I don't have a lot to say. Just wanted to give a little shout out to my friends and fam that made our Christmas great. I hope you all enjoyed being with family & a little relaxation as much as I did.
Merry Christmas/New Year,
Tony
Monday, December 28, 2009
Monday, December 21, 2009
Wow, look at that thing spin...
In theory, the earth revolves on it's axis once every 24 hours. I'm not so sure. Perhaps, it's a super hero flying around the earth to speed up time, perhaps it's some sort of terrorist plot that causes our clocks to creep ever faster, I'd even be willing to consider that Al Gore is conspiring with said terrorist so he could finally support his climate change nonsense. [side note: feel free to post your favorite Al Gore jokes in the comments section. I can't get enough of them.]
Point is, seems like time is just trickling away. We all have so much to do in so little time. "Time management" tend to become "free-time allocation" "OK, so why is Tony feeding me this crap?"
Simple. Our family has had an amazing weekend. First, We have scheduled surgery to remove the legion for 2/19/2010. How 'bout that? Second, and also huge, I just accepted a job(BRG Inc. Bloomington, IN) that will start on 1/4/2010. OK now, things are looking up, huh.
So, that being said, the two biggest unknowns in our life, just became known. But for whatever reason, all of these other questions seem to pop out of the wood-work. How long should I commute to B-town? Where will we live down there? Will we Rent/Buy?
Schools? Network of friends/fam.? How about the strain of 2+ hrs on the road leaving Amanda to handle Ella by herself? When you look at these things, they all pale in comparison to what we've been through. But, we've got new challenges ahead now.
This initial period of commuting while we live, and Amanda works, in Indy will be tough but, I could emerge on the other side of this next hospital stay, as the bright, intelligent man that Amanda now wishes she'd married. I keep running into Ps. 18 type of verses. (my rock, my shield, my protector, scatters my enemies type of stuff.) So I guess I sayin', even though we worry, and life is still well outside the range of "normal", it is certainly looking up and we know we'll be fine.
And now to complete the circle, yet another prayer request, STRENGTH & CLARITY.
Amanda and I are going into a whirlwind of craziness, getting the house ready to sell, preparing for the next Clev. run, looking into homes, schools, etc. and still having the regular responsibility at home. I have a tendency to "hit a wall" and crash and that doesn't help Amanda at all. We need to not manage, but multiply our time. So, Strength, & Clarity, to know what is important & when, and have the strength and energy to accomplish it while still having time as a family.
There you go, another post that was suppose to be about 1.5 paragraphs. sorry.
Happy Christmas,
Tony
Point is, seems like time is just trickling away. We all have so much to do in so little time. "Time management" tend to become "free-time allocation" "OK, so why is Tony feeding me this crap?"
Simple. Our family has had an amazing weekend. First, We have scheduled surgery to remove the legion for 2/19/2010. How 'bout that? Second, and also huge, I just accepted a job(BRG Inc. Bloomington, IN) that will start on 1/4/2010. OK now, things are looking up, huh.
So, that being said, the two biggest unknowns in our life, just became known. But for whatever reason, all of these other questions seem to pop out of the wood-work. How long should I commute to B-town? Where will we live down there? Will we Rent/Buy?
Schools? Network of friends/fam.? How about the strain of 2+ hrs on the road leaving Amanda to handle Ella by herself? When you look at these things, they all pale in comparison to what we've been through. But, we've got new challenges ahead now.
This initial period of commuting while we live, and Amanda works, in Indy will be tough but, I could emerge on the other side of this next hospital stay, as the bright, intelligent man that Amanda now wishes she'd married. I keep running into Ps. 18 type of verses. (my rock, my shield, my protector, scatters my enemies type of stuff.) So I guess I sayin', even though we worry, and life is still well outside the range of "normal", it is certainly looking up and we know we'll be fine.
And now to complete the circle, yet another prayer request, STRENGTH & CLARITY.
Amanda and I are going into a whirlwind of craziness, getting the house ready to sell, preparing for the next Clev. run, looking into homes, schools, etc. and still having the regular responsibility at home. I have a tendency to "hit a wall" and crash and that doesn't help Amanda at all. We need to not manage, but multiply our time. So, Strength, & Clarity, to know what is important & when, and have the strength and energy to accomplish it while still having time as a family.
There you go, another post that was suppose to be about 1.5 paragraphs. sorry.
Happy Christmas,
Tony
Monday, December 14, 2009
Hello all
OK, so it's been about 2-and-a-half weeks since we left the hospital and oddly enough, the same amount of time since I posted, sorry. It's been an interesting patch of life. I'm not so much complaining, just trying to find a "known" point and take inventory.
So we left the hospital, and really, I was much better than the last trip. In September, when I got back I need about 3 day to recover. I'd get out of bed for a few hours, and the go back into hibernation. This trip, I had a slow day, and then I felt good to go. The exception being that I had some restrictions. I wasn't suppose to drive, lift more than 20 lbs., bend at the waist (bend at the knees for safety), that sort of thing.
Back to the story, so I've gradually been gaining strength, which equals the ability to keep up with Ella. That's important as Amanda's the one that has a job right now. It is an odd feeling however, to go from being able to flip, toss, tickle, wrestle, and rough-house with my 4-year-old, to her being able to lift more than I can. No big deal though, It's not so much a strength issue as a pressure on the incisions thing, so as they heal I'm getting my requirements reduced. I got the stitches out on the 10th. Oh man, let me tell you it's nice to wear hats again. Thanks go out to my friendly neighborhood RN.
So, here's the bad news, we go rear-ended on Saturday night. It was not cool. Nobody like getting hit, especially on the weekend, or by someone who speeds off. But, I can temper this with some good news as well. There happened to be a witness who saw the whole thing got the guy's plate and chased 'em as far as they could. They came back to find us, sat at the Hardee's we were parked at until the Cop arrived(about an hour and 15 minutes.) As of yet, we have not heard from from the Police, Insurance, or Surgeon, but it is the first business day after it happened.
