Showing posts from July, 2009

Need Some Help/Advice

OK, so you know Bennett has these seizures. While they are not like myoclonic-astatic seizures or atonic seizures, those which cause you to fall to the ground suddenly, these IS Clusters can and often do, and even more than they used to now, begin while Bennett is engaged in play, while walking around, doing anything a so-called 'normal' child might do.

But, when these clusters begin now, and he is standing, one of two things will happen. Either the seizures will be so severe he loses his balance and falls, OR he will slam his head into the nearest object, which is OK if the object is a soft pillow. However, if the scrapes across his nose bridge today tell us anything, its that these clusters have a better chance of causing him to bang his head repeatedly into HARD objects.

And usually the edge of a table, which sucks as you can imagine.

Now, unless you are watching every move he makes like a security camera with a tracking ball, you might not notice that he is about to have the…

Carter's Greatest (Online) Hits: Part 4

EDIT: Remember a couple of weeks ago when I was doing that whole BEST OF CARTER thing? Well, a tragedy that week sort of took me out of the mindset to continue doing it and I pulled the last two. But, since not having a blog going up regularly sends my OCD into a tailspin and since I have the stuff written already, here's the next one in that series.

I'm still a bit too weary, burdened and frankly just depressed to write any final re-cap on the Cleveland Clinic trip. At some point maybe. I do find it odd that I go into a major depression state the first 5 days or so back from any hospital or doctor visit. Severe depression, I'm talking about the kind where you question whether you really want to see the sun rise the next day when you go to sleep or you'd rather just slip away quietly in the night so the pain will stop. Don't worry...I'm at the tail end, only have a couple more days of feeling like Grade A a bit I can downgrade myself to Grade B Shit a…

We're Back...I Think

I am just plain tired.

It's been a long, long time since I felt this way. Maybe after a trip to Asia. But Asia never had me emotionally wiped like this, this is a double whammy of physical fatigue and mental exhaustion. Why is it that a Thu-Tue trip to anywhere BUT a hospital for one of my kids would not leave me this wiped out?

Anyway, just a quick note, we had the 3.5 hour Neuro-Psych eval today, then high-tailed it outta there. I hated it. It just showed me how seriously delayed Bennett is in a lot of cognitive areas. But waddya gonna do? We gotta know where we are before we can know where we're going and look back at where we've been.

Now it's just waiting until the case review on the 25th. Joy.

More later...gotta pick up the pieces, try to get re-situated to life, you know how that goes. Laundry, cleaning, prescriptions, work, etc.

I'll leave you with a very odd photo I snapped after Bennett got his leads off and was jumping around the hospital crib like a banshe…

Weekend at Cleveland Clinic Update 5: 07-27-09

It's Monday afternoon, and we should be arriving, right around this time, back at our house. We ain't.

We did get discharged today though. Bennett is no longer enduring EEG Hell. However, Bennett's 'review' and presentation of all his test results and evaluations and so on was, is, scheduled officially for August 25th (yeah I know FUCKING HELL I hate more MOTHERFUCKING waiting but more on that later).

One piece of the puzzle that they want to have completed, the last piece, is a Neuro-Psych Evaluation. Here, they do that before they do a surgical presentation. Don't do it everywhere, here they do. MAINLY because of his age, they say, they want to get a baseline study down of who he is and what he does before they go cutting away at his melon.

Soonest we can get an appointment for that? Mid September. Yeah, that's exactly what I said.

Anyway, we check out of the hotel, or Jen does after going there to shower (I stay in the hospital room with Bennett) and she ma…

Weekend at Cleveland Clinic Update 4: 07-26-09

Had rounds with Dr. Lachhwani this morning, fairly early. Damn I dig this dude. The only doctor in my entire history who has shaken my hand every single time he says goodbye. Something about that I admire.

Anyway, they aren't going to disconnect Bennett today, they are gonna leave the leads on and stay one more night. What he couldn't tell us is whether we would be discharged tomorrow or not. If they happen to be able to get some sort of Neuro-Psych eval scheduled for tomorrow, they're gonna keep us another day. If not, we leave tomorrow afternoon and come back for the Neuro-Psych later.

But I did tell him that I need the answer on that, whether we stay or go, by tonight, as I have to put things in motion. He was cool with that.

So, about the meeting. Bottom line is that according to all the EEG data Bennett's seizure activity isn't clear-cut single focus...but, that doesn't mean we aren't likely going to go down surgery road, because it looks like the odds f…

Weekend at Cleveland Clinic Update 3: 07-26-09

Well, we made it through the night. Jen got a good night's sleep back in the hotel, I hardly slept at all. But Bennett got some decent sleep in, so that's what counts. Now we are just waiting for today's rounds. Maybe happening in an hour or two, with any luck.

Can't believe I didn't freak out, but I actually did OK. It wasn't EASY, but it was not as bad as I thought. And I let all the nurses know was my first gentle with me.

Gonna try and find out today what the plan is as far as length of visit. I would like to have Bennett disconnected from the EEG leads today obviously, but if not I understand. Just want that for him. We'll see. But we gotta know, because we have to check out of the hotel on Monday and I want to know what to do about our stuff there and also what to do about getting back home, getting back to work, taking care of Carter, etc.

