August 31, 2010

>> Tuesday, August 31, 2010

One event.

It was a Tonic Seizure. He screamed and that's how we knew.

I thought outloud: I guess the Zonegran makes a difference.

Glenn responded: Or it's the Melatonin I gave him.

So, we will have to wait and see which it was, hopefully he won't go back to nightly seizures, the last 10 days have been pretty great.

I'll just wait for the other shoe to drop.


August 26, 2010

>> Thursday, August 26, 2010

No events.

Got a note from his teacher that Bug was slapping the assistant who was trying to get him to sit at the table. THIS bothers me to no end. THIS is why I hated Depakote. If someone can tell me that it is helping him neurologically then I will leave him on it and we will all learn to deal with it. But, damn, it bothers me more than almost anything. :(


August 25, 2010

>> Wednesday, August 25, 2010

No events.

I took him to school yesterday, after we picked up Megan, and he remembered everything about it. He walked to his classroom and immediately beelined for the toy cabinet. :) He really likes school and it was apparent with how much he smiled.

He was very Mommy oriented again, however, Megan received some of the aggressive attention. Made me smile.

He did not want to sleep last night, so I let him get really tired and put him to bed at 10:00pm. We had to wake him at 8:30 to make the van to school. It's pretty darn cool that they have a private transportation company that picks him up and drops him off. I was concerned about the lack of air conditioning on the buses and him not sweating. A little guy could overheat quickly if his body does nothing to cool him off. But, private van = problem solved.

He seemed to remember the van and headed right for his seat. It's great to see that. And even better to know that he CAN hear and now it's just a matter of teaching him words. He really is a 12 month old, with mad spinning skills.


August 24, 2010

>> Tuesday, August 24, 2010

No events.

His energy level today was off the charts. It wasn't destructive, well, any more so than the normal food flinging, just very Mommy oriented.


August 23, 2010

>> Monday, August 23, 2010

One event.

And I am bummed out about it. Glenn said it wasn't a big deal at all. He went tonic and then woke up and sat up. Less than 5 seconds.

This morning he ate well and is trying to sit on me a lot. Tay was attempting to help me and he began to hit her. He is not tolerating refusal at the moment. Typical of when he is on Depakote.

In fact, he just slapped the hell out of her...I wanted to stop him but she deserved it and I was giggling too hard, besides and I like to see him defending himself. And well, it's more like Big Brother, Little Sister to me. She deserves to be slapped..he slapped her.


August 22, 2010

>> Sunday, August 22, 2010

No events.

He has so much energy and is babbling more but it's hard to know if it's the Depakote or the Klonopin. I wish they would have done one a time instead of jumping into two. Still, it's a nice change from multiples a day. I'll take it.

Although my chin hurts from him grabbing it.


The update FB wouldn't let me post.

>> Saturday, August 14, 2010

Update on Bug. He is still seizing on the Pheno (although a lot less) and his EEG shows a little improvement (with moments of healthy looking waves) but not what they would like to see on a consistent level.  He will be getting another 10 of Pheno this afternoon and may be released home with a prescription for it. We will up his Lamictal and Keppra as well. He will be going on the Ketogenic diet too, also sacrificing chickens, using voodoo dolls and probably drinking the blood of a male platypus. 


August 12, 2010

>> Thursday, August 12, 2010

3 events.

2 large T/C and one Tonic. The first one last night was bad. It lasted almost 3 minutes and took him over an hour to recover. I gave him his meds and he slept next to me all night somewhat peacefully. My mistake was letting Tay sleep next to him. All night I was throwing her legs off of us and making her turn back around so she wasn't kicking him in the head. Bug and I slept in 1/3 of the bed and Tay took the other 2/3. It was ugly.

Just as the sun came up he had the 2nd T/C, not as long as the first but still as intense. An hour later her had the tonic that lasted less than a minute. He woke up enough for me to give him his morning meds and I realized he was congested. Breathing through his mouth, I though the pressure could be causing problems so I also gave him Ibuprofen. He is perky now and playing and smiling. It's good to see.

Last night, all he wanted to do was lay on me, occasionally he would play a little but he always came back to me to cuddle. I should have known by that he wasn't feeling well but...It passed me by.


Lost in ourselves

>> Wednesday, August 11, 2010

The last few weeks have been so insanely busy that I have been lax on a few things. Caught up in all the to-do's I had to do and none of the wants. One of those wants was catching up on the blogs I have been following. I went back today to go through them and found that I missed something pivotal and horrible.

I don't know the family, not at all, I read the blog because it's just one of those things that Mom's with kiddos that need special attention do to feel connected. Because there is an amazing chasm in the life of a Special Needs Mom. All those 'normal' things that kids do, even if she has another child with no challenges, become unsurmountable spaces of time limiting living. Reminders that your child is different. We have been trained to think different is bad, when in actuality, different is just different.

