Hey look I'm still alive!

Man I suck at this updating thing. Too much going on - too little time.

Just wanted to stop in to let everyone reading know that we are having a fundraiser for Zach on November 3rd at Big City Pizza on Sheridan and Douglas Rd.

It's an all day event with proceeds from sales going to the Zach trust account to pay for his medical expenses.

The family will be there from 4-9 PM along with some entertainment, special guests (as if we aren't special enough ourselves...), and a bevy of raffle prizes.

You can all feel free to attend - or you can just send cash of course. (I'm looking at you Bill Gates)

Oh yea - I got a new fancy cell phone to replace the dinosaur I've had for 5 years. I wouldn't have done it, but the old one died, so I didn't really have a choice.

What does this mean to you? Well, now I can send out tweets from my phone... You can follow me on Twitter - username MPS2dad. I'm not really sending out many messages yet - but I'm going to one of these days. Most likely after I return from the procrastination awards ceremony.

Like I say, I've never finished anything before, but now I

Oh how the world has changed

It's been a while, and there is really too much that has happened to remember everything, so I'll just give the highlights...

Zach spent from March 12 through April 12th in ICU. This stemmed from an ER visit because he had been in obvious pain and having his shaking incidents for about 2 days straight. The ER docs had gotten enough medications into him to get him to stop shaking, and sent him upstairs to be observed for 24 hours.

While settling in to our room, Zach developed an obstruction in his airway and had to undergo an emergency intubation. He was placed on a ventilator while the doctors tried to figure out what was going on. A bronchoscopy showed that he had tracheomalacia - an area of the trachea that was collapsing. This is emerging as an issue for older Hunter's boys.

After a couple of days he was moved to a CPAP, and then a day later allowed to breathe on his own. That night we put him back on the CPAP because he seemed to be working hard to breathe. All went well for most of the night. Then around 4 in the morning all hell broke loose. Zach's O2 saturation dropped into the low 80's, and his heart rate went up to 150 (normal for him is half that). By the time the nurse came in his O2 sats were in the 70's and dropping rapidly. The doctor came in and tried to re-intubate, but Zach's airway was in such bad shape that it took him about half an hour to get a tube in the proper spot. It wasn't a pretty sight. I was on night duty, and called Janine to hurry to the hospital, because for a while it didn't look like Zach was going to make it.

The next day Zach had surgery to reduce the size of his tongue and to clear out some excess tissue in his airway. The thought was that this would create enough space for him to be able to breathe on his own again. After a few days for the swelling to go down, he was extubated to see if he could breathe on his own. Unfortunately this did not go well as his airway collapsed almost immediately. Again, the on duty doctor had a very difficult time getting him intubated. Fortunately, the doctor who had intubated him on the first day was just coming on duty. Because she had seen his airway before, she had a better idea of how to get the breathing tube in. So, back on the vent went Zach.

This was tough because we realized that Zach couldn't maintain his airway and would need to get a tracheostomy. He had that surgery done a couple of days later, and it went well. Despite numerous attempts, we couldn't get Zach to start eating by mouth, so we made the decision to have a feeding tube placed in his stomach. This procedure was quick and simple, and has allowed us to actually get Zach the proper amount of nutrition daily - something he desperately needed.

After a month we were discharged and went home to a world of new machines, medications, home care nursing, and endless monitors beeping.

Things went smoothly for about 5 weeks, then we had to bring Zach back in to the ER because his breathing was all funky (sorry for using all these technical medical terms). He spent a couple of days in ICU getting antibiotics for an ear infection that was brewing and getting his "digestive" system cleared out, because things didn't seem to be moving along very well.

A week after discharge while sitting in the living room, Zach's airway became obstructed and his nurse and I had to use an ambu-bag to keep air going into his lungs. Paramedics were called and we were transported via ambulance to Memorial West, and then after he was stabilized to Joe DiMaggio Children's Hospital (yet again).

