Brynn had two Complex Partial Seizures followed by a Tonic Clonic on Wednesday. On Thursday, thanks to the camera recording it, I found a portion around 4 am where his right root twitched for 14 minutes followed by a full body convulsion. I found several more that I had no idea he even had over the first three nights. His Neurologist increased the Zonegran by 50 mgs. to 250. The Depakene is still at 625 mgs. twice daily. He also increased the availability of the Klonopin for him and said to give him one if he has more than one seizure in an hour or if I see any signs of clustering. We dropped the Trazadone back down to 100 mgs. on our own, as Brynn was getting tired without it again. We will see if the Zonegran increase makes it necessary to increase it to two again. Hopefully, we will gain better control again. We go back to Children's on March 9, so we are getting close. Feels like it has been forever since the last week in November when he went for his testing. Expecting to talk more this time as we know a lot more about the seizures and have videos to show also. We bought the camera system that is able to record on demand or all night. It works great to record all the night activity. I found a 15 minute seizure I had no idea he had on it. He said he was sleepy that day, I didn't watch it until that night, so I had no idea that his tiredness was seizure related. He is showing interest in Reading again! It is hard to Read with him, knowing that he is doing his absolute best and struggling. He is still using the Merrill Reading Program. He is Reading with the Dig In Reader again. It is a great program for him, from the very beginning of his Home School Journey when we did SOW (Student Of the Word) he has used it. We have tried so many other programs and always come back to Merrill Readers! Merrill strengthens the decoding skills as it builds confidence while using high frequency words in the text. It also has the sequential properties to it that Brynn has always done well with, just like the AVKO Sequential Spelling.  Here is a sample story from the Merrill Reading Program Book B Dig In.

Sid and the Van

I am Sid.
I can fix a van.

The van had a bad fan.
The fan hit the van.
I can tap a pin into the fan.

I see bits on the fan.
With a rag, I got rid of the bits.

I did fix the van.   

I have always been impressed with Brynnon's ability to pick up on sequential information. I had no idea why, and still do not completely understand it, but it works for him and that is all that matters! AVKO Sequential Spelling has taken him so far in Spelling... I wish he could Read the words he Spells. The brain is a complex and amazing organ. The only answer I have as to why he can Spell a word and not Read it is his wires are missing. His cognitive disability makes it impossible to make that connection. I learned the most from this video I found on you tube while researching Fragile X. It is 80 minutes long and I have watched it a few times. I think about this video all the time as I teach Brynn. What was so frustrating to me before, now makes sense!     

Emerging research on overlapping patterns of cognitive function in fragile x, Turner, and chromosome 22q11.2 deletion syndromes and their implications for intervention. Series: "M.I.N.D. Institute Lecture Series on Neurodevelopmental Disorders" [Health and Medicine] [Show ID: 20284]

Brett is doing wonderful with his Reading. He read Fox on Stage by James Marshall this week. He is enjoying Reading more with each new story. I am using AVKO Sequential Spelling with him as well. I think it's a great program for anyone!  Brett has taken a fondness to Brandon's Electric Guitar. He is spending a lot of time with it lately. 

Brett (7)

  It breaks my heart for Brynn to see him advance, knowing that he is being left behind. Brynn had a really hard time when he heard Brett read and realized that he couldn't read the same stories. I explained that some people are just better at some things than others. Brett cannot take apart a Television and Brynn can.  :) This seemed to make him feel better and I have seen a greater confidence in Brynn as he works on his Reading too.  

 Abigail is up to 23 pounds, not bad from 4.11 at birth. She is getting so big... She is counting everything and singing... Such a happy little girl. What a blessing she has been!  She is pretty active and is in the habit of staying up way too late with me watching Brynn... If she sees Brynn move on the monitor she will say uh oh Brynn okay. Children learn so much, even when we think we are not teaching them! 

Brandon (16) and Abigail (20 months)

Brynnon (12)

 

A Smile as Big as the Moon...

