On Charity, Care and Ridiculous Ribbons

purple ribbonThis blog post might seem a little nasty. Nah. It will. You can skip over it if you like, but I’m really emotional right now, and I’m just going to roll with it.

I just spent a month watching friends of mine raise money for Children’s Miracle Network, which is great. It’s awesome, actually. I like CMN and think they do great work. I didn’t donate, mostly because I don’t have any money with which to do so. I felt targeted by every call for donation. Why aren’t YOU giving money, Sonja? Why don’t YOU care about the CMN? Why haven’t YOU reposted this petition for support? This was an annoying feeling, particularly because I knew that it wasn’t intended. It was imagined nagging; at least I’m fairly certain it was.
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A Sick Sick Policy

So, Kaeloo has had a high fever and cough all week. Between Monday and Wednesday, she wavered between 102° and 103.5°F. I tried my best to keep her cool with lukewarm baths and acetaminophen. Archoo showed his first signs or the same symptoms Thursday when he woke up with a scratchy throat, low-grade fever and large case of whining. I read up on when to call the doctor as far as temperatures and durations, so I ended up calling yesterday. I also kept both kids out of school. Kaeloo missed both Tuesday and Thursday, and Archoo missed Thursday and Friday.
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The Start of a Journey

Warning: This is a very LONG and very personal post. I was feeling drained by it before even typing the first letter.

Kaeloo and I are, at this very moment, starting a very difficult adventure. So difficult, in fact, that I wrote this post yesterday and am hoping that you read it while I’m out so there is maybe an hour of buffer between this release and when I have to read reactions. I’m not really ready to face this; it’s an uphill battle.

climb

As you may know from reading previous blog posts, my daughter is epileptic. From the age of two, she has had Grand Mal seizures, and we were told that her medication would make her very irritable. You can read more about this, if you like, here. Anyway, I mention it because Kaeloo is irritable. Very very very much so. She is prone to fits of anger, sometimes tantrums lasting literal hours long. She hits and kicks. She throws her body and self-inflicts pain, too. All of these things we wrote off as side effects of her medication, especially since she started it around the time when we expected her to just be terrible anyway. Continue reading

Piles of Paperwork

August has been a busy month!

Since my WGU degree plan was approved on July 8th, I have knocked out all 14 credits and moved 10 credits from next semester into the one in which I’m currently enrolled. Two of my classes were objective assessments, multiple-choice tests, and I knocked them out early. The three remaining classes required performance assessments. Performance assessments are designed to get a good look at how well you understand the content. In the case of these classes, I had to write four essay assignments and do a thesis research outline and oral (video recorded) presentation. Combined, I wrote 6957 words for those projects. I think that’s enough paperwork for now on the school front for now. I’m settling in for a nice easy review of contract law and more legal business stuff followed by a six-week consortium for my science class. That will put me at 24 credits completed with 11 weeks still left in my semester. I should be able to knock out Principles of Management for an additional four credits before the end of the year.

Can you possibly shake your stick at 28 credits for the price of $3035? I know my community college can’t. I feel like I pretty much never shut up about my schooling, so I’ll make an attempt to do so now. Continue reading

July … Epilepsy Relapse

Hi. I was doing really good blogging last month, but this one is going very oddly, and I haven’t been able to bring myself to sit here and pound out an essay about my happenings.

Don’t get me wrong, it’s not been all bad. I’ve had some amazing adventures, met some long-time Internet friends face-to-face for the first time, taken the kids to several amusement parks and made great progress toward finishing three classes in the next three weeks at Western Governors University. I’ve cooked and cleaned, laughed and cried, plotted and planned, and been overwhelmed, underwhelmed and not particularly whelmed at all in intervals.

But the most frustrating and impacting event this month was that Kaeloo had another seizure. Man, I don’t know if you have ever known someone that is epileptic, but it is crazy scary. Every now and then, my dad tells the story of the first time I had a seizure. He was a flight medic in the US Army, and when he found me seizing, still in uniform, he just stood there holding me, dumbfounded. He literally had no idea what to do. All of his training just completely fled his mind as he stood there watching me convulse and my lips turn blue with Grand Mal seizures. The first time Kaeloo had a seizure, on March 9, 2012, it was oddly similar to this. The Murse had just gotten home from work and fallen asleep after a 12-hour night shift. I had walked out of the living room for one of hundreds of reasons that I might have done so, and returned to find her face down, covered in her own vomit, twitching violently, lips purpling before my eyes. I scooped her up, marched her into my bedroom, and woke the Murse up. He stood there with her in his arms, looking much like my father must have — equally paralyzed. We live very close to the hospital, so we drove her ourselves rather than calling for the ambulance.