BTW, a friend of mine recently posted a quote by "John Lenon"
"Life is what happens while your making other plans." Seems appropriate, huh.
So there you go, People often ask, "What's goin' on man" or "Is there anything new in you life" and I've been responding with, "not really, we're just in one of those seasons where your in a holding pattern." We'll Looks like that's over. We seem to be pretty busy between the go-ing's on of life and Christmas and all of that. As we've had to depend on friends and family for... lots. It seems like Christmas is simpler. You relize in a more concrete form (not just from a pulpit) that family really is all you have. People say "At least you have you heath" I will argue that a group people that value and support is more valuable. I've heard my mother say, more than once, the gift of your time is the most valuable one. Of course... she's my mother.
So that's where we are, what we're doing, how we're using our time. You know the drill, pray please. Also, Have a merry Christmas.
I'll let you know when I get some detail on stuff.
Tony
So we left the hospital, and really, I was much better than the last trip. In September, when I got back I need about 3 day to recover. I'd get out of bed for a few hours, and the go back into hibernation. This trip, I had a slow day, and then I felt good to go. The exception being that I had some restrictions. I wasn't suppose to drive, lift more than 20 lbs., bend at the waist (bend at the knees for safety), that sort of thing.
Back to the story, so I've gradually been gaining strength, which equals the ability to keep up with Ella. That's important as Amanda's the one that has a job right now. It is an odd feeling however, to go from being able to flip, toss, tickle, wrestle, and rough-house with my 4-year-old, to her being able to lift more than I can. No big deal though, It's not so much a strength issue as a pressure on the incisions thing, so as they heal I'm getting my requirements reduced. I got the stitches out on the 10th. Oh man, let me tell you it's nice to wear hats again. Thanks go out to my friendly neighborhood RN.
So, here's the bad news, we go rear-ended on Saturday night. It was not cool. Nobody like getting hit, especially on the weekend, or by someone who speeds off. But, I can temper this with some good news as well. There happened to be a witness who saw the whole thing got the guy's plate and chased 'em as far as they could. They came back to find us, sat at the Hardee's we were parked at until the Cop arrived(about an hour and 15 minutes.) As of yet, we have not heard from from the Police, Insurance, or Surgeon, but it is the first business day after it happened.
BTW, a friend of mine recently posted a quote by "John Lenon"
"Life is what happens while your making other plans." Seems appropriate, huh.
So there you go, People often ask, "What's goin' on man" or "Is there anything new in you life" and I've been responding with, "not really, we're just in one of those seasons where your in a holding pattern." We'll Looks like that's over. We seem to be pretty busy between the go-ing's on of life and Christmas and all of that. As we've had to depend on friends and family for... lots. It seems like Christmas is simpler. You relize in a more concrete form (not just from a pulpit) that family really is all you have. People say "At least you have you heath" I will argue that a group people that value and support is more valuable. I've heard my mother say, more than once, the gift of your time is the most valuable one. Of course... she's my mother.
So that's where we are, what we're doing, how we're using our time. You know the drill, pray please. Also, Have a merry Christmas.
I'll let you know when I get some detail on stuff.
Tony
Thursday, December 3, 2009
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.
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.
Wednesday, December 2, 2009
Last day with a tail
No, I'm not evolving, I'm having the electrodes removed at 1p today. I cant wait. I got these things put in on Tuesday the 24th @ 7:30a. We arrived at the hospital at 6a per our instructions. Since then, I haven't had anything more than a sponge bath. So... Amanda is ready for this to end too.
We have been telling doctors, surgeons, residents, nurses & assistants that we need to get out of here "No later than 10a Thurs. morning. They all have been saying it's no problem. I'll believe it when I'm out the door. But I do think they will make an effort.
But, I guess I should tell you about the consultation with Gonzalez(surgeon). He's giving us some options about how to proceed. As, I give you this, keep in mind he has not received the results from the latest sizzle test.
Anyway, Opt. 1) Do nothing, wait for better medicine, or better technology to develop so the risks will be reduced in the future.
Opt. 2) Proceed with the transection, go on as planned and take the risk of a "weak" arm/hand (anything from mild lose of feeling to completely useless non-functioning arm.)
Opt. 3) Still proceed, but in a different manor, preform a DTI ( a form of MRI that shows actual brain fibers.) Then, While the transection is in process, they will wake me up under a local anesthesia, and constantly test my motor function while he is removing tissue. Wow!
He is leaning toward Opt.3. He says there's about a 60% chance of completely removing the seizures, and having no affect on my hand. but with opt. 3, there is a much better chance of being able to rehab the "weakness".
It's a lot to digest when a surgeon looks you in the eye and tells you all of this and you've already come this far, with 10 holes in your head. We knew it was a possibility, but it's not what we expected for some reason.
Well I don't know that I can be anymore open/transparent than that.
They should take me to the OR in a little less than an hour so.
I'm Tony Rench
Stay classy Indianapolis
We have been telling doctors, surgeons, residents, nurses & assistants that we need to get out of here "No later than 10a Thurs. morning. They all have been saying it's no problem. I'll believe it when I'm out the door. But I do think they will make an effort.
But, I guess I should tell you about the consultation with Gonzalez(surgeon). He's giving us some options about how to proceed. As, I give you this, keep in mind he has not received the results from the latest sizzle test.
Anyway, Opt. 1) Do nothing, wait for better medicine, or better technology to develop so the risks will be reduced in the future.
Opt. 2) Proceed with the transection, go on as planned and take the risk of a "weak" arm/hand (anything from mild lose of feeling to completely useless non-functioning arm.)
Opt. 3) Still proceed, but in a different manor, preform a DTI ( a form of MRI that shows actual brain fibers.) Then, While the transection is in process, they will wake me up under a local anesthesia, and constantly test my motor function while he is removing tissue. Wow!
He is leaning toward Opt.3. He says there's about a 60% chance of completely removing the seizures, and having no affect on my hand. but with opt. 3, there is a much better chance of being able to rehab the "weakness".