I was sure, and a broncheoscope later proved me to be correct, that his airway was collapsing below the bottom of his trach tube, and blocking it off. So, we spent a couple of weeks in ICU while a new - longer trach tube was made. We are back home again, and things seem to be going well.

Unfortunately, because of his hospital stay we had to cancel Zach's birthday party. It was going to be held at Incredible Ice, which had donated the exclusive use of one of their rinks and party rooms. We felt bad because the management there had donated what would normally cost a fortune, and we ended up having to cancel on them. Oh well, I guess that's life.

Zach's shaking incidents (now pretty much determined to be "sympathetic storms") are still ongoing. He's been taking a boatload of different medications, but nothing has really done the trick yet. We have a neurologist appointment today, so we will see what that brings.

Briefly for the rest of the family news....

Janine and I are fine.

Brandon is doing well. He is excited to be attending summer camp with Josh and Zach this year. Of course Zach isn't going yet because of some nursing issues, but that's another topic for another time.

Josh has been doing well. He graduated from elementary school and is on his way to the Health and Wellness magnet program at Driftwood Middle School. He picked up a few awards at his graduation ceremony, and had straight "A's" for the entire school year. In sporting news, his baseball team finally nailed down a playoff championship this past season. I attribute this success to my skills as an assistant coach.

With the thought that things will remain stable, I promise more frequent updates. Of course I've promised that before and you see how well that went.

It's only been 3 months, stop complaining...

Well, I'm back. My extended absence can be blamed on various reasons, but I'll just chalk it up to a general lack of time and energy.

From all accounts, our ICU billing issue has been resolved. I didn't want to really start ranting before because the physician's group was trying to work with us to get United to pay their proper fees, rather than reaching into our wallet. I wanted to bite my tongue on the off chance that things would go our way, and as luck would have it they did. Crisis averted.

Zach has been doing "fair" I guess. We stopped giving him Topomax (anti-seizure) about a week and a half ago and started giving him Levsin (treats stomach issues). It was working well up until yesterday when Zach had a couple of bad shaking incidents. Other than those he has been more alert, eating better, and doing better with physical activities. I guess we will have to wait and see how things go from here. In other news I gave Zach a much needed haircut. I don't know how he feels about it, but most people have said it turned out well. I'm sure they're just humoring me. When I was actually cutting Zach's hair I was trying to figure out which Johnny Depp character I was channeling - Edward Scissorhands or Sweeney Todd.

As for the rest of the crew...

Josh is three days away from turning 11. It's hard to believe I'm old enough to have an 11 year old son, but it's the truth. A pool party is planned for Sunday. Josh wants you all to know the party is at capacity, however you can all still feel free to send him gifts. He is a big fan of cash. Us parents have covered the gift thing by buying him a new leopard gecko. This one is a male named "Tang" because he is a "Hypo Tang" genetic morph. (3 guesses as to what color he is). Since Josh's other gecko (Spot) is a female, I guess there is a chance of offspring. We'll cross that road at a later date I guess.

Brandon is rapidly approaching 4 years old. Of course if he doesn't watch his little attitude, he may not live that long. (Just kidding) His favorite pastimes are watching whatever show happens to be playing on Nick Jr. (He's a big fan of the Dora-Diego-Kai Lan-Wonderpets programming block), playing/fighting with Josh, dragging his toys into the living room, throwing tantrums, and trying to stretch bedtime out as long as possible. Whoever coined the phrase "terrible twos" probably didn't have a child that lived to the age of 3, or they surely would have re-thought that phrase.

The wife and I are doing as well as can be expected I guess. Nothing major to report on that front.

Guess I'll close for now. Hopefully I'll be a little more prompt with the next update...

We owe what?

Greetings faithful readers.

Today NPT brings you a discussion of a topic that has become a recent thorn in my side - balance billing.

