Took Brynnon to the ER Wednesday, after he started clustering, running high fever and could not recite his ABC’s because he couldn’t remember them. I asked him to recite them to confirm that he had been seizing with little outward signs. They did a chest X-Ray to confirm suspicion of pneumonia, blood test was positive for Mycoplasma. Hmmm, so after Bri got sick a few weeks ago, I got it… then Brynnon, poor little guy… his turned into Pneumonia… Now Janice, Brandon, Brett and Abigail all have “THE COUGH.” I still have it… and from what I have read, it’s gonna be around for a while. Praying that none of us will develop pneumonia, I have just enough for gas money and Brian to eat next week. Brynnon goes Monday morning with Brian to Children’s Hospital in New Orleans for his 3 day Video EEG and MRI. I am nervous about it and am so anxious about what the results will mean. I know he has regressed more with the recent increase in seizures. Thankfully, he can say his ABC’s again… but he is very slowed in speech and has that “lost look” much of the day. I just want all the answers… I want to know what we are dealing with, how to treat it and how to stop regression. Seems like if you can stop seizures then there would be no regression. Once Brynn is done with his testing I will be making Brett’s appointment to set up his EEG. I don’t want his complex partials to turn into generalized tonic clonics. Perhaps if he is medicated earlier we can prevent it from happening. So, onward we go… Praying (and coughing) all the way… OY VEY!!!!! ~Denise
Month: November 2011
Friendly visit with Community Counselor
Thankful for direction from the Community Counselor at OCDD today. She was very friendly and very helpful. She asked why he was not on Medicaid and I explained that the Social Worker I spoke to said that he qualified by income, but we would have to cancel our private insurance for a year before I could apply for him. When our meeting was over she let me speak to another really nice lady who use to work in the Medicaid Department. Apparently Brynn should qualify for Medicaid under the Family Opportunity Act because he is medically/cognitively disabled. So I will get the application they printed and highlighted for me out tomorrow. We will pay a small fee each month and it will cover all our out of pocket expenses while keeping our private insurance. 🙂 They suggested I contact Families Helping Families for help asking the public school for special education, occupational/Language/Speech Therapy services. Although the Home School Legal Defense Association recommends to use the public school for services as a last resort, I think I am at my last resort. We are just in such a financially strapped condition, especially with the medical testing that he has had to have and will continue to need. The Doctors visit Co-Pays are enough to make my head spin some months! It will be a great help if we can get Medicaid to back up his medical care… I am not sure how long it will take to get word back from OCDD. I hope I have taken the right steps in the right direction at least to help Brynnon become the best he can possibly be… He has had several seizures today. He almost fell out at the Dollar store when we went in for his coloring books, crayons and play dough for his 72 hour VEEG/MRI hospital stay next week. He had some kind of seizure cluster and just when I was thinking he needed to go to the ER I felt his head and realized he had a fever. It has calmed down since I gave him Ibuprofen. Hope he does well tonight, going to give him a Klonopin after he eats his Dinner and again after midnight. Hope this will help stop all seizure activity…. I hate seizures… and now I hate all sickness even more than I did before! Had no idea he would get seizure clusters because he was sick. So thankful for those with Epilepsy in the facebook groups, otherwise I would be a crazy basket case by now and have 911 on speed dial… Just 6 more days and hopefully the VEEG and MRI will give more answers and better treatment to STOP ALL SEIZURES…. ~Denise
Where Are We Going?
After Wednesday’s new seizure type I have been doing a lot of thinking about where Brynn has been and where he is going. I pulled out some of his work from last year today. The work he did after his IQ was tested the first time. It breaks my heart to look at what he wrote Thursday and compare it to what he wrote last year.