Miss him...a lot more than I expected I would. But I planned for that, and have my portab…

Weekend at Cleveland Clinic Update 2: 07-25-09

I am a total pussy when it comes to being on duty by myself in this hospital room. My claustrophobia kind of gets to me a bit, the blood pressure is probably very high and the anxiety is...well, let's just say I am crunching Xanax like they are M&M's. I'll need to talk to my doc when I get back about why I burned through this month's supply so fast.

I don't know why I feel such abject terror having Bennett in my care by myself. I think I must feel like I am going to do something bad, or stupid. I isn't usually an issue at the house, but hell it is a HUGE problem for me in a hospital room. In fact, so much so I've actually never done it alone before. Tonight...this is my first time. It's only 3:15 PM and already I feel like the walls are closing in.

Jen is back at the hotel, resting, she will be back this evening for a little while but she will be returning to the hotel to sleep overnight, and I will be here with Bennett.

Rounds n…

Weekend at Cleveland Clinic Update: 07-25-09

You know me...I will have diarrhea of the keyboard at some point as I recap the whole trip, but when you are sitting in the dark in a hospital room it is VERY hard to type a lot of stuff.

So I'll be brief.

First, thanks to all who sent well-wishes and comments, through here, e-mail, Facebook and all that.

To you guys who sent the goodies. Thanks. You really shouldn't have. You're both crazy! But we really appreciate it. We'll never consume all that stuff. You've made many nurses on this floor very happy.

Bennett was up most of the night, we are all pretty fried, but at least he has had 2 seizure clusters already, providing data...that's why we are here. MRI is done. Not sure if there will be any more tests in addition to the continued EEG, but we'll see.

That's it for now. Will update more as I can.

How's This for a Happy Nugget?

OK, so you know I'm freaking out about the Cleveland Clinic inpatient visit for Bennett, which starts tomorrow. We just finished packing the car and I am watching Bennett sleep and have the laptop out, so what the hell. Jen is on her way to the pharmacy for her SECOND anti-anxiety med. Wow, that's huge. I'm covered on all my meds for the trip, though I may be adding in Med #5, an anti-depressant I used to take, when I get back.

Anyway, so in case you missed it, Bennett has Occupational Therapy every Thursday morning. Last week, he seized ten minutes in. Wiped. Session over. Week prior? Sick. Couldn't go. Week before that? Seized five minutes in, monster set, the one Sinead calculated out at a per second thing, it was staggering. Session over.

I take him in today figuring that since he has a cold and has been seizing more intensely than I have ever seen in these nearly six months that it would be a total bust.


He had the session of his life.

Climbing, playing, laughin…


Totally didn't remember that I had this in a queue and the date must have been today. Woke up and signed in and saw this had gone live. Man, it certainly seems out of place this week, don't it? :)

Medicom is just pumping the Star Wars stuff out lately.

They recently put out the 10th (and I hope not the last) series of Star Wars Kubrick figures, based on Star Wars Episode III: Revenge of the Sith. Cool set. Got no secret figs in the two cases I bought. Bugger.

And absolutely, as expected, I did not get any of the chase figures in the new case of Boba Fett Kubrick figures I ordered. Yes, you heard me...Medicom released an ENTIRE wave dedicated to the galaxy's most famous bounty hunter. The set contains six versions of Boba Fett along with the aforementioned chase figures. Did I mention I don't have any of the chase figures? Yeah...

Here are the main six figures in the assortment.

Boba Fett as he appeared in the short cartoon that was the only semi-cool part of the great…

How Easily the Scales Tip

The scale tips so easily this week.

So I exit my upstairs home office and go downstairs, swing by the wife's home office on my way to the basement to put the finishing touches on a box being shipped to Asia this afternoon and to take some photos of a piece we're working on. She gives me The Report.

This is when she tells me what she has learned, via telephone, about how Bennett's day is going at his grandparents house, where he stays all day since we had to pull him from Day Care.

The Report today is that Bennett is having a terrible day. He is, for some reason, crying a lot. Tears down the face crying. Needs constant comforting, something is clearly wrong. They aren't sure why. For the first time in the entire history of his disorder...he started crying during a pretty monstrous seizure set that happened late in the morning.

Face got hot, ears got hot. Started to feel dizzy, couldn't breathe. Heart beating itself out of my chest. Eyes darting. Knees buckling. Trapped…

Artists Alley: Kenneth Lilly

Weren't expecting THAT one, were ya?

I'm tellin' you...this week I am feeling particularly freaky-edge-of-madness and I cannot really explain why. I KNOW that this coming weekend is not going to yield anything other than more waiting and more frustration, I know that it will be more of the same, more days of watching Bennett have gut-wrenching seizure after gut-wrenching seizure even after this weekend of tests.

Bennett has had MRI and EEG tests before, I know what to expect. I've been down this road with him, and we've been at this hospital before. AND yet...for a reason I can't explain, I am as anxious and as nervous and as weird as I HAVE EVER BEEN since all this shit went down in February. WHY? I don't know.

So, don't expect the usual. I ain't got it in me.

Where was I? Oh yeah...

I do these Artists Alley segments to try and introduce people to some new things that maybe they have not seen before, some nifty art. You see, I have always thought that p…