Recalculating….

bbb36063997_1838393646206648_5468404218702331904_nBrett and I went on a grand adventure to Service Dog Training Camp for 10 days. Instead of graduating as a Service Dog Team Brett Graduated with his amazing Dog Taylor as a Skilled Companion Team. The reason is that Brett was not able to learn everything he needs to pass the Public Access Test with Taylor independently is he has a disability. I found it painful to watch as those around us struggled to understand how to reach him and  understand exactly what Brett’s disability is. As traumatic and life threatening as Epilepsy is for Brett, his intellectual disability that his Epilepsy Syndrome caused has the greatest impact on his life and his abilities. Last time it was tested, his IQ was 46. He carries a Moderate Intellectual Disability diagnosis, that is just a number and in no way defines Brett, but does explain why he could not perfect complete control and care for Taylor in 10 days. He is after all unable to care for himself completely without assistance. As I drove the 7 hours home I had a lot of time to think and reflect on everything. When we drove there we were mostly on highways, surrounded by farmland. It was beautiful, but pretty desolate. It was boring and seemed like the same scenery the whole way. This is probably what a lecture without visual aids is like for a person with Intellectual Disability. It did not take me long to realize that we were going to be going a different way… when I heard the nice voice say “RECALCULATING….”
  I inadvertently had missed a turn and somehow by the gift of technology managed to end up on the interstate. This route would take me a little longer (more time needed to reach the same destination), had two tolls along the way (would need more investment to get to the same destination) and there were more exits along the way (more visual cues). What a perfect analogy for intellectual disability. When Brett is taught the right way, consistently for a longer period of time he will be able to perfect the commands. This brings me to my point. Intellectual Disability. Most people do not understand how difficult things are for a person with moderate intellectual disability. A Cognitive or Intellectual Disability is when a person has deficits in thinking and reasoning skills. They usually have difficulty especially with abstract reasoning, being able to apply what they learn in multiple situations and grasping cause and effect. Attention spans are shorter, they experience difficulty with staying on task and have a terrible time organizing information. In order for an intellectually disabled child to learn information it must be broken into small concrete steps and presented in a way that they can understand. Each step must be mastered before another step can be introduced, they learn best with  sequential information. Most intellectually disabled people learn best with kinesthetic methods, meaning they need to learn in a hands on way if possible. They almost always need visual aids to get information to stick in the memory bank to retrieve it later too! Brett like his brother Brynn, looks perfectly normal and most would not realize they even have a disability. This is a blessing in some ways, but other ways more damaging. People tend to “look” at the person and expect them to be able to perform according to “age” and not ability. In many ways a person with intellectual disability will get less help and accommodations than a person who looks disabled. A person with Down Syndrome or Cerebral Palsy may “look” disabled but some are actually not intellectually disabled. The DSM-5 list Intellectual Disability as a disorder with onset during the developmental period (before age 18) that includes both intellectual and adaptive functioning deficits in conceptual, social, and practical domains. To receive a diagnosis of Intellectual Disability they person must meet the criteria deficits in intellectual functions, such as reasoning, problem-solving, planning, abstract thinking, judgment, academic learning and learning from experience, and practical understanding confirmed by both clinical assessment and individualized, standardized intelligence testing. The levels of Intellectual Disability are:

*Mild = IQ 55-70

*Moderate = IQ 40-55

*Severe IQ 25-40

*Profound IQ < 25

For more information about the abilities expected with different IQ ranges see:

https://www.merckmanuals.com/home/children-s-health-issues/learning-and-developmental-disorders/intellectual-disability

 

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It’s been so long…

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I don’t even know where to begin! We are in a happy place, with less seizures, more smiles and lots of laughter! The Aptiom has been amazing for Brett, in addition to drastically changing his VNS settings. He has gone down to minimal seizures, with having only a few a week. Recently, he went the longest ever without a seizure for 11 days! He has done a year of PT and OT, worked really hard in both and made exceptional progress. He hasn’t used his wheelchair except for a handful of times, in almost 2 years. Initially Brett had fine motor control of a 2-4 year old. He is in range with his IQ now at 6-8 age level. He will start up OT and PT again soon and we look forward to seeing more progress. We also hope to get him into vision therapy, as he has a visual disorder that they haven’t figured out just yet. We will finally get Brett’s Service Dog in a few weeks. It has been a LONG and painful journey to get here… but it’s time. He has been through a lot and healed so much since then. I am forever grateful for the anonymous donor that donated through the Chelsea Hutchison Foundation as well as DomestiPups for this amazing miracle for Brett! 

I still can’t believe my Epilepsy Warrior Boys are 18 and 13 already!! 

