frontal lobe epilepsy

prayeroffaith

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)


   
Advertisement
prayeroffaith

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)