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| This is Brynn’s Story he did in Home School on Thursday. I typed “I Like My Scooter” for him… It is supposed to say “It goes fast. It is red. Miss Jackie and Mister Sam bought it for me. I love Miss Jackie and Sam. |
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| This is the first thing Brynn did Thursday with his free time, realizing he could not ride the 2-wheeled scooter again… The Neighbor had given him a 3-wheeler a while back and he is determined to fix it up and ride it now… |
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| This is an example of what Brynn was capable of doing at 5 points lower on the IQ scale. This is his AVKO Spelling work completed on 3/25/2010. |
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| This is Brynnon’s work from 9/15/2010. |
I know I am getting ahead of myself… Surely the 3 day Video EEG and MRI will give answers. At this point after this emotional roller coaster with an awake drop seizure, I am afraid of what they will say. I am afraid of the answers… I am afraid that he will continue to regress… I am afraid of loosing my little boy, my Brynnon. I am afraid that he will keep going backwards, and I am afraid that no one will ever understand him the way I do. If his own family that lives with him cannot understand him and get it, why should I expect the rest of the world to understand him? I am afraid that it will happen to Brett too… What if his complex partial seizures progress to a generalized? Obviously they are different, Brett has been normal, no speech problems, no cognitive problems or developmental delays… So, again I sit in the living room with Abigail on the recliner… sick with some kind of chest congestion and cough… watching Brynnon and Brett fall asleep on the sofa bed, while typing away on my laptop… With Hope that these words will reach another who really understands… or even better maybe these words will help a Momma one day who has a Brynn who no one understands either…. Feel like I am trying to plan a journey, I have no idea where we’re going, don’t have money for gas, no one has a map and worse yet no one wants to go along to help… Yipppeeeee, at least I get to leave the house besides going grocery shopping! Speaking of leaving the house, Monday is the appointment with OCDD… hopefully they have a map and prayerfully at least provide a tour guide. ~Denise
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| Brynn (12) Brandon (16) |
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| Abigail (1) Brett (7) |
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| Brian II (19) Tera (21) Janice (19) |
Waiting, Hoping, Praying….
Waiting for the appointment with the Office for Citizens for Developmental Disabilities next Monday… Hopefully they can point us in the right direction for assistance with the Therapy Brynn needs to help him. Would be a great bonus if they could help us get medical assistance for all these test that we cannot afford also… Then the Monday after Thanksgiving is Brynnon’s 3 day Video EEG starting at 9 AM. Brian will have to take that trip and stay with him the whole time. There are too many of us to be able to stay somewhere, even with family. Cannot afford to stay in a motel… and they will not let anyone under 18 stay overnight. So me going with Abigail and Brynnon is a no go… His Mom has kindly offered to go to the Hospital as well to stay if needed or come and go if Brian needs. That’s one thing I can say for her, bless her heart. She was the only person who went to Children’s Hospital when Brian II was 8 months old and was admitted for a few weeks when he could not hold down any food. That was so sweet of her to offer and I am sure that Brian will appreciate it too… They will do the MRI before he is discharged the night of the 3rd day or the 4th morning. Hopefully they will capture all of Brynn’s Seizure types so they can see what goes on in his brain while he is seizing. I assume like the 24 hour Video EEG he will remain medicated… Prayerfully within a week of him getting all these test completed we will have most if not all of the answers. What part of his brain the seizure activity starts in and can it be fixed with surgery… Can they see Cerebral Cortex Malformation… What can they do about it… and what does his future look like? Brynnon is doing so good seizure wise at the moment. I don’t know what is going on inside his brain, but that Klonopin sure has helped to stop most of the twitching and seizing… So on we go… Hoping that the seizure monster is going to stay away from our Brynnon. Praying that Brynnon can now move forward and learn how to read… that those connections in his memory will improve… progress, we want to see forward motion progress… I guess that is what we all want, all us humans… I found that people have a hard time figuring out what it means when I say Cognitive Disorder, so I did more research… Cognitive disorders affect mental processes such as the ability to learn, remember, perceive and solve problems. At it’s basic level the cognitive function is information processing and can be split into three categories; Delirium, Dementia and Amnesia. Cognitive functions originate in the part of the brain called the cerebrum. The cerebrum–also known as the cerebral cortex–takes up the majority of the brain’s mass. It’s made up of four different areas, or lobes: the frontal lobe, the temporal lobe, the parietal lobe and the occipital lobe. Each area carries out specific tasks, most of which serve a cognitive function. Cognitive functions include problem-solving, speaking, learning, emotions, memory, perception and movement. Some tasks such as reading, speaking, and learning require coordinated processing from multiple areas of the cerebrum.
Well… I am off to make pancakes for lunch 🙂
~Denise
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….
Watching….
It hasn’t occurred to me before, funny… I guess I never thought about it, you know how terribly abnormal it is to sit in the same place, night after night watching… and waiting… for my Brynnon and my Brett to go to sleep. Brynn is usually a little whiny before bed, usually says he does not want to go to sleep. After the last extended event I feel guilty to fuss at him like I did that night before he went to sleep. I have a hard time shaking the thought that maybe he knows… I have seen him throw a fit many nights when nothing happened, but that night stands out and scares me. He stomped his feet and refused to go to bed… he fussed and fussed he was not tired and didn’t want to go to bed. Two short hours later he woke up in an Ambulance… I guess all Mommies with Epilepsy feel the same way, knowing that emotions can trigger Seizures. Of course you have to discipline, but it just gets scary sometimes knowing if he gets overly upset he could go into another seizure. Sometimes he even says he is scared to go to sleep. Once we get the 72hour EEG and MRI over, we really need to focus on getting the boys back in their room and hopefully by the new year have a new bunk bed along with a camera so Brandon, Brynn and Brett can all sleep in the same room and we can as a family get some normalcy back.
