Wednesday, February 17, 2010

Okay, time for a quick great news, cheesy news update.

Great news.  We got the results back from Ethan's enzyme test today.  Ethan's body has started to produce the alpha-L iduronidase enzyme that he's been missing!  Ethan's level was 129.  Normal is 300, but you don't need a full 300 to be asymptomatic, and we'll test again to see if Ethan's level goes up more.

What that means is no more weekly 6-7 hour enzyme treatments!!!  Yaay!  He'll still need to go in weekly for blood work, but they'll be much, much quicker visits!!!

The other good news is that some of Ethan's restrictions have been lifted.  He's now been cleared to go out in public, so he can go to the grocery store with us, or to the mall or a restaurant.  He still can't go to really busy, crowded places, or to a kids party and it will be many more months before he can go back to daycare.  But this is huge for us because it means that the four of us can go out as a family again!  I think tonight, we're all going to go out for dinner!

Other good news is that most of Ethan's dietary restrictions have been lifted, so he can pretty much eat anything that we're eating.  Which is not to say he can eat anything he wants, dirt, coins, paper, and cat food are still off limits!

Now for the cheesy news.  Ethan's 
creatinine levels are up again so he's got to go