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.

OK then...

We seem to be having a bit of a turn around. That's a good thing, huh. Over the last four days, I've had two good nights. I know it doesn't sound like much, but It is definitely an improvement, and I'll take what I can get.

Last night was one of those good nights, which is a great way to start the weekend. Ella and I have had a great day already. We had a fun playing dress up, played outside a bit, went and had a picnic in the truck bed. Just a good day at the house. This evening, Amanda & I are headed to a friends house to do a little party / grill action. Nice. Ella will be hang'n out with Heather (my sister) and her family. It's a good dry run for the whole separation thing. I think she'll do just fine. She loves her cousins.

Also, I'm hoping this will ease Amanda's nerves as well. She doesn't leave Ella overnight hardly ever. Maybe 4 or 5 times. Ella's 4. And also Amanda could use a little time away w/ friends. Me too.

Hey for those of you following along at home, so all of you. We took Ella to a ped. cardiologist yesterday. Her heart races every once in a while an her regular ped. sent us on to this guy. Anyway, We think she has SVT (Supraventricular tachycardia). At this point it's nothing to serious. we have a beeper sized monitor we're supposed to use to record an event if she has one, and the report it back to the Doc. Out side of that nothing to be done yet, possibilities later, but for now, please add this to the list.

That's really about it for now. Sorry if this post rambles abit.
I hope you have a great weekend.

Tony

C'mon man... Really...

Well, this week has turned out to suck. I don't really know what else to tell ya except, BLAH! As Amanda reminds me, today marks a week straight that I've had seizures every night. Not cool. Something's got to change. Amanda and Ella went to church on their own this morning. I can get the message on line and all that but it's good to be with people and I missed that this morning. Sunday is also sort of our social day. We tend to go out with someone from Life and get a bite, maybe hang out as a fam., do some shopping, that sort of thing. Not today. Today I got yet even better acquainted with the interior of my home.

OK, so not all things are so bleak, since I was home all day and the girls took a nap, I decided to grab the guitar and mess around a bit. I haven't played in probably 5-6 months. It was nice, a good way to sort of step away from every thing that's going on right now. Not to mention, I got to lead worship again for a audience of 1. Fine with me. After the kid woke up, I played a little kids church music too. Always fun.

I also spent some time reading-up / working on my desk-top publishing skillz. (with a "z" like nun chuck skillz, bow hunting skillz & computer hacking skillz.) It's an odd thing really, but it sort of keeps me sane. Something new to learn and focus on while I'm out of work. It serves other purposes too, but that's a whole 'nother post.

Anyway, I guess regardless of last nights problems, today begins a new week. So, from the calenders point of view, fresh start. A new beginning if you will.

See ya next week,
T

Alright!

It was a good day to get out an enjoy the weather. OK, the weather wasn't so great. But, This is the first day in a while that I've gotten some sleep. For about the last two weeks I've had between 2 & 4 seizures a night probably... 4 times a week. That quite a bit.

It's difficult on several levels. obviously it's difficult to deal with day to day. It put's stress on Amanda and the rest of our family. With a 7/6 OH trip coming I really don't want to start the 4-8 week process of switching meds. All of this to say that on Tuesday of this week, I went in to get a Dilantin level, to see if that could be pushed any higher. Thankfully, I was able to push up 100mg. I'm now on Dilantin 500mg, Topomax 400mg & Keppra 4000mg, and they're all about maxed out for their acceptable range. Which, means an impending switch. Hence, Cleveland.

So, last night, I still had one seizure, but it wasn't so bad. And I woke up @ 7:30 or so, able to get going and help Amanda and Ella through their morning routines. It felt good to be normal again. Hopefully, it's the beginning of easier nights for our family. More rest for all of us would be great.

So back to the beginning, "get out and enjoy the weather". Big plans of a library trip or pulling weeds, which is better post rain, or maybe a driving range, ended up a no go as I had a rather eventful nap. I did say "transparent"

So I guess for now, let's add sleep and rest to the prayer list.

Thanks guys,
Tony

So... Here we go

This, obviously the first post of more than one, is the continuation of my effort to communicate with everyone, (family, friends, co-workers, church-folk) the whole lot of people around me. I began to give updates on the Cleveland trip, my health, & what not through the facebook's notes feature, but it proved a bit limited. Ergo, Whaz Shakin' Baby is born. Laughter... good.

I'm going to try to be very transparent in this blog. I ask that you do not share it or it's contents with anyone. As before, I'm sending this out to people who I consider "safe". If your reading this, it's because I think you care, will pray for me and my family, and will respect my privacy.

I'll start with the past just so I have an accurate record.

May 4th, 2009, 3pm
"Hey all,
A lot of you know my situation and have asked for updates, and some of you don't know. Regardless, you're getting this note because I think you care and will pray for us.

So here's the Readers Digest version:
As, my epilepsy has gotten worse, I've burned through medications and am strongly considering surgery.

So we have waited and waited as you may know to get into the Cleveland Clinic. Well, a while back, I received a call saying that my files/case were reviewed by not a doctor but by a group of doctors in some sort of Physicians conference/meeting. Furthermore, today I received some dates. July 6th - 14th.

I was contacted by a scheduler and given the basic rundown.
- EEG
- PET scan
- MRI
- DR/Surgeon consultation
- 5 day monitoring
- then we'll see what happens

So, my request, all of this is pretty ominous, and incredibly fast-paced. Please pray obviously for a good outcome, that I would walk away from Cleveland, and never have to take another pill or have another seizure. But also, that Amanda and I would be able to think quickly and clearly. That we would not be overwhelmed by the craziness of the situation, but instead have great discernment to know exactly how to handle all that is thrown our way. Please include the Dr's while you're at it. They are incredible physicians and surgeons, however still human. Last but not least, our daughter will be away from us for a while. So while she'll be glad to be with cousins and friends, she can get nervous and anxious. And her parents will miss her much.

So that's it in a nutshell. I guess.
Thanks for your prayers,
Tony"

Let's move on...
Now, we're a little less than a month out from our trip. None of the above details have changed, but we're getting ever closer. Which is good... and bad. I'm anxious to get there and get this all over with, but at the same time of course there is an element of fear. As I'm just getting started with this blog, I'll start simply by soliciting prayer. For now we don't have a lot of physical needs. That time will come, and I'll try not to be to stubborn about it. But for now simply pray. Bob used to pray over me "Let the peace of Christ reign in your heart... Col 3:15" That's sort of where I've been at lately and were I'll let you take it from there.

That's it for now,
T