Wednesday, April 15, 2009

Hey...Do You Want a Bite of My Shit Sandwich?

It's really tasty, the one I'm munching on right now...want some?

I'm just having a shit day in the middle of a shit week in the middle of a shit month. What's that you say? Shit is a bad word? Well...NO SHIT. Hey...it ain't a family show here, and sometimes I just need to vent, so I'm gonna. Just realized it is Tax Filing Day too...so, it's probably a shitty day for a LOT of people in the Unites States of America.

No real updates people...yup, my son Bennett still seizes every day, and they are getting worse not better. AWESOME!!! I barely spend any time with my other son because I am in such a foul place mentally and by day's end I am pretty wiped out frankly. SWEET!!! I spend pretty much every evening after making dinner and clean-up just waiting for a seizure cluster to come so I can grab my pen and paper and make notations. I even have a nifty Excel spreadsheet to record his seizure activity now. Isn't that GRAND? WOOHOO!!!

Today is that 'presentation' of Bennett's case to a bunch of doctors and interns and residents and junk. Maybe that has me on edge too, I dunno. We've been trying to reach anybody involved over there at the hospital since Monday morning to let them know that his seizure activity is on the rise, not going down, and nobody has called us back.

So much for getting them that info BEFORE the fuckin' meeting. Nice goin' guys.

I can't STAND it when someone does not call me back in general if the MULTIPLE messages have any sense or statement of urgency but when it comes to my sick child? That is something that really makes me want to put my fist through somebody's rib cage Bruce Lee style and walk away with a still-beating heart in my hand.

Anyway...so...yeah...Mood? Foul.

I just need a win this week in one thing, and that will be enough.

It's only Wednesday, I got time.

Let’s close today's lovely romp through my septic thoughts with some beautiful photos of my sons...that always makes me feel better. Though I cannot get Carter to sit still for photos these days. He just hates it. Bennett? Total ham. He's gotten super chunky too, hasn't he? It's that ACTH...100,000 dollars and all Bennett got for it was five extra pounds and four empty bottles. Nice.


9 comments:

  1. In the book of Job, after he lost everything he owned, as well as some of his family, Job sat on the ground in sack-cloth and ashes and bemoaned his miserable life for several days. Three of his friends came along and sat with him the whole time. Consider me one of those guys sitting on the gound with you. (I'm not going to eat excriment though...that's just wrong.) Of course each of the friends, and his wife gave him the wrong advice (she said he should curse God and die, one said it must be his fault, the other two blamed this or that. Job said, and I paraphrase here: "All of you are wrong. This sucks ass but God is still God." The only thought that I have to offer is an ignorant question. Has anyone "told" you that you "have" to keep count? If so...do you have to count every time? Would an every other day count suffice to give a general "more or less" measure and the rest of the time, when he experiences a cluster, the family takes a time out, supports and loves on him extra, and then resumes family stuff? I appologize if I'm out of line and I clearly have never been where you are...but I hate to see you torn to shreds any more than you are already.

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  2. Yeah, you really need to count them all. Trend analysis is vital with these kids. Food, behavior, sleep, what time the meds were given prior to the cluster, stimuli, etc, all vital to determining and limiting the seizures.

    Hm, shit sandwiches. Where have I heard that before :D

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  3. shit indeed man...hope the meeting went well...let's get you that win!

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  4. If you are looking for another way to track the seizures or just to expand your current system, check out seizuretracker.com. It was designed by parents of a child with seizures. Though this website appeared after the worst of Austin's seizures and we never used it, it seems very well organized.

    Hope you've heard from the docs by now!

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  5. Oh man, I know all too well the no-call-back-crap! Six messages and two days later, NEVERMIND, I got under control now, thanks! Ridiculous, I know.
    But, on the upside, Bennett's as cute as he can be! And, honestly, he actually looks pretty small for being on ACTH!
    Hope today is looking up!
    Holli

    By the way, I kept track of clusters religiously...for at least 6 months. Then, we went from that to single head drops mostly. It was impossible to catch all of those. I made myself insane trying to watch his every single move. It tore me apart. I do think it's a good idea to keep up with the clusters though...and I still keep a mental note in my head now even though I don't have my handy notepad all the time.

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  6. Hold the sandwich please...but I totally want a bite of Bennett's belly!

    (((hugs)))

    ...danielle

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  7. Hang in there and don't be so hard on yourself. I think you've been handling things far better than most people given the incomprehensible situation. Taking time to hug your family members regularly can sometimes be the best and only thing you can do to improve the moment. Hope the meeting went okay.

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  8. Please look at the book Louder Than Words by Jenny McCarthy, your sons story seems very similar.
    God bless all of you.

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  9. Richard:
    Love that picture of you and Dora. And yeah, Marissa's Dad is right...as it is right now it is best to count them all. But I don't always have to be the one, that's for sure.

    Marissa's Dad:
    Trend analysis...good term.

    Stryder:
    I got the win, or at least told myself I did. :)

    JSmith:
    ST.com I have looked at, but not sure if I am going to start using it yet. It is a pretty cool tool though for SURE.

    Holli:
    You do what works best for you, and that's all you need to do. I'm really into stats anyway, so it is no big deal for me to keep the detailed records. The hardest part, as you know and all who have kids with IS or Epilepsy or anything else...WATCHING them go through it is the hardest part.

    Anonymous:
    No offense, but there are really only a couple of things that I would want to take a closer look at on Jenny McCarthy, and none of them are her books.

    I've read a ton of articles on the subject of her, autism, alternative therapies and everything under the sun I can get my hands on. Her claims just cannot be substantiated.

    Her journey as a mother living with a SN child? I can get behind that 100%. But her claims of 'curing' her son of autism with alternative therapy alone? Um, no.

    She has TONS of other very expensive, very out of reach for us simple folk things done as well, any one of which could be one of the things that improved her son's condition. She also blames vaccinations for her son's autism and I've read tons of scientific journals on that as well and am not convinced of that either. And this coming from me, a Dad who saw his own son have his first seizure the day after a 15-month DTaP immunization. But I do not believe the DTaP caused the seizure, I believe the fever from the vaccination started a chain of events that activated something that would have been activated soon anyway. He does have an FCD in his brain...I have seen it with my own eyes.

    Don't get me wrong, I do believe that diet and what we put in our bodies is definitely connected to our general health and well being and can have a positive outcome in some cases where medicine fails, but not enough to stop trying medicine for the time being and try any alternate therapies.

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