It's a lot to digest when a surgeon looks you in the eye and tells you all of this and you've already come this far, with 10 holes in your head. We knew it was a possibility, but it's not what we expected for some reason.
Well I don't know that I can be anymore open/transparent than that.
They should take me to the OR in a little less than an hour so.
I'm Tony Rench
Stay classy Indianapolis
Tuesday, December 1, 2009
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
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
Monday, November 30, 2009
Not so bad...
So let me tell you, I was the Sizzle. (see last post) That was some crazy mess. They'd click a button, and my leg or hand or whatever would twitch or tingle. Or, They'd be basically make my brain pause. Surreal.
Anyway, we got through 4 of the 6 electrode tests which took about 2.5 hours. We're going to start again in the morning.
After that, All info from all test will be reviewed by many doc's and surgeons in the afternoon. I'll have a consultation after that. They should remove the electrodes Wed. morning, and release me Thursday morning.
At least that's how it's suppose to go. We'll see.
Thanks for the prayers,
T
Anyway, we got through 4 of the 6 electrode tests which took about 2.5 hours. We're going to start again in the morning.
After that, All info from all test will be reviewed by many doc's and surgeons in the afternoon. I'll have a consultation after that. They should remove the electrodes Wed. morning, and release me Thursday morning.
At least that's how it's suppose to go. We'll see.
Thanks for the prayers,
T
Be the sizzle!
Perhaps you've seen the McD's commercial about people who do everyday things, and then the say "Good for you... Be way to sizzle". It encourages all of us to "sizzle".
Right?... Ha.
Well in a few minutes I get to be the sizzle in a more tangible way. I am having my leads reversed in purpose. Instead of receiving data, a doc. will be sending an elec. current down the lead to map body / brain function. Sounds like an episode of House.
It's suppose to be somewhat tiring. They wil map motor an language functions. hope it's not to wierd.
Well Doc jst walked in Gotta go. Sizzle Sizzle...
T
Right?... Ha.
Well in a few minutes I get to be the sizzle in a more tangible way. I am having my leads reversed in purpose. Instead of receiving data, a doc. will be sending an elec. current down the lead to map body / brain function. Sounds like an episode of House.
It's suppose to be somewhat tiring. They wil map motor an language functions. hope it's not to wierd.
Well Doc jst walked in Gotta go. Sizzle Sizzle...
T
Thursday, November 26, 2009
Happy Thanksgiving
Hey everybody. Just thought I'd throw a post up to let you know things are going okay. Also, to share a few pictures.
First, I thought you all should see something Shannon made for me. I've been having a lot of fun harassing Cleveland Browns fans.
Thanks Shannon for helping me look good walking the halls.
We spent Thanksgiving Day watching football in the room, M52-03 and having a wonderful Thanksgiving meal, turkey loaf and all. Someone here did bring me pumpkin pie, God bless her.
As far as my twitching goes, I haven't been very productive, but the little bit I have been, they've gotten information from, so that's good. They are taking me off my last medication tonight, so it should only get more exciting from here. With a little luck, we'll be home early next week.
That's really about it for now, I appreciate the prayers. Hope to see you next week.
Happy Thanksgiving everyone.
First, I thought you all should see something Shannon made for me. I've been having a lot of fun harassing Cleveland Browns fans.Thanks Shannon for helping me look good walking the halls.
We spent Thanksgiving Day watching football in the room, M52-03 and having a wonderful Thanksgiving meal, turkey loaf and all. Someone here did bring me pumpkin pie, God bless her.
As far as my twitching goes, I haven't been very productive, but the little bit I have been, they've gotten information from, so that's good. They are taking me off my last medication tonight, so it should only get more exciting from here. With a little luck, we'll be home early next week.That's really about it for now, I appreciate the prayers. Hope to see you next week.
Happy Thanksgiving everyone.
Tuesday, November 24, 2009
Ah, Room #3
Tony was released quicker than expected from recovery, which is a really good thing. The CT scan came back okay and there seems to be no problems from implanting the electrodes. He is in a lot of pain and had been doped up fairly well. Uncensored Tony can be very entertaining.
His doctors felt that he could go to the Epilepsy Monitoring Unit this evening. He has landed in room #3, the same room he was in last time. I think it is a little too familiar. We hope that his experience this time will be much better than last time. For the most part, it's so far so good. He is hooked up to the video EEG, but still on his normal medications. We have been told that they will stop these meds tomorrow to hopefully get some "good" seizures.
Please pray that the pain will ease for Tony. It is rare that he complains about any pain, so I know that he must be hurting. Also, please pray that this time in the monitoring unit is much shorter and easier than last time.
Thanks,
Amanda
His doctors felt that he could go to the Epilepsy Monitoring Unit this evening. He has landed in room #3, the same room he was in last time. I think it is a little too familiar. We hope that his experience this time will be much better than last time. For the most part, it's so far so good. He is hooked up to the video EEG, but still on his normal medications. We have been told that they will stop these meds tomorrow to hopefully get some "good" seizures.
Please pray that the pain will ease for Tony. It is rare that he complains about any pain, so I know that he must be hurting. Also, please pray that this time in the monitoring unit is much shorter and easier than last time.
Thanks,
Amanda
Surgery is done.
Just spoke with the surgeon, and he is pleased. Everything looks like it went well. Tony is now getting a CT scan to double check. I should get to see him in about an hour.
Thanks for praying.
Thanks for praying.
Today's the day
Tony and I arrived at the Cleveland Clinic this morning before 6am thinking that this just doesn't seem real. He was taken back to surgery about 7:15. The nurse told us to expect him to be in surgery for about 6 1/2 hours with about 2 hours of recovery after that.
Please pray for Tony and that everything will go as planned. The surgeon's name is Dr. Gonzalez, and, if you would, please pray for him specifically.
I will post updates as I hear the news.
Thanks,
Amanda
Please pray for Tony and that everything will go as planned. The surgeon's name is Dr. Gonzalez, and, if you would, please pray for him specifically.
I will post updates as I hear the news.
Thanks,
Amanda
Friday, November 20, 2009
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...
