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prayeroffaith

Momma gone 20 Years tomorrow…

 It is so hard to believe it has been 20 years since Momma was murdered. It feels like so much has happened that I didn’t get to share with her… but at the same time it seems like just yesterday I laughed as she danced at the skating rink. It’s increasingly hard to imagine what life would be like if she were here. I miss her so much, I miss everything about her. She had this way of directly telling you what you needed to do that no one else could, in hind site she was not always 100% right, but her intentions were good. My mind often wonders back to the times that she was alive, more often than not it is the laughter and happiness that I remember most. Didn’t have much of anything, but was so proud of the little things. The day she was murdered she was making baskets for Teacher Appreciation Day at Belle Chasse Elementary School. The very knife that took her life was a knife of love that she used to make those baskets, honoring the teachers. Such a selfless woman… I can remember her putting things back for herself at the store, so we could have something. I remember it like it was yesterday, at K-Mart… No, they just do not make them like Momma any more. All her dearest treasures, and mine today are things that she paid nothing for… She was an amazing woman, loved by so many… and taken away too soon. I know God has a plan and I know that He has a reason, it doesn’t change the hole in my heart that only she could fill. I miss her dearly and wish I could share my life with her. I wish that she could give me advice, good or bad… More than anything I just wish I could hear her laugh and see her dance… I even miss that facial expression she would make to imply that she was greatly disappointed, never thought I could miss that when I was younger. I wish she could have held all my Babies and Loved them the way only a Grandma could… I wish she could have the things that I have, that she could know the convenience of a microwave or a dishwasher. I wish she could have stayed just a little longer… I wish she could hold me and tell me that it will be okay, the way only Momma could. It doesn’t feel like everything will be okay, no it feels all wrong and I am not sure life could ever feel right again after loosing her the way she was lost. I don’t think people ever go on and live a normal life after a brutal murder. Look at them, they are probably the strongest people you will ever meet… but I bet they all feel the way I do. They say time heals all wounds… Yeah, time does heal, but the scars that are left never go away. They run deep into the heart of all those that loved her… and every part of our lives are affected some how because she is forever a part of us. I hope that my life is keeping her memory alive, I hope more than anything Momma’s Memory is ALWAYS A BLESSING… I miss her so much… I miss all the special moments that were stolen, all the laughter and tears that were meant to be shared. I miss the what ifs and the should have beens and the could have beens too… I will forever hold dear and cherish the one’s I was blessed to have had. I will share her the only way I can… Memories….

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Neuropsychological Answers… More Questions…

Got the verbal neuropsychological results for Brynnon… Lots of information to process… Confirmed a lot, exactly what I expected, yet heartbreaking to come from a professional. Helped build my confidence as a Mom and teacher, as a lot of the recommendations I had already implemented. The completed report with anything added from today will be mailed next week. He is interested too in seeing Brynnon’s 24 EEG result. He feels that he may be having seizure activity that is not visible, which could explain some parts of the test results. He said he is really only capable of Reading on a 1.0 level and I need to back up to that level for Brynn. He is more capable of learning visually than any other way, so adding very simple basic visual information will help Brynn retain what is learned. He also said an iPad would be great ! 🙂 I guess overall I am encouraged that I know Brynnon well, that I am doing everything I can to help him… but my heart hurts for him, knowing he is going to be 12 and has the ability of a 6/7 year old in most areas. It’s great his verbal ability is so high, which makes it less obvious to everyone else. Sad though that he is so cognitively disabled. I asked the question that he could guess at… If Brynnon never had a seizure would he be where he is? The answer is it’s hard to say, he probably would not be as severe, but he would likely still fall below normal. In the back of my mind the question burns and will likely burn forever… How many undetected severe seizures has he had…  I guess I will never know, but I definitely will always have that question. After the last seizure we know that his are extended… and in all three cases where it was detected someone was in the same room and awake. So realistically we can not really know how many he had while everyone was asleep. Even with the Emfit monitor that provided so much peace and security… There is no way to know if it would even pick up a seizure like the last one, as the clonic part was not violent like the others. It possibly was a Tonic seizures with mild clonic aftershocks, as that’s what it looked like. OY… All I wanna do is take a NAP… but I guess I will let all this settle in my brain while I do my daily task… ~Denise     
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Relaxing…

  I realize after looking at hundreds of EEG images that only a doctor can tell me what Brynnon’s EEG means. Brett has had a few more questionable episodes in the last two nights. No use bringing him to the Doctor as it’s not tonic clonic, but absence or some kind of simple partial seizures if it is anything with him… Keeping my cell phone and camera handy to record so the Dr. can actually see, instead of just me telling what I am seeing in him. Brynn seems to be doing okay, nothing more than myoclonic activity and groaning while sleeping. Hope to get a pulse oximeter soon to check his oxygen levels at night. Looking to get one that has the option to strap to the wrist at night, an alarm for levels that fall under normal levels and software that would enable me to download a nights activity would be great too. Believe it or not, they actually have these! So, I will be on the look out for the best deal, I have a few in mind so far… Had a relatively good home school week… Of course it was a “easy” week as Brynn and Brett fondly call it! Back to serious business next week, Abba Father willing! 
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So here it is…

