Friday, February 26, 2010

Burnout

Now, call me crazy, but I believe, as strongly as I have ever believed in anything, that if you pay $3,500.00 for this...


...as we did 3 years ago, then I believe that you should not be in a position to have to repair or replace something on the item. EVER.

But that's just me. I think 3.5K is a ton of scratch for a TV. But we were doing well at the time, and we splurged. I mean, once we got a taste of what HD was at this size? Well, the ladies will certainly understand what I mean when I say it is very difficult to go back to something smaller.

And yet, here I sit, blogging as I wait for the clock to hit 10:00 AM, so that I can start calling local stores in an effort to find this:


Yes, this little baby, the projection lamp, burned out last night, and now this very expensive TV is just a very expensive corner decoration. And I gotta go find one and replace it.

And they are NOT cheap, these little XL-5100 lamps. Not cheap at all.

Of course, Mr. Double-Edged Sword has something to point out. It is an expensive thing that we really can't afford to get right now because of my recent enrollment into the ranks of the unemployed, and yet because I am unemployed I have plenty of time to hunt one of these lamps down and get the TV back up much more quickly than I would any other time.

Irony? Fuck off.

But here's the crazy thing. A freaky coincidence that will be viewed by some of you (*cough* Mr. Richard Hickam *cough*) as Divine Intervention, like God coming down and stopping the bullets from killing Vincent and Jules in Pulp Fiction.


Crystal, the woman who comes to our house 5 times a week to help with Bennett (yet another awesome thing about living in this county in Ohio...that is provided by the local government) asked a few days ago about what Carter was like at the age of 2.3 months, the age that Bennett is right now.

I was hesitant at first, and avoided showing her anything like a home movie of Carter at that age because I knew how it would affect me. But for some reason last night I felt particularly strong and got out some of the DVD's and put one in for her to see.

About 5 minutes in, I started to feel horrible. I started to get very upset about the differences I saw in Carter and in Bennett. It was a contrast I was not prepared for...no wonder I was avoiding it. I was about to lose it.







Then 'POP'! TV goes out.

Instantly I went from Probable Emotional Mess to Mr. Fix-It Mode and started investigating the problems and reading the manual. Ultimately I determined the issue and figured out how to solve it.

Breakdown averted by Burnout.

Wacky.

OUT...

Wednesday, February 24, 2010

Oh I Love Trash...


Anything dirty or dingy or dusty.
Anything ragged or rotten or rusty.
Yeah, I love trash!

I got me a sneaker that's tattered and worn.
It's all full of holes and the laces are torn.
A gift from my mama the day I was born.
I love it because it's trash!


...and so on and so forth. This is the song my son Bennett would be singing.

If he could sing.

Or talk.

Yesterday was a day like any other. Pretty much all days go down the same, yeah? I mean, day in, day out sort of thing. Routine is the norm. Imagine my surprise when I walk in the kitchen yesterday to see Bennett PULLING FOOD OUT OF THE FREAKING TRASH CAN AND CONSUMING IT.

Now, granted, I'm impressed that he has figured out how to open the lid. That in and of itself is super. I also got used to him beating on the silver top like a steel drum, and this trash can makes a helluva loud, reverberating sound when thwacked with human flesh. Over.

And over.

And over.

But like I said...got used to it. Sort of became a kind of background noise. Like the fan I use to sleep more soundly. But graduating from beating the can to death to wolfing down the disgusting contents of its interior?

Um...no.

So, my question is for ALL the Special Circumstances parents who happen to come here from time to time, and anybody else for that matter who might have an unusually smart dog. Is there a Child Safety trash can or other sort of thing I can get to keep him from using it as a feeding station? Aside from moving the trash can into a closet or something. This I can think of on my own.

Suggestions are welcome. And just so you know, the current style of trash receptacle we use in the kitchen looks like this.


Well, that's a pic of a new one.

Ours is covered in very small handprints.

OUT..