For those of you unfamiliar with the term, it goes like this... You visit a doctor outside of your insurance plan's "approved providers". The doctor takes whatever payment the insurance company provides and then bills you for the difference. Seems fair and simple except for....

Let's say you have a medical emergency and visit the local hospital (part of your insurance plan) for treatment. You are seen by an ER doc who sends you for x-rays which show you need emergency surgery. The surgery is performed and after it is done you need to recover for a couple of days in ICU.

After discharge, you thank god for your insurance because the only cost you have to pay is for the deductable.

Whoa, not so fast there Bud.

A few weeks later you get bills from the ER docs (not part of your plan), the radiologist who read the x-rays (not part of your plan), the surgeon (not part of your plan), the anesthesiologist (not part of your plan), and the ICU physicians (not part of your plan). They have all gotten their payments from the insurance company for "out of network" benefits and are looking to you for the balance.

So much for an "in-network" hospital if none of the doctors you actually see there are "in-network".

So, in our case everything from Zach's surgery was covered by insurance except for the attending physicians in the ICU unit, who are not part of our "network". There is a battle brewing between us, United Healthcare, and this physicians group.

There are so many nuances in this whole issue to get into, and I'm going to need to break this down into several posts - so stay tuned.

Happy Birthday to Zach

You know, I did an update a couple of weeks ago that seems to have been lost somewhere in cyberspace....

Well, I'll just lump everything together.

Zach finally got his cast off, and is now in a removable brace.  He's also off of the Trileptal.  Life has been much better.  He's got his personality back - no more sitting around all day like a zombie.  He's eating much better, and overall just seems to be much happier.

I think this has much more to do with the change in medication than getting rid of the cast, but I'll take it either way.

So, like the headline says, Zach turned 9 yesterday.  Because he likes to be in water, Mom booked him a swimming party.  Of course the skies of South Florida were full of the natural event known as "crap look at all that freaking lightning".  Never fear though, mom knows better about our weather patterns - so the party was booked at the British Swim School, an indoor facility.  Zach spent about 2 hours in the heated pool, and looked like he had a great time.  He was joined by an assortment of family and friends, and all the kids looked like they had a really good time.  Some of the adults (humble narrator included) who weren't in the pool got to find out up close just how much humidity can be given off by a pool heated up to about 90 degrees.  It felt much cooler outside the building, which if you have never experienced summer afternoons in South Florida is somewhat like sitting on the surface of the sun while trying to breathe through a wet towel.

Still though it was a great party, sweating off a few pounds won't do me any harm.

In other good news, Janine passed her state exam to become a school administrator, and has submitted her final work in her final class for her master's degree.  So, by the end of the month she should be on track to getting an AP job.  Of course it is mandatory that I mention that she kept up a 4.0 GPA in grad school while working full time, raising the 3 boys, and dealing with all of Zach's medical issues.  So those of you out there reading - don't try the "I'm too busy excuse" to not go back to school...

Janine's school where she works did very well on this year's state exams.  Since becoming the "Reading Specialist/Leader/Coach/whatever they call it this year", the school has gone from a "D" school to this year marking their fourth "A" ranking in a row.  Congrats to the kids for doing well, and the staff for buying in to the program.

Well, I'm out for now.  Hopefully I'll have a nice report on a getaway Janine and I are planning for this weekend - sans kids.  Yes, just the two of us.

I just realized...

That I haven't updated you all on the wonderful happenings in our lives.

Let's see, umm... well uh, now that I think of it there hasn't been all that much wonderful to report.

In the "general" news category, Zach has still had some issues.  When he went a couple of weeks ago to be fitted for his brace, they removed his cast and discovered some really nasty skin ulcers on his back.  They were in a spot that there was no way for us to see, so we have no idea how long they had been developing.  Janine took Zach to Dr. Joffe who checked out the ulcers, and decided that they weren't too serious (they looked serious to me, but I'm a little less experienced than he is), and had us apply a disinfecting solution to them 3 times a day. (We're still doing this actually)  He put Zach in a new cast with a hole in the back where the sores are so they can heal.  Once that is done, he can be put in the brace.  We're looking forward to that.

