Wow...

Has it really been two weeks since I've updated on here? I suppose so. Oh well, sorry. What can I tell you about the last to weeks? Man... It's been quite a ride. To tell you the truth not that much has happened, but just the enormity of what is happening and how close we're getting is starting to catch up to us. Along with that, just the ordinary pressures and strains of life, love, and godliness start to become pretty taxing. Ah well... Let it begin!

So back to Today, August the 26th. I've recently spoken with our scheduler at Cleveland. Asked her directly, "Do you still have us down for an 8/31 admission?".
And she does. "Are there any shortages I need to be aware of that could be a problem?". Believe it or not, she wanted to know why I asked. Of course, I explained the previous failure in a respectful manor. She assures me there's nothing to worry about. And yet, 5 days out, I worry. Something tells me this just wont be as smooth as it needs to be.
We'll see.

So we're starting to get ready for our "vacation". have people lined up for various things. Trying to meet with people as I can before I go. I feel like I'm running out of time. So, as this week comes to a close, if I don't manage to get you, I'm sorry.
I can think of a lot of folks that I really wanted to get in touch with before I left, but just sort of ran out of time. I don't know why, but I didn't see this time shortage coming.

This week, Ella is a major focus for Amanda and I. Last night we took her to the mall and just sort of let her do her own shopping. Which means we went to a little girls jewelry store, a candy shop, and we did a little shopping for a new outfit. Not much. Of course Dinner, and a Cinnabon as well. 'Cause there just wasn't enough sugar in the candy. Today... Chuck E. Cheese. "Where a kid can be a kid". And, where an adult can sit and have a very average cup of coffee if you go early enough. But she had a blast and we got to see some friends. Tomorrow night, dinner with Mimi (my mother) and who knows what else.

While I'm on the topic of Ella, We sent her heart monitor back! We had it for two months, and could never find an episode of her SVT. We asked frequently and I don't think she had any that we just didn't catch. So, that's awesome. We're probably done with that. Doc, didn't want to see her or have her take anything. Just sent the stupid monitor back. Great. Thank ya Jesus, and thank you all for your prayers.

More good news, while I'm at it. I think last post I said I was improving with my seizures. I seem to have kept that going. I haven't had any in... well probably since my last post. I think that's pretty good. I'll take it, and it does make it easier to think clearly and make rational decisions in these coming weeks.

Well I should post more often. It looks lik I ramble on if I wait too long.
I'll save the rest for later.

Tony

Whaz-up which-U

So I had several people ask over the last few days, and I'll tell you. "I'm doing alright." That's not your standard "Pavlovian" response greeting/answer.

Male 1: Hey man, How ya doin'?
Male 2: Fine. How 'bout you?
Male 1: Ah, you know, I'm doin' alright.

How 'bout some tunes?



Not at all, In fact "alright" is an improvement over the last few weeks to be blunt. The last few weeks have been rough and I've counted my weeks in good nights as opposed to bad ones. However, this week we seem to be making a turn around. I've put a small string of seizure -free nights together, and the the nights that aren't, seem to be lighter. It's a good thing. So while I can't tell you that I've been miraculously healed, I feel as thought I'm improving.

With that in mind, I begin to become cautiously optimistic for the future and for Cleveland. Now that I have some control over my evenings/weeks it seems easier to get through this waiting period. 2.5 weeks isn't as daunting as it was before. A good thing.

A good example:
We were at a friends party for her 1 year-old. While there, we made plans to hope in the car the next day and go to Holiday World. That's pretty cool. Perhaps your family is spontaneous and this seems small, but this never happens around our place.
Regardless, we did it. It was exhausting, but an absolute blast! Ella will probably ask to go every weekend. So much fun. If you're an FB person than maybe you've seen photos, if not, here you go.

So, where was I? Oh yes... doin' alright.
I want to let you all know that I am in fact doin' alright. I could be better, but so could everyone else. So once again, I solicit your prayers, and am thankful for all the support offered/given.