Tuesday, February 23, 2010

2009 Questions and Answers


How'zit goin?

I found this over at Katy's blog called Bird on the Street a LONG time ago, but never got around to actually answering the questions in 2009, but I have some time today and am looking for subjects, so I figured what the hell. It was in my blog drafts, so I figured I'd finish it and post it.

Been struggling of late to come up with blog material that I think people might actually find interesting that does not involve the latest frustrations over Bennett's situation, and this'll do for now.

1. What did you do in 2009 that you'd never done before?
Watched a human being recover from brain surgery.

2. Did you keep your New Year's resolutions and will you make more for next year?
I made none at all. I was shell-shocked when 2010 began, and wasn't in a resolutiony mood. But do I need to set some goals? Hell yes. In fact, I found an old Goal Sheet that I want to share at some point that I must have written 20 years ago. It's interesting.

3. Did anyone close to you give birth?
A cousin.

4. Did someone close to you die?
A friend's pet did. When I was around that dog I always loved him.

5. What countries did you visit?
Detroit is SORT OF like another country.

6. What would you like to have in 2010 that you didn't have in 2009?
The ability to be positive.

7. What dates from 2009 will be etched in your memory and why?
February 12th, August 27th and December 22nd. Will never forget them.

8. What was your biggest achievement of this year?
Working on NFL merchandise.

9. What was your biggest failure?
Working on NFL merchandise.

10. Did you suffer illness of injury?
My PTSD, Depression and Anxiety all came back with a vengeance. Worst ever. But ironically, I did not really get super sick all year. Maybe one small cold.

11. What was the best thing you bought?
Laptop computer. Changed everything for me.

12. Who's behavior merited celebration?
Every single human being that is watching their kid suffer that I met either online, spoke with on the phone or met in person in 2009. Each of these unique, wonderful people are inspiration to me every single day.

13. Whose behavior made you appalled and depressed?
There was one guy in 2009 I had major problems with. Ain't gonna name names, but holy shit what a nightmare. I found his behavior to be despicable.

14. Where did most of your money go?
Hotels in Cleveland, Medical stuff, gasoline for the many road trips to Cleveland, Detroit and such, and toys for the boys.

15. What did you get really, really excited about?
It was hard to get really excited after February 12th. Really hard. I guess if I had to pick it was reading some of the blogs of kids in recovery after their seizures had stopped and stuff. Those things always excited me. Season finale of LOST in early 2009 was a close second.

16. What song will always remind you of 2009?
Not a song, but a piece of music from LOST. For some reason, it resonated with me this past year.

17. Compared to this time last year, are you skinnier or fatter? richer or poorer? happier or sadder?
I am fatter, poorer and sadder than this time last year. This time last year we were RIGHT on the opening page of the Bennett thing. If I was answering this after March 5th, the answer would be happier.

18. What do you wish you'd done more of?
Gone to Baltimore more. The one trip I took was fantastic. Seeing old friends and the old town was a highlight of the year. I really miss being there.

19. What do you wish you'd done less of?
Crying.

20. How did you spend Christmas?
We had multiple Christmas celebrations, all of which were a bit blah to me. I was really in a funk at that time.

21. Did you fall in love with 2009?
No.

22. What was your favorite TV program?
LOST.

23. What was the best book you read?
A Shot in the Dark.

24. What was your greatest musical discovery?
The Bose iPod Speaker Dock. Wow. What a difference it makes listening to music.

26. What did you want and get?
Seizure freedom for my son.

27. What did you want and not get?
A total and complete recovery for my son with all his abilities back after the surgery. Hey...the question didn't say 'BE REALISTIC'.

28. What was your favorite film of 2009?
Sherlock Holmes. District 9 is a close 2nd.

29. What did you do on your birthday and how old were you?
I did nothing. I turned 42.

30. What one thing would have improved your year immeasurably?
To have had a few more things go our way with the MVP stuff. Like many other aspects of 2009 for me, this process also got WAY bogged down by lots of factors.