Zach has still been having seizure-like episodes.  However, they aren't seizures - the 24 hour EEG he had after having a major not seizure that required us to call 911, and for him and his mother to spend a night in a complete hell hole says so.

The details:  Last Tuesday Zach was scheduled to go to Broward General Hospital for a 24 hour EEG.  This isn't our regular hospital, but it is where our neurologist is on staff.  Monday night after dinner, Zach started having one of his episodes.  It started out as they usually do, but progressed until it was pretty severe.  At one point his breathing started to get all strange, so we thought it was a good idea to call the paramedics.  By the time they arrived, he had almost returned to normal, but because he (like all Hunters boys) has a restricted airway - the paramedics thought it best that he be brought to the emergency room as a precaution.  Now considering that he was due to be in Broward General in the morning anyway, we asked if he could be taken there.  Unfortunately, the ambulance wasn't allowed to transport that far, and had to take us to Memorial West.

Now, West is part of the Memorial system - which is the hospital group where Most of Zach's other doctors are on staff, where he gets his infusions etc.  We like the Memorial system.  West isn't as good in our opinion as Regional - but at least all of Zach's records are available and his doctor's have access to him.  We hoped that since he was there that we could get the 24hr EEG done, and avoid going to Broward General.  Yea - no. 

The on-call neuro (who saw Zach when he was in ICU when he was first diagnosed with "seizures") didn't want to admit him because he was being followed by another doctor, and he didn't know his history.  Janine called Dr. Benke to see if he could help, but despite his efforts, none of the staff neurologists would admit Zach.  (Dr. Benke was less than thrilled by all accounts.)

After the ER doctors consulted with Dr. Epstein (our regular neurologist), it was decided to have Zach transported to Broward General via ambulance.  He and Janine got into the room there at about 3:00 AM Tuesday morning.

After taking the other boys to school, I headed over to the hospital.  Let's just say Broward General's idea of a children's hospital is nothing like Memorial's idea.  Not even close.  I could not have been less impressed.

The room was tiny - there wasn't even really room for the two of us to sit down.  We had the joy of there being another patient in the room with Zach.  That itself was fine, except for the fact that this particular patient was having some pretty severe psychotic issues.  Being the parent of a medically involved child, I have sympathy for other parents in a similar situation.  This child would go from moments of normal behavior to screaming fits with some really "colorful" language.  He would randomly throw objects or keep hitting the nurse call button.  Lovely.  He really should have been in an isolation room.  Not just for the safety and peace of his roommates, but to give the poor kid some privacy and dignity.  I wouldn't want my kid to be some kind of public spectacle like this kid was.

Did I also mention that I didn't see the nurse wash her hands when entering or leaving the room?  Good thing there isn't some highly contagious form of the flu going around.

The nurse also got on my nerves by trying to tell me how to give Zach a dose of Trileptal.  She brought the dose in an oral syringe and couldn't understand why I needed a spoon to give it to him...  Her: "It's easier if you just give it to him in the syringe."

            Me: "We can do it your way and he'll spit it out, or we can do it the same way we do it twice a day - every day of his life, and he'll take it without any problem.  Which do you want me to try?"

Note to medical professionals - You may be highly intelligent, have attended the best medical schools in the country,  graduated with highest honors, and have more "medical" knowledge than I.   However, when it comes to my child I am a goddamned genius. Please don't make me prove you wrong.

Okay, off the soapbox.

Anyway, Zach spent the day and night hooked up to the EEG.  He didn't have any major episodes - probably because he had one the previous night.  He had a small one with dinner, but after looking at the recordings Dr. Epstein doesn't feel they are "seizures" - well at least not in the sense he originally thought.  He has decided to take Zach of the Trileptal and have him try Topomax instead.  It deals with a different type of seizures in a different way, and may be more effective than the Trileptal was.  Since we started weaning Zach off of the Trileptal he has been more alert and happier, so at least we have that to cheer about.