I'll write you soon.
Tony

Hello All

A friend of mine recently reminded me that I haven't posted in a while, so here goes. I don't really have a ton of changes in the last week and a half. We're still hoping for the dilantin increase to take a more solid effect than it is. It's sort of taking it's own sweet time. Not sure if it's going to work or not. The tentative date for admission is still 8/31/09. I'm hoping that that stays the case.

If it changes, I dunno. I may be upset, I may not give a rats... I think it just depends on how it happens and the what's going on at the time. Amanda tells me that she is "beyond stressed". She has now arrived at "just weary". I think that's a good way to put it. Stress implies there is something to be done. We, on the other hand, can only go through the motions until something happens. That sounds really depressing. I don't mean it to be. I'm just trying to explain us.

Today is Ella's last day of Summer Care. She starts her regular school year on Tuesday. A lot of her friends will be coming back so that will be nice. She is very excited. She'll be in Pre-K and I went to school with her teacher from grade school through high school. That's kinda cool. Ella is still just as crazy as ever. She's a lot of fun to spend time with.

Along with everyone else in central and southern Indiana, we got some storms yesterday. So, I got to spend yesterday evening doing some lumberjacking. I don't mind actually. I like slicing and dicing trees, and I want to get rid of that tree anyway. Now, stacking and binding so the trash guy picks it up, not as much fun.

The height of the tree used to be about 10' above the tallest branch in the picture. Of course, I put Ella(4yrs. 40in.) in the picture for some perspective. I the main trunk of the tree just cracked. I'm certainly glad it fell away from the house. That could have been a real mess.

There are more pics on Face book if you're interested. Anyway, I think I'm going to go make a meatloaf now. That's right ladies, he cook, he cleans, he lumberjacks. He's spoken for! ...and unemployed. Isn't that the way it goes.

Take care all,
Tony

hey Hey HEY

How's everybody doing? It's been a while, so I thought I'd get back to it.
I was on the phone with a friend today and realized I haven't kept y'all up with current events. I have settled down a bit, so here's a more reasonable walk through of what's goin' on. (can you hear Marvin Gaye in the back ground?)

The new time line is pretty much the same as the first except it begins on August 31th. So essentially, I got pushed back about two months. A few other changes are apparent this time around. In round two, we are getting paperwork that tells us our admission date should be considered tentative. Hmmm... how interesting. More specificaly, they say "we will let you know 1-2 day ahead of you admission if there is a change". Well, we'll be a bit more proactive than that.

Also, the schedule includes time for surgery. Now this is a surprising change from before. I wonder if it to is subject to the rescheduling due to... whatever. Just to be clear, no surgery is planned, just scheduled. Not sure what that means. I guess I've got a block of time reserved.

Anyway, now you're up to date. I'll get back soon with more.

As always, please keep the prayers coming.
Thanks,
Tony

As promissed, good news.

Yea, so some good news... Here we go.
I unfortunately had a seizure last night, which does not sound like good news. However, it's the first in about two and a half weeks. Pretty good. I feel like I'm able to function a good bit better, which is necessary to control a four-year-old.
Anyway, as far as that goes things are better.

Also, I have a pretty good foot in the door for a new job. Much needed. As of yet no offer, but I should get a call soon. I've looked and looked and there's just not much out there. So, A. I'm thankful to be afloat, & B. I'm also excited about what's to come.

We took a little trip up to S. Beloit. We saw a lot of family and got a chance hang-out with some of Amanda's family's recent graduates. So using that as a backdrop, I'm also grateful that we have quite a group of family and friends that are good to us, and very supportive.

And naturally, there's Amanda. Who's taken on perhaps more than she bargained for with the whole "for better or for worse..." thing. She's good to me. Sometimes not very nice, but sill, I think she kinda likes me. Love ya baby.

Anyway, that's it for now.
This is me signing off, saying "support comes in many forms, steel reinforced concrete, bras, and friends, just to name a few."

