Month: November 2011
Friendly visit with Community Counselor
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.
|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.|
|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…|
|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.|
|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
|Brynn (12) Brandon (16)|
|Abigail (1) Brett (7)|
|Brian II (19) Tera (21) Janice (19)|
Waiting, Hoping, Praying….
Momma gone 20 Years tomorrow…
|Abigail enjoyed her lunch….|
|Oh yes she did!|
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….
iPad’s and Children With Special Needs
Too much honesty…
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!”
Didn’t See That Coming….
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!