hospital

march 29, 2012

She didn’t have a fever, she didn’t have any trauma, and there was nothing indicated on the CT scan they gave Kaeloo in the emergency room. As scary as that all is, after one seizure, nothing really happens. She was sent home soon after the event, and we were scheduled to see her pediatrician and to have a one-hour EEG done. The results of the test showed nothing, and it was written off as a fluke. Boy, what I wouldn’t give …. A second seizure, on March 29th, happened while the kids were in the bathtub together. Archoo thought it was hysterical that his sister ended up face first in the tub. I was frustrated, but I really thought it was better that he not be scared by it. I asked him not to laugh, and had to warn him a few times in the following weeks that I didn’t find his purposeful twitching amusing. The boy was 4: I mean, he didn’t get it, but I was really, irrationally, hurt by his oblivion. This time, the Murse was still at work, so I called the ambulance (we only had one car then). I was really frazzled, holding this twitching child in my arms in a towel, and attempting to tell Archoo how to dry himself off by himself like a big boy so that he could be ready to go. By the time the EMTs got there, the Murse was home. He rode with Kaeloo to the hospital, again, still in uniform, and Archoo and I took the car and some clothes for the little lady, following a few minutes behind.

24eeg

a 24-hour EEG turban

The second seizure sent us into a dizzying spiral of tests and appointments, all of which had to be conducted in Philadelphia because the local hospital isn’t equipped for pediatric neurology. And then we had this dizzying choice to make about her medications. When I was a kid, I had two seizures. They called it pediatric epilepsy, and I was given phenobarbital for two years and then weened off, never experiencing another episode in my life. Now, it’s not common practice to give barbiturates to children as a first-string option. We also weren’t thrilled with the idea of giving her addictive benzos or drugs that processed through her liver. We chose levetiracetam, or Keppra, which is processed through the kidneys and is safer for her body. But it doesn’t have the same sedative effects as other options, and the doctor warned us at the time that she could experience changes in mood that would make her mean and generally angry.

She was doing some “terrible two” nonsense when this all started, and we were kind of like “yeah, how much worse could she possibly be?” But I’m positive that the Keppra is having the effect about which the neurologist warned. She’s a screamer, typically opting for shrill shrieks, slaps, hair pulling and kicking instead of words when she wants or needs something. And holy cow — she has a set of lungs. It’s difficult. Wherever we go, the Murse and I are the parents with the screaming, rude child. . . Despite the fact that Kaeloo has been diagnosed with epilepsy and that she takes mood-altering medicine, she is just generally seen as a problem, and we face dirty looks and rude remarks, essentially because we’re not comfortable doping her up and destroying her liver just for the niceties of peace and quiet [believe me, it’s tempting].

The seizure on the 5th was her 5th. Every time she has one, they up her dosage, and she goes longer without an episode. But she has to be completely seizure free for two years before they ween her. I’m beginning to doubt that Keppra will be effective in the long term, so we’re going to discuss some other options with our doctor next month during her appointment. I’ve been stressing about it every day because there just isn’t an easy answer, and there’s no guarantee that any of them will completely eliminate the seizures as it did for me. She could have to take meds her whole life to suppress them . . . and I really don’t want to think about that. Maintaining hope that this is just the same childhood epilepsy that many kids have and grow out of gets harder every time she has an episode, though.

Nearly 500 cases of epilepsy are diagnosed across all ages daily, as opposed to 136 cases of Parkinson’s. Yet, here are the bare facts:

image courtesy of : CURE Epilepsy

image courtesy of : CURE Epilepsy

As another friend of mine Southern, Geeky, Gamer Belle, stated, “One thing I learned from my seizures is that epilepsy is a silent disease. Because you are fine on the outside it is your brain that has the issue, few people are really willing to talk about it let alone truly support it.” That’s pretty much true, and it’s terrible. There’s been very little progress since I had seizures almost three decades ago. We’re no closer to understanding the exact causes, and we’re no closer to the cure. Awareness is low and understanding even worse. . . . Sad all the way around.