We finally have a new date for Zach's spinal surgery - January 12th.
Of course that's a double edged sword of sorts. We want to get the surgery done in order to help make his life better. At the same time though, there are all the issues that we are going to have to deal with both pre and post surgery. Really, for me at least, it would be better if they just called and said have him in for surgery tomorrow at 6:00 AM. Then there would be no need to sit around for a month and imagine all of the things that can go wrong. As it stands though, we get to stress about it until the 12th.
I'm not sure at this point what effect this will have on Josh and I doing the race on the 25th. There's no way of knowing what condition Zach will be in at that point. I can't see leaving Janine alone to deal with Zach fresh out of surgery, and Brandon while Josh and I spend the day jogging around South Beach. It's possible that Zach will be fine by that point, but we'll have to play it by ear...
Now that baseball is on a short break, Josh has come up with another activity to occupy that pesky free time on Saturdays. He has become a proud member of his school's chorus.
For any of you that have had the.... pleasure(!!!) of hearing Josh sing, you may be somewhat surprised at this turn of events. Apparently the selection process for this chorus wasn't overly rigorous. Now, as a parent it's probably bad form to criticize your children, but I've gotta stand by this one. To his credit though, he laughs as hard as anybody whenever the subject of his singing prowess is brought up. He's having fun doing it, and could care less about critics.
I was somewhat fearful when we arrived for the "premiere" of the group last week at the city tree lighting ceremony. However I was mildly surprised that they weren't all that bad. Not the Vienna Boy's Choir to be sure, but not horrible. Apparently if you put together enough members, even a chorus of adolescents with cracking voices sounds okay.
I was asked at the performance why Josh was in one of the back rows. I explained that the more ummm.. "powerful" voices are kept to the rear so they don't drown out the more "delicate" voices in the front. That's my story, and I'm sticking to it.
Monday, December 15, 2008
Tuesday, November 25, 2008
Yes, I know....
I'm not doing a great job with the whole blogging thing.
I realize that you check in every morning first thing to see if I have posted one of my witty, thought provoking diatribes. Day after day you are disappointed in my lack of posting. You sit there wondering if perhaps I've given up on this whole thing, or possibly I've been abducted by aliens without internet access.
Truth is, like I said before... I've been busy. You think that exercise bike pedals itself?
Anyway, here's the latest....
Since we last spoke, our country has elected a new president. I'll keep my fingers crossed that he can come up with some way to get the economy, and the country in general I guess, turned around.
Zach is free of the MRSA bug. His surgery is scheduled for sometime in January. We could have done it in December, but we didn't want to go through the holidays with Zach just out of surgery. There's no telling how many holiday seasons that he will have, so it doesn't seem right to keep him from enjoying one if we can help it.
Zach has had more frequent episodes of what I guess you could call out of control shaking. It doesn't seem to be a seizure because he doesn't lose consciousness and will look at you - he just can't seem to stop shaking. There are times this seems to be triggered by him being frustrated about something - not being able to get up and walk, or not being able to communicate his needs to us. I wish we had some idea of how to help him when he has one of these episodes, but really all we can do is guess what he may want or need.
It's times like that where you are really hit with how much Hunter Syndrome damages the body. It becomes clear that the time we have for researchers to find a way for Elaprase to treat the central nervous system is getting shorter way faster than we would like.
Maybe one of the reasons I don't post often is because it forces me to contemplate the future - and I sure don't need THAT stress.
In other news, Josh turned 10 the day before Halloween. We had a party for him at TAG Gymnastics in Weston. It's pretty damn fun for both the kids and the adults. Your group pretty much has the run of the gym and all of the equipment for an hour. It's actually quite funny to see the adults cutting the kids in line so they can get a shot at the trampoline first. Janine and Liz (The director from Zach's school) took Zach for a turn on some of the equipment. Some of it he actually seemed to enjoy. Although he was beginning to look a little seasick after his turn on the trampoline.
As a side note to all of the parents that were there, I have numerous photos of you bouncing around on the equipment. If you don't buy a t-shirt or something from the store over there on the right, I'm going to publish them and subject you to a lifetime of public ridicule.
Oh, and for the mom who was wearing the skirt while bouncing on the trampoline... I've had offers from several websites for those photos.
Last Saturday marked the end of yet another baseball season for Josh. His team did well, finishing in second place for both the season standings and the playoffs. That's two more good sized trophies for the mantle. Of course he doesn't have a mantle to put them on because this is South Florida, and a fireplace is as common as a pet caribou. What he has is a dresser to put them on. Actually about half a dresser because he has a habit of piling his clothes on TOP of the dresser rather than IN the dresser. Either I need to get him to actually put the clothes away, or I need to buy him a bigger dresser.
Maybe I can get him to put the trophies in the dresser... I hadn't considered that until just now.
Brandon's birthday is rapidly approaching. We are going to have his party at TAG as well.
All moms who attend in a skirt are not required to bring a gift.
I realize that you check in every morning first thing to see if I have posted one of my witty, thought provoking diatribes. Day after day you are disappointed in my lack of posting. You sit there wondering if perhaps I've given up on this whole thing, or possibly I've been abducted by aliens without internet access.
Truth is, like I said before... I've been busy. You think that exercise bike pedals itself?
Anyway, here's the latest....
Since we last spoke, our country has elected a new president. I'll keep my fingers crossed that he can come up with some way to get the economy, and the country in general I guess, turned around.
Zach is free of the MRSA bug. His surgery is scheduled for sometime in January. We could have done it in December, but we didn't want to go through the holidays with Zach just out of surgery. There's no telling how many holiday seasons that he will have, so it doesn't seem right to keep him from enjoying one if we can help it.
Zach has had more frequent episodes of what I guess you could call out of control shaking. It doesn't seem to be a seizure because he doesn't lose consciousness and will look at you - he just can't seem to stop shaking. There are times this seems to be triggered by him being frustrated about something - not being able to get up and walk, or not being able to communicate his needs to us. I wish we had some idea of how to help him when he has one of these episodes, but really all we can do is guess what he may want or need.
It's times like that where you are really hit with how much Hunter Syndrome damages the body. It becomes clear that the time we have for researchers to find a way for Elaprase to treat the central nervous system is getting shorter way faster than we would like.
Maybe one of the reasons I don't post often is because it forces me to contemplate the future - and I sure don't need THAT stress.
In other news, Josh turned 10 the day before Halloween. We had a party for him at TAG Gymnastics in Weston. It's pretty damn fun for both the kids and the adults. Your group pretty much has the run of the gym and all of the equipment for an hour. It's actually quite funny to see the adults cutting the kids in line so they can get a shot at the trampoline first. Janine and Liz (The director from Zach's school) took Zach for a turn on some of the equipment. Some of it he actually seemed to enjoy. Although he was beginning to look a little seasick after his turn on the trampoline.
As a side note to all of the parents that were there, I have numerous photos of you bouncing around on the equipment. If you don't buy a t-shirt or something from the store over there on the right, I'm going to publish them and subject you to a lifetime of public ridicule.
Oh, and for the mom who was wearing the skirt while bouncing on the trampoline... I've had offers from several websites for those photos.
Last Saturday marked the end of yet another baseball season for Josh. His team did well, finishing in second place for both the season standings and the playoffs. That's two more good sized trophies for the mantle. Of course he doesn't have a mantle to put them on because this is South Florida, and a fireplace is as common as a pet caribou. What he has is a dresser to put them on. Actually about half a dresser because he has a habit of piling his clothes on TOP of the dresser rather than IN the dresser. Either I need to get him to actually put the clothes away, or I need to buy him a bigger dresser.