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...
Thursday, November 19, 2009
T-3 and counting
Yea, we're headed back. I'm sure you all know but I thought it'd be good to through out some details just in case.
First and foremost, the picture is Ella and I at the Children's Museum.
We're going to take off on Sunday morning/afternoon. Ella will be dropped of at her Aunt Cindy's. She's excited. She'll get to hang out with her cousins. From there, we roll. Me, Amanda, and a cloud of dust.
We should show up in Cleveland for a late dinner. Check into the hotel and relax. The next morning is test day. My first appt. is about 2p. But it's late in the day, I don't expect them to still be on schedule. Nothing to cray on Monday, lab work, visit with a nurse, MRI.
And then,
I have a 6:45a in surgery. The rest will be played out in the monitoring unit, same place I was before. Same scenario as well. Electrodes placed, let's twitch, push the button, and go home.
Once we get through this, things will just be clearer. We'll either know if the extraction is possible or not, and at what potential cost. If it is, back we go in +/- 2 mo. If not, we try some different Rx's as we have before, and life goes on.
Another upside, we're getting this in before the potential passing of the HC bill. I wouldn't want the nurse practitioner assigned to me to send me to a craft & hobby shop for my brain extraction. But you know, it's cheaper and they're pretty good with exacto knives.
OK, cheap shot, but... do something.
So here's my smooth transition, we appreciate your prayers. Send more of them. Send them especially between the hours of 6:30-12:30 on Tuesday the 24th. And this may seem dumb, but while you're enjoying you're Thanksgiving lunch, also pray that pumpkin pie will be on what was a pretty despicable menu. That's no "poor me" trip I'm trying to send you on. But, I really want pumpkin pie. and football. and turkey. and football. and mashed potatoes. and football. Just a short list.
While I'm asking you for prayer, I'll give you this. Ive been reading a book called "Basic Discipleship". Part of the book is about surrendering every part of your life to the Lord. This is no different. So, as you pray, use that as your starting point.
More to come,
Thanks guys,
T
Saturday, October 24, 2009
Hello to all
Hey,
It's been a while, and today is my one month "due date" if you will. (thanks for the book Portel) Anyway, I wanted toss a post up to say "all is well". The few problems I'd had in weeks past have seemed to stop. So, thanks for you prayers. Anyway, not much to say, just thanks, and talk at ya later.
T
It's been a while, and today is my one month "due date" if you will. (thanks for the book Portel) Anyway, I wanted toss a post up to say "all is well". The few problems I'd had in weeks past have seemed to stop. So, thanks for you prayers. Anyway, not much to say, just thanks, and talk at ya later.
T
Tuesday, October 13, 2009
Oy! It's mid-October.
So yea, I haven't been posting in a while. Sorry if that bothers you. If it doesn't bother you than apology retracted. Mainly, the lack of posting is due to the directly proportional lack of activity. However, as with daughters, jobs, tax laws & breaking a 50... you're bound to have change.
I'll get right down to it so that this post isn't so ridiculously long. As I'm ramping up on one Rx, the trifecta seems to be weakening a bit. As a result, I've had 2 seizures over the last week. Yea, I know, kinda sucks huh. I can't say I'm suprised, just disappointed. You know, I've had a pretty good run on this combo for a good while, which usually spells the end. That's why it's called "pharmaceuticaly resistant" epilepsy.
So, not to be over dramatic, I imagine that this will continue on a down turn until I get to the CC. (I hope it's obvious that since the blog is already text, "CC" stands for "Cleveland Clinic" and NOT "Closed Captioned") The upside here is while there, I will probably be able to "produce" much quicker than before. Assuming that is the case, I could be home in around a week.
I think I mentioned it before, but if not, I'll be headed back for one day of testing on 11/23 and then admitted for surgery on 11/24.
I guess I'm just asking for prayer to time this "decline" so that it's beneficial. How odd is that? Also, I (and my wife) need sleep.
Go to it. Get prayin'.
Thanks,
Tony
PS As I type this, Amanda says to me "No seizures tonight OK? 'Cause you know, it's all about me."
Haha
I'll get right down to it so that this post isn't so ridiculously long. As I'm ramping up on one Rx, the trifecta seems to be weakening a bit. As a result, I've had 2 seizures over the last week. Yea, I know, kinda sucks huh. I can't say I'm suprised, just disappointed. You know, I've had a pretty good run on this combo for a good while, which usually spells the end. That's why it's called "pharmaceuticaly resistant" epilepsy.
So, not to be over dramatic, I imagine that this will continue on a down turn until I get to the CC. (I hope it's obvious that since the blog is already text, "CC" stands for "Cleveland Clinic" and NOT "Closed Captioned") The upside here is while there, I will probably be able to "produce" much quicker than before. Assuming that is the case, I could be home in around a week.
I think I mentioned it before, but if not, I'll be headed back for one day of testing on 11/23 and then admitted for surgery on 11/24.
I guess I'm just asking for prayer to time this "decline" so that it's beneficial. How odd is that? Also, I (and my wife) need sleep.
Go to it. Get prayin'.
Thanks,
Tony
PS As I type this, Amanda says to me "No seizures tonight OK? 'Cause you know, it's all about me."
Haha
Saturday, September 26, 2009
Round 3...
Titled for a couple reasons. 1, this was our third trip to C-Clinic. 2, This is the 3rd time I've tried to write this post. Either, distraction or DSL failure have gotten in the way before. Let's move on.
As you've read in previous post, we took off on Wednesday, had our appointments on Thursday, drove home Thursday-night picked up the kid / dog Friday and now you have a time line.
For the sake of not boring the crap out of you(But still no promises), we're only going to talk about Thursday. We arrived at the clinic around noon. BTW, calling this place a "clinic" is retarded. The word "clinic" makes me think of the show Becker, or maybe the emergency care clinic that's often part of a strip mall. Still, perhaps I should be cautious with the word "retarded" as I'm frequenting neurologists. It's bigger than any hospital, I've ever seen. Bigger than a community college. I dunno, maybe even a small D1 school. Sorry, back to not boring the crap out of you. 1st appointment was at 1pm with Dr. Gonzalez. He's my Neurosurgeon. Yup...Neurosurgeon. He will be preforming my SEEG.