31. How would you describe your personal fashion concept of 2009?
I have no fashion concept. In any year.

32. What kept you sane?
Blogging and medication.

33. What political issue stirred you the most?
NO idea. My world was very personal and inwardly focused in 2009. Could not really tell you any big thing I remember politically from 2009..

34. Who did you miss?
My Mother.

35. Who was the best new person you met?
Physically met, as in face-to-face? Elaine Coleman.

36. Tell us a valuable life lesson you learned in 2009.
I can survive anything. It may not be easy, I may be irreversibly altered, but I can survive any tragedy that befalls me. Well, except my own death I suppose.

37. Quote a song lyric that sums up your year.
I get by with a little help from my friends.

Hmmm...why 37 questions? That's weird. And...did you notice there was no number 25? I might have copied the thing wrong back when I did it, but I don't have the energy to go searching for Katy's original post. BUT...my OCD will not permit this glaring omission. So I am adding a 25th question.

25. Who were you the most grateful for having in your life in 2009?
Easy. Mike Horn. Had my back every minute of every day, and I never doubted it. It was actually great to have more regular contact like the old days. One of the other highlights in 2009.

OK, that's it for today. In the words of Brady Quinn...'Now I'm done.'

OUT...


Monday, February 22, 2010

An Unusual Change of Pace


For the last couple of weeks, when Bennett needed to be taken to his new school (it's called Step By Step Academy, by the way), I would do the driving. I'd make a right on the first main road to go in the opposite direction and get Carter to his pre-school, then I'd turn around and head in the other direction to head to SBSA (what I will call Bennett's school from here on out).

All in all? I was spending around 3 hours in the car/loading and unloading kids.

Now keep in mind something you might not be aware of. Very late last year I was temporarily laid off. Not sure when I will be back to work if at all, though the plan is that I will be at some point. That's something I haven't blogged about yet, and I will certainly go into more detail on a future post, but at least for the immediate time being I am unemployed. Again.

So I didn't mind the driving, it was cool with me, and it certainly was less of a burden on Jennifer.


But it's a lot of gasoline, which ain't cheap, and while I can make some money doing some freelance and eBay to keep us afloat for awhile (though I may be going into the unemployment office as well), Jennifer decided that rather than work from home (like she has been doing for the last couple of years) she would go back to her office.

Why?

Because SBSA is actually on the way to her office. So instead of me driving a double commute (drive-out/drive-back then drive-out/drive-back) she will be doing a single commute and handling kid transport.

My role now changes to still get up in the A.M., but instead I now do what she was doing...get the kids dressed and fed and ready for the day. That all started today, and went off without much of a hitch.

But now?

Wow, the house is so eerie. So quiet.


It has been a LONG time since I have been in the house alone during the day. Jen and I were both working from home and even though we didn't hang out all day we would bump into each other, sometimes have lunch together and so on.

But now it's back to just me.

Feels weird. I'll get used to it certainly, but for now anyway, it's just strange.

Anyway, that's the news from Lillyville. Bennett hasn't progressed a TON since starting SBSA only because he hasn't been there all that much lately. Last week he was there ONE day. Monday was a holiday. Tuesday we got hit with snow and they were closed. Two days he had rhea that made his butt so sore and red that he screamed as if we were torturing him when we changed his diaper.


The other day left in that week he was at SBSA.

He is repeating a bit more often now though. I can say 'Dee-Dee' or 'Ma-Ma' and 6-7 out of 10 times he will repeat it. No 'Da-Da' in there at all yet. I do miss him saying it, but I'll take 'Dee-Dee' for now.

OUT...

Thursday, February 18, 2010

Photos from Fecal Park

Just of my kids though. Not of any residuals.

Jen's cousin Angie took a bunch of pics of everybody and everything at the Water Park mentioned in yesterday's somewhat embarrassingly filthy (even for me) blog.

