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
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

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

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

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 

Summer

It’s Hot, Hot, Hot! We have been so busy this Summer. Eldest Daughter and I were in an auto accident in May just before Abigail’s tubes were put in. Think I am about as healed as I will be for a while, but my fibromyalgia is sure in full swing… Will see a new Doctor on Tuesday… Going through the weaning process with Abigail, have the days without nursing but the nights seem to be  an impossible task at the moment! Brynnon was switched from Trileptal to Depokeen, seems to work better for the myoclonic seizures and he is a lot better in behavior too! I was told the Trileptol should not have caused behavior problems, but boy did it! He was so much more aggressive and emotional, it was hard to see him that way. His learning journey has it;s ups and downs. He is making progress still, just at a very slow pace. We have to go back and reteach so much, that it is literally two steps forward, one step back every few days… Seems he does so much better when taught one subject a day, two at most, otherwise you loose him and nothing sticks. Brett is doing good with his home school, Most days he seems proud to pass Brynn up, but every once in a while I watch him hesitate to move forward. Hopefully we will find our normal soon! I am still looking forward to the appointment at Jeffersom Neurobehavioral Group on August 3… Maybe we will find some answers there… Till next time, be blessed!! ~Denise

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.

Expecting our Sixth child


Here we are… Expecting “surprise” our Sixth Child! Whew, at 38 this is sure harder than I expected! We have been through some drama, these past few months. Here is a summery:
Last year I had breast cancer symptoms in Jan, Hubby was laid off in Feb., we moved back to LA in March, had a clear mammogram in April, Positive Pregnancy test in late August, Stressful financial disaster looming all year… I went to the breast surgeon for a followup on the Dec. 21st. She said that since the mammogram was clear & since the symptoms had stopped, that it was fine to wait to followup until after the baby is born. I went to my OB Doc on the 25th and mentioned that I had felt a lump. Back to the breast surgeon Jan. 4th. She could feel the lump (I still think it is a clogged milk duct). She insisted, so I had to have a repeat mammogram and ultrasound. The mammogram and ultrasound do show a mass, but it is unclear as to whether it could a be residual from an infection or a cancerous growth. They decided to re-evaluate it on Feb 2nd, and decide then whether to biopsy or not. I got a call to go back to the OB office Thursday. My Quad test came back showing 1 in 10 for Down Syndrome. They did an ultrasound to check for signs of down syndrome, and said “She” has no signs of DS. The Dr. then realized that somehow the lab had my due date wrong by 6 weeks, which had offset the results. He said it will be a lot less when it comes back correctly calculated. So, if we can just get a clear mammogram/ultrasound all will be well. It has been a stressful and trying time, to say the least! We are all excited about her being a girl, as our oldest child who was our only girl will be 20, followed by the four boys 18, 14, 10 & 5 when she is born. I can see why our Abba Father would give us a baby now, I believe she will bring healing and much joy to our family. We have endured so much the past two years. The death of our first Grandchild, Kaylynn (May her memory always be for a blessing), the layoff, move and gee nothing seems to have gone right! I remember having hard times before, but this is different. I suppose it was easier when our family was smaller and certainly when we had closer family and friends. My extended family has just fallen apart over the 18 years after Momma’s murder. Perhaps, it is this way in all families, but I sure do miss the love & closeness I once felt with them all.
So… Here we go, onward into 2010, with great anticipation for what our Father has in store. Much faith has gotten us this far. We know that when our Father began a good work in us many years ago, He will be faithful to complete it!

~Denise

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

Intellectualy Disablity and or Learning Disabled Teaching at home…

The educational goal for every child is Learning, whether this be through the public school or home school. To loose focus on the primary goal with the worries of being behind or staying on schedule is the greatest distraction from the goal.
Praise, Praise, Praise… Not enough can be said about the wonderful effects of praise. Zigler made a profound discovery in handicapped students. They have to be allowed to feel success! This process of praise will not just make the child feel good, it also helps the child to depend on cues based on self-reliance, motivate them to success and also produce the desire to do better than expected.
Time… Simply put, more time has to be allowed for a Learning Disabled child to not only perform but also test and retain information taught.
Rules… Most handicapped children perform best when they know the rules, what will and will not be tolerated.
Mills suggested an informal procedure to find the teaching method that works best for the child. Basically in this model you teach the child ten words three different ways. Using the Kinesthetic, Phonic & Auditory and Visual Methods. This is effective in finding the best method in which to teach any child. It makes sense that since Brynnon scored well in verbal comprehension that he is best taught using the Phonic & Auditory method. He is doing well using this method along with the AVKO Sequential Spelling program, which is actually used with Dyslexics. Linguistics is also working with Brynnon. From the start I found that the old 1960’s Merrill Linguistic Readers worked with Brynnon. I had no idea why, until I found that the new Merrill Reading Program, also linguistic is highly recommended for Learning Disabled children. We will be starting the Dig In book next week and I am excited about the skills book!
After all the lost sleep, worry, stress, searching and begging for answers… I found the answer was in me all along. To meet Brynnon where he is, being intellectually behind, that means to meet Brynnon at his level, in hopes to bring him forward. To bring out the best in him and encourage confidence in his own ability so that he can begin to rely on himself or the clues around him to get the answers he seeks. I am his Mom, and he is a wonderful gift on loan to me by the Father. It is after all the greatest gift I could ever be given, a child in which the Father has blessed me with that will require me to think outside the norm, which is what I do best!