He sleeps with Prince Valium

>> Monday, September 17, 2012

Yep, a whole year passed before we had to break out the Diastat. I was supposed to do that damn Versed but the Diastat is tried and true. And then there is that whole tooth thing. They gave him the Midazolam (Versed) to knock him out to fix his teeth and when he awoke, he seized off and on for hours. At the time he was going 2 to 3 days between seizures. So it really sucked. He hasn't gone more than 36 hours since then and then..there was today.

I don't feel like detailing it. I want to slap, bite, scream and punch. But mostly, I want to curl up next to my handsome Prince, cry and fall asleep holding him.

He missed his 2pm medication.

I have had to go down there everyday since he started school and deliver it to him because Primary Children's Neurology Department has NOT been returning their phone calls. Oh I got a message ONCE and when I called back...NADA for 3 and a half WEEKS. Today, I ran out at 10:00am to get him some diapers for school, they were out. I did the shopping and dropped them off, said hi to the staff, let Ava make them happier (another warrior lost their battle over the weekend) and then headed toward Daddy's work to have lunch.

I hit the Home Depot with plenty of time to get back to get his meds. I priced out what I needed and took Ava to wait for Daddy to be free. At 12:35 we had lunch. At 1:00 Google reminded me about my 1:00 meeting at Bug's school. You know, the reminder that was set for 20 minutes BEFORE the meeting. Ya, Google is starting to compete with Facebook on incompetence of simple things. So, I rushed back to his school. Meeting got over about 2:00 and I left at 2:10 to get his meds, so a few minutes late ins't a big deal. But...because of the !@#$ing construction on EVERY road from his school to our house I got HOME at 2:25. Not enough time before he got on the bus. It's early out today and he leaves the school at 2:30. Shit.

He has missed his 2pm meds before, and nothing happened, but not today. At 3:40 he got home and I put the meds on the counter to give them to him. Then I realized I had to pick up Tay and get her to her Drama class. So I loaded the little monkeys into the car and promptly left the meds on the counter. By the time I realized it, it was too late.

I dropped Tay off and on the way to get him some burgers and to pick up the meds, he seized. Big time. He didn't just go blue...no, not this time, this time he went white and his gums were blue. THIS is a big freaking deal. So I swore. A lot. I swore a lot and I went to get the food and then go get his meds. We waited almost 20 minutes in line at Burger King. And when I got the food, he had another. Shit. Again.

I found some Lamictal in my bag and gave it to him. It wasn't enough. After I picked up Tay, we went home and I gave him his meds. Ava was hungry so I fed her. While feeding her, he had another. It was less intense as the others so I thought his meds were kicking in.


In our house, when he has a fourth in an hour we give him rescue meds. When he had his fourth it had been about an hour and half since the first one but that was close enough. I did the deed, that horribly cruel and oh so necessary deed and waited for him to drift to sleep. It took a long time, almost 30 minutes. But he is asleep now, and I watch his chest rise and fall and I wonder: Why? Why has he been having one a day, two on bad days for almost 3 weeks and then...this. What changed? Luckily I have an appt with Dr. Fantastic on Wednesday to discuss his FRa treatment. Hopefully it will help.

Sadly for you, I filmed the end of his third one. I needed to. I have been feeling like our plight, our boy with Epilepsy, and the Epilepsy itself has been phenomenally ignored and I can't let that happen. People have to know how horrible it is and how heroic the people are that do not give in to it, that keep getting up, that have scar upon scar from their falls and yet...they still wear bikini's. It's important for those you do NOT know what it is like to watch their loved one seize 4 times in an hour and half period, you need to know what it is like. Because maybe then, you will want to help make it stop!

I am sorry but you need to see.

I love you my little prince. And we will win this. I promise.


Sick Bug

>> Tuesday, September 4, 2012

Poor little Monkey Man is sick again. It happens when school is first in. At least I know it wasn't HIM that got the other kids in class sick. Small consolation.

He hasn't been seizing much. In three days, only minor events. And no real discernable fever either. Since his ear tubes have fallen out I worry about those darn ear infections coming back, but there is no rubbing or tugging and, like I said, no fever. But his cough sounds like it hurts. And that does not make Mama Monkey happy. Still, he is smiling and somewhat happy and eating, although not as much, he is still eating and drinking so that's something.

Nothing new to report on the talking front, but he is being VERY sweet to his littlest sister. I think he may actually like her now. She laughs at him and his spinning and he seems pleased with it. Fingers crossed.

Have I mentioned, I LOVE the camera system? That's him, right there on the left. Sleeping. Next to Taylor. Her bed is is being occupied at the moment, and even when it's not, you find her there. When we force her. My angels. Thank God they are asleep.


What a Seizure looks like (Graphic Content Included)


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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