Finally got to discuss the movie with Brynn, "A Smile as Big as the Moon." I watched it first to make sure it was something I thought Brynn should watch.  Brynn, Brett and their friend that stayed last weekend watched it Saturday night. Brynn has not been to public school yet, so I found the movie to be a good way to show him both sides of what he could possibly face. He has known for some time it's harder for him to learn. He has heard the Doctors say cognitive disorder, intellectual disability, regression, slow, special needs... but in general he has been blessed and never really been made fun of. He has been embarrassed but not made fun of by other children. Due to the extended seizures we have had to reteach much of what was taught and I realize that he really needs therapies that I just cannot provide him. It is very frustrating to teach him and watch that spark when he "gets" it and watch that spark fade away with a cluster of seizures or worse an extended one. So with this in mind I watched the movie and let them watch. I observed the reactions to the different aspects of it. Sunday evening after the company left, I asked Brynn what he thought about the movie. He responded by saying "I don't want to be special." Of course I asked him why? He said "Because special kids get made fun of and I don't want to be made fun of." Fair enough... I asked Brynn which child in the movie he thought was more like him... He identified himself with the Down Syndrome child because he was funny and liked to hug. He also identified himself with the Autistic child because he was "big." I explained that when he goes to the public school he will not stay the whole day, but will go for therapies like speech and language. So yesterday I got my brain all prepared and made the call. I had already spoken with a Lawyer and verified that Brynnon does qualify for services in LA a few weeks ago. So, I spoke to a school counselor, the Special Education Department and the woman that does the Home Bound services... The conclusion... They have never, nor do they intend to service a "Home Schooled" child. Well... Thank you for the reminder why we should all avoid the Public School like the plague... Still considering calling a Civil Rights or Disability Attorney, as under the law he does qualify as we registered under the Private School option in the State... However, at this point I think the risk to his self confidence outweigh the benefits he would receive from getting services through the Public School.

  I didn't say it because I was scared to... but Brynnon went 8 days recently seizure free! Yeah, silly I know but it seemed like every time I would proclaim 3 days no seizures another would come that night or the next. So 8 days is his new record, since his last extended tonic clonic! The month of January brought 19 seizures that I logged. I logged the ones we saw, except for the really tiny ones that are so quick they are easily missed anyway. I would definitely say he has reached a new improved "normal" concerning his seizures. He is making progress again in his AVKO Sequential Spelling as well as his Time4Learning.com work. The iPad has helped him to have fun and learn at the same time. Hard as I try to get him to have fun with other learning programs, he will spend hours working the puzzles on his iPad. Didn't take long to figure out that he needed some modifications made to his iPad. You tube was disabled, I disabled the browser and added Mobicip for safe internet browsing. Added parental controls and a password too. No sense handing the world wide web to a 12 year old disabled or not! :) 

 Brett is still having those "events" and the plan is still to ask Brynnon's Neurologist what he would recommend I do next. I think most people would get that you cannot diagnose seizures that happen while sleeping, until you do an EEG while sleeping. Makes perfect sense to me, but the Pediatrician... Not so much! Oh well, we needed to see more Pediatricians anyway... There are so many more left near this town.

 Time marches on and usually brings lots of changes with it. Expecting this year to bring many changes, all for the good. I am pretty excited about the prospects for a better life actually... I want us all one day to smile as big as the moon! Speaking of time, I started writing this blog Monday... it's now Friday... so I suppose I will go ahead and publish it!  

Have a Great Weekend Y'all!! Till next time here are some pics of the boys enjoying putting the new bunk bed set up...

~Denise 

 New Camera system with night vision! :) See Abigail climbing into Brett's bottom bunk? LOL

Brett's normal results....

Brett's doing  great in Home School. He is Reading really well, it's amazing how much he has progressed just over the last few weeks. I think he may have been holding back, knowing he was passing Brynnon up. They had company come over for the whole weekend to play and stay the night. It was great for Brynn and Brett to have so much fun playing and being boys.  Brynn has been more tired than usual this past week. I started logging every tonic, tonic clonic or partial seizure 30+ seconds I see on his iPad. He had 19 in 30 days. The Zonegran has made an impact on lessoning them... how long they last and improving or eliminating the postictal period too. His Neurologist mentioned when I reported the last increase in seizures that we still had room to go up on the Zonegran. Think I will put a call in if he continues this trend as it seems like an awfully short "honeymoon phase" with this new medicine.
I spent a lot of time over the last several days reflecting on our past, present and future. Much of my thoughts drift to MS and what was. Amazingly, in MS we had the love and support of so many people who were not family. They took the place of family each one in a very special loving way. Here we have more family, but we have failed to really establish long term constant relationships. So at a point in our journey where we need the most love, support and help... we are alone with the exception of very few. We have wonderful Cajun neighbors, one whom the children affectionately call Gan Gan. She has done so much for us and been so supportive. I pray that our Father will bless her for being such a blessing in our lives. Unfortunately, I have had a family member say about Brynn... "I have talked to him and seen him and there is nothing wrong that that boy" among other things that just are not worth repeating. I have had to fight every step of the way, and finally get some answers, only to realize that it doesn't matter. People have these preconceived ideas about what intellectual disability looks like and obviously Brynn does not fit. I have always avoided asking for help and never expected it. It does not sting any less to see that most people not only will not help in any way, but cause drama to induce more stress. None of us deserved what the last several years have given us, much less people kicking us around while we are already suffering.  Speaking of being kicked around... To that person who sits contemplating and joking about how to hurt us, gossips & creates drama for fun... You better pray and pray hard... because my Father, the Creator of the universe knows and sees all, He does not sleep.

