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...
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