In other news, Josh got his braces off - which he is quite thrilled with.  He has to wear a retainer at night, but other than that his teeth are good to go.

Our baseball season ended last weekend with a loss in the first round of the playoffs.  Given the fact that we lost our first 11 games before going undefeated the last month, this would go down as "a long season".  Josh played really well though, so it's all good I guess.

We took a quick weekend vacation to Orlando so Janine could attend a workshop to get ready to take the state school administrators exam.  She went to the workshop on Saturday and the men went to Seaworld.  Janine joined us in a return to Seaworld on Sunday, and we all had a pretty good time.

The next weekend Janine took the exam.  She doesn't have the results yet, but I am sure that she did fine.  She is scheduled to graduate with her master's degree next month. (A few months early)  Once she graduates and has her passing grade on the exam, she will be ready to work as an administrator.  Well - get paid as an administrator at least.  She's been doing a lot of administrative work for years, now it's time to actually have that job title.

Well, I guess that's all that's going on for now.  Catch you later.

All cracked up

Since the cast change a couple of weeks ago, Zach has been obviously been in some discomfort. A good bit of this we blame on his stomach issues. However we've also been pretty sure that his cast is a bit too tight as well.

So, yesterday after his infusion we too Zach to see Dr. Jofe, who agreed with us that it looked too tight. His solution was to split the cast from under each armpit all the way down to the waist, then to tape the halves together. This allows the cast to flex and expand a little while still protecting Zach's back.

The actual cutting of the cast scared the crap out of Zach. Literally if you know what I mean.

Well, we eventually got that mess cleaned up and we were on our way. Zach seems to be a little more comfortable now thankfully. He is going to see Dr. Tucker this afternoon to follow up with his "digestive" issues.

I'm still trying to figure out what motivates a doctor to want to specialize in the poop field?

I can imagine the converation when the med school students are sitting around discussing their future plans...

"I love kids, I'm going to be a pediatrician!"
"I'm interested in the heart, I'm going to be a cardiologist!"
"Poop! I love to deal with poop!" (This is the point where his friends decide to sit just a little further away from him...)

Anyway, Dr. Jofe is going to be taking Zach out of the cast and putting him in a brace in a few weeks. (Yea!) Hopefully that will make life better.

What a gas

Well, I think we may have found the cause of Zach's recent problems - gas.

We had noticed, and his physical therapist had mentioned that Zach has been burping lately. Seeing as though he has never done this before, I started to think that prehaps it is severe pain from gas that is causing his episodes and his lack of appetite.

So, a few days ago we started giving him Gas-X before meals. Since then, he hasn't had any major "episodes", and is starting to eat normally again. The Miralax is also starting to do its thing - too well at times...

Life is much better, but MPS still sucks.

Here's how things are going in our world....

It's been rough.

Zach had his cast change done last Monday. Due to a scheduling mix-up Dr. Kaufman was not available to sedate him. Although that probably had nothing to do with it, Zach had issues with the anesthesia he was given. The procedure itself went fine, but during recovery there were issues with his heart rate dropping. Apparently he was in too deep of a sleep. They got an IV with some sugar water flowing into him, and that apparently woke him up enough to keep his heartrate up.

He was sent home that afternoon, but slept the rest of the day and night - not waking up until Tuesday morning.

When he did wake up, he went into one of his "episodes". The full body shaking, screaming etc. Janine and I decided that these episodes had gone long enough, and decided to get to the bottom of it ASAP.

We were able to get an appointment to see Dr. Tucker who is a pediatric gastroenterologist for that morning, and with Dr. Epstein our neurologist for that afternoon.