Maybe I can get him to put the trophies in the dresser... I hadn't considered that until just now.
Brandon's birthday is rapidly approaching. We are going to have his party at TAG as well.
All moms who attend in a skirt are not required to bring a gift.
Monday, November 3, 2008
Back in the saddle
Greetings loyal readers! I realize it’s been a while since I last posted.
I’d love to say that’s because I hit the lottery and was off enjoying a nice vacation in Europe.
Of course that would be a lie.
Truth is, I’ve just been a bit busy lately. Not good, I’m having fun busy – more like, business is down so we’ve had to downsize at the office, now I’m doing the work of three people busy. Considering the fact that I actually still have a job with the way the economy is, I guess I should just be thankful.
I spent an hour and a half in line to “early vote” the other day. While it’s a pain in the butt to stand there, I actually see the lines as a good thing. No matter who they vote for, at least people are getting out and voting. There is way too much apathy in the voting ranks these days.
Now personally, I think it is the voting method our leaders have chosen for us that slows down this whole process.
I loved those touch screen models we used for a few elections. They were nice and quick. Want to vote for someone? Just touch the square next to their name. When you have made all your selections, push the button that says “VOTE”. Nice and simple.
Now there were a few problems. First, there was no “paper trail” of the votes. In theory, the computer records could be lost or manipulated in some way, and there would be no paper records to fall back on. My simple solution was to install a printer on each machine that would print out a receipt of your votes, which could then be dropped into a box and kept in case a paper trail was needed.
This didn’t seem too difficult to me. However, our esteemed leaders decided that this was an expensive – impractical solution.
Well, that and the fact that apparently a large portion of the population was too stupid to use the computerized voting machines.
So now we are stuck with voting by bubble. Remember all those standardized tests from your school days? Well now you get to relive that horror while you vote for President. They don’t even have all of the answer bubbles lined up so that you can try to make a neat pattern when you fill in your selections.
This would be ideal for me because I don't know who to vote for in half of the races on the ballot anyway. I'll admit that I have no idea who should sit on the local water commission. I also don't really care if the city amends its charter to allow the commissioners to adjourn a meeting without a roll call vote. These decisions would be so much easier if I was trying to complete a snake or a Christmas tree pattern. (For those of you who didn't get that joke, ask your kids - they'll understand)
I thought it somewhat suspicious that I was given a black pen to fill in my bubbles at the polling place. Everybody knows you need a #2 pencil to fill in the bubbles. I tried to protest this fact to the lady who directed me to my booth. She apparently didn’t have much of a sense of humor though. Neither did the supervisor she called over because I was causing a “commotion”. Well, once the supervisor confirmed that I could in fact exercise my voting rights with an ink pen these days – and that I should hurry up and do so because there were about 5000 people behind me in line – I began to bubble my selections.
It was at this point I realized that despite my years of experience in filling in bubbles, that this was a pretty tedious process. Whereas touching a box on a screen took a fraction of a second, this whole fill in the bubble thing takes time. Put that together with the fact that a ball point pen actually sucks for this purpose, and you can begin to understand why the line is so damn long.
After about 20 minutes I fed my ballot (4 pages front and back) into the "scanner", got my little "I voted" sticker and went on my merry way. I don't know what the deal is with the stickers, but don't try to get out of there without getting one. I recognized the guy handing them out as the greeter from the local Wal-Mart, so at least the elections department took the time to make sure they had an experienced sticker dispenser for that position on election day.
Well, I thinkI’ve rambled on enough for the moment…
As far as my “training” is going, I’m doing 10 miles at a time now on the bike in around 37 minutes. I’m not out of breath when I climb stairs anymore, so I guess I’m making progress. The scale at Publix is still holding out on me. I’m going to go with the whole I’m-building-muscle-and-muscle-weighs-more-than-fat-so-I-haven’t-lost-weight-even-though-I’m-in-better-shape theory. (man I hope that’s true)
I have some other things I'd like to get into, but I know you have other things to do, (such as buy logo merchandise from my site over there on the right) so I'll end for now.
Just as a reminder to myself – Next time don’t forget Halloween and why adults shouldn’t jump on trampolines.
I’d love to say that’s because I hit the lottery and was off enjoying a nice vacation in Europe.
Of course that would be a lie.
Truth is, I’ve just been a bit busy lately. Not good, I’m having fun busy – more like, business is down so we’ve had to downsize at the office, now I’m doing the work of three people busy. Considering the fact that I actually still have a job with the way the economy is, I guess I should just be thankful.
I spent an hour and a half in line to “early vote” the other day. While it’s a pain in the butt to stand there, I actually see the lines as a good thing. No matter who they vote for, at least people are getting out and voting. There is way too much apathy in the voting ranks these days.
Now personally, I think it is the voting method our leaders have chosen for us that slows down this whole process.
I loved those touch screen models we used for a few elections. They were nice and quick. Want to vote for someone? Just touch the square next to their name. When you have made all your selections, push the button that says “VOTE”. Nice and simple.
Now there were a few problems. First, there was no “paper trail” of the votes. In theory, the computer records could be lost or manipulated in some way, and there would be no paper records to fall back on. My simple solution was to install a printer on each machine that would print out a receipt of your votes, which could then be dropped into a box and kept in case a paper trail was needed.
This didn’t seem too difficult to me. However, our esteemed leaders decided that this was an expensive – impractical solution.
Well, that and the fact that apparently a large portion of the population was too stupid to use the computerized voting machines.
So now we are stuck with voting by bubble. Remember all those standardized tests from your school days? Well now you get to relive that horror while you vote for President. They don’t even have all of the answer bubbles lined up so that you can try to make a neat pattern when you fill in your selections.
This would be ideal for me because I don't know who to vote for in half of the races on the ballot anyway. I'll admit that I have no idea who should sit on the local water commission. I also don't really care if the city amends its charter to allow the commissioners to adjourn a meeting without a roll call vote. These decisions would be so much easier if I was trying to complete a snake or a Christmas tree pattern. (For those of you who didn't get that joke, ask your kids - they'll understand)
I thought it somewhat suspicious that I was given a black pen to fill in my bubbles at the polling place. Everybody knows you need a #2 pencil to fill in the bubbles. I tried to protest this fact to the lady who directed me to my booth. She apparently didn’t have much of a sense of humor though. Neither did the supervisor she called over because I was causing a “commotion”. Well, once the supervisor confirmed that I could in fact exercise my voting rights with an ink pen these days – and that I should hurry up and do so because there were about 5000 people behind me in line – I began to bubble my selections.
It was at this point I realized that despite my years of experience in filling in bubbles, that this was a pretty tedious process. Whereas touching a box on a screen took a fraction of a second, this whole fill in the bubble thing takes time. Put that together with the fact that a ball point pen actually sucks for this purpose, and you can begin to understand why the line is so damn long.
After about 20 minutes I fed my ballot (4 pages front and back) into the "scanner", got my little "I voted" sticker and went on my merry way. I don't know what the deal is with the stickers, but don't try to get out of there without getting one. I recognized the guy handing them out as the greeter from the local Wal-Mart, so at least the elections department took the time to make sure they had an experienced sticker dispenser for that position on election day.