The SEEG
This conversation was both calming, and nerve-racking. He was able to explain how low the probability of any complications are, but he was very detailed in what could go wrong. #1 concern, hitting a blood vessel and causing a "bleed". The size and location of the bleed determine the outcome / consequences. #2 - an infection. When was the last time you heard this, "Oh, I'd love to, but this brain infection is killing me."? I know bad choice of words. #3 - Hitting, clipping or crimping a vessel. That means stroke.
So, There you go. That's the bad news, here's the good. Concern #1 has a .05% chance of happening. They only go down from there. He is very positive about the result of the SEEG. He also seems to be optimistic for the extraction. Also good. He give a little higher #'s than Hantus did. I suppose he can be a bit more accurate, 'cause hes doing the work. More good news: We were told that we'd have to wait until Feb. for this SEEG. While we were waiting for the Dr. in our little holding pen, they got a spot or someone canceled or something, so right now we're scheduled for 11/23. They also said the would move that date up if they could.
On to the good stuff. The SEEG is a little different than I understood. Instead of two electrodes, there will be up to 16. Oy. He said "...you can compare them to spaghetti noodles". They are about the same size (2mm), but don't stick to the wall when cooked. After every thing is well placed in my head, I'll be wrapped up and sent to recovery for a short time. Then, on the Epilepsy Monitoring Unit. I'm sure those nurses can't wait to get me back. Anyway, much the same story as before, stay till ya twitch. They want about 5 this time. That's a bit frighting to me. But, I know they can stop the twitchin' at any time. All it takes is a little bit of IV happy sauce.
So let's say they get their 5. Now we wait. At best, they have everything they need and schedule a resection. Which is what Dr. Gonzales says is most probable. If that's the case we wait two months for my head to recover, before break out the exact-o knives. Second possibility, didn't get what we needed, so we need to replace the spaghetti (electrodes). The same two months apply here. Third, everything worked, we see it clearly and know where it and your motor functions are, but know it's decision time. "How much do you really use your left hand"?(leg, butt-cheek, whatever)
Yea, so, there it is. In all it's complicated, intense, gory, wonder. That's about it.
Oh yea, the we had a FMRI done that took about an hour. It's basically your standard run of the mill MRI but then you get instructions. It measures the increase in blood to areas of the brain to preform functions. After that we left and got home around 11:30p. Long day. Sorry for the novel. I'll try to keep it shorter next time.
As is standard fare for us right now, we continue to be greeted by people that are praying for us. That's great. Thank you all for all of you prayers.
Tony and fam.
As you've read in previous post, we took off on Wednesday, had our appointments on Thursday, drove home Thursday-night picked up the kid / dog Friday and now you have a time line.
For the sake of not boring the crap out of you(But still no promises), we're only going to talk about Thursday. We arrived at the clinic around noon. BTW, calling this place a "clinic" is retarded. The word "clinic" makes me think of the show Becker, or maybe the emergency care clinic that's often part of a strip mall. Still, perhaps I should be cautious with the word "retarded" as I'm frequenting neurologists. It's bigger than any hospital, I've ever seen. Bigger than a community college. I dunno, maybe even a small D1 school. Sorry, back to not boring the crap out of you. 1st appointment was at 1pm with Dr. Gonzalez. He's my Neurosurgeon. Yup...Neurosurgeon. He will be preforming my SEEG.
The SEEG
This conversation was both calming, and nerve-racking. He was able to explain how low the probability of any complications are, but he was very detailed in what could go wrong. #1 concern, hitting a blood vessel and causing a "bleed". The size and location of the bleed determine the outcome / consequences. #2 - an infection. When was the last time you heard this, "Oh, I'd love to, but this brain infection is killing me."? I know bad choice of words. #3 - Hitting, clipping or crimping a vessel. That means stroke.
So, There you go. That's the bad news, here's the good. Concern #1 has a .05% chance of happening. They only go down from there. He is very positive about the result of the SEEG. He also seems to be optimistic for the extraction. Also good. He give a little higher #'s than Hantus did. I suppose he can be a bit more accurate, 'cause hes doing the work. More good news: We were told that we'd have to wait until Feb. for this SEEG. While we were waiting for the Dr. in our little holding pen, they got a spot or someone canceled or something, so right now we're scheduled for 11/23. They also said the would move that date up if they could.
On to the good stuff. The SEEG is a little different than I understood. Instead of two electrodes, there will be up to 16. Oy. He said "...you can compare them to spaghetti noodles". They are about the same size (2mm), but don't stick to the wall when cooked. After every thing is well placed in my head, I'll be wrapped up and sent to recovery for a short time. Then, on the Epilepsy Monitoring Unit. I'm sure those nurses can't wait to get me back. Anyway, much the same story as before, stay till ya twitch. They want about 5 this time. That's a bit frighting to me. But, I know they can stop the twitchin' at any time. All it takes is a little bit of IV happy sauce.
So let's say they get their 5. Now we wait. At best, they have everything they need and schedule a resection. Which is what Dr. Gonzales says is most probable. If that's the case we wait two months for my head to recover, before break out the exact-o knives. Second possibility, didn't get what we needed, so we need to replace the spaghetti (electrodes). The same two months apply here. Third, everything worked, we see it clearly and know where it and your motor functions are, but know it's decision time. "How much do you really use your left hand"?(leg, butt-cheek, whatever)
Yea, so, there it is. In all it's complicated, intense, gory, wonder. That's about it.
Oh yea, the we had a FMRI done that took about an hour. It's basically your standard run of the mill MRI but then you get instructions. It measures the increase in blood to areas of the brain to preform functions. After that we left and got home around 11:30p. Long day. Sorry for the novel. I'll try to keep it shorter next time.
As is standard fare for us right now, we continue to be greeted by people that are praying for us. That's great. Thank you all for all of you prayers.