Armed with a video of Zach's episode we headed off to Dr. Tucker's office. After examining Zach and seeing the video, he felt that Zach wasn't having a seizure in the typical sense. He felt that it may be a reaction to pain, and that the pain may be related to his stomach in some way. Most likely constipation in some manner. (Ever since his operation this has been an issue.)

He didn't feel an obstruction in the bowels, but had us take an x-ray Thursday while at ERT just to rule it out. Dr. Tucker told us to have Zach take the adult dose of Miralax to hopefully get his system moving. He also told us to try to get Zach to drink 4 bottles of Ensure a day to try to fatten him up a bit. (He's dropped a good amount of weight since surgery.)

Of course Zach has no desire to drink 4 bottles of anything. Since surgery, it has been really hard to get him to eat. I assume it has something to do with his stomach issue. Hopefully it's just constipation, and not something harder to diagnose like reflux.

At our visit with Dr. Epstein he viewed the video as well and did not feel Zach was having a "seizure". He couldn't be 100% sure without actually having him hooked up to a EEG at the time it happened though. He also felt that some sort of gastric issue could be the cause. His suggestion was to keep Zach on his anti-seizure medication for now, and see if by giving the Miralax, we are able to get the "episodes" under control. If that's the case, then we can take Zach off of the anti-seizure medication.

Of course this doesn't really address the suspicion I have that the anti-seizure medication may be part of the cause of the stomach issue. It's the only new medication he is on since the surgery. Aside from being in the cast, there is nothing "different" that I can think of that would cause Zach to not want to eat. The only logical choice is either the cast or the medication is upsetting his stomach. Which do you think would be more likely?

I really hope the Miralax does Zach some good soon. It's gotten to the point where I am worried that he is not eating enough to support his body. He's already really thin, he doesn't have any more weight to lose. I don't want to see him with some kind of feeding tube, but I'm afraid that if we can't get him eating soon that will end up happening. Depressing.

Have I mentioned MPS sucks.

Update time

Here's all the news that's fit to print...

Zach is doing as well as can be expected. He seems to have adjusted to his cast finally. Of course it is going to need to be changed in the next two weeks or so. Hopefully the new one will be similar enough to this one so that he won't notice a difference. We're hoping for him to be placed into a brace, rather than a cast, at some point - but he probably isn't ready for that yet.

Zach has been standing up and walking with assistance, which is a really good sign. He is still up on his toes though. I think we are going to wait until summer to get his ankles casted, but that's up in the air for now. Once that is done, he should be able to walk flat footed again.

In other news, Josh's baseball season is upon us. I've taken the plunge and am the head coach for the team this season. We've managed to lose our first two games by a combined score of 25 to 8, but hopefully we'll get it turned around here sometime soon. On the good side of things we can't get much worse! It's all improvement from here on out...

We took the kids to the Renaissance Fest last weekend. It's quite an umm..... experience. Brandon was a bit freaked out at first because everyone is in costume, and there is a ton of activity going on. He eventually got over it and seemed to have a good time. I actually felt bad for some of those people in costume because it was about 85 degrees out. (In mid-February - gotta love the South Florida weather.) The was even a guy walking around in a full suit of armor. I'm thinking that guy had to be really hating life that day.

Now, if you work there and have to dress in costume I can understand it. That's your job. What I can't understand though are the freaks that don't work there, but dress up in the costumes anyway. Are they trying to fit in better? Show their dedication to late 15th century Europe? C'mon people - that's like wearing a Mickey Mouse costume when you visit Disney World. No - the people working there don't think you're cool because you have "Renaissance" clothes to wear. They think you're a dork. Oh yea, they aren't impressed by the "Olde English" accent you are trying to use while ordering your frozen lemonaide either.

Never a dull moment...

Up until last night, the past week went fairly well for Zach.

He was eating fairly well, and seems to be adjusting to wearing his cast. He was back at school, and life has been getting back to its normal routine. (Well, normal for us at least.)