Well, I thinkI’ve rambled on enough for the moment…
As far as my “training” is going, I’m doing 10 miles at a time now on the bike in around 37 minutes. I’m not out of breath when I climb stairs anymore, so I guess I’m making progress. The scale at Publix is still holding out on me. I’m going to go with the whole I’m-building-muscle-and-muscle-weighs-more-than-fat-so-I-haven’t-lost-weight-even-though-I’m-in-better-shape theory. (man I hope that’s true)
I have some other things I'd like to get into, but I know you have other things to do, (such as buy logo merchandise from my site over there on the right) so I'll end for now.
Just as a reminder to myself – Next time don’t forget Halloween and why adults shouldn’t jump on trampolines.
Monday, October 13, 2008
Not so fast...
Remember that October 20th surgery date? Well, that ain't happening.
Here's the story...
Last Thursday (actually 2 Thursdays ago now) Zach had some blood and other bodily fluids drawn for his pre-op lab work.
That Friday Janine got a frantic call from Zach's surgeon's office because the test for clotting ability of his blood came back with a reading off the charts. Apparently most hemophiliacs have better clotting than Zach does, and the mere act of blinking his eyes would probably cause him to bleed to death...
Of course the fact that Zach has never had any issues like this before led me to believe that somebody must have screwed up the test. Still, Janine had to run him back to the hospital to have the test done again. What do you know - this time it came back just fine.
Apparently because the blood was drawn from Zach's port, it was contaminated by Heparin - an anti-clotting drug that they use to flush out the port at each infusion.
Okay, well that's fixed - we're ready to go - or maybe not...
So Janine gets another call last Friday that Zach's nasal swab came back positive for MRSA. This is one of those anti-biotic resistant flesh eating type bacteria. Lovely. Apparently this bug can live quite happily in the nasal passages for years without any ill effects to the host. It's actually quite common in the medical field, and usually doesn't cause any major problems.
However, if it gets into the bloodstream it can be fatal. So, the bacteria needs to be cleared up before any type of surgery can take place. (Seems sensible to me)
The surgeon's office referred us to an infectious disease specialist for treatment. Of course he doesn't have any appointments available until the 30th...
Now, a couple of things to think about there...
First, if you are an infectious disease specialist, wouldn't you want patients in as soon as possible? Since they could you know - INFECT PEOPLE. Of course that could be a good way of ensuring a steady stream of patients... What's that you say Mr. Townsley? Your doctor says you have Tuberculosis? Well let's see, we can squeeze you in sometime in December. In the meantime spend as much time as possible in crowded places - malls, airplanes, schools - places like that.
Now the second thing to consider is this: Is this the doctor's office you want to be waiting in? Surrounded by people with INFECTIOUS DISEASES. ARGHHH!!! Everybody would be looking at me like I'm strange because I'd be sitting there in a bio-hazard suit. People don't go to an infectious disease specialist because they have a cold. You know these people gotta be carrying around some type of superbug that a normal doctor is afraid to deal with.
One thing I do have to say is that any doctor that specializes in infectious diseases has to have balls of steel. (Or a really good supply of bio-hazard suits)
In any case, we weren't up for waiting two weeks so we got Zach an appointment with his pediatrician for this morning. He got Zach set up with a 10 day cycle of medication that should get the MRSA cleared out. We'll get the nasal swab done again next Thursday to be sure.
After that we'll re-schedule the surgery.
My new saying... "MPS - it's not just a job, it's an adventure".
Here's the story...
Last Thursday (actually 2 Thursdays ago now) Zach had some blood and other bodily fluids drawn for his pre-op lab work.
That Friday Janine got a frantic call from Zach's surgeon's office because the test for clotting ability of his blood came back with a reading off the charts. Apparently most hemophiliacs have better clotting than Zach does, and the mere act of blinking his eyes would probably cause him to bleed to death...
Of course the fact that Zach has never had any issues like this before led me to believe that somebody must have screwed up the test. Still, Janine had to run him back to the hospital to have the test done again. What do you know - this time it came back just fine.
Apparently because the blood was drawn from Zach's port, it was contaminated by Heparin - an anti-clotting drug that they use to flush out the port at each infusion.
Okay, well that's fixed - we're ready to go - or maybe not...
So Janine gets another call last Friday that Zach's nasal swab came back positive for MRSA. This is one of those anti-biotic resistant flesh eating type bacteria. Lovely. Apparently this bug can live quite happily in the nasal passages for years without any ill effects to the host. It's actually quite common in the medical field, and usually doesn't cause any major problems.
However, if it gets into the bloodstream it can be fatal. So, the bacteria needs to be cleared up before any type of surgery can take place. (Seems sensible to me)
The surgeon's office referred us to an infectious disease specialist for treatment. Of course he doesn't have any appointments available until the 30th...
Now, a couple of things to think about there...
First, if you are an infectious disease specialist, wouldn't you want patients in as soon as possible? Since they could you know - INFECT PEOPLE. Of course that could be a good way of ensuring a steady stream of patients... What's that you say Mr. Townsley? Your doctor says you have Tuberculosis? Well let's see, we can squeeze you in sometime in December. In the meantime spend as much time as possible in crowded places - malls, airplanes, schools - places like that.
Now the second thing to consider is this: Is this the doctor's office you want to be waiting in? Surrounded by people with INFECTIOUS DISEASES. ARGHHH!!! Everybody would be looking at me like I'm strange because I'd be sitting there in a bio-hazard suit. People don't go to an infectious disease specialist because they have a cold. You know these people gotta be carrying around some type of superbug that a normal doctor is afraid to deal with.
One thing I do have to say is that any doctor that specializes in infectious diseases has to have balls of steel. (Or a really good supply of bio-hazard suits)
In any case, we weren't up for waiting two weeks so we got Zach an appointment with his pediatrician for this morning. He got Zach set up with a 10 day cycle of medication that should get the MRSA cleared out. We'll get the nasal swab done again next Thursday to be sure.
After that we'll re-schedule the surgery.
My new saying... "MPS - it's not just a job, it's an adventure".
Tuesday, October 7, 2008
The good egg
As I mentioned before, Josh is a good egg.
Now, there are times that either his mother, myself, or both of us have to suppress the temptation to strangle him - but overall he's a pretty good kid.
Why am I getting into this subject? Well, it has occurred to me that with all the things we have to deal with for Zach, and the fact that Brandon pretty much hogs as much attention as possible, that Josh sometimes gets the short end of the stick.
I know we're far too quick to get on his case at times about the typical stuff - homework, keeping his room clean, getting along with his brothers, etc. Actually, he's probably far "better" of a kid than we realize. He always helps out with Zach and Brandon when we need an extra set of hands, he'll take care of chores around the house (even if we do have to ask more than once at times...), he gets good grades... I guess we should be thankful.
He's kind of in a rough situation I guess. Zach's condition is something we have never hid from Josh. He knows all about MPS, and sees its effect on Zach every day. It's not fair that he has to deal with these type of issues so young in life, but it wouldn't be fair (or even possible actually) to keep him in the dark. His teachers always remark how mature he is, and how conscientious he is about his classmates feelings. I guess we're not doing too bad of a job raising him.
Josh does inject humor into our lives though - he's good at that.