Tony and fam.
Thursday, September 24, 2009
Alllrightythen... (continued)
OK, not so rushed now. I'm sitting in my hotel room enjoying the dim luminance produced by by Dave's laptop. That does not mean that Dave is here, it means he's kind enough to share is toys. But I digress...
Speaking of which, as I've read over some of my posts, It becomes apparent that my grammar / spelling is not the best. Too bad. Amanda and others have pointed it out to me, but to be honest, its sort of a by product of the amount of drugs, the fact that I usually post when somethings going on, so I'm tense, and I'm still not good with a lappy keyboard. However, I don't plan on getting an editor anytime soon.
So where was I? Oh yes, right now we're on the North side of Columbus, about 2.25 hrs. out from the clinic. and our first appointment is at 1pm. So tomorrow, we'll get up and enjoy a easygoing morning, check out, and be on our way.
Just to keep current we have a meeting with the surgeon at 1p, and the FMRI at 2:30p. We should know results in about a week.
Type @ ya soon,
Tony
Speaking of which, as I've read over some of my posts, It becomes apparent that my grammar / spelling is not the best. Too bad. Amanda and others have pointed it out to me, but to be honest, its sort of a by product of the amount of drugs, the fact that I usually post when somethings going on, so I'm tense, and I'm still not good with a lappy keyboard. However, I don't plan on getting an editor anytime soon.
So where was I? Oh yes, right now we're on the North side of Columbus, about 2.25 hrs. out from the clinic. and our first appointment is at 1pm. So tomorrow, we'll get up and enjoy a easygoing morning, check out, and be on our way.
Just to keep current we have a meeting with the surgeon at 1p, and the FMRI at 2:30p. We should know results in about a week.
Type @ ya soon,
Tony
Wednesday, September 23, 2009
Alllrightythen...
So the short story is we got a call from Cleveland saying, "hey, we're down a tech, so if you want to do the FMRI this year better get up here. So after a brief nightmare with schedulers, we're on our way out of town at around 7:45p staying the night half way and then we have two apts. midday tomorrow.
Wish us luck gotta run.
Tony
Wish us luck gotta run.
Tony
Wednesday, September 16, 2009
And there's the flop
That not twichin' reference, or even a city pool reference, it's a poker reference.
After we got news of from the Doc, we were driving back home. Amanda was concerned that I was "not OK". So I made this analogy, Some will understand it some won't.
In Texas hold 'em, you get a couple cards, and the game starts. That's where we've been since... along time. You look at you cards, you try to be optomistic, but really you have no idea what hand you have. I'll forgo the wagering aspects. next comes "the flop". Three card are placed on face-up on the table shared by all in the game. We now have a full 5 card hand. the only uncertainty are the next two cards to come up. They can help. They can help, they can hurt, but I pretty much know what odds are.
OK, as I type that it sounds a bit dramatic. But, that where we are. The Cleveland clinic did a great job with their testing. They learned 10 times more in a week than in... ever... anywhere... all put together.
But, since they can see the legion, see the epileptogenic zone(EZ), know where motor functions are located, they know the risk. And here it is, 10% - 25% of having a weakened left hand. Doc was very clear that he can only speak in generalities. The numbers are general, the term "weakened" is general. Sometimes it happens and people "remap" and regain the function. No numbers for that. So that's the bad news, sort of "ripping off the band-aid" style.
Here's the good news. He can get it! The EZ that is. The EZ is where the seizures are emanating from and it is directly adjacent to the legion. For the sake of more general numbers, 50%-60% of never having another seizure. That jumps to around the 90% area if you change it to having far less, and less sever seizures. He will also get the legion but is not sure he can get all of it. The legion is sort of an indirect culprit. It's a very small area that just formed incorrectly (I guess my sister was right) and will not metabolize food. So now it's basically dead. Interesting tidbit, your brain is the consistency of jello. That legion is more like potato.
So that's an overview of the good and bad news, on to plan of action. I have so the we have a better idea of how close the regions are to on another, we're going to do some more testing. I know, I know... I'm shocked too. regardless, first up is a functional MRI (FMRI) currently scheduled for 10/14. They are trying to move that up for me. On the same day, I will have a consultation with the surgeon. He wil most likly first preform a stereo EEG (SEEG). I know the link says "childrens", but doc gave me the same info and #'s so it should explain well for you.
That leads me back to the top. The result from over a week of monitoring, and a crap load of testing turns up "the flop" To come, FIRM - "the turn", SEEG - "the river". It's getting to be an increasingly high stakes game. And I dunno I guess the "the flop" if you will, sort of jerked the cavalier approach to the whole thin into perspective. At some point I'm either going to have to fold, or go all in, and of course live with the consequences.
This is not my most up lifting post, so I'll let it go where it is. I'll remind you-all and myself the the goal was to be informative, honest & transparent. So I guess I don't have a motivational blog. Whatever.
We're still here, glad to have you-all, your prayers, your help and encouragement.
Gimme a couple days and I'll put up some more stuff. In the mean time, if you have Q's let me know and I'll answer them the best I can.
Tony
After we got news of from the Doc, we were driving back home. Amanda was concerned that I was "not OK". So I made this analogy, Some will understand it some won't.
In Texas hold 'em, you get a couple cards, and the game starts. That's where we've been since... along time. You look at you cards, you try to be optomistic, but really you have no idea what hand you have. I'll forgo the wagering aspects. next comes "the flop". Three card are placed on face-up on the table shared by all in the game. We now have a full 5 card hand. the only uncertainty are the next two cards to come up. They can help. They can help, they can hurt, but I pretty much know what odds are.
OK, as I type that it sounds a bit dramatic. But, that where we are. The Cleveland clinic did a great job with their testing. They learned 10 times more in a week than in... ever... anywhere... all put together.
But, since they can see the legion, see the epileptogenic zone(EZ), know where motor functions are located, they know the risk. And here it is, 10% - 25% of having a weakened left hand. Doc was very clear that he can only speak in generalities. The numbers are general, the term "weakened" is general. Sometimes it happens and people "remap" and regain the function. No numbers for that. So that's the bad news, sort of "ripping off the band-aid" style.