There he lays with his “Wubby,” the stuffed animal he has been sleeping with since just after the August 25th extended seizure that caused some regression. I talked to the Neuropsychologist about it, and him rubbing my hair between his thumb and fingers. He said it’s not a problem and he was not surprised to hear it, that with the regression this happens. Honestly, I think he sleeps better with the stuffed toy than he does without it, so be it. When his friend that is 10 came to spend the night, it didn’t bother him one bit to hug his “Wubby” and go to sleep either…
So here I sit in the same spot, waiting for them to fall asleep… Brett almost always fast asleep long before Brynn… then Brynn will drift off to sleep… That’s when the watching starts. Some nights Brynn is fine for an hour or two then starts seizure activity, other nights it starts as soon as his eyes close and some nights he is so still and so quiet I have to check and make sure he is breathing…. Tonight it’s just a little twitchy… I hate these nights because I don’t know if it’s going to settle down or pick up… So I sit quietly rocking Abigail to sleep… I think about my Momma and that she will be gone 20 years this Saturday… I think about Brett and what his Seizure activity means, so thankful it has not progressed and that he has actually calmed down a bit the last two weeks. I think about finances, argh, bad idea… I think about the oldest two and their jobs… I think about Brandon and his future… and I pray about all these things, all the children who suffer and all the adults who suffer… and I think to myself, what a sad world we live in… a sad, sad, sad world…. I am so thankful that our Father sprinkles some joy in mine every now and again! ~Denise
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| Abigail enjoyed her lunch…. |
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| Oh yes she did! |
Picture Brynn took of his own eye :0)
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
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)
Too much honesty…
I can do this, I just know I can. I forget sometimes how strong I can be, I just really need a little boost that I am missing this time around somehow. I know I am not supposed to feel this way, but it just does not seem fair. I read a Mom’s comment today about what her child did, my heart ached… it ached because Brynnon is 12 and he is unable to write a complete sentence. It aches because I cannot help but feel like I have lost some of my child. This life that I have been given just seems so hard. Yesterday was Ian’s birthday, taken so young… so many Birthday’s missed. On the 12th it will be the anniversary of Mommas murder… reminders of how unfair it seems, and where normal kind of took a back seat. My Niece asked the other night if I ever wondered what it would be like for Momma and Ian to have never been killed, what it would be like if they were still alive. If they were still alive, I would not be the person I am today. There is strength that comes from surviving trauma that I don’t think you can get any other way. However, if Momma was still here I think I would have gained strength from having her love and support over the last 20 years… I think about Momma every day… What she would be like, what she would think of this or that. I am reminded of how Momma loved “special” children. She was great at working with the children who were developmentally disabled. I like to think that she would just be so excited about all my children and would shower them with lots of love. Sadly, I know that my children are loved, but they do not have relationships with very many family members. They do not see most of them but every few years if any… I know it has a lot to do with Mommas murder and Ian’s death on top of it. I just never understood how the thing that should make everyone who loved them closer, seems to drive us further apart. It has a lot to do with my inability to feel like I fit in, like I did before Momma died. Of course my running to Mississippi, Tennessee and now Cajunland surely didn’t help either. I do not regret any of my decisions, except that I was bull headed when I didn’t need to be and not bull headed enough when it was necessary! I am trying to get refocused and bring the necessary changes that will hopefully help in the future. Perhaps it’s time to reach out to some kind of religious organization, just out of my need for some extra support and positive thinking. I am a very Spiritual person, but over time have developed a distaste for organized religion, especially the feel good preaching. After years of reading scriptures, studying Hebrew, developing my own beliefs and disregarding all man’s teachings, I think it’s time.
I have the appointment made for the 21st with the Office for Citizens with Developmental Disabilities. I am hoping they can help figure out a way to get Brynnon some help with the Speech/Language and other Therapy that he is going to need. I also desperately need to find help with his medical care. We are already deep in the hole owing a half months salary and we still have bills that have not been received yet. I will have to put Brett’s EEg on the back burner. Since he has not had any extended seizures and just has the complex partials while sleeping, I think they will likely have a wait and see approach with him anyway. I am almost scared to get the bill from Children’s Hospital after his 3-4 day stay for the Video EEG and MRI. Not knowing what the future holds for Brynnon, well that is what I am having the hardest time with. I have faced the worst and hope for the best and for now I really need to focus on the now… Living and appreciating each and every day as a gift from the Father. So here I go, looking for “Positive Changes” to help put that oomph back in my step! If I think about it really hard, I can almost hear Momma say “Denise, don’t give up now your almost there!”
