T-2

Figured it's been too long. So here I sit at the trusty old PC, enjoying some cookies and beer (ah ah, don't judge), and recapping life.

So I guess I've managed to stay employed for 6 weeks or so.(BRG inc.) Good for me. It's felt good to be a productive member of society again. I do miss the lazy mornings, free time with the kid, breakfast w/Mom, Facebook, constantly doing dishes... never-mind scratch that last one.

Anyway, I've enjoyed the change of pace, but it's also been rough. I started up with the seizures again. Maybe 2 nights a week, 2-4 a night. I've missed a bit of work because of it, but they have been very understanding. Which leads me back to the title.

T-2 an counting. Tomorrow is my last day of work, before we leave in two days for Cleveland. I hope for the last time. I'm looking FWD: to getting this over-with. Long-story-short, Travel Wed., Testing Thurs., Surgery Fri. morning. After that, 3-5 day stay at the luxurious Cleveland Clinic., and then home for a while.

This time around, Ella is going to ride with us on the way up. I bet she'll like the place. She'll have a good time at the hotel, and there's stuff to do in the hospital. Plus, family will be there. She'll have a good time. I'm not sure exactly when, but she'll head home with Doug and Linda.

BTW, I' starting a "How much further?" pool if anybody wants in.
$1 per 15min. time slot.
50% - 1st HMF
30% - 1st Melt down
20% - last HMF before she falls asleep

For whatever reason, this trip seems to have the least drama surrounding it. We just feel sort of calm about the whole thing. It's kinda good, it's kinda eerie. I was telling Amanda I don't really have any doubt about this trip, but I'm not optimistic either. Weird huh. This has been a year+ in the works, and now I'm just sorta, "whatever, we'll see."

Oy, look at me. I'm all Vechlempt. Pray amongst ya selves. I'll give you a topic. (travel, safety, surgery, calm, peace, recovery, success, Dr., family, hospital stay)

Tony

Comming home...

I'm unhooked,showered, and getting ready to go. I should be released from my deluxe accommodations here at the EMU in room 3 soon and then we'll be headed home.

The Electrodes came out yesterday. It was less than efficient, and no time lines were kept, but that's not really news. We started 2 hrs. late. I spent 5 Hours in recovery (instead of 60-90 min.) most of this is because the nurses have such a hard time getting a hold of Dr.'s to get orders. The important thing is that it all went well and I got back to the room with out complications.

That brings us to today. After speaking with the Gonzalez (Surg), he's got a more positive outlook for things to come. The details are a bit much to explain here, but I am much relieved. Anyway, I as I've said so often, on behalf of Amanda, Ella and myself, Thank you for your prayers.

Updates & timelines

Like I said yesterday, I had a sizzle test in the morning at 9a. That all went fine they didn't mess with me too much. They did 3 electrode groups instead of 2. When they were done, he showed me the gruops he tested and the ones he didn't. He tested 7of 10 overall. At that point I asked "why not just do them all now, so there's no chance they'll ask for more." And he assures me we have all the info we need.

So after the Physicians confrence, they roll all the equipment back into my room. Wouldn't you know it, they need more data. To be fair some of it was just changing frequency in the same spot. None the less... irritating.

So, in theroy, I'm suppose to have the electrodes pulled tomorrow morning. However, they won't give us a time. Just... morning. then an over-night stay gets us to Thursday.

We're trying to get home in time to see Ella's Christmas Program @ Pre-school, Thursday-night.

I hope to see you all soon,
Tony

Better aerodynamics & havin' a little fun

I wanted to post some pics of this because of a couple reasons. First, it was fun. Ella took this very seriously. I've never seen her get this focused and intent on any thing before. Excited and crazy, sure. She had a focus like no-other. I think we found her career. PJ's beauty College, here we come.

Second, with or without a head of hair, I'm still workin' the man sexy. That's right, eye-candy for the masses, reserved for the one.

Last but not least, I need a new camera. I'm ready to admit it. I want a DSLR.
We took these and the pis are.. meh. But then, I used a friends DSLR at a school program. WOW! I had so much fun. I think I could get into to that. Anyway, thoughtful ramblings of a mindless man.

Enjoy the pics.




Check us out



So it begins



Doing a great job



Look at that



How'd we do?



Short...



...and patchy



Finish it off



That's all folks...

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

Hey All,

Things continue to improve. I'm currently on a 3 of 4 streak, not so bad. Being up at 1am doesn't help, but I can't sleep. Any way I wanted to push out another update so here I type.

Our weekend was pretty wild actually, at least for us. We had a pretty good party with friends on Friday night, ended up crashing on an air mattress. (Back story- Ella was at my Sister's place with her 3 boys she had a great time and still talks about it. "Daddy, next time I get to stay for two nights!")I experienced Guitar Hero, and I must say, it was fun. So, I take back about 65% of the negative things I've said about the game. There you go Susan, I hope that makes you happy.

Saturday was a bit slower due to the evening before. We just sort of hung around the house, picked up the kid in Avon, did a little shopping, spent some time together in the evening. Definitely more relaxed.

Sunday of course was Father's day. So we skipped church, and headed of to the zoo. It was Great. I think we saw everything in the park. Ella got to ride her first coaster. She giggled through the whole thing. It was our test for bigger parks. I think we'll plan a trip to Holiday world or something like that. Anyway there's pics on the Facebook page. Go check 'em out. After that we went over to Doug & Linda's (Amanda's folks if you don't know) and just spent some time with some more family Happy Father's day hugs/handshakes all-around, and Italian beef sandwiches. ...uuummm

Now Sunday Night I didn't do so well and Amanda had to take Ella to P.S. But. I rallied, and was able to make a good showing for the rest of the day. Today, Tuesday, Pretty good. I got a lot accomplished. I don't think I spent quite enough time with Ella. We'll work on that.

Ella has a field trip tomorrow to the Civic theater & Chic-Fil-A. She'll have a great day. I hope to get a bit more done while she's gone so I can focus on her Thursday.

Well, That's a quick update for you. I think I'm slowly turning a corner. I hope it last a while.