The Status

>> Sunday, March 20, 2011

We have been in the hospital with Bug for six days. Six long days, almost all of which he has slept through.

He was still acting odd on Monday and I told Glenn he had to go to the ER, that he was in Status again. So we went and he was. Damn it.

They first tried to give him Ativan without an EEG. I said: try again. Get the EEG first. They agreed and that's how we found out he was in Status. Thanks Mom for being so aggressive.

So, they gave him Ativan, and he got sleepy but still was in Status. So another round of Ativan and he was awake and smiling. Still in Status but happier. Queue Depakote in higher dosages and he slept.

I was told it was NOT the Depakote making him sleepy. That it was the seizures. Uh huh. He wasnt this sleepy before we calmed his brain down.

Then they gave him pheno, and then another pheno and he came out of status. But he did not wake up.

And I let them do what they wanted to do until they deviated from the agreed upon plan. Then, we had a talk. The thing is this: with Bug, no one else knows more than I do at this point in time. He has no diagnosis, he has an abnormal EEG and is on some pretty strong meds. But who knows what else may be going on other than seizures? But, they see only the seizures. And I understand that, I live with the T/C's, thanks, I get it. But what they don't know is how happy this child is and if they take that away from us, well, it won't be pretty.

Kris called a few days ago and told me that she received a call asking her to confirm or deny her appointment on Tuesday, with Dr. Filloux. We reasoned that if I called the next morning I might be able to secure an earlier appointment since someone may have canceled that night. Sure enough, I called, and he got an appointment for March 30th. Hoorah! 5 weeks earlier. I am so excited.

Now if he will just wake up.

Mostly, I want him to wake up.


We got Myoclonics wholesale!

>> Thursday, March 10, 2011

What a crappy 24 hours. Poor Bug is just having a lot of myoclonic issues. I keep thinking I will video them so people can understand or so the Doctor can see what he has been doing but I can't bring myself to pick up the camera.

He had two T/C's and myoclonics too numerous to count. His meds seem to help for a few hours but then he goes right back at it. He is eating now though, and watching TV and dancing so he must not feel too horrible.

I have been so worried about him all day but he isn't. He will lay down for a little bit and then jump back up and play. He really is my hero. Nothing stops him. I just adore the boy.


A big deal at our house

>> Tuesday, March 8, 2011

Taylor had cheese pizza for lunch. She had some left over and we kept it for Bug. He had the pizza and I gave him a bit of Cheese Chex Mix. Apparently I didn't give him enough because he got out of his chair, walked over to the cupboard and motioned for the bag. I got the bag down, showed him what was in it, he reached into the bag, grabbed a handful AND...

Took it back to his seat and put it on his plate.

THIS is a really big deal. I am thrilled. Way to go Bug.


The Bane of Beauty

Bug is beautiful. He really is a very pretty child and people comment on it. We agree, he is lovely. The problem is that he also has intense seizures and severe cognitive delays. But he is beautiful.

I have said it before and I will say it again: his beauty is a hindrance. People, including Doctors, see him and read his story and meet him and shrug it off. They shrug off the issues he has and they see his smile and his big blue eyes. They read the words but they insert their own version of reality. Even other special needs Moms talk to him like he should be answering them. They say things like: you know what I am saying, don't you? And they smile at him. Of course, he smiles back, but that does NOT mean he understood. I have been told that I just need to be consistent. Wow. Why didn't I think of that? Just be consistent. That eluded me.

And how much more consistent do I need to be when he sneaks into the closet to play with his feces? That is deception, and it is a sign of intelligence HOWEVER, the lack of 'ick' denotes a temporal lobe issue. The inability to tell good from bad, ick from awww, that's executive function, and that has not fully developed in him. He hasn't played with his feces in over a year so we hope he is done with that and his temporal lobe is developing nicely, but really, at any point, he could start up again. And THAT has NOTHING to do with bad parenting.

No, our society has equated beauty to perfection. And those two words are extremely dangerous things to put together. Bug is beautiful, but he is not perfect, and we do our best to help him and to teach him. He DOES have fairly severe problems, even people with Epilepsy say he has it badly and he does, but we can't think of it like that. He is a happy child and he does not always understand what is going on. But he does know that we love him and that we will try to protect him while letting him grow his independence. If one more woman says: Oh he knows. They will get an earful. And I will let THEM spend 24 x 7 with him. They wouldn't last a day alone with him. So, back off the judgments, he's my child and I know him better than you do. You can't say: God gave him you for a reason and then question how I raise him. Apparently, God trusted me, you should, unless you know better.


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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