Although he has mostly outgrown it, Josh has the habit of sleepwalking. Since I'm one of those people who never seem to go to bed before 1 or 2 in the morning, I'm often awake to witness these nocturnal adventures. Well, without going into too many stories let's just say that preparing to walk out the front door to go to school (backpack in hand) while wearing nothing but pajama bottoms, and peeing in the trashcan in his room because he thought he was in the bathroom just scrape the surface.
Personally, I laugh my ass off when he does this stuff. He denies that it ever happens. One of these days I'm going to have the video camera charged when he goes walking and I'm going to post it on Youtube for his future girlfriends to see.
I was sitting with the wife watching TV the other day. All of a sudden we start to hear clapping coming from the bathroom, which was occupied by Josh.
Now, I'm not sure about you, but I have never done anything in the bathroom that I felt was worthy of letting out a cheer. A sigh of relief perhaps - but never a cheer. Not even when I managed to install a whirlpool tub in the bathroom did I let out a cheer. I'm pretty sure there wasn't even a minor home improvement project being worked on in there while Josh was clapping. Not replacing the caulk, not hanging a new shower curtain, nothing. Just normal bodily functions.
When he came out, you know I had to find out what was going on....
Me: Josh, let me ask you... why were you clapping in there?
Josh: It was the theme from Star Wars.
Me: No, not what - why?
Josh: I don't know - just wanted to I guess.
Me: Well, may the force be with you then.
Sunday was the first night I actually let Josh ride the exercise bike. Man was that a mistake.
Little booger rode for more than an hour and covered about 13 miles. The only reason he stopped is because I made him.
You see, I was afraid he was going to injure himself. No matter what you think, I was not worried about the fact that he rode for an hour and then hopped off the bike like it was nothing, and how that might make me look bad. Nope, not that.
He did have one advantage though. He wasn't trying to balance a tasty midnight snack on the handlebars while riding.
I'm sure that accounts for the difference.
Now, there are times that either his mother, myself, or both of us have to suppress the temptation to strangle him - but overall he's a pretty good kid.
Why am I getting into this subject? Well, it has occurred to me that with all the things we have to deal with for Zach, and the fact that Brandon pretty much hogs as much attention as possible, that Josh sometimes gets the short end of the stick.
I know we're far too quick to get on his case at times about the typical stuff - homework, keeping his room clean, getting along with his brothers, etc. Actually, he's probably far "better" of a kid than we realize. He always helps out with Zach and Brandon when we need an extra set of hands, he'll take care of chores around the house (even if we do have to ask more than once at times...), he gets good grades... I guess we should be thankful.
He's kind of in a rough situation I guess. Zach's condition is something we have never hid from Josh. He knows all about MPS, and sees its effect on Zach every day. It's not fair that he has to deal with these type of issues so young in life, but it wouldn't be fair (or even possible actually) to keep him in the dark. His teachers always remark how mature he is, and how conscientious he is about his classmates feelings. I guess we're not doing too bad of a job raising him.
Josh does inject humor into our lives though - he's good at that.
Although he has mostly outgrown it, Josh has the habit of sleepwalking. Since I'm one of those people who never seem to go to bed before 1 or 2 in the morning, I'm often awake to witness these nocturnal adventures. Well, without going into too many stories let's just say that preparing to walk out the front door to go to school (backpack in hand) while wearing nothing but pajama bottoms, and peeing in the trashcan in his room because he thought he was in the bathroom just scrape the surface.
Personally, I laugh my ass off when he does this stuff. He denies that it ever happens. One of these days I'm going to have the video camera charged when he goes walking and I'm going to post it on Youtube for his future girlfriends to see.
I was sitting with the wife watching TV the other day. All of a sudden we start to hear clapping coming from the bathroom, which was occupied by Josh.
Now, I'm not sure about you, but I have never done anything in the bathroom that I felt was worthy of letting out a cheer. A sigh of relief perhaps - but never a cheer. Not even when I managed to install a whirlpool tub in the bathroom did I let out a cheer. I'm pretty sure there wasn't even a minor home improvement project being worked on in there while Josh was clapping. Not replacing the caulk, not hanging a new shower curtain, nothing. Just normal bodily functions.
When he came out, you know I had to find out what was going on....
Me: Josh, let me ask you... why were you clapping in there?
Josh: It was the theme from Star Wars.
Me: No, not what - why?
Josh: I don't know - just wanted to I guess.
Me: Well, may the force be with you then.
Sunday was the first night I actually let Josh ride the exercise bike. Man was that a mistake.
Little booger rode for more than an hour and covered about 13 miles. The only reason he stopped is because I made him.
You see, I was afraid he was going to injure himself. No matter what you think, I was not worried about the fact that he rode for an hour and then hopped off the bike like it was nothing, and how that might make me look bad. Nope, not that.
He did have one advantage though. He wasn't trying to balance a tasty midnight snack on the handlebars while riding.
I'm sure that accounts for the difference.
Monday, September 29, 2008
They think I don't know...
I have a sneaking suspicion that I may be on to a conspiracy being perpetrated upon us by a well known grocery chain…Publix.
The instrument of deception - That cheery scale that stands happily at the entrance to their stores like a Buckingham Palace guard.
You see, I have been exercising furiously (well – occasionally at least) for the past month or so. Yet, when I step on the scale every Saturday during our weekly grocery run, I am seeing no drop in my weight.
Some might just pass this off as I haven’t been at it long enough, or that I really should be doing it EVERY night, or that a post-exercise victory bowl of ice cream isn’t helping. Little do those people know the depths of the deception Publix would stoop to in order to increase their profits.
I realize some of you think I’ve lost my mind, but follow me here…
Let’s just say you happen to be a bit overweight, like me for example. You step on the scale strategically placed at the entrance to the store and find out that despite your best efforts (such as for example, riding an exercise bike ALMOST every night, and limiting yourself to no more than half a pizza at a time), that you haven’t lost any weight.
Now perhaps you would think to yourself, “Damn, maybe I need to try some of that delicious low fat, no sugar, mini-portion food.” If you get sucked in by this ploy you end up spending extra money on all that “help me loose weight” stuff. (This brings up the question of why does food with less “stuff” in it cost more, but I digress…)
Through clever manipulation by some type of bio-recognition technology linked to the cash register, the scale knows if the next time you step on it whether you should have “lost” weight or not based upon the amount of that good for you stuff that you bought.
This is the only rational explanation for the fact that I have yet to lose any weight, and I’m sticking with it.
In other news, I managed to bike for 10 miles the other night. It took me just over 38 minutes. It’s actually not that bad if you are watching television and don’t focus on the timer on the bike. Well, I couldn’t actually see the timer with the plate holding my slice of pizza balanced on it, but if it works…
Okay, that’s a bit of an exaggeration, I didn’t balance a slice of pizza on the timer – well, not this time at least.
The instrument of deception - That cheery scale that stands happily at the entrance to their stores like a Buckingham Palace guard.
You see, I have been exercising furiously (well – occasionally at least) for the past month or so. Yet, when I step on the scale every Saturday during our weekly grocery run, I am seeing no drop in my weight.
Some might just pass this off as I haven’t been at it long enough, or that I really should be doing it EVERY night, or that a post-exercise victory bowl of ice cream isn’t helping. Little do those people know the depths of the deception Publix would stoop to in order to increase their profits.
I realize some of you think I’ve lost my mind, but follow me here…
Let’s just say you happen to be a bit overweight, like me for example. You step on the scale strategically placed at the entrance to the store and find out that despite your best efforts (such as for example, riding an exercise bike ALMOST every night, and limiting yourself to no more than half a pizza at a time), that you haven’t lost any weight.
