “Need” and a “Want.” There are lots of things that anyone would want! If I presented that question to the children Brynn would likely say a 3 wheeled motorized bike, Brett would likely say a new home computer to play games on… Brandon would likely say he doesn‘t know, but secretly he would want itunes or xbox stuff. My boys all know well about giving. They also know the difference between needs and wants. Brynn and Brett earn $5 a week for being good family members. This includes everything they do for cleanliness, personal hygiene, home school and helping others. Each day they fail to meet their responsibilities in any way they loose $1. This is how life works after all. It is interesting to see what they do with their own money. Brynn will often buy things from Brett. Brett will save his money, all of it… and only wants to buy memberships in “Animal Jam.” There are a few things that our family needs, perhaps with the help in clothing we will be able to work on some, like dental as Brett, Brian and I all need to have some teeth pulled!      
Just when things were getting somewhat “Normal” and oddly cozy back in MS… We went back to Children’s again to have Brynn’s VNS adjusted. We will return in early February to do it again! Praise Abba Father, it was a very easy and productive trip. We are going to wean Depakene, tonight completes our third week!! YAY! I have wanted to try this for some time since he has been maxed out on it for a year now. So far it has been good, only side effect are more myoclonic seizures and cognitive slowing. He has always been refractory and had a “honeymoon” with medications. Once a drug is introduced, he tends to do well on it for a while staying at his “Normal baseline” of 3-4 seizures a week. Then his body gets used to it, his brain figures out a way around the med (whatever the actual cause is) and he begins a steady increase again. Onfi will be his next drug. I have good feelings based on what I have read. Since Brynn has done really well with using Klonopin for Clustering and Ativan for continuous daily clustering, I feel that another benzo may be the answer that will bring long term relief. Hey, it’s hope at least… Anything is better than the dreaded “He’s never going to be seizure free.” I somehow get that, and even accept that now. I remember being so mad that his Neuro even said that. So frustrated that a Dr. could give up… Now I realize that his Dr. never gave up. His point was that in refractory Epilepsy, no medicine is going to stop every seizure. That is what refractory means.
Websters Dictionary Defines REFRACTORY

1) : resisting control or authority : stubborn, unmanageable
2) a : resistant to treatment or cure
Reality is, sometimes Epilepsy is just that. “About one-third of people with epilepsy will eventually develop refractory epilepsy. This means that medicines don’t work well, or at all, to control the seizures.”
http://www.hopkinsmedicine.org/healthlibrary/conditions/nervous_system_disorders/refractory_epilepsy_135,5/

So, the reality it seems, is that indeed Brynn “may” never be seizure free. A miracle could happen at any moment and he could never have another seizure too. All we can do is try to alternate his medications to keep him at his baseline or better. Only Abba Father knows when he will stop seizing, I am okay with that now. I have faith that his life is in Gods hands, and I have security knowing I have done everything I can do for him. So, onward we go… into the New year 2013 may be our year. Starting over again, at least this time we are back in Mississippi. It feels peaceful here in Mississippi. There is a tranquilness in the air that touches your spirit, your heart and your mind like no other here. Things are in progress to move forward into our lives with great anticipation of a future yet to be seen and realized. I just pray that this time Abba Father will see fit to bless us with the stability and perhaps eventually, a forever home to call our own, somehow… someway… It is will great gratitude that I wake up each day here back where I feel at home. I have taken the Father’s hand in a mission to go forward in dealing with the past and finding my happy place again. So I end this by saying “Happy New Year” to all of you who follow… May 2013 be the year for Truth, Justice and Healing for all! Don‘t forget to keep the faith and never ever take your eyes off the mark… ~Denise
   

prayeroffaith

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


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

REMEMBER…
~ November is Epilepsy Awareness Month!! ~