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.
Thursday, August 28, 2008
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...
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