Now perhaps you would think to yourself, “Damn, maybe I need to try some of that delicious low fat, no sugar, mini-portion food.” If you get sucked in by this ploy you end up spending extra money on all that “help me loose weight” stuff. (This brings up the question of why does food with less “stuff” in it cost more, but I digress…)
Through clever manipulation by some type of bio-recognition technology linked to the cash register, the scale knows if the next time you step on it whether you should have “lost” weight or not based upon the amount of that good for you stuff that you bought.
This is the only rational explanation for the fact that I have yet to lose any weight, and I’m sticking with it.
In other news, I managed to bike for 10 miles the other night. It took me just over 38 minutes. It’s actually not that bad if you are watching television and don’t focus on the timer on the bike. Well, I couldn’t actually see the timer with the plate holding my slice of pizza balanced on it, but if it works…
Okay, that’s a bit of an exaggeration, I didn’t balance a slice of pizza on the timer – well, not this time at least.
Monday, September 15, 2008
We interrupt this blog for a commercial message...
I must confess a sin.
I love to eat. It's one of my favorite hobbies, and I'm damn good at it.
Of course I'm sure this has something to do with my current weight issue, but we don't really need to get into THAT now do we?
Now if my favorite food was something non-fattening like - I don't know - rice cakes perhaps, then my eating hobby wouldn't be such an issue. However, like most un-slender people - I despise rice cakes, and would rather eat the bag they come in.
Unfortunately, my favorite food is pizza. Now, pizza will never be classified as non-fattening. (Unless it is one of those mini-hockey puck things Nutrisystem tries to pass of as a meal.)
Since it's not going to be good for me, at least I can make sure it tastes good. This has been a quest of mine for years. You see, I fancy myself a pizza connoisseur. Please don't insult my tastebuds with that delivery drivel. Don't tell me something that is cooked on a conveyor belt oven is "pizza". Nope, that's thin bread with canned sauce and pre-packed cheese on it. Tasty as a snack for sure, but really just a step above being in a box in your local grocier's freezer.
I've had a few decent pizzas locally. Some I would even have considered quite good. That is all in the past now. For now I have discovered the holy grail of Florida pizza - Anthony's Coal Fired Pizza. If Pizza Hut is your idea of good pizza, please do not even insult the culinary geniuses that run this place by walking through their door. You won't get it.
If you can appreciate fresh mozzarella and romano cheeses, and plum tomatoes on a thin crust with a charred edge - this is the place for you. The wife even likes this pizza, and anyone who knows her knows she doesn't like pizza.
Now, those of you who give them a try, be warned - the edge of the pizza will be charred. (That's burnt to you non-connoisseurs) It's supposed to be. If it bothers you, don't eat that part. When you cook a pizza next to glowing hot coals, char happens.
Okay, enough about Anthony's, and no I'm not on the payroll. (Although if they wanted to comp me a pie or two I sure wouldn't decline...)
The family and I embarked on a trip to the local bowling lanes this weekend. I'm proud to say that I was able to defeat the nine year old, the two year old, and the eight year old who has to bowl from his stroller. Earl Anthony eat your heart out.
The wife decided to sit out claiming arm soreness, although I suspect the truth is she did not wish to compete with a bowler of my caliber. When your average constantly hovers around the 100 mark it's hard to find competition willing to take you on.
I will say Zach gave me a run for it in the last game, but through my skill, finely honed by watching re-runs of old PBA matches on ESPN Classic while saying, "Ahh, so that's how they do it!", I was able to hold him off by one pin.
Not only can I ride a stationary bike, I can defeat pre-adolescents and a toddler at bowling. I'm so close to athletic perfection that it hurts - or maybe that's just my arm.
P.S. Our Mystery Diagnosis episode was on again last night, so those of you with a time machine can see it.
I love to eat. It's one of my favorite hobbies, and I'm damn good at it.
Of course I'm sure this has something to do with my current weight issue, but we don't really need to get into THAT now do we?
Now if my favorite food was something non-fattening like - I don't know - rice cakes perhaps, then my eating hobby wouldn't be such an issue. However, like most un-slender people - I despise rice cakes, and would rather eat the bag they come in.
Unfortunately, my favorite food is pizza. Now, pizza will never be classified as non-fattening. (Unless it is one of those mini-hockey puck things Nutrisystem tries to pass of as a meal.)
Since it's not going to be good for me, at least I can make sure it tastes good. This has been a quest of mine for years. You see, I fancy myself a pizza connoisseur. Please don't insult my tastebuds with that delivery drivel. Don't tell me something that is cooked on a conveyor belt oven is "pizza". Nope, that's thin bread with canned sauce and pre-packed cheese on it. Tasty as a snack for sure, but really just a step above being in a box in your local grocier's freezer.
I've had a few decent pizzas locally. Some I would even have considered quite good. That is all in the past now. For now I have discovered the holy grail of Florida pizza - Anthony's Coal Fired Pizza. If Pizza Hut is your idea of good pizza, please do not even insult the culinary geniuses that run this place by walking through their door. You won't get it.
If you can appreciate fresh mozzarella and romano cheeses, and plum tomatoes on a thin crust with a charred edge - this is the place for you. The wife even likes this pizza, and anyone who knows her knows she doesn't like pizza.
Now, those of you who give them a try, be warned - the edge of the pizza will be charred. (That's burnt to you non-connoisseurs) It's supposed to be. If it bothers you, don't eat that part. When you cook a pizza next to glowing hot coals, char happens.
Okay, enough about Anthony's, and no I'm not on the payroll. (Although if they wanted to comp me a pie or two I sure wouldn't decline...)
The family and I embarked on a trip to the local bowling lanes this weekend. I'm proud to say that I was able to defeat the nine year old, the two year old, and the eight year old who has to bowl from his stroller. Earl Anthony eat your heart out.
The wife decided to sit out claiming arm soreness, although I suspect the truth is she did not wish to compete with a bowler of my caliber. When your average constantly hovers around the 100 mark it's hard to find competition willing to take you on.
I will say Zach gave me a run for it in the last game, but through my skill, finely honed by watching re-runs of old PBA matches on ESPN Classic while saying, "Ahh, so that's how they do it!", I was able to hold him off by one pin.
Not only can I ride a stationary bike, I can defeat pre-adolescents and a toddler at bowling. I'm so close to athletic perfection that it hurts - or maybe that's just my arm.
P.S. Our Mystery Diagnosis episode was on again last night, so those of you with a time machine can see it.
Tuesday, September 9, 2008
Zach's surgery date
Have I mentioned that MPS sucks?
We got the call from Zach's surgeon's office that the surgery has been scheduled for Monday, October 20th. The surgery could take up to 6 hours, and he is expected to be in the hospital for up to a week for recovery. Before the surgery we have the lovely process of getting all of his doctors to agree he is healthy enough for the procedure, getting x-rays done, and numerous other joyous appointments. Ooooh goody.
The issue that gets me sometimes is that it's really doubtful that Zach even understands why he gets put through all this crap. He's gotten to the point now where he really doesn't like doctor's offices at all. I guess you can't hardly blame him though. Almost every time we go to an appointment it seems Zach would rather be any other place in the world. I'm with you on that buddy. When you've been poked and prodded your entire life, it's bound to get irritating.