24909877_10214496209856270_659568372617918225_nbrynn18

Brynnon is a handsome man now, at 18 he is still funny as ever. He still has a few seizures a week, which causes some aggression and irritability, but other than that he does relatively well. He has done well adapting to the world with his moderate intellectual disability and still loves to fix things, especially taking apart things to see how they work! 

With the time available and money needed I figured out that for me, sewing is therapy! I started the adventure wanting a quilt for Brett. When I saw the prices, I decided to make one for him. Well, that led to me making ones for all my children. I started making VNS Magnet Bracelets along the way too. Oh how I do so greatly enjoy making special needs items that will help a child feel special. I started doing vinyl decals for EMS alert, since we use them I knew other parents had a need for them as well. I got busy enough that I opened my own Shop on Etsy! Check it out! 
http://etsy.com/shop/EWB
Here are some of the items I have made for our family and other special needs families! 

Say Bye Bye to those black  plain medical bracelets that come with your VNS magnets and HELLO to having your favorite colors and your name embroidered on yours. Wear them
confidently because they are stylish, adjustable and comfortable. What are your favorite colors?
Let me make yours today!

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

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 do
feel 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
 
   


Brynn had a wonderful time at Camp Alabama provided by Med Camps of Louisiana! For 5 days at Camp Shining Stars for children with Seizure Disorders. He was able to ride a horse, swim, shoot arrows, enjoy nature and he even danced! What a blessing it is to have him have so much fun with children just like him. Priceless, you just cannot put a price on his tremendously happy smile and knowing he feels like he belongs somewhere. Please visit http://www.medcamps.com/ to learn more about MedCamps. They provide Camp experience in a medically supervised environment at no cost for children who other wise would never know a Camp experience. 


They have a wish list for musical instruments, archery arrows, soccer nets, bedding for twin size beds, pillows, art supplies, golf carts, puzzles, costumes, board games, Gift Cards, beds, (Wal-Mart, Target, Lowes), Paint balls and CO2 cartridges. They also have an “Adopt-A-Camper” Program. The program covers 9 wonderful Camping programs for children with Spina Bifida and Orthopedic Conditions, Cerebral Palsy, Developmental Disabilities, Asthma, Autism, Sickle Cell, Hearing/Speech/Vision Impairments, Epilepsy/Seizure Disorder and Asthma.  
                                                

  We got the 21 hour Video EEG results back while Brynn was away at Camp. No seizures were captured on the 21 hour recording! He of course does still have the same areas of dysfunction as well as the Epileptic Spikes. At this time, he does not appear to be in a state of Encephalopathy. We will keep the three medications exactly as they are and will only change anything if he starts a downward spiral again. I will be getting him in to the Neuropsychologist soon to see where he is cognitively. I would guess he is about where he was last August, perhaps making strides in a few areas, but perhaps falling back in a few also. I am looking forward to moving soon… More about that another time! 🙂 Brynn did get approved for SSI last week too. I expected to have to fight for it and he would be closer to 18 before he got approved, but they approved him the first time. Such a relief knowing that if anything happens to either my Husband or I or us both, he will be taken care of. Here in LA there is a 5-6 year waiting list for Waiver services for MR children/adults. I have already picked one of his siblings and discussed with them all that someone will have to take care of him, he is blessed to have 3 older and 2 younger siblings. So it’s only natural to look forward… with praise and thanksgiving that the Father got us this far… and knowing that He and He alone holds the future… With that I look forward with great anticipation, praying for His will to be done, now and always… ~Denise
 
    

Children’s New Orleans Update

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

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

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

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

So much improvement!

I must say that anyone who is having problems with a low IQ child in Reading and Spelling… Please get these two products! AVKO Sequencial Spelling ~ Sequential Spelling is AVKO’s premiere seven-level spelling program for the teaching of the patterns of English spelling within seven normal public school years. Sequential Spelling is great for schools as well as homeschoolers. The sequences are not based on grade level curriculum. The sequences are based on building from easy words to advanced words as from all, tall, stall, install, installment, installation. AND Merrill Reading Program ~The Merrill Reading Program provides targeted instruction to help students become successful readers through carefully paced instruction and practice. My low IQ 10 year old was having terrible difficulty in Reading and was very poor in Spelling when we started using these two curriculum back in August. He is now Reading and Spelling! He is Reading on a 1st Grade level and the Spelling is above a 3rd grade level. These two programs go great together, he often Reads and Spells the same words in the same week. I am so impressed with the AVKO Products, I plan to buy more! The Merrill Readers are great, slow paced linguistic readers, taught in the same way. I really believe that the sequencing is the way to teach low IQ, Reading disabled and Learning disabled children. I am so thankful that this is making such a difference in my Son and hope that this information can help another child. ~Denise