Then, just as we are getting settled to watch the SuperBowl, Zach started having what may (or may not) have been a seizure. He was shaking uncontrollably, hyperventilating, and his body temperature had shot up. After about 3 minutes we gave him a dose of Diastat per his neurologist's instructions, and called 911.

The friendly members of the Miramar Fire Rescue Department showed up within a few minutes and whisked away Zach and Janine to Memorial West. I followed a few minutes later.

By the time the ambulance arrived at the hospital, the shaking had pretty much stopped. We all spent the next 6-7 hours in the ER while trying to figure out if this actually was a seizure, if it was a seizure - what was the cause, was the Dilantin not working, why the remote control for the television I was watching would only allow you to cycle UP through the channels - even if you JUST WANTED TO GO BACK ONE DAMN STATION, and should his medication be changed?

Alas after a battery of tests, and much cursing at the remote on my part, we came away with not too damn much info. The neurologist wanted to switch his anti-seizure medicine, and we were sent off into the night (well, morning really) with prescription in hand.

We were in luck in that the nearest 24 pharmacy was only a couple of minutes away. Of course their computer system was down so they couldn't fill the prescription. Just our luck. Off we go to another pharmacy. When we get there we find out that Zach needs something like 120 cc of this medicine a month. However it is only dispensed in a 240 cc bottle. This doesn't seem like a big deal except for the fact that the insurance company won't pay for any more than a month at a time. Well, that and the medicine is about $200 a bottle without insurance. The pharmacist called the ER docs, but they basically said we were stuck because that was what the neurologist ordered and they couldn't change it... Now, realize this is all happening at about 2 in the morning. We decided that since Zach had been given a 12 hour dose in the hospital at about 12:30 that this could just get sorted out in the morning. (well, later in the morning)

As it stands, Janine was going to make some calls this morning to see what to do next. I haven't heard from her yet, so I assume nobody has been dumb enough to piss her off so far. Once she gets this medication thing taken care of, I'm going to have her try to find out why some moron would design a remote control that only allows you to switch the channels in one direction.

There's no place like home

Well, after more than a week of living in the PICU of Joe Dimaggio Children's Hospital, Zach finally came home Tuesday night.

After alternating nights at the hospital for that week, it's safe to say that both Janine and myself were quite sleep deprived. No matter day or night, there is always the same amount of activity going on in the PICU, and because the glass is so heavily tinted, there was little sunlight to be seen. Put that together for a few days and you really have no idea what time it is, or if it is day or night. Zach wouldn't really ever sleep for more than a few minutes at a time, which didn't make things any easier.

At one point after looking at the clock at seeing it was 9:30 I actually asked the nurse if it was AM or PM. It was really freaky there for a while... If they ever need actors to play the part of Zombies in a horror movie, they could do the casting right in the local PICU - wouldn't even need to use much makeup.

There are a million things that went on while Zach was there, but it would take forever to write, so I'll give it to you in a brief format...

After surgery Zach slept, then couldn't sleep, then wouldn't sleep, had a seizure (maybe), had another, got put on anti-seizure medicine, slept, itched, itched some more, slept, itched, itched some more, got some medicine for the itching, slept, itched, got more anti-itch medicine, slept, couldn't poop, got medicine to make him poop, didn't poop, got an enema, got another enema, still didn't poop, got more medicine to make him poop, pooped, pooped, really pooped, wow look at all the poop, slept, woke up, didn't sleep, got arm splints to stop him from itching, hit various people with the arm splints, got more anti-itch medicine, slept, woke up, complained about the arm splints, learned to itch face while wearing arm splints, got his cast, pooped some more, ate a small bit of food, pooped again, man where is all this poop coming from, got discharged.

That's it in a nutshell.

Did I mention that while Zach was in surgery, I got a call from the marathon people because the Miami Herald wanted to do a story on Josh? He was going to be the youngest runner this year. It killed me to tell the guy that we were not going to be doing the race. I know that given everything we have been through the past couple of weeks that I at least am in no shape to run. Still though, it would have been great to get our story in the paper. The guy I spoke to from the race said to get in touch with them if we are going to do the race next year and they will help with some publicity for NPT, so I guess it's not a total loss.

