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.

2 comments:

Jennifer February 22, 2011 at 5:36 AM  

Annette, I'm so glad that you're finding some peace and Bug is finding some sense of freedom. I hope this continues to go along the good path and can't wait to hear more about Emfit.

Nett February 22, 2011 at 9:20 AM  

Thanks JJ. It's been amazing to see the difference in him. He hasn't babbled this much...well...ever. I will try to do the video in the next few days. Hopefully he can go to school today and I can clean up the rest of the house. ;)

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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.

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