There are some days I wish this could all be someone else's problem. It would be nice to be able to say, "Okay, YOU deal with it", but that's just not reality. No matter how difficult the decisions are, or how many appointments we have to go to - they are our responsibility. Nobody else can make these choices for us, the buck stops here...
As a parent you never realize just how responsible you are for your children until something goes wrong.
Jeez, reading through this post is depressing. You could get the impression that I'm a walking Xanax commercial or something...
Okay, for the lighter side of things.....
Somehow during my intense training regimen I managed to pull one of my calf muscles. This kept me off of the bike for a couple of days, but now I'm back in the saddle so to say. I don't know if I pulled the muscle riding the bike, or when I was stretching to get the potato chips from the top shelf in the kitchen cabinet.
I'm going to go with the cause being the bike. I've just started riding it recently, and I've reached for those chips hundreds of times before without injury. Seems pretty clear cut to me.
We got the call from Zach's surgeon's office that the surgery has been scheduled for Monday, October 20th. The surgery could take up to 6 hours, and he is expected to be in the hospital for up to a week for recovery. Before the surgery we have the lovely process of getting all of his doctors to agree he is healthy enough for the procedure, getting x-rays done, and numerous other joyous appointments. Ooooh goody.
The issue that gets me sometimes is that it's really doubtful that Zach even understands why he gets put through all this crap. He's gotten to the point now where he really doesn't like doctor's offices at all. I guess you can't hardly blame him though. Almost every time we go to an appointment it seems Zach would rather be any other place in the world. I'm with you on that buddy. When you've been poked and prodded your entire life, it's bound to get irritating.
There are some days I wish this could all be someone else's problem. It would be nice to be able to say, "Okay, YOU deal with it", but that's just not reality. No matter how difficult the decisions are, or how many appointments we have to go to - they are our responsibility. Nobody else can make these choices for us, the buck stops here...
As a parent you never realize just how responsible you are for your children until something goes wrong.
Jeez, reading through this post is depressing. You could get the impression that I'm a walking Xanax commercial or something...
Okay, for the lighter side of things.....
Somehow during my intense training regimen I managed to pull one of my calf muscles. This kept me off of the bike for a couple of days, but now I'm back in the saddle so to say. I don't know if I pulled the muscle riding the bike, or when I was stretching to get the potato chips from the top shelf in the kitchen cabinet.
I'm going to go with the cause being the bike. I've just started riding it recently, and I've reached for those chips hundreds of times before without injury. Seems pretty clear cut to me.
Tuesday, September 2, 2008
We're sweating now...
Thursday evening saw the arrival of a new addition to our living room furniture.... My new exercise bike.
My list of requirements for this bike wasn't all that large: 1. Strong enough to hold up my rather substantial body. 2. Cheap.
After a bit of searching, I came across my bike on the website of the Mecca of cheap - Walmart.com It had some good reviews from other..... large people I guess you could say. Most importantly, it hadn't collapsed under anybody's weight as of yet.
Now you thin people out there may not understand this consideration, but this type of issue is a reality for us non slender individuals. Case in point - Saturday night I leaned over a little too far while sitting in my trusty computer chair and inflicted a fatal injury on the poor thing. It was trying gamely to continue on, but from the time I heard the sickening crack come from one of the legs, I knew I would have to put her out of her misery.
I'd hate to see what havoc would occur if I did similar damage while pedaling madly on my exercise bike. I could just see pieces flying everywhere - possibly impaling innocent bystanders - or even worse, my television.
Comforted by its reported strength, I embarked upon the process known as "some assembly".
The first thing I noticed is that the eight year old Chinese kid who put the parts in the box forgot one simple item - the instructions.
Now, your average man would say, "Screw it - I can figure this out". Ten hours later, after considerable swearing, sweating, and threatening the life of the Asian engineer who designed the bike, he would end up with something that was a cross between a blender and a Picasso.
I however, am not your average man. (Actually I'm probably about 1.5 average men...) With my superior knowledge, and previous failures at non-instruction manual assisted assemblies, I knew there was a simple solution - the internet! A quick search found me a copy of the instructions, and soon after I completed a successful assembly.
Of course there was the thought in my head during the assembly that once I finished putting it together, I was actually supposed to ride the bike. This was not a pleasant thought.
As it turns out though, the actual riding hasn't been that bad.
I set a goal of 20 minutes a night for the first week or so, regardless of distance or speed. I've been able to keep that up this weekend without too much of a problem. Next week I'll bump it to half an hour.
My goal is to get to 10 miles a night within the next month or so. If I can keep up the same pace I have been doing, that should take me about 45 minutes.
After that I'll move on to actual running. Unless of course I have a heart attack before then.
My list of requirements for this bike wasn't all that large: 1. Strong enough to hold up my rather substantial body. 2. Cheap.
After a bit of searching, I came across my bike on the website of the Mecca of cheap - Walmart.com It had some good reviews from other..... large people I guess you could say. Most importantly, it hadn't collapsed under anybody's weight as of yet.
Now you thin people out there may not understand this consideration, but this type of issue is a reality for us non slender individuals. Case in point - Saturday night I leaned over a little too far while sitting in my trusty computer chair and inflicted a fatal injury on the poor thing. It was trying gamely to continue on, but from the time I heard the sickening crack come from one of the legs, I knew I would have to put her out of her misery.
I'd hate to see what havoc would occur if I did similar damage while pedaling madly on my exercise bike. I could just see pieces flying everywhere - possibly impaling innocent bystanders - or even worse, my television.
Comforted by its reported strength, I embarked upon the process known as "some assembly".
The first thing I noticed is that the eight year old Chinese kid who put the parts in the box forgot one simple item - the instructions.
Now, your average man would say, "Screw it - I can figure this out". Ten hours later, after considerable swearing, sweating, and threatening the life of the Asian engineer who designed the bike, he would end up with something that was a cross between a blender and a Picasso.
I however, am not your average man. (Actually I'm probably about 1.5 average men...) With my superior knowledge, and previous failures at non-instruction manual assisted assemblies, I knew there was a simple solution - the internet! A quick search found me a copy of the instructions, and soon after I completed a successful assembly.
Of course there was the thought in my head during the assembly that once I finished putting it together, I was actually supposed to ride the bike. This was not a pleasant thought.
As it turns out though, the actual riding hasn't been that bad.
I set a goal of 20 minutes a night for the first week or so, regardless of distance or speed. I've been able to keep that up this weekend without too much of a problem. Next week I'll bump it to half an hour.
My goal is to get to 10 miles a night within the next month or so. If I can keep up the same pace I have been doing, that should take me about 45 minutes.
After that I'll move on to actual running. Unless of course I have a heart attack before then.
Thursday, August 28, 2008
Added some links
If you take a look over to the side there, you will notice a few links I have added....
One is a link to a web store I created if you wish to purchase any Never Promised Tomorrow logo items. We get a cut of anything you spend there, so feel free (if not totally compelled) to buy a thing or two. It is going to cost approximately a bazillion dollars to get the whole NPT thing going from what I have been able to find out so far. Unfortunately my current fundraising program hasn't worked out, but they do draw those lotto numbers twice a week now so....
There's also a link to the MPS Forum run by Jessica, a mother who lost her daughter to MPS I (Hurler Syndrome). The forum is kind of a virtual meeting place for those of us dealing with MPS in its many forms. It's one of the first stops for many parents with newly diagnosed children.
There are also a couple of informative links for those of you who want to learn more about MPS.