Here's the good news. He can get it! The EZ that is. The EZ is where the seizures are emanating from and it is directly adjacent to the legion. For the sake of more general numbers, 50%-60% of never having another seizure. That jumps to around the 90% area if you change it to having far less, and less sever seizures. He will also get the legion but is not sure he can get all of it. The legion is sort of an indirect culprit. It's a very small area that just formed incorrectly (I guess my sister was right) and will not metabolize food. So now it's basically dead. Interesting tidbit, your brain is the consistency of jello. That legion is more like potato.
So that's an overview of the good and bad news, on to plan of action. I have so the we have a better idea of how close the regions are to on another, we're going to do some more testing. I know, I know... I'm shocked too. regardless, first up is a functional MRI (FMRI) currently scheduled for 10/14. They are trying to move that up for me. On the same day, I will have a consultation with the surgeon. He wil most likly first preform a stereo EEG (SEEG). I know the link says "childrens", but doc gave me the same info and #'s so it should explain well for you.
That leads me back to the top. The result from over a week of monitoring, and a crap load of testing turns up "the flop" To come, FIRM - "the turn", SEEG - "the river". It's getting to be an increasingly high stakes game. And I dunno I guess the "the flop" if you will, sort of jerked the cavalier approach to the whole thin into perspective. At some point I'm either going to have to fold, or go all in, and of course live with the consequences.
This is not my most up lifting post, so I'll let it go where it is. I'll remind you-all and myself the the goal was to be informative, honest & transparent. So I guess I don't have a motivational blog. Whatever.
We're still here, glad to have you-all, your prayers, your help and encouragement.
Gimme a couple days and I'll put up some more stuff. In the mean time, if you have Q's let me know and I'll answer them the best I can.
Tony
Wednesday, September 9, 2009
Yup, I made it home.
I guess they had enough of me. The CCF finally sent me packin'. I stayed there for a little over a week and that was plenty. I don't ever want to do that again. ...until next week. That's right, I'm planning a return trip. This one shouldn't be as bad though. As I understand it, We're headed up there to discuss options with my Dr. after he gets out of a physicians conference. All of the Doc's (Neuro., Pshyc., Surgeon, even the intern) are gonna sit in a room and review charts, films of my head, vidoes of me twitchin', and then they're gonna say here are your choices. "A,B, or C"
I wonder what they'll say? or offer?
"Tony I can remove that with .006% chance of complications."
"Tony I feel if I remove half of the material affected you will have no further problems."
"Tony I would remove the problematic tissue, but then you'd only speak Portuguese."
"Tony, if you climb the tallest hill and reach the furthest tree, there you will see the smallest walnut which has rolled the greatest length from the tree. Eat this and you will be healed."
I wouldn't put any money on the last one. It's just an illustration to show how little I know of what to expect. Of course everything is still under our control. It's our decision to make. It's somehow to comforting know that I can go right back to the way things were.
Anyway, I have a short week here at the house. As always you prayers are appreciated. I'll get a few things done and then I'll be off again. I may be gone overnight. It may be for a hospital stay. I'm just not sure yet. I guess we'll know soon enough.
T
I wonder what they'll say? or offer?
"Tony I can remove that with .006% chance of complications."
"Tony I feel if I remove half of the material affected you will have no further problems."
"Tony I would remove the problematic tissue, but then you'd only speak Portuguese."
"Tony, if you climb the tallest hill and reach the furthest tree, there you will see the smallest walnut which has rolled the greatest length from the tree. Eat this and you will be healed."
I wouldn't put any money on the last one. It's just an illustration to show how little I know of what to expect. Of course everything is still under our control. It's our decision to make. It's somehow to comforting know that I can go right back to the way things were.
Anyway, I have a short week here at the house. As always you prayers are appreciated. I'll get a few things done and then I'll be off again. I may be gone overnight. It may be for a hospital stay. I'm just not sure yet. I guess we'll know soon enough.
T
Sunday, September 6, 2009
This one's from me with some good news!
Hi, this is Amanda. Tony has allowed my to post to his blog. I'll try and fill in the details of the last couple of days at the Cleveland Clinic, but may not be quite as entertaining as Tony is when he writes.
He has finally had some seizures and apparently has given the doctors some good data to review.
Let's back up a little ... They allowed him access to the Ictal Spect Test Tuesday through Friday. Each night he was sleep deprived and fell asleep at almost exactly 8am the next morning. A nurse waited as his bedside ready to inject him with the radioactive medicine as soon as he had a seizure. Then we waited and nothing happened, no seizures, so no test. Strange that a shortage of the medicine for this test was the reason his original appt here was moved from July to Aug 31st. Now, there will be not an Ictal Spect test, at least in this phase.
Friday night Tony slept and Saturday we just hung out together. Since he had been off meds for several days, I think he felt less foggy. I have enjoyed being with him just wish it could be under different circumstances.
Saturday night Tony felt like he wanted to stay up and see what happened, I fell asleep on my lovely pull-out chair. At about 5:30 this morning, I woke up to three nurses in the room and Tony having a seizure. It was rough on him, the worst I have ever seen. He said he hadn't had one like that since Junior High. It is obvious that this type of seizure is almost normal for the nurses here and they have taken very good care of him. He had another bad one about 9:30. The nurses decided to give him something to help calm him down and then he was give a half dose of his usual meds. He had a third seizure later on. This one was easier, but still not fun. He has slept for most of the day. So now, we are watching TV. We don't know what tonight will be like, but expect more seizures. We'll see.
Thanks again for all the prayers. We'll keep you posted.
Amanda
He has finally had some seizures and apparently has given the doctors some good data to review.