  You know the point where my uncontrollable urge to research and figure this out kicks in… OCD? Perhaps… I cannot stand the fact that I don’t know what is wrong with Brynnon and I don’t think I will be able to wait to find out if Brett has the same thing or if it is something different. Is it coincidence that both my blond haired blue eyes boys have behavior issues? Is Brett really just acting like Brynnon or is it the same thing just in early stages? Paranoid? Perhaps… Maybe Brett’s few little things were just night terrors… Maybe it’s nothing at all in Brett. This thinking of course just leads back to needing to know what “it” is in Brynnon. I have found so many EEG images taken while sleeping and I cannot find a single one that looks like Brynn’s. I did find a few syndromes that children experience seizures and also have intellectual disabilities and or regression. Why is this so important, to know what “it” is? I need to know what the prognosis will be for Brynnon. I would like to know if he will just grow out of this and catch up with others his own age, or will he stay behind? Is his cognitive function going to get better? Can it get worse? I pray that he will outgrow it and catch up, but if this is not the case, I want and need to know now… I want to know why my almost 12 year old has regressed to rubbing my hair between his fingers like he did when he was very little… Why has his Reading and Learning regressed so much? Why is he acting like a child much younger than he is? It breaks my heart… I need answers and I want them NOW. How am I supposed to peacefully sleep at night, knowing that he could have a seizure… What if the alarm does not pick it up? What if I cannot hear him on the monitor? Will my life ever seem normal? I probably wouldn’t know normal if it happened anyway! 


~Denise
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A little nervous…

Well… Monday is the big day. Brynnon will go in at 2 PM and stay for his 24 hour EEG test. I am so glad they are doing this test, to see a good picture of what is going on in his brain while medicated. Janice & Brandon witnessed what we all believe was a short seizure in Brett last night. This is not the first time it has happened, but the first time that someone besides myself actually saw what he does while sleeping. I was thinking about it last night, and getting upset thinking again about all those times I talk to so called doctors about Brynnon doing the same thing. I was told they were night terrors. I will ask Dr. Flatt about Brett when we consult with him. I know it would take some time to get an appointment with him. It may be the same thing as Brynn and may be early seizures… Perhaps it is even a clue in Brynnon’s diagnosis? So… Monday & Tuesday at Womans and Children’s for the EEG. Neuropsychologist results on the 6th… Back to Dr. Flatt on the 18th… the Children’s Hospital in N.O. on November 1st for consult at the Epilepsy Center. I am hoping that we will have a diagnosis and better understanding of Brynnon’s brain and what his outcome will look like by the years end… Brett will more than likely have an EEG also, as I am going to request it. Hopefully, if it is the same as Brynnon has, we can possibly at least prevent some loss of cognitive function by early diagnosis and medication?  I just wish I had pushed harder years ago….. ~Denise
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Brynnon seems to be regressing further in his learning and behavior since that last seizure. Even the neighbor has noticed a decline in his cognitive function. I wish I could just walk into an office and get an accurate diagnosis today, it’s just not that simple. Is it really a decline or do we notice more? Is it due to the seizure or is whatever “it” is the cause of the seizures? So many questions perplex my mind and keep me going from website to website. So many things seem to fit, like Fragile X syndrome… Is it really possible that something has been missed by so many people? How can so many doctors miss something like this? How can a speech pathologist miss whatever “it” is? It really breaks my heart watching helplessly as he seems to have trouble fitting  in, the world just seems to be a confusing place for Brynnon sometimes. He would be happy fixing things, tinkering with motors all day long. He could get lost in a lawn mower… yet he can only read on a 1.6 level with help and guidance. I worry about the other children too, what if it is a genetic?  Maybe I am making a mountain out of a molehill, I really hope this is the case. I want answers and I want them now!
~Denise
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OY!