In case you don't know who Angie is, though I have mentioned her a few times in the past, she is the red-headed cousin of Jennifer who originally sold us the house we live in today. I gave her a Phoenix action figure this past Christmas because she once told me in passing that one of her goals in life is to get a cool-looking Phoenix costume for Halloween.

Can't argue with that. Phoenix is an all-time fave.


Anyway, that's her (Angie not Phoenix...well, the TOY is Phoenix), and here are the pictures that I essentially stole from her Facebook page.







Cause that's how I roll.

OUT...

Wednesday, February 17, 2010

Fecal Park


OK, now admittedly I have some issues.

One is thinking a bit too much about things that skeeve me out.

This past weekend, Jen took the boys to a sort of Hotel/Water Park combo place, somewhere near Mansfield, OH. I think it was called Splash Harbor or something...lemme Google it. Yeah...that is the place.

Now, I won't go anywhere near a public pool, but far be it from me to prevent my kids from going if Jen is into the idea of taking them.

Me? All I can think about is all the shit and snot and skin and pee that is floating around in that water. Totally gives me the heebie-jeebies.


Now you're saying...C'mon man, I can understand the pee thing, but actual shit? And the chlorine kills all that stuff anyway.

Not buying it.

First off, not every adult is going in to that water freshly showered. Now, you know how pissed you get when you have to drop a deuce AFTER you have already taken your shower for the day? Why's that? Because no matter how hard you wipe back there you are always going to have...well...let's just call them residuals.

Those residuals aren't coming off until that day's Shower #2 or the next day.


Here's some food for thought. Let's say you had plans to, I dunno...be intimate with your significant other, and you'd pooped earlier that day.

Be honest with yourself.

You gonna shower first or just go for it? I'm guessing 9 out of 10 of you would say 'Shower, of course.' And to any of those that said 'Go for it!'? I GUARANTEE that not everything is going to be on the menu as far as those things we sometimes do before the main course begins, if you catch my drift.

Why?

RESIDUALS.

And that's what's floating around in those public pools.

Person has residuals. Person is generally clean but you can't hide from residuals. Person goes into water in bathing suit. At some point person is in position where perhaps cheeks are a bit more open than most times of the day.

Residuals escape.


And that's just the adults. What about the kids who, um...just let it go in their 'swimmers' cause that's what they are used to?

End of story.

So anyway...I won't go near a public pool. But Bennett and Carter and a bunch of his family did this past weekend. Hope they had fun.

And yet...can you BLAME me for thinking that this wet adventure is what has caused Bennett to have godawful rhea for two days?


Nope. You can't blame me at all. I mean...even if the water was poop and pee free, the boy doesn't know any better and kept drinking the freaking chemically enriched fluid.

OUT...


Friday, February 12, 2010

One Year


On February 12, 2009, Bennett had his first set of seizures.

Happened around 7-ish or so in the evening. Very slight. Hardly noticeable. Watching him have them for the first time was almost comical...I thought he was just playing some kind of game, doing some kind of 'kid thing'.

Turned out he wasn't.

It's been exactly one year.

What a year.

It feels like ten.

I think I have some things I want to say about it...I think I do.

Not sure.

I wanted to at least acknowledge the date, I feel compelled to do so, kind of a thing where I feel to NOT acknowledge it is something that doesn't honor my son. But I can't gather my thoughts or pierce through my emotions today to write something clever or witty or insightful about reaching the one year mark.

It's powerful. More powerful than I thought it would be, despite the fact that it is a day like any other day, and nothing is really different today than it was yesterday or will be tomorrow.

And yet it affects me in ways I can't even put into words.

That's some funky shit.

Since my own mind is too jacked up, I'll just quote a great Eastern philosopher, a very wise, very respected individual in his day, and leave it at that.

For now.

A journey of a thousand miles begins with a single step.

Lao-Tzu
(604 BC - 531 BC)


OUT...

