Roller Coaster


Roller Coaster… Roll On… It’s kind of hard to enjoy the ride when you have no idea where the next loop is or even when the ride will come to a halt. So much going on in my life at the moment, it is actually hard to just enjoy the ride. Last week I learned that someone I had gone to church with as a teenager passed away almost 15 years ago and I had no idea. It got me thinking how we just never know… Yeah, I of all people already know all too well you never know, but sometimes it is so easy to get wrapped up in the moments that take your breath away and sting your heart that you forget that we are not promised tomorrow. I recently learned that a close internet friend, close to my age has cancer. What a stark reminder that we should be enjoying each day more… appreciating every moment as though it could be the last…
This is my letter I got today… Hand delivered… Spontaneous love written all over it, courtesy of my Brynnon!

~13 days since Brynnon started Vimpat, and he has had 5 seizure free nights! The last daytime seizure I saw was the day we added Vimpat!~
//www.youtube.com/get_playerHe got to go to the Monster Jam! He talked about it for 3 days, I finally decided he was going to get to go  no matter what! We had a wonderful, glorious week of the  alert, awake Brynn… the “bAd OnE” that I really missed! He was hyper, back talking… he was playful, funny and he was mischievous. That’s the Brynn that is somewhere hidden behind those seizures… behind the random crazy firing of neurons in his brain… We are seeing a decline of that sparkle in his eyes already… His speech is slowing again, he is tired and he is cranky… His thoughts linger and his eyes are dim… That little light bulb is getting dimmer by the day. Only one seizure, Monday night was over 1 minute in the 13 days so far. All the others were less than a minute, which is great… We just have to learn to appreciate ANY and ALL POSITIVE! 

Life is like a Roller Coaster for everyone that ever has lived… Some just have more highs, more lows and more surprises than others! I was talking to my cousin, who I consider a dear friend today. She asked a question that I have asked myself too… when did it all get crazy out of hand… It was after the second known 10+ minute Tonic Clonic… in the early morning hours of Brynnons 11th Birthday. After that second “known” seizure is when it all came crashing down… that’s when my peace and life as I knew it was gone. It was that day that I questioned every moment before and would begin to question everything after. Those weeks I spent on the sofa bed with Brynn and Abigail were my training ground to become Brynn’s fighter, his voice and his Mom in a way that I couldn’t be before. It was there on that sofa bed that I learned about different kinds of seizures… it was there that I fought through the fear to face the seizures… and there that I knew that all I could do for him was ask questions, research and beg for answers… it was also there that I watched as part of him slowly slipped away. I didn’t know much about Epilepsy then… I didn’t know what Intractable or Refractory meant then… After we started Depakene, life seemed to go back to a new normal. The seizures slowly faded away into the background and it was lovely to feel that it was all going to be okay. There were 8 months in between his Birthday Seizure and the 12+ minute Tonic Clonic. That early morning in August I had no idea where we were headed. I had no idea how terrible epilepsy could be… I soon learned that all my little worries that I had, all of Brynn’s life… they were all clues. They were all pieces to the puzzle of Brynn. From the “Night Terrors” to the “Articulation Disorder” to the “Below average IQ,” and everything in between… they all meant something. It just took ONE Doctor, who I am so grateful for, to actually read ALL of his medical history. To ask the right questions and to listen to the answers. So here we are… yes, I am facing it… yes, I know only Abba Father can change it! We don’t have all the answers yet, but we do have hope… We will never ever give that up!

 


   

Advertisements

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)

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)


   

Today…

 Late yesterday afternoon Brynn complained of a headache, he even asked for something for pain and was almost crying. He laid around most of the evening and was quiet for the most part, just a little whiny. He fell asleep around 11 PM, then the myoclonics came back… I thought that the Klonopin had stopped them. His right leg and upper body, arms, shoulders and head was twitching a lot all night long. Lots of nose rubbing and lip smacking/chewing… Saw him have a 1-2 minute tonic event and more clonic activity than I have ever seen in him without the typical tonic start. I don’t know if this is due to the Klonopin making him sleep so hard or if I am just not watching closely enough and am missing the tonic part or if it is a new thing. The Neuro said to call it what you want to and describe it… Well this looked like Clonic Shivering so that’s what I will call it. He’s a bit hesitant to do his school work today… Slept till after 11 this morning. Had a pretty good day, considering the night he had… 
  Brett would pick today to not cooperate at all in doing his home school… It is getting to be more than I can handle just to wake up and function with the fibro out of whack since the accident several months back and lack of sleep with Brynnon… I have not been feeling well the last few days. Maybe I am emotionally drained… 
  Abigail is growing so fast… Over 20 pounds, running… Playing and such a happy baby. Her speech is pretty good so far, I worry more with her looking back on Brynnon and knowing what I know now. Twirling in circles she goes round and round… then she sits… leans back ever so slowly and gently to the floor… and says OH NO… FALL DOWN…. She runs all through the living room and kitchen with her baby. She loves her babies, hugs her babies and kisses her babies… She is such a blessing! The light that sparkles into the darkness….
~Denise 

iPad’s and Children With Special Needs

  If you have a child with Special Needs, you simply must visit this link! While researching teaching methods for Brynnon a while back I read again and again how great an iPad is for Special Needs kids and that there are so many apps for them as well. The website above has videos to show you what the app looks like before you buy it! They are also giving iPads to schools and children with Special Needs in each State. They are excepting donations to get this done from the app makers, businesses  and people like us too! There are also free apps as well. I know when I spoke with the Neuropsychologist that did Brynnon’s testing about it, he said that Brynnon would benefit from one as he is a visual learner and learns best when a picture or chart is used to teach. The only problem I have in getting an iPad for Brynnon is the cost $500+ which I am sure that most parents would struggle with. I have sent a description of Brynnon to this site, although I think the giveaway’s are already assigned. I know Brynnon would do well with it as he has made a lot of progress since we started using  Time4Learning.
Which I highly recommend for those that home school! This is a flash based program so it will only work on a computer, and will not work on the iPad. Which is best for Brynnon anyway, as they would be separate activities helping his cognitive & attention difficulties.
  Not too much going on here… I have done some soul searching and praying… and I feel better about Brynnon’s situation. It was one thing to point out his symptoms do not match Rolandic Epilepsy… A completely different thing to hear Frontal Lobe Epilepsy, Cerebral Cortex Malformation and can become Retractable in Children Like Him within an hour of meeting a fantastic Pediatric Neurologist who has probably seen it all… I realize that the future could become bleak and I accept that. I also realize that it can be just as wonderful if not better than I ever imagined and that is what I hope for. We are not there yet and have a long way to go, so for now I simply will take it one day at a time… Through much prayer and with a lot of faith we will go forward… I will try to stay positive! In the meantime, we have painted the bathroom, hall and living room… Hopefully tomorrow we will paint the kitchen. Something about painting always makes me feel better. I suppose it is an outward sign of the inward change that is happening. I am forever grateful for all the blessing I have in my life and Brynnon is indeed a special child. I am thankful that the Father thought enough of me to place him in my arms… I don’t have a problem with having him stay a child longer than usual, I love children… if I didn’t I would not have had six of them!  

~Denise

Brynnon (12) and Abigail (1)