So... I got Brett's results, his 30 minute awake EEG was normal. Pediatrician said she will not order anymore test. I said but he did not fall asleep and a EEG can not be considered complete without sleep. She said it does not matter, maybe he is faking. Faking? Yes, she says she had an 8 year old Niece who faked seizures... I said it happens while he is sleeping. How can you fake a seizure out of a dead sleep? She says, yeah about that... No one has seizures only while sleeping. I said Brynn did, in the first two years there were ONLY seizures while sleeping... then he started having them while awake. Brynnon had the same events as Brett is having for years while sleeping, before and after his first known Tonic Clonic. The doctors I asked said it was night terrors. She said Brynn is different. I said, so basically your telling me that I am supposed to watch this happen until, God forbid, he has a potentially dangerous tonic clonic. She said I am sorry there is nothing else that can be done... Medicaid is not going to pay for another test. I said Medicaid? I don't have Medicaid, I have private insurance. Well they will not cover another test either. There is nothing to be done and no reason to investigate this further. Hmmm... Is it really different because Brynnon is Developmentally Disabled? How does his Cognitive Disorder mean that he is so abnormal that it is accepted that he had his in sleep only initially, but Brett cannot because he is normal functioning? What good is a 30 minute awake EEG on a child that has suspected seizures while sleeping anyway? Brett is normal functioning, he is reading on level and obviously is not having any cognitive effects. I will continue to watch Brett and ask Brynn's Neurologist at Children's about it in March when we go back to talk about more options for Brynn.  Seems nothing can be easy... but that's okay, the longer it takes and the harder you work for it... the more you appreciate it anyway!!! ~Denise

 

The Fear Of the Night

I hate the night and the peace it tries to steal away,

I sleep so much better after the break of day.

I do not like the fear I feel in my racing heart,

Every time I see signs of a seizure start.

I just want them to go away and never come back,

Never to be remembered or get him offtrack.

These seizures you see they take him away,

They nibble at my little boy day by day.

You may not see it through his big blue eyes,

You might have missed it when part of him died.

Maybe you don't know the terror I feel,

Watching him and praying for God to be near.

Maybe you don't know the heartache,

Of just simply praying he will wake. 

Maybe you do know the love for a child,

How epilepsy can make your mind run wild.

Maybe you have seen a little of your blessing slip away,

That night in your memory the seizure monster did stay.

If you know the horror of watching your blessing in a seizure,

You know all too well there is never a moment of true leisure.

It stays in your mind hiding behind your smile,

The fear that the Epilepsy will become motile.

For now prayer is what holds it together,

Appreciating each day regardless of the weather.

For now we cherish each day and all of the light,

We pray reality doesn't come to the fear of the night....

~Denise Marsh

Brett had his EEG...

Brett went this morning for his EEG... and now the wait begins. I cannot stand the wait. It is gut wrenching to know in my heart that things change so quickly. I have known, watched him seize and videoed many, many nights. Yes it will be different to hear the Dr. say... It's always different when someone confirms your fears. What am I supposed to think? Will the diagnosis give reasons for the anger outburst, the irrational fears? Will it give answers for Brett wetting himself in day and night time? Will it give us hope or more devastation? Will it give me answers for Brynnon or questions for the other children? Why is this happening to us? Why does Epilepsy have to be happening in my little boys and have it ever touched our older children? Will it ever touch our littlest one. Is it genetic? Is it the same as Brynnon? Please Abba Father makes these answers come quickly.... I don't think I can handle much more.... 