Saturday, February 6, 2010

Don't Hold the Applause


So you had a few days of some chewy, moist and delicious updates and then whoosh...gone for a day or two. That typically happens after one of these hospital visits. They are tiring. They are long and draining. The day you get back you are a bit spent, and in many cases mopping up loose ends that were left undone prior to the departure from your home.

Sometimes it takes a few days to get back on track.

And anyway...sorry for the delay in the Big Recap. I understand some people were very concerned, because when it comes to me and no blogging, many times the lack of blogs goes hand in hand with me fighting the bad stuff.

So...how'd the trip go? Overall very well.

Bennett's MRI currently does not show any re-growth of tumor cells, that's very good. He will have another MRI in 3 months. The Oncology team noted something strange in the right hand side of his brain, some kind of malformations in and around the temporal lobe.


Now, I am gonna worry about that for a while...even though the surgeon after he reviewed it said 'You just can't get worked up over that right now...they read it a little too closely down there...I don't see anything in the MRI or in Bennett that leads me to believe there is a problem there.'

And I trust the guy, despite his Steelers affiliations.

So I will try to keep that out of my mind for now, and worry about it only if some kind of problem arises from there. Though I wonder if those malformations are in any way connected to his lack of communication. Only time will tell really.


It's funny...both the surgeon and the epileptologist feel the communication will come, so much so they just sort of shrug off my statements of worry and say 'It'll come.' And I don't mean they blow me off, or don't give my concerns their proper due...they just are trying to show me by example how I should worry a bit less than I do.

But man...do I worry about shit.

But as my wife pointed out on the ride home, I have issues. She said it in a very supportive way, it was her way of saying 'Look, you had problems BEFORE the birth of Carter [source of first anxiety attacks]
, BEFORE this happened with Bennett. You had a rough life, you need therapy, you need help.
'

I don't argue with that at all.

As for the EEG that Bennett had, no seizure activity was seen. The final report mentioned some sort of slowing or something, but that was attributed to the areas of the brain that were simply not there any more. But there were no spikes, no hypsarrhythmia, no funky readouts. It was not interpreted as a grossly abnormal EEG.

How 'bout that? That is...hm, lemme think. Well...even Mr. Negativity here can't NOT see what a huge thing that is and how utterly super cool.


And I am. It's great.

So...are we 'out of the woods' on the possible return of the tumor? No, but Step 1 went well. Are we 'out of the woods' on the seizure puzzle? No, but Step 1 is going well, we aren't changing any of his meds and as long as that 'other area' doesn't do something funky, I don't see any reason why his seizures would return spontaneously unless the tumor comes back or the scar tissue gets really wacky, which the MRI suggests is minimal.

And of course, we are far from 'out of the woods' on figuring out how to help him make the most of who he is and figuring out who he is and what his capabilities are. That's the journey when you really just condense it.


As far as that goes, as of Monday Bennett will be starting ABA Therapy for 35 hours a week. Full time. He will be attending an Autism school, and I am hopeful that the one on one situation will be just what he needs. I will be his chauffeur. 2.5 hours in the car for me a day and everything else we have to do to make this work are SMALL prices to pay for this school. It could be a HUGE difference maker for him.

Huge.

Last thing...I have been very negative of late. I'm entitled. But one thing this week has made me very, very happy. I have been saying 'Clap! Clap!' and Bennett will clap his hands and laugh. Now, for most of you parents with 'normal' kids who at one point were 2 years and 3 months old that probably doesn't sound like a big deal.

But for Bennett, it is a very, very big deal. You have to remember...this is a boy who was playing pattycake before (as my soul sister Danielle refers to it) the Seizure Monster grabbed him by the throat and choked the childhood out of him. This is a boy who was saying 'Hi Dada!' and waving to me when I came in and who now doesn't always even respond when you call his name.

For Bennett, that simple communication of performing an action based on a verbal suggestion? It is a major, major first step on the long and winding road of learning how to teach him whatever he is able to learn. For me...well, it gives me hope, something that has been in short supply lately.


