Got one...sort of.

>> Sunday, February 27, 2011

Bug got to bed late last night because I was at the Crop Because You Care event (which was awesome!) and fell asleep right around 11PM. Shortly after, the Emfit Remote went off...I ran upstairs and he was breathing heavy and drooling...no convulsions but the drooling is a sure sign. It was wonderful to be able to comfort him when he came out of it with his now standard: Mama. He smiled, I smiled and he went back to sleep. I went immediately to the computer to view the video and there wasn't any...the damn camera was offline. Argh. I fixed it and waited. But the rest of the night was fairly quiet.

Except for 3am when the alarm went off again: he was out of bed. I found him on the stairs VERY smelly. Changed the diaper, carried him to bed and he slept soundly until he and Tay (who has been sleeping next to him so Nana and Papa can have her room) started pushing him toward the side of the bed. He pushed her back, the alarm went off and I watched them struggle. Finally, Bug got her over enough to lay down and after a few minutes, she moved over more. They slept for another hour before they were up for the day.

I was excited that the Emfit caught his seizure, not happy the camera was offline but I was there to comfort him and make sure he comes around so it was still pretty perfect.

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Another night, another...nothing.

>> Tuesday, February 22, 2011

He slept well and no alarms. Well, in the morning it did, but if you saw him try to wake up you would know why. He likes to stretch and pull the covers over his head. THIS action mimics a Tonic seizure. So, I am glad it went off, I had to look closely and get Glenn in on it to determine if it was or was not an event. Thank you cameras, and we concluded it wasn't.

Now, you may ask, How come you don't know?

Good question and let me 'splain.

Bug used to have 3+ minute T/C's...no doubting that business. Scary, lousy, and stupid, stupid seizures. Lately he has been having more Drops and Tonics. The Drops are easy to tell as well, he suddenly stops, stares and then collapses. Thankfully, he is sitting down more than standing when this happens. But the Tonics, those can be harder to determine if they are short and he doesn't moan or scream. We are grateful they are smaller and harder to detect. With Bug, his Tonic begins with his left hand tightening up and raising above his head, then his whole body goes rigid and then he relaxes. It's very fast now, less than 20 seconds usually and not too scary just stupid stupid. He can have 2 or 3 a night and then a drop during the day sometimes. With camera's in his favorite rooms we will know EXACTLY how many he has that we miss. But it is still difficult to tell when he is having a Tonic while asleep. So we now use the Emfit to tell us 'something' happened and the camera to attempt to verify.

Did that help?

He is asleep on our bed now, climbed out of his at 8:30am (setting off the alarm within 4 seconds) or so and stumbled, because he was still tired, into our room. I made the bed and placed him on it with his SpongeBob pillow (recently rediscovered) and a blanket and within 5 minutes he was asleep, with blanket pulled over his head.

Hopefully he can make it to school today. It's been a week and he is talking so much I want more witnesses. And, of course, speech therapy to assist him further along.

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You said what?

>> Monday, February 21, 2011

Wow, what a difference a few days makes. Bug LOVES sleeping in his own room. We tidied it up some more, made his favorite toys easier to get to, installed curtains (finally) and mounted the camera above the bed. Oh, and of course put the Emfit in place.

The Emfit was easy peasy to set up. And it works beautifully. I will do a video about it, I SWEAR I will. And having the camera above the bed is fantastic to help verify he did have a seizure and wasn't just sleeping on his knees. When he does that, and he does it several times a night, his chest is off the mat and it sends us an alert. I assume that it's the lack of sensing movement (breathing is a minor movement) since his chest is off the bed but his weight is still distributed, albeit unevenly.

Even when he can get out of bed, he doesn't. THIS is amazing to Glenn and I. The first night he DID get out of bed and the alarm sounded. Totally cool.

When Bug was a toddler he WOULD NOT sleep alone. One of us had to sleep by him and then, if we left, he would wake up and follow us a short time later. One of us would take him back to bed and lay with him until he fell asleep and then the process would start all over again. So, on nights he was in this cycle, we would just let him sleep on the floor in our room. I got SO much grief from people who do not know, about this. Drove me insane and I wanted to have a sleep over and see how they do with 4 hours of sleep a night. The people that were there remember this, and they are thrilled for him now. Some kids, just need more time.

And then Tay started doing it because she wanted to be near him. We tried putting them in his bed together and she kept waking him up. We slept that way for only a few short months before he started seizing every night, and when that happened, we were more than Okay with him sleeping by us. That was 4 years ago.

So, the first night he was away from us was long but satisfying. The Emfit went off 5 times, and we checked the camera recording. None of them were seizures. Rats. And yet, hooray! The next night, Tay slept with him because Megan was visiting and it only went off 3 times during the night, all of them were Tay. Oy. we turned the sensitivity down and that night, no alarms. Of course, I still woke up 3 times to check on him, but I didn't have to go upstairs, I connected to the camera from my iPod and went back to sleep. IT's FREAKING AWESOME!

He now enjoys the crap out of his room. He will play in it, and lay down on the bed randomly. I think he is enjoying the freedom.