 Today it was evident that Brynnon indeed did loose some of his former learning with that seizure. His Reading was very Slow and Labored, although it was the same story we read Monday-Wednesday last week and he did great. I didn’t even see the point in stressing him with Spelling so he did his computer work instead and no written work. I wish there was an easy way to switch the part of the brain that seems to slow down after a bad seizure into high gear again. Perhaps it just needs time to heal or get the cells back in order again… It just breaks my heart that he has such a hard time of it. He is 11 years old, barely reading on a 1.6 level and “was” Spelling on a 5th/6th grade level. I cannot stress enough how great the AVKO Sequential Spelling is! I am so thankful that he was blessed with a lot of common sense. It’s funny how people who have not spent any time with him become judges on how smart he is and how he doesn’t have a low IQ… I know they think is bad, lazy, not trying, a boy… whatever. It doesn’t take but a few times to know who you can and cannot talk to about Brynnon’s condition. Of course today was the day Brynnon would ask what grade he is in… Arghhh… Really, today of all days. I had to be honest, especially when he asked what grade his reader was. Middle of 1st Grade… but… You can Spell some 6th grade words, so you must be in 3rd grade!  Looking to get him an additional alarm, a pulse oximeter that can help alert us in the event his oxygen level drops and would keep a record of his oxygen level for the docs too. It’s going to be a long wait now until early October for the results of his testing with the neuropsychologist… and after this seizure and oxygen loss how accurate are the results going to be anyway?
 Emotions are running in overdrive around here… My Fibro is acting up more than usual… Prayerfully this will all settle down quickly… PLEASE!!! As I responded to a friend today… I know it will get better… with a little time, lots of patience and an abundance of faith… All Things Are Possible!!
This too shall pass… Really it will…  RIGHT??? 
~Denise
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New Scool Year

  We have had a great start to our new home school year. Brynnon has completed testing with a Neuropsychologist. Unfortunately, it will be early October before we meet with him to get the results and probably mid October before I get the full report in writing. I hope it will be a time for answers as this Dr. specializes in the assessment of AD/HD, Autism Spectrum Disorders, Learning Disorders, Brain Injury, Epilepsy and Seizure Disorders, Tourrette’s and Movement Disorders, Developmental Delay, Dementia, and Chronic Pain. Brynnon could easily fit in several of those categories.
  Brynnon is almost recovered from a tonic/clonic seizure this past Thursday morning. My Niece Janice is staying with us and she is sleeping in Brett’s bed.  Brett never wanted to sleep in his bed, when he did, he almost always ended up on the living room sofa before morning anyway. She went to bed and heard Brynnon moving a lot. This is not uncommon for Brynnon with the jerking he does at night. When she listened more intently, she thought he was choking and got up to check on him. She realized he was having a seizure and came to get me. I asked for the time and it was 1:48 AM. I turned him on his side and prayed. I knew he appeared to not be breathing and prayed for him to breath… It was 1:51 AM when I asked my Daughter to call 911 as his lips and chin turned blue. It was 1:50 when he started breathing and stopped jerking. He went into the sleep stage and came out 3-4 times with a blank stare and a few seconds of stiffening and a few jerks each time. Prayerfully this will be the last one… It was very frightening… Every seizure is frightening and as his Mother, just breaks my heart.
  Brett is doing great in his school work so far and he is excited to read new stories and start the AVKO Sequential Spelling that Brynnon has used for the last two years! It’s on to Book 2 for Brynnon and Brett will start Book 1! Brynnon has had a few days off, and will start again on Monday! It’s still HOT HOT HOT in Southern Louisiana! Temps today were approaching 100 and it felt like 105, or so says the news, felt like 110 to me!
 Be blessed until next time,
~Denise
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Oh what a HOT Summer!

Well, the Summer is off to a HOT HOT start! Brynnon was approved for Med-Camps of LA and will be going to Camp the last week of July. They have Camps set up for children with all kinds of problems, so that they can enjoy what otherwise they would miss! The Camp he is attending is called Shining Stars and it is specifically for children with Epilepsy. Horseback riding, canoing and all kinds of fun! I am excited for him and think he will have a Great time! Home School has slowed down for the Summer and will pick back up in late August. We school year round, just enjoy more leisure days when the children can play with other children and enjoy outside. Have a Happy, safe Summer! ~Denise 
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Update… Has it been a year???

Our 6th Blessing Abigail was born early May by emergency C-section. There was not enough fluid for her in my womb, so it was safer to bring her out early! Pregnancy was complicated by Pre-eclampsia and Gestational Diabetes. She weighed 4 pounds 11 oz. Of course this last year has been busy! Abigail will be a year old next month! She now weighs about 17 pounds! Brynnonn’s journey with his medication for Epilepsy has improved in some ways and others worsened. The Epilepsy seems well controlled by the medication, however he still has myoclonic activity while sleeping. The Danny Did Foundation was wonderful, and provided us with a Seizure Monitor free! This made it possible for Brynnon to sleep in his own bed! I spent three months on the sofa bed with Brynnon and Abigail as he was having Grand Mal’s at night while sleeping. Some nights he would not have one and some nights he would have 1-3. Brynnon has a page on my facebook to raise awareness of SUDEP, which without Danny Did we would have not known about. He also wants to raise money for Danny Did to help others get an EMFIT alarm that cannot afford it. His goal is $2,000 by Oct. 19th, the date of his last known Long Grand Mal that sent him the the ER by ambulance. They lost their little Danny to SUDEP at the tender age of 4. They created The Danny Did Foundation to create awareness for SUDEP which doctors do not talk about.