Quick surgical update

I only have a few minutes, but here's how things are going...

The surgery went well for Zach. It took about 3 hours for the procedure itself, and there weren't any real complications.

The recovery was rough for Zach for the first day. The doctors had trouble getting the right mix of sedatives and painkillers that would keep him comfortable, but I think they have it worked out now.

Zach had two seizures early yesterday (Tuesday) morning. Nobody is sure why. It's probably related to the surgery/pain/stress that he is going through. However it could just be MPS. In any case, he is on anti-seizure medication for now, and will probably continue on it once he goes home.

This morning (Wednesday) he is running a temperature of about 103. His blood work isn't showing any infection though. Janine was told this sometimes happens in fusion cases, and may just be the way the body reacts to the rods along the spine. The doctors don't seem too concerned about it yet. I'll know more when I get over to the hospital this afternoon.

'Tis the season for giving...

Blood that is.

In preperation for his surgery on the 12th, Janine and I had to donate blood in case Zach has a need for it.

Now, due to a rather unfortunate incident involving a lady at the Red Cross donation center that I still to this day refer to as "Nurse Pincushion", I have not donated blood since I was about 20 years old.

I got some giggles from the questionaire I had to fill out before making the donation. One of the questions asked if I had ever or had "sexual contact" with someone who took money, drugs or other payment for sex since 1977. Now, I'm pretty sure on the money and drugs thing - the thought that I am talented enough in that field to actually get paid for it is quite laughable come to think of it. Since I've been married for quite some time, I've never had a need to pay for sex. (Beg for it perhaps...)

Still though there is that "other payment" issue.... Does that mean if a guy takes a girl out on a date to a nice resturant and they end up doing the deed later on that evening? Or is that not "payment". These are the things that go through my head while I'm sitting there waiting on the nurse to enter my information into her computer. Obviously there are more pressing issues I should be spending my time thinking about, but that's just how my mind works.

As part of the whole donation routine, they give you a "mini-physical" of sorts. My blood pressure was 126/84. Not great, not horrible. Actually, it's usually at least 10 points lower than that, so I'm not really concerned. Pulse was 62 which I'm quite pleased with. It was closer to 90 before I started on the exercise bike.

When you donate blood, they also test your cholesterol level. I had to log in to the blood center website to get those results a couple of days ago. Considering that I'm not known for my healthy eating habits (Damn pizza - why can't I quit you!), I wasn't really looking forward to these results. I was expecting a number in the mid 200's. Enough to send me off to Lipitor land. I was actually paranoid enough about it to look up some of the anti-cholesterol drugs out there.

Did you know Lipitor has "accidental injury" listed as a side effect? As in "People who take this drug are at a higher risk of getting hit by a bus". I'm not sure how they measure that, but it's good to know. Crestor does not list "accidental injury" as a side effect, so that's obviously the one to go with. I'm an expert on "accidental injuries", I don't need any help in that department.

So, imagine my surprise when I logged in and found that my cholesterol is only 182. Safely in the good range. I'll chalk it up to genetics. I didn't get a good/bad level breakdown, but overall it's not that bad.

So on to the bad news...

Due to Zach's surgery, we have decided not to run the half-marathon on the 25th. There are just too many unknowns at this point to allow us to really dedicate the time needed to the race. We'll revisit the idea for next year. However, we have decided to enter into a few of the local 5K events. It's a long story, but Josh actually jogged over 5K on concrete, wearing baseball cleats after a 2 hour practice in about 30 minutes. Given ideal conditions I think he could probably shave close to 10 minutes off that time. We'll have to see how it goes.

I'll update on Zach's surgery as things progress.

New surgery date

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.

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.

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.

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".

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.

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.

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.

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'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.

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.

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.