So, I read her blog, her blog about her daughter. And on July 25, 2010 their little girl breathed for the last time. I am devastated for them, and they will never know. I will cry on and off all day, for them and for me. It scares me to think i could ever write a post like that...but I have dreamed about it. Those nightmares where he is just no longer here. Her death, brought it back home.

I am so sorry for your loss, I have no words only respect.


August 11, 2010

No events.

Although he woke up scared because he pulled the covers over his head and couldn't get them off. It was kinda amusing. Does that make me cruel? I comforted him and he went right back to sleep.

When he woke up he climbed in bed next to me and he fell back asleep for another hour. He is the best cuddle Bug. :)


August 10, 2010

>> Tuesday, August 10, 2010

No events.

Which is a surprise since he is amazingly full of energy.

He is branching out on his own more and more. He is playing in his room with HIS toys, which is totally cool. But, man the house is a mess. He (and his sister) grab things and just drag them into another room, leaving it there for me to be mortified (and sometime angry) about.

He is back to turning on ALL the lights in the house. He did that when he was it got expensive in CA. Utah? Not so bad but still...argh.


The Week

>> Monday, August 9, 2010

Bug had a decent week. He had a few seizures here and there but a far cry better than 5 in the middle of the day.

He was restless a few nights ago, so restless in fact that we had to medicate him to get him to sleep. About 15 minutes are sleep he had one seizure and then the rest of the night was uneventful.

Now, we have used this medication before, and before any indignant Mom's start in let me explain: Seizures are worse when the person is too tired, or exhausted so sleep deprivation isn't just annoying it's life-threatening. He has had this medication in the past which mixed will work one night and then not work the other night. In the last 2 years we haven't had to use it much but he recovers from it just peachy. So, when he slept off and on all day the day after, I wondered what had happened. Sometimes, if he has a seizure and he seemingly fights it off, he will be sleepy or in a funk until he has another. So maybe that was it, or maybe something is changing again. Either way, it was a worrisome night and day.

He has been sleeping great since then though. Two nights and good zzzz's.

Now to wait for his ear surgery....


August 1, 2010

>> Sunday, August 1, 2010

No events.

In fact he has had kinda an easy time of it the last few days. He isn't hearing well though. I can call him, someone can make a loud noise and he has no reaction.

Still taking naps too. I find the naps the most curious thing. I wonder if it's the heat.

His medications can cause him to not sweat, not sure I like that at all but when we think back, we have never seen him sweat. Not even when he wasn't on medication. So we thought about it some more, because that's what one does when one has a child who can not communicate. We realized the ONLY time we have EVER seen him sweat at all was during a seizure. And only on the top of his head. But that stopped when he started having nightly events. Surely that must mean something.

His energy level is insane. But it is VERY obvious when his meds are depleted, he stopes smiling as much. In fact, it becomes difficult to coerce a smile. He has lost 8 pounds. Doesn't sound like much but when that's more than 10 percent of your is a lot. He has gotten taller though, by a few inches so I am trying not to be too concerned. Still, gonna keep an eye on it, a very close eye.


The Word

Sticks and stones...

We all know that saying, we have all taunted someone making fun of us with how much it DOESN'T affect us, by saying that. But it's very wrong. It should say:

Sticks and stones may break my bones but words will ALWAYS hurt me.

I get the idea. I really do: be so strong that physical pain is far worse than emotional pain. But when someone hits that soft spot, uses words that effect you to the very depth of your person, well, then, they will stay with you forever. That sentence will ring in your ears whenever you have a moment of self doubt.

But, words are just words. ONE word should not a feeling make. A string of words, a line of intent, that is what hurts.

I have heard insulting words all my life, I have tolerated some, belittled others and even been known to smack down the offender. However noble my intent, and my intent was indeed noble, it was a tad bit misguided.

I have always believed that ONE word is not offensive, it is how it is used. I see more and more people getting upset over ONE word. And a variety of them at that. The words are deemed offensive because we are told they should be, and people like feeling superior by telling others they are wrong to use it. That stance drives a wedge in the prospect of building a bridge, of creating understanding. It's off-putting to correct someone who is legitimately trying to understand and simply using the terms, or The Word, that they are familiar with. And when one looks at the 'offensive' words that are causing so much consternation, we find that only recently have they been deemed offensive. In the past they were simply used as an efficient means to convey a thought. Down and dirty it was. Now, they are just vulgar. But I wonder why?

I challenge you to look up the primal definition of any word that you are told should not be used. Look it up and try to see it outside of the context YOU have put it in. Look at the very heart of it, see it for what it was meant to be and not what we have corrupted it to be. Think for yourself. Don't be oversensitive, it will drive people away and confirm their worst beliefs. It's just ONE word.

Of course, if someone is trying to be mean, well then, make them cry. Anyway you know how.


What a Seizure looks like (Graphic Content Included)



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 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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