~Denise
I have the appointment made for the 21st with the Office for Citizens with Developmental Disabilities. I am hoping they can help figure out a way to get Brynnon some help with the Speech/Language and other Therapy that he is going to need. I also desperately need to find help with his medical care. We are already deep in the hole owing a half months salary and we still have bills that have not been received yet. I will have to put Brett’s EEg on the back burner. Since he has not had any extended seizures and just has the complex partials while sleeping, I think they will likely have a wait and see approach with him anyway. I am almost scared to get the bill from Children’s Hospital after his 3-4 day stay for the Video EEG and MRI. Not knowing what the future holds for Brynnon, well that is what I am having the hardest time with. I have faced the worst and hope for the best and for now I really need to focus on the now… Living and appreciating each and every day as a gift from the Father. So here I go, looking for “Positive Changes” to help put that oomph back in my step! If I think about it really hard, I can almost hear Momma say “Denise, don’t give up now your almost there!”
~Denise
Didn’t See That Coming….
So… My Happy Appointment turned confusing… I am VERY happy that I found a Doctor who I know care about my Brynnon! He was very Good in his exam. He asked a ton of questions, let me explain all the types of seizures I have seen in Brynnon.
He whipped out some word cards and asked Brynnon to read… no surprise there, he cannot read anything beyond an early 1st grade level…
He whipped out some word cards and asked Brynnon to read… no surprise there, he cannot read anything beyond an early 1st grade level…
Then… I can still hear it echo… Do you know the days of the week? Oh I am beaming inside, of course Brynnon knows the days of the week… We do after all go over them at least once a month so he will not forget them! As Brynnon says them I can hear him ever so slightly singing them… Sunday, Monday, Tuesday, Wednesday, Thursday, Friday, Saturday… “Very good! Can you tell me the days of the week backwards?” Nothing… “If Sunday is the first day and Saturday the last day, can you tell me the days of the week starting with the last day and continue until Sunday? Saturday is the last day, what day is next going backwards?” Nothing, Brynnon finally says “I can’t.”
“I am going to say a set of numbers 7, 3, 9, 4 you repeat them” 7,3,4… several sets of three and four numbers later he says “Okay now I am going to say a set of numbers, but this time I need you to tell me the numbers backwards 4,6,9 would be 9,6,4 let’s see how about 5,7,2” 2…4…….7……… several tries later It is realized that Brynnon is not capable of doing it backwards, not once correctly given 3 or 4 sets of numbers at a time. He asked Brynnon several more questions and chatted with him… and turned to me and said
“He is not functioning above an entry level Kindergarten level. I have read all his case history, it is not Rolandic Epilepsy, it is probably Frontal Lobe Epilepsy given the nocturnal seizure activity… Given all his History I believe… (Everything in my mind goes numb at that point)… malformations of the cerebral cortex…” I even asked him a second time what the wording was that he used… “Simply put, something in his brain did not form correctly while he was in the womb.”
So… One visit and this guy who looks kind of like Andy Dick, dressed so not like a Doctor… Seriously, if I had seen him in the elevator I would have NEVER guessed he was the doctor… Rather blunt with a rather dry seeming personality and obviously the most intelligent person I have ever had the pleasure of speaking with who seemed to have an eccentric Einstein like quality about him did what it took a Neuropsychologist 4 days to do and a three Neurologist and a speech Pathologist over 6 years couldn’t do in less than an hour. He also mentioned that it is common in children with Brynnon’s cognitive difficulties to be harder to treat and how sometimes these cases become retractable rather quickly. He also briefly discussed that there are many medication choices for Brynnon and that the Trileptol was a very poor first choice and was not surprised at all that I reported negative behavioral side effects. Depoakene being, by my judgment, about 50% effective either needs to be upped, which in children like Brynn can be pushed into the 120-130 range, not the 100 limit or another medicine needs to be added. We are after all looking for complete 100% seizure control. By the way behavior problems are very common in children like Brynnon.. I asked about Fragile X or the possibility of a genetic disorder, he said we will get there, lets get these seizures diagnosed and under control… and see what the MRI shows…
Can I just say that Doctor who practically laughed me out his office… I feel like he stole my sanity and frankly he stole valuable time and some of my Brynn… he took something from me, by not listening and not addressing my concerns. I wonder where we would be had he listened then….I will be writing that man and a few others a letter when all this is said and done!
So… a 72 hour Video EEG and a MRI starting on Nov. 28th. Looks like this is it… Ready or not, I think we will get answers… Had no idea that I wasn’t as ready as I thought I was for the answers… I know the Father has a plan in all things… So excuse me just a few moments… it’s just gonna take me a little time to catch up spiritually, mentally and emotionally!
~Denise
Prayer of Faith's Epilepsy Warrior Boys 