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...

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.