Oddly, or should I say, wonderfully, we have not seen any seizures. So, either the mat is not picking them up because they are too light, or he is not having them. We watched him go to sleep each night for at least an hour. One: to make sure he stays in bed and Two: to see if he seizes. And he didn't. If he doesn't seize within an hour, he will not seize until morning. Usually starting between 4 and 7. The camera has not picked up anything that we said: Yep, that's a seizure.

And he has been extremely energetic and very talkative! He will bring his toy over and shove it in our faces and say: Ba,ba...ba,ba...ba...doh. We repeat: Ball and he smiles. He calls me Mom, Ma and Mommy and calls Daddy Papa, or Pa. It's amazing to see and hear. I can say: Maybe he is sleeping better in his bed, but why would that make such a HUGE difference? I dunno, but I am going to enjoy this lull and this energy.

Oh, and he was spinning yesterday. For those of you who knew Bug at 3 years old you will know why THIS is a big deal. He used to love to spin himself, it was one of things the Doc told us led to the Autism diagnosis. He loved for his cousin, Amber. to grab him by the hands and spin him. It was so much fun to watch. And then he stopped doing it when the darn seizures started every night. And now, he's doing it again. Wow.

Just Wow.

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Naked: Back on the Menu

>> Thursday, February 17, 2011

Been lax, I know. But, no one has complained so...

In keeping with the: Getting the children in their own rooms endeavor, I bought Bug an Emfit and Glenn bought a Camera System. It was a little competition to see who could get the coolest device so we could cuddle again. It was a tie.

The Emfit Movement Monitor is scheduled to be here today, but with the storm last night, I would not be surprised if it was rescheduled. The Emfit fits under the mattress and monitors purposeful movements. It's sensitivity can detect any 'unexpected anomaly' that is movement related. Such as muscle spasms that are likely to be seizures, and of course, getting out of bed. When those movements and activities are 'out of normal range' and likely to be seizures, we will be notified via a remote in our room. Wee Hoo...we are thrilled.

When Bug started having multiple seizures at night, he started sleeping next to us. For 4 years he has slept next to us, and for 4 years, Tay has demanded to sleep next to him. But now, the rules have changed. Tay says with the camera she will sleep in her room. Uh Huh. We'll see.

But wait...there's more...

It's not enough to just KNOW he is seizing at night, we need to see what he is doing as well. He is having Myoclonic's and Drop's occasionally and he is very active, we can not follow him around all the time. Although, we have. So Glenn picked up the Logitech Alert DIY Digital Video System .

This system is slick. If you can plug in a lamp and install software, then you can set this up. The Cameras plug into a power brick via a Cat5 cable, and the power brick plugs into the wall socket. The base unit plugs into a wall socket AND a network jack. Then, install the software and that's it. TADA! It will record as much video as you want it to record. THIS could be helpful when showing a Doctor what seizures the patient is having. I can't tell you how crappy it is to not be believed until they see it for themselves. I can view the video feed on my laptop, phone and iPod Touch. Which sends this techie into a naked happy dance on the table. The coolness of this is practically particle splitting with no big boom cool.

I was so impressed with the system, we are buying two more camera's today.

We have big hope for sleeping alone in a room again, all the while knowing and seeing that Bug is safe. Our lives, have just gotten a little more secure. Thank you Emfit and thank you Logitech. Although I doubt that Logitech thought about Bug when they invented this, but maybe I will let them know.

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February 3, 2011

>> Thursday, February 3, 2011

Bug has been ill...again. And if one more person tells me: He is sick a lot, I may have to slap them. I KNOW he is. He has been to the Doctor that can tell me how his immune system is and they say it is fine. He likes to put things in his mouth, all the time, and anything that will fit. Gee...I wonder if that is why.

He doesn't seize when he IS sick, but when he is getting sick.

This time, he had a few bad ones but mostly he had Myoclonics. Quite a few this morning. About one every ten minutes. He had been holding the pills in his mouth and letting them melt, instead of swallowing them. He's getting awfully good at that.

But what concerns me the most is the weight loss. Sure, he is getting taller, but he is so thin. I know that all 8 year old's go through this but it's hard when they can't say: Mom, I'm FINE! No, I just have to watch what he eats and THAT he eats. At this point he can eat Cheetos and Hamburgers all day everyday, as long as he eats. And he has been wobbly and clumsy. Could also be his sudden growth spurt. So hard to know.

AND he is losing his two front teeth! This is a Holy Crap moment for me. For Tay too...she keeps checking her teeth and asking if they are loose. It's super cute.

In the middle of all this sickness, Bug woke up at 4am one morning and said: Mom. Just Mom. Clear as day, so clear I thought it was Tay but it wasn't. It was my little boy making sure Mom was still there.

How can I be away from him when his Emfit gets delivered? This may be tougher than I thought.

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What a Seizure looks like (Graphic Content Included)

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Seizure Tracker.com

Seizure Tracker.com
Free online tools to provide people living with epilepsy and their doctors with a better understanding of the relationship between seizure activity and anti-epileptic medication dosages. Reports generated on SeizureTracker.com include detail graphing capabilities and are easily sharable with caregivers.

Diamond Potential Awareness Award

Diamond Potential Awareness Award
Thank you Holly at Diamond Potential for this award. Awareness leads to understanding and acceptance. And let's face it, we all need to feel accepted for who we are. The battle has just begun!

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