One is a link to a web store I created if you wish to purchase any Never Promised Tomorrow logo items. We get a cut of anything you spend there, so feel free (if not totally compelled) to buy a thing or two. It is going to cost approximately a bazillion dollars to get the whole NPT thing going from what I have been able to find out so far. Unfortunately my current fundraising program hasn't worked out, but they do draw those lotto numbers twice a week now so....
There's also a link to the MPS Forum run by Jessica, a mother who lost her daughter to MPS I (Hurler Syndrome). The forum is kind of a virtual meeting place for those of us dealing with MPS in its many forms. It's one of the first stops for many parents with newly diagnosed children.
There are also a couple of informative links for those of you who want to learn more about MPS.
Friday, August 22, 2008
Marathon Info
A few people have asked for info on the (Half) Marathon. So, for those who asked, you can visit the website for the event at ... ING Miami Marathon to learn about the race.
For those of you who would like to come along for the ummm.... adventure, I'm going to work on getting some t-shirts made with that spiffy logo for everyone to wear.
For those of you who would like to come along for the ummm.... adventure, I'm going to work on getting some t-shirts made with that spiffy logo for everyone to wear.
Friday, August 15, 2008
Okay, I've been lazy
It's been a while since the last update, sorry about that. It's not that there haven't been things to write about, there have just been too many other things on my mind I guess.
Zach's surgery is going to be done some time in October as far as we know. We should find out the exact date in the begining of next month.
In other Zach news, we finally got his new stroller. It's a "Lightning" by Stealth Products. We've been fighting with the powers that be at United Healthcare for a year to get it. The whole story would take forever to type out, and it would just piss me off to re-hash it all anyway. Suffice it to say it has been a pain in the ass. Zach seems to really like the chair though, so in the end it's worth the fight.
It's really a strange fight for them to pick though. The stroller cost $2100. United is paying about $50,000 a month for Zach to have his Elaprase infusions, and has never given us an issue about it. Now, I'm not looking a gift horse in the mouth or anything. I'm thankful they have never had issues with his infusions, it just seems strange that they have no problems paying for that, but make us jump through hoops for something inexpensive. (relatively speaking of course)
On Tuesday Zach had what I think may have been a small seizure. His body was really tensed up and rigid. He wasn't really responding to us when we talked to him either. It passed after a few minutes, and he seemed no worse for wear after it was done. I don't know if it might have something to do with pressure on his spine, or possibly it's just another delightful symptom of Hunter's Syndrome.
As some MPS Society friends say, "MPS sucks".
I have to send a thanks out to Jen at Waggener Edstrom. She introduced us to Mary Carmichael, who wrote about Zach in Newsweek Magazine. Jen sent us a copy of the article beautifully matted and framed a couple weeks ago. It's currently occupying a nice spot on one of our livingroom walls.
As far as our run goes, Josh and I had a brief jog of about half a mile last weekend. Actually the whole thing got started because for some reason Josh actually though the could run faster than me. Let the record show I can still outrun a nine year old who is two feet shorter than me. Although it was far closer than I would have thought.
Now, if I can just manage to do that run 26 times in a row I'll have that half marathon licked.
Yea, I'll just keep a positive outlook on this...
Zach's surgery is going to be done some time in October as far as we know. We should find out the exact date in the begining of next month.
In other Zach news, we finally got his new stroller. It's a "Lightning" by Stealth Products. We've been fighting with the powers that be at United Healthcare for a year to get it. The whole story would take forever to type out, and it would just piss me off to re-hash it all anyway. Suffice it to say it has been a pain in the ass. Zach seems to really like the chair though, so in the end it's worth the fight.
It's really a strange fight for them to pick though. The stroller cost $2100. United is paying about $50,000 a month for Zach to have his Elaprase infusions, and has never given us an issue about it. Now, I'm not looking a gift horse in the mouth or anything. I'm thankful they have never had issues with his infusions, it just seems strange that they have no problems paying for that, but make us jump through hoops for something inexpensive. (relatively speaking of course)
On Tuesday Zach had what I think may have been a small seizure. His body was really tensed up and rigid. He wasn't really responding to us when we talked to him either. It passed after a few minutes, and he seemed no worse for wear after it was done. I don't know if it might have something to do with pressure on his spine, or possibly it's just another delightful symptom of Hunter's Syndrome.
As some MPS Society friends say, "MPS sucks".
I have to send a thanks out to Jen at Waggener Edstrom. She introduced us to Mary Carmichael, who wrote about Zach in Newsweek Magazine. Jen sent us a copy of the article beautifully matted and framed a couple weeks ago. It's currently occupying a nice spot on one of our livingroom walls.
As far as our run goes, Josh and I had a brief jog of about half a mile last weekend. Actually the whole thing got started because for some reason Josh actually though the could run faster than me. Let the record show I can still outrun a nine year old who is two feet shorter than me. Although it was far closer than I would have thought.
Now, if I can just manage to do that run 26 times in a row I'll have that half marathon licked.
Yea, I'll just keep a positive outlook on this...
Monday, July 28, 2008
Get to know us...
Just so everyone can put a face with the story, you can see Zach and the family featured in an episode of "Mystery Diagnosis" that was originally aired last year... Mystery Diagnosis .
Most of the scenes of Zach as a baby were actually filmed using his younger brother, Brandon. Even though Brandon does not have MPS, they still looked alot alike when Zach was Brandon's age.
Zach also has a mention in Newsweek magazine... Newsweek .
We're shooting for an episode of Oprah, but so far no luck.
In other news Josh and I have decided (okay, I decided he just agreed) that we should get a stationary bike to use for training for the race. I figure that once I bulid up a little stamina, and perhaps drop a few pounds that I can then progress to actually jogging.
Josh, who thinks it's fun to jog around the block while jumping rope AT THE SAME TIME, is apparently not worried about his own stamina. However he is a bit concerned about the prospect of having to carry me. He has floated the idea of bringing a wagon that I could sit in and be pulled just in case.
I'll have to think about that one.
Most of the scenes of Zach as a baby were actually filmed using his younger brother, Brandon. Even though Brandon does not have MPS, they still looked alot alike when Zach was Brandon's age.
Zach also has a mention in Newsweek magazine... Newsweek .
We're shooting for an episode of Oprah, but so far no luck.
In other news Josh and I have decided (okay, I decided he just agreed) that we should get a stationary bike to use for training for the race. I figure that once I bulid up a little stamina, and perhaps drop a few pounds that I can then progress to actually jogging.
Josh, who thinks it's fun to jog around the block while jumping rope AT THE SAME TIME, is apparently not worried about his own stamina. However he is a bit concerned about the prospect of having to carry me. He has floated the idea of bringing a wagon that I could sit in and be pulled just in case.
I'll have to think about that one.
Friday, July 25, 2008
Surgery for Zach
After meeting with Zach's ortho, Dr. Michael Jofe yesterday, we have decided to go ahead with spinal surgery for Zach.
Although it isn't typical for Hunter's patients, Zach has a severe kyphosis in his spine, and since it is progressing, there is a chance it could put pressure on his spinal cord. By placing rods along his spine, the surgeon is optimistic that this can be prevented.
There have been a few differing opinions on the need to have the surgery at this point among the different Drs. treating Zach. We thought about it hard, did our reasearch and came to the conclusion that this was the correct decision.