3 Appointments... One day...

3 Appointments one day...   :) 

¸...¸¸.•*´¯`*•.¸¸...¸Abigail is 20 months and I agreed to one shot, her first ever vaccination/injection DTaP-Polio. She dismissed all of my concerns with her development as all of them "can be normal." Had no idea that eating the coffee table, plastic toys ect. could be "normal." Her weight is 22 pounds exactly. When I told her about her picky eating she said she is a milk kid... between the toddler formula, Ovaltine and other things she is eating she is a lot healthier than these fat pudgy babies that most docs compare all babies too. I was impressed with that statement... I have been to those doctors! :)¸...¸¸.•*´¯`*•.¸¸...¸

¸...¸¸.•*´¯`*•.¸¸...¸On to the next... Brett goes Tuesday for his EEG. She confirmed the videos "look like" seizures, especially given Brynnon's situation. Referred him to a local Dr. for the wondering eye again. It's been almost 2 years since we had it checked, so it's time... Maybe this Dr. will do something to help it. Brett's hearing and eyes are perfect! Hopefully his EEG will give answers to his night time seizures.¸...¸¸.•*´¯`*•.¸¸...¸

¸...¸¸.•*´¯`*•.¸¸...¸Then there's Brynn... She suggested Brynn get more exercise, because he weighs 132 pounds. She said she hasn't seen that kind of weight gain with Depakene, hmmm Neurologist said he has. I told her is is always active and spends a lot of time outside. He is probably the most active in the house for that matter. He is always doing something! She said he needs to be tested for genetic chromosomal disorders, Wow... There's an idea... Duh... Really hope Children's Hospital will go this way at the next visit and I have asked for it over and over again.... He will be seen there March 9th to decide which direction we can proceed in since he is still seizing. The Dr. wanted to give him time to adjust to new meds and balance out since he has had reduction in seizures during the day and has had lessoning of night time seizures. He probably had a grand mal last night I found him in post ictal state pool of drool, twitching eye lids, eyes rolled back... took about 2 minutes to get him to respond. He had a slight fever 99.5 today at Pediatricians office so I am wondering if he is getting sick. Hearing and eyes are perfect! Waiting for His Neurologist to call... Saw a short simple partial this morning, other than that he seems fine now....¸...¸¸.•*´¯`*•.¸¸...¸

Brynnon 1/13/12

Brynn's Starting to Question...

 Brynnon is starting to question things and put the pieces together. He asked me yesterday morning what happened when he was eating his cereal and his bowl was about to spill and he could not stop it. It was a seizure, a simple partial seizure because he did not loose consciousness I told him... While doing his Home School yesterday afternoon he completely messed up in his math, adding two digit numbers he carried when dealing with single digit answers adding a tenth and ended up with most of them wrong. He was disappointed as he thought he had done an excellent job and would have had them all correct. We went over them all and I showed him what he had done wrong. He counted by tens to tell the time instead of by fives. We spent all last week going over two digit addition and telling time. He said when I reminded him about counting by fives to read the clock "it is there in my brain but I couldn't reach it." Last  night he asked Why he has to take so much medicine. My heart skipped a beat... I told him the truth. You have Epilepsy and we need you to have "No Seizures" to protect your brain so you can learn and not loose what you know. His next question was obviously more difficult to answer. Why isn't the medicine stopping them, again I told him the truth... Your Epilepsy is a little harder to treat and we need more than one medicine and maybe try different medicines together to stop them. 

 His seizures are very light when he is having them this past week. He is still having some simple and complex partials during the day and he does have the myoclonic and some partial ones at night and a lot of moaning while sleeping too. Definite seizure activity but at least we are not having major tonic clonics/tonics while sleeping. I spent some time last night thinking about things, researching and seeking answers once again. I don't think the answers will come easily and I don't like feeling like I cannot help my child. When he had the first EEG done the seizures were coming from the top and moving downward. This time they are coming from deep in the frontal lobe. This explains why his seizure types have changed and also explains some of his other symptoms. 