Let's back up a little ... They allowed him access to the Ictal Spect Test Tuesday through Friday. Each night he was sleep deprived and fell asleep at almost exactly 8am the next morning. A nurse waited as his bedside ready to inject him with the radioactive medicine as soon as he had a seizure. Then we waited and nothing happened, no seizures, so no test. Strange that a shortage of the medicine for this test was the reason his original appt here was moved from July to Aug 31st. Now, there will be not an Ictal Spect test, at least in this phase.
Friday night Tony slept and Saturday we just hung out together. Since he had been off meds for several days, I think he felt less foggy. I have enjoyed being with him just wish it could be under different circumstances.
Saturday night Tony felt like he wanted to stay up and see what happened, I fell asleep on my lovely pull-out chair. At about 5:30 this morning, I woke up to three nurses in the room and Tony having a seizure. It was rough on him, the worst I have ever seen. He said he hadn't had one like that since Junior High. It is obvious that this type of seizure is almost normal for the nurses here and they have taken very good care of him. He had another bad one about 9:30. The nurses decided to give him something to help calm him down and then he was give a half dose of his usual meds. He had a third seizure later on. This one was easier, but still not fun. He has slept for most of the day. So now, we are watching TV. We don't know what tonight will be like, but expect more seizures. We'll see.
Thanks again for all the prayers. We'll keep you posted.
Amanda
Friday, September 4, 2009
Holy Crap
Wow, It's been another day with relatively no change. I have missed yet another chance to "twitch" when it counts. I have about 6.5 hours to use the dose before it's diluted. So from 8am to 2:30, I need to produce, hence my prayer request. I need to either "produce" or stop having auras. I'm good with either. If I have no problem if the auras stop, then I just get to come home with no more mess. Or if I "produce", then will at least know how to proceed.
That's sort of the update. The other big issue is that We're both exhausted. I am being sleep diprived to help me have a seizure. Which is why I'm writing now at 12am.
Anyway, from all reports, Ella's doing well with her travels. Thanks guys. On to the good stuff. Here are some more pics.
Yup, that's me getting ready for a showger. I have to be water proof, So, I
t to look like an idiot.
Post shower, time for a walk. (Nurse Amanda cameo)
I also had some Whiskey prescribed to me. Just for fun, here are some pics of my Rx.
Nurse Susan holding / reviwing instructions for my Rx of whiskey.
RN/bartender Susan mixing my jack & coke.
More proof of Rx
That's sort of the update. The other big issue is that We're both exhausted. I am being sleep diprived to help me have a seizure. Which is why I'm writing now at 12am.
Anyway, from all reports, Ella's doing well with her travels. Thanks guys. On to the good stuff. Here are some more pics.
Yup, that's me getting ready for a showger. I have to be water proof, So, I
t to look like an idiot.
Post shower, time for a walk. (Nurse Amanda cameo)
I also had some Whiskey prescribed to me. Just for fun, here are some pics of my Rx.
Nurse Susan holding / reviwing instructions for my Rx of whiskey.
RN/bartender Susan mixing my jack & coke.
More proof of Rx
Wednesday, September 2, 2009
FIX! IT!
Dropping off ella at G-ma's
Hey all,
Thought I'd give you a quick update. Amanda & I are OK. We're both very tired. they switch our sleeo cycle. We'll be better once we get some sleep. Either way we're ready to get out of here. (hence the title.)
As of yet, I have not been "productive". Hoppfully soon.
You bet Dave:
I hope you enjoyed them.
I'll post more later. Please pray for some twitching and some sleep.
Thanks guys,
T
Sunday, August 30, 2009
Chillin' @ the guest house...
So currently, I', sitting in the lobby at the Cleveland Clinic Guest House. Why the lobby? Good question, WiFi in downstairs, dial-up in the rooms. The speed made it worth the walk.
I know, you don't really care. Reguardless, tonight we rest, tomorrow, we get crazy. I'll put up some pics and what not later. For now my friends, goodnight. I will get back intouch once settled.
Tony
PS. Dave, with Cutler, you might have a legitimate team this year.
I know, you don't really care. Reguardless, tonight we rest, tomorrow, we get crazy. I'll put up some pics and what not later. For now my friends, goodnight. I will get back intouch once settled.
Tony
PS. Dave, with Cutler, you might have a legitimate team this year.
T-22
Count down to insanity. So here we go. Amanda's in the other room putting makup on. I'm on the computer putting out the last blog from my home PC. Shortly, We'll be packing all of our well pack and planed bags into the car and hitting the road. It's 10 O'colck. 22 hours till the first appointment of the whole fiasco.
I was talking to a several friends through the course of yesterday, and told him I was sort of in "the calm before the storm". now that we're about to get into the car, I feel a bit more stormy. Still calm, but stormy. Maybe It's an "eye of the storm" sort of thing. I dunno.
Anyway, I wanted to post this to say "We're off!" & again "Please pray". Everything is taken care of. Ella is Happily w/ G-ma & G-pa, the dog is with friends, the hose is taken care of(even clean), and we're ahead of schedule. Most importantly, we're rolling with God. Before I get to reflective, I'm gonna go.
Type at cha later,
Tony
I was talking to a several friends through the course of yesterday, and told him I was sort of in "the calm before the storm". now that we're about to get into the car, I feel a bit more stormy. Still calm, but stormy. Maybe It's an "eye of the storm" sort of thing. I dunno.
Anyway, I wanted to post this to say "We're off!" & again "Please pray". Everything is taken care of. Ella is Happily w/ G-ma & G-pa, the dog is with friends, the hose is taken care of(even clean), and we're ahead of schedule. Most importantly, we're rolling with God. Before I get to reflective, I'm gonna go.
Type at cha later,
Tony
Wednesday, August 26, 2009
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
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
Wednesday, August 12, 2009
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
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
Wednesday, August 5, 2009
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
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
Wednesday, July 22, 2009
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
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
Thursday, July 9, 2009
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)
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
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
Wednesday, July 1, 2009
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
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
Wednesday, June 24, 2009
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.
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.
Friday, June 19, 2009
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
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
Sunday, June 14, 2009
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
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
Thursday, June 11, 2009
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
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
Tuesday, June 9, 2009
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
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
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