Please keep the prayers coming, we certainly appreciate them.

Tony

(Wow that was deep)

Well then...

What to do, what to do?
Today, Amanda had a phone conversation with the office manager at my local neuro's office (JWM neuro- certainly not an endorsement.). Apparently, my Dr. is too busy to pick-up a phone. We had a couple questions for her. 2 questions to be precise, could spill into a third. Unfortunately, they don't like their Dr.s to discuss anything with patients in a "non-clinical setting". Knowing the nature of my calls, options for the Cleveland clinic, possibly elsewhere, instead they prefer to set up an appointment. OH, FOR CRYING OUT LOUD! Are you kidding me? You really expect me to believe that it's about a setting. How 'bout a little truth. We want to bill both you and your insurance for 2 questions. How ridiculous! What to do?

So, at this point of the whole fiasco. I can't really just switch Dr.'s because of all the crap I going through. But none the less, I find my self wanting to drive up there and give them a piece of my mind. (No pun intended.) What to do?

BTW, if anyone reading is looking for an Office Manager / Medical Assistant position, I can tell you that JWM needs both. BADLY! Not that they don't have them, they just SUCK. Just apply and tell them that I sent you because they need help. Right now I'm having a hard time explaining to my-self why private medicine is better than the socialist version. Seriously, what kind of crap is this anyway? I've often compared government run health care to going through the BMV to get medical care. Not pretty right? I'm not so sure look where we're at now. What to do?

Has this happened to anyone else out there? I mean it's frustrating to not get a call back, it's mind-numbingly-infuriating to get a call that says, "Your Doc won't call you." Really? I mean... really???

If anyone has a good neurologist they can recommend, that would be great. I'm not sure if I'll switch now or later. But I definitely will switch. Can't believe it.
Just can't believe it. What to do?

OK, side bar. I'm not trying to turn this into a political blog. I'm just pissed about the ridiculousness I seem to encounter. So since I've use two consecutive posts to vent, I'll put up some good news next.

Aaarrrggg!
T

Sometimes

I think violence is the answer. Let me step back about 18 to 20 hours. I get a call before dinner at Mom's place. As I see the caller ID says "Cleveland Clinic", I excitedly pick up the phone. Surly, they're about to tell me that everything is set to go. Insurance has cleared everything. Here is you're last bit of instructions before you arrive. something like that, right. ABSOLUTELY NOT! Apparently, some drug that they need to inject during the Ictal SPECT observation phase in "unavailable".

What is that suppose to mean!!? Are you telling me that if I were in congress, or Hollywood for crying out loud, I couldn't get my hands on some Ictal sauce? I think not. I can't stand the fact that we have been trying for 6+ months to get in to this place, and less than a week before go time, the retard behind the counter goes "sorry dude, we're outta fries."

I and my family, not just immediate, I mean FAMILY, scheduled and planned for this for who knows how long. Rage. Just rage. Now, I'm looking at a lot of the family that I had lined up to take care of Ella, back in school! "Cause guess what. School starts in mid August. How bout Ella, we don't want to pull her out of her school year. AAaaahhhhhhh! rage. Even looking for work. I'm in a the next pool to be hired and could really use a job. But guess what, they, like most employers, really value reliability. If I get hired soon, I could be twitchy. If the call in about a month, I have to sing and dance. "No, it's cool. I'll be back in a few weeks after I'm done getting my head checked out." What, what... rage.

Whew......

So, a shattered phone, busted lamp, a table and chair tossed here and there. I'm starting to calm down. Actually, typing this out helps a bit. I managed to stay calm while explaining the ridiculousness of all this to a "scheduler" this morning, so I get the opportunity to "speak" with a Dr. Probably 'cause they're not doing anything else. They're not admitting patients!

We're still trying to get some other arrangement worked out between Cleveland, my local neuro, and anyone else who I can get involved. Obviously, this is a venting post. Depending on what happens, you may get another.

T