 Treated or untreated the evidence is obvious to those that know Brynn best, seizures have taken part of him away. Seizures have affected his ability to learn, retain what he learns and his ability to progress forward. Seizures do affect the brain when they are prolonged such as Brynnon's major ones have been, they actually cause brain cell death. Michael Wong, the physician heading a 2007 study at Washington University School of Medicine, stated that the observed dendrite damage accounts for the occurrence of cognitive impairment seen in those with seizure disorders. Scientific data does suggest that recurring seizures may contribute to nerve cell injury in the brain associated with declines in cognitive function and quality of life. Repeated studies have proven certain groups of brain cells may die after a single extended  or repeated small seizures. Research over the last few decades show that Seizures do affect Learning, Speech, Higher Brian Functions and  Memory. Frequency of Seizures as well as the length of the seizures are the most important clues to what damage is being done to the brain. Obviously to prevent further damage, Brynnon needs to be completely seizure free. There is no way to know how long it has been since he has been seizure free, because we were not watching him as closely before while awake, at all while sleeping and we did not know the symptoms well enough to even recognize the partial seizures. Knowing what I know now I can say certainly he has had seizures since he was at least 5. There is no way to know how many tonic clonic seizures he has had while sleeping or how long they were. I regret not researching more years ago after the first extended tonic clonic. I think most of all I regret listening to people who said seizures do not hurt children, seizures cannot kill you and it's no big deal. Yes people, seizures can harm the brain... yes people, seizures do kill... It certainly would have helped if the very first Neurologist would have asked more questions of a parent who knew nothing about seizures. It would have helped even more if the second Neurologist would not have dismissed my concerns with learning, regression and cognitive function. That was over 2 years ago, it angers me to think had he listened we could have medicated him then and perhaps already have made the progress that we are looking for... Worse it could have prevented the damage to Brynnon's brain that is irreversible. Yes, I do realize for most children Epilepsy is not going to damage the brain... This was not the case for Brynnon obviously. Yes, I do realize statistically he has a small risk for death due to a seizure. I also realize that is a risk I am not willing to take without knowing I did everything to prevent it. The audacity of some people to even suggest and say the things they say is beyond me. The research even suggest that he is at a higher risk for SUDEP as well as an early death in general because he has a Lower IQ. If the current Neurologist is correct Brynnon's IQ range has always been what it is, nothing changed that. If he is correct both the Developmental Disability and the Epilepsy are both caused by a Malformation in the brain. Yes, the research even supports that IQ's do not change with seizure activity, cognitive function does.

 Trazadone does seem to be helping Brynnon sleep, we should hopefully have him on a more normal schedule in a few days. He is sleeping good this morning, along with Abigail and Brandon... While Brett plays on Animal Jam... Time for everybody to get up and start our day... Taking the rest of the week off from Home School for Hanukkah! Yeah!  :)

Read more:

Meeting News: Do Seizures Damage the Brain? Jack M. Parent, M.D....

http://www.epilepsy.com/articles/ar_1064856376

Do Seizures Harm the Brain? Donna C Bergen, MD...

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1783429/

Epilepsies in which Developmental and Psychiatric Disorders May Be Comorbid...

http://search.yahoo.com/r/_ylt=A0oG7kcGoPBOYHgAimtXNyoA;_ylu=X3oDMTE2bGE2cGRpBHNlYwNzcgRwb3MDMTEEY29sbwNhYzIEdnRpZANBQ0JZMDJfMTQy/SIG=132h8mukg/EXP=1324421254/**http%3a//www.oadd.org/publications/journal/issues/vol10no2/download/thompson.pdf

Epilepsy and Learning...

http://www.efwp.org/programs/epilepsy_learning.shtml

Most people with epilepsy do not have intellectual disabilities, but a substantial minority of people with intellectual disabilities have epilepsy...

 http://www.intellectualdisability.info/physical-health/epilepsy    

What is a Developmental Disability?

 http://www.cardinalmccloskeyservices.org/what_is_mrdd.shtml

Symptoms of Mental Retardation...

 http://www.mentalhelp.net/poc/view_doc.php?type=doc&id=559&cn=37

How Do Seizures Damage the Brain? | eHow.com http://www.ehow.com/how-does_4598154_seizures-damage-brain.html#ixzz1h5FzfwA8

Developmental Disability...

 http://en.wikipedia.org/wiki/Developmental_disability

What are Developmental Disabilities?

 http://www.nichd.nih.gov/health/topics/developmental_disabilities.cfm

 

Finally got Results...