When you have a child with a severe medical condition you are often faced with these decisions, and they're really hard to make. Perhaps once I get "never promised tomorrow" off the ground helping parents facing these decisions can be one of the things I do.
Although it isn't typical for Hunter's patients, Zach has a severe kyphosis in his spine, and since it is progressing, there is a chance it could put pressure on his spinal cord. By placing rods along his spine, the surgeon is optimistic that this can be prevented.
There have been a few differing opinions on the need to have the surgery at this point among the different Drs. treating Zach. We thought about it hard, did our reasearch and came to the conclusion that this was the correct decision.
When you have a child with a severe medical condition you are often faced with these decisions, and they're really hard to make. Perhaps once I get "never promised tomorrow" off the ground helping parents facing these decisions can be one of the things I do.
Thursday, July 24, 2008
Wednesday, July 23, 2008
How the blog got its name...
I'm sure people will wonder how I chose the name for my blog.
Well, here it goes..
The phrase "never promised tomorrow" is something I started to truly follow as a philosophy when Zach was diagnosed. While he was in essence given a death sentence, I realized that doesn't make him any different than any of us. There is no guarantee that any of us are going to wake up in the morning. While Zach's life may end up being shorter than most, it doesn't mean that it should matter any less. Nor does it mean that he shouldn't get the chance to experience as much as possible in the time he has.
It's a phrase I use when talking with parents of children with life threatening illnesses. I want them to realize that none of us know how long we are going to be around on this Earth. If you spend all of your time planning for death, you forget to live.
We are never promised tomorrow, and in that sense Zach isn't different from any of us.
Well, here it goes..
The phrase "never promised tomorrow" is something I started to truly follow as a philosophy when Zach was diagnosed. While he was in essence given a death sentence, I realized that doesn't make him any different than any of us. There is no guarantee that any of us are going to wake up in the morning. While Zach's life may end up being shorter than most, it doesn't mean that it should matter any less. Nor does it mean that he shouldn't get the chance to experience as much as possible in the time he has.
It's a phrase I use when talking with parents of children with life threatening illnesses. I want them to realize that none of us know how long we are going to be around on this Earth. If you spend all of your time planning for death, you forget to live.
We are never promised tomorrow, and in that sense Zach isn't different from any of us.
Tuesday, July 22, 2008
Virginal Post - Oh crap why did I agree to this?
Greetings blog readers out there.
By way of introduction, my name is Robert. I'm a resident of South Florida, married with three sons.
My middle son, Zachary (8yo) suffers from a rare genetic disorder known as Hunter's Syndrome or MPS 2. It is a progressive disease that attacks all of the body's systems and in severe cases leads to a greatly shortened life span.
Support for families dealing with MPS and related diseases, and funding for research to develop treatments is provided by an organization known as the National MPS Society. The society also leads efforts to raise awareness of these diseases in order to ensure that children are diagnosed quickly enough to benefit from available treatments.
Of course this is a difficult undertaking, and one that needs both constant financial support, and efforts to spread awareness on the part of its members.
My oldest son Josh (9yo) has asked recently what we can do to raise money for Zach's medical needs, as he sees the daily struggle to provide him with care for his disease.
For some reason the thought popped into my head that I could run a marathon as a way to both raise awareness of MPS and funds for both Zach and the MPS Society.
This was probably not a bright thought.
In my glory days in high school I was a distance runner on the track team. I'd jog 2 miles to school in the summer for football practice, then jog 2 miles home after it was over. I went for a 10 mile jog one night just because I felt like it. I was in shape - no doubt.
However, this was 20 years and 100 pounds ago.
I'm not in that bad of shape I guess. Generally I don't break a sweat walking to the kitchen for some ice cream. I'm not short of breath going up stairs until at least the second floor. I've got sore knees and a herniated disk in my lower back and asthma.
In other words I'm your typical marathon runner.
Okay, reality check - maybe a marathon is too much at this point. Maybe I could do a half marathon? The Miami marathon at the end of January also has a half marathon, I could shoot for that. At worst I could walk it - how bad could it be?
So, as with all life threatening decisions I make, I talked this idea over with my wife. She was generally supportive except for a few concerns:
1) I would injure my back further.
2) I would injure my knees.
3) I would die.
If I could manage to avoid those pitfalls she gave me the okay.
Now this is the fun part. Upon hearing of my plan, Josh said he also wanted to do the run. Much like myself years ago, Josh is in good shape, loves sports, etc.
I have no doubt he can handle the run with some training.
Having a training partner should make things fun, however I'd rather have a running partner that could pick my big ass up and carry me to the finish line if needed.
I'm impressed that at nine years old he is willing to get out and do something to help his brother and others like him. Most kids his age are preoccupied with television and playstation. Well, in all honesty Josh is pretty into TV and video games himself but apparently he is willing to put down the remote in order to help raise awareness of MPS.
He's a good egg.
Now that I've dragged someone else into this folly, I guess I'm going to need to get into shape.
By way of introduction, my name is Robert. I'm a resident of South Florida, married with three sons.
My middle son, Zachary (8yo) suffers from a rare genetic disorder known as Hunter's Syndrome or MPS 2. It is a progressive disease that attacks all of the body's systems and in severe cases leads to a greatly shortened life span.
Support for families dealing with MPS and related diseases, and funding for research to develop treatments is provided by an organization known as the National MPS Society. The society also leads efforts to raise awareness of these diseases in order to ensure that children are diagnosed quickly enough to benefit from available treatments.
Of course this is a difficult undertaking, and one that needs both constant financial support, and efforts to spread awareness on the part of its members.
My oldest son Josh (9yo) has asked recently what we can do to raise money for Zach's medical needs, as he sees the daily struggle to provide him with care for his disease.
For some reason the thought popped into my head that I could run a marathon as a way to both raise awareness of MPS and funds for both Zach and the MPS Society.
This was probably not a bright thought.
In my glory days in high school I was a distance runner on the track team. I'd jog 2 miles to school in the summer for football practice, then jog 2 miles home after it was over. I went for a 10 mile jog one night just because I felt like it. I was in shape - no doubt.
However, this was 20 years and 100 pounds ago.
I'm not in that bad of shape I guess. Generally I don't break a sweat walking to the kitchen for some ice cream. I'm not short of breath going up stairs until at least the second floor. I've got sore knees and a herniated disk in my lower back and asthma.
In other words I'm your typical marathon runner.
Okay, reality check - maybe a marathon is too much at this point. Maybe I could do a half marathon? The Miami marathon at the end of January also has a half marathon, I could shoot for that. At worst I could walk it - how bad could it be?
So, as with all life threatening decisions I make, I talked this idea over with my wife. She was generally supportive except for a few concerns:
1) I would injure my back further.
2) I would injure my knees.
3) I would die.
If I could manage to avoid those pitfalls she gave me the okay.
Now this is the fun part. Upon hearing of my plan, Josh said he also wanted to do the run. Much like myself years ago, Josh is in good shape, loves sports, etc.
I have no doubt he can handle the run with some training.
Having a training partner should make things fun, however I'd rather have a running partner that could pick my big ass up and carry me to the finish line if needed.
I'm impressed that at nine years old he is willing to get out and do something to help his brother and others like him. Most kids his age are preoccupied with television and playstation. Well, in all honesty Josh is pretty into TV and video games himself but apparently he is willing to put down the remote in order to help raise awareness of MPS.
He's a good egg.
Now that I've dragged someone else into this folly, I guess I'm going to need to get into shape.
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