I'll keep you posted.

OUT...

Monday, February 1, 2010

Meatloaf Would Be Proud


So we went over today to see Dr. Lachhwani, the Epileptologist who has basically been the Quarterback of Bennett's case ever since we transferred his care from Nationwide Children's Hospital of Columbus to Cleveland Clinic.

Appointment scheduled for 11:00 AM, and we finally saw him around 11:38 AM. Because of this I do not bitch. First of all, shit happens, but secondly because of how quick he is to act and react to things.

He asked us about all we were up here to do. At this point we were supposed to have the following done at the 6 month pre-operative milestone:

1. MRI
2. Blood Work
3. Neuro-Psychiatric Follow-Up
4. 2Hour Follow-Up EEG
5. Surgical Follow-UP
6. Oncology Follow-Up
7. Epileptologist Follow-Up

Yet, as he observed on the appointment chart, that there was no EEG, no Neuro-Psych and no Blood Work scheduled. This annoyed him. He knows we come from a distance and thinks someone should have done a better job on their side to make sure we got the appointments that we needed in one block.

We told him we thought so too, especially since we have 3 things all in a row tomorrow, and only one thing, our meeting with him, today.


That just won't do, he said as he picked up his cell phone and started making calls. He got us in to do the EEG at 1:30 PM, and the blood draw and lab work for after 4. That fast. Amazing dude. Liked him from the beginning, in case you are only a recent reader of this blog. It's why I don't give a shit if he is three hours late for an appointment.

He does make stuff happen. Neuro-Psych was out...not enough time. But 2 out of 3 ain't bad.

So that's what we did. The appointment with Dr. Lachhwani was just really asking us how he was doing as far as seizures. He hasn't had any, and of course Dr. Lachhwani was very happy about that. As for the learning/cognitive/behavior stuff, he again, like I expect the doctors to do tomorrow, stressed to give it time. To be patient. To be hopeful.

He told us his two greatest assets were the two of us, and he feels like Bennett is in excellent care. He liked that we had enrolled him in a special school for 36 hours of ABA therapy a week.

Anyway, it was like any other Epileptologist appointment. Caution, watchful eye, happiness about aspects of progress, happiness about the lack of seizures, and a stress by the doctor on optimism...that it helps everybody to heal.

I didn't tell him how down I've been of late. Why pee in the dude's corn flakes right there?

EEG was as it always is, as far as getting the leads on. Oy. Screams as if he is being tortured. Which I guess he is. Poor guy. But, then he fell right to sleep and so did I almost in that dark room.


I sneaked a peek at the EEG. I know shit about EEG. But it appeared calmer to me than what I was used to seeing. But, of course, every time the tech clacks in notations and junk I get nervous. But if something is amiss I know I'll get a call soon with a request for us to come in and see Dr. Lachhwani.

After that, sticking the kid while I AND Jen have to hold him down. More screaming. Over quickly. Then back to RMH, some rest...a bite to eat and a trip to Rite Aid when I was told by Jen that the wipes I brought were for cleaning counter-tops and junk and we were out of actual baby wipes.


Hey...I'm a dude. I'm not genetically pre-disposed to know the difference between butt wipes and wipes for cleaning a countertop. I clean counter-tops with paper towels or a sponge, not wipes. Besides, the box said it takes care of 99% of the bacteria...and there's a TON of bacteria in a turd my friends. Anyway...how was I supposed to know?

Tomorrow, MRI which Jen takes Bennett to alone while I stay back, pack bags and load the car and clean up the RMH room and launder the sheets and towels. We meet up after the MRI, with the car fully loaded and parked at the hospital. Then it's an Oncologist Follow-Up and Surgeon Follow-Up. Then head back to Columbus.

Gonna be a long one. Not sure if they will have MRI/EEG results tomorrow or not. Be cool if they did, but I am not betting on it.

OUT...