 Got a call from Brynnon's Neuro today. He said Brynnon's MRI appears normal, but that just means that there is no obvious malformation. He says he still believes that Brynnon's Developmental Problems and Epilepsy are the effects of a malformation and a problem with the wiring in his brain. His EEG was a mess, still very abnormal and of the three complete seizures he had while hooked up two had no outward signs that could be seen and one just had signs in his right arm. He said if I can show him regression we will look into other metabolic or genetic causes, but for now his diagnosis is still Malformation and he considers him to be Refractory. He cautioned me when I said that the new medicine is really stopping the complex partial seizures. He said although we hope that he will continue to respond with the new medication, we cannot let our guard down as children like Brynn tend to "Honeymoon when a new drug is introduced and then loose control again." I asked him about the Klonopin loosing effect and he said with him being on it for almost 3 months it's normal to loose control. I told him that Brynnon has had trouble going to sleep over the past few weeks and he said it's not the new medicine interacting, it's lost effect. He is not ready to remove it because it may be a crucial part to his recent seizure control, we will talk about removing it later. So he called in a new RX for him to take before bed that will help him sleep as sleep is a crucial part of maintaining seizure control. So we will get that filled tomorrow... I am a little apprehensive about adding yet another prescription to Brynnon's brain, but I do realize that it is necessary and who knows it may be the key to complete control and prayerfully forward progression in his learning and cognitive function. I will be contacting the public school for speech/language therapy after the New Year. 

So... onward we go... this sure is one bumpy ride and frankly I am not liking much about the trip... except the people in the car, I am so greatly blessed to have them! We will let the windows down and enjoy the cool breeze blowing through our hair a while, knowing that Abba is still in control...     

 

Confusing Feelings...

 We are still waiting for the Video EEG/MRI results from 11/28. I would like to think no news is good news, but the only good news they can give me at this point would be they found a switch to stop the Epilepsy and flipping it will also reverse any damage, causing his Cognitive function to be normal. It would be great to not have to explain that my Son has a Cognitive Disorder and testing proves this originated in the Frontal Lobe of his brain. Yeah, people have a hard time comprehending that just because a child can have a conversation with you doesn't mean they do not have a disability. I guess it will forever be a problem for my Son because you think he looks and talks normal? Oh well... Believe it or not I really do not care what people think, I am just afraid that they will do more hard than good in acting like there is not a problem. After the New Year I will have to go to the Public School and figure out what services Brynn Qualifies for. His IEP is full of Therapy that would help him develop life skills and become the best he can be. I certainly cannot provide all his needs. 

 I got the answer from OCDD today. I initially went thinking they will say he qualifies for Special Education Programs and maybe some Therapy. I didn't expect them to say that he qualifies for services. I didn't realize how shocked I would feel to see in black and white the the State has defined my child as Developmentally Disabled. Even when you know something, think you are prepared... it just seems to hit you when you see it on paper, from the people who know what they are talking about. So me being the OCD research read everything in one day type...

http://www.nlm.nih.gov/medlineplus/developmentaldisabilities.html 

"Developmental disabilities are birth defects that cause lifelong problems with how a body part or system works. They include

• Nervous system disabilities affecting how the brain, spinal cord and nervous system function. They cause mental retardation, including Down syndrome and fragile X syndrome. They also cause learning and behavioral disorders, such as autism
• Sensory-related disabilities, which can cause vision, hearing and sight problems
• Metabolic disorders such as phenylketonuria, which affect how your body processes the materials it needs to function
• Degenerative disorders such as Rett syndrome, which might only become apparent when children are older and can cause physical and mental problems

Most developmental disabilities have no cure, but you can often treat the symptoms. Physical, speech and occupational therapy might help. Special education classes and psychological counseling can also help."

 So... this is where we are... not sure where we are going but apparently we are going this way... Hopefully it will not be too late in the week before we get the Neurologist results...

Brynn after Pneumonia and too many seizures... 

Abigail to make you smile... Works for me, without fail... :)

OY VEY!

 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

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. 

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....

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.

Read more: Cognitive Brain Functions | eHow.com http://www.ehow.com/about_5312779_cognitive-brain-functions.html#ixzz1dnZ3C5AY

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

Abigail enjoyed her lunch....

Oh yes she did!

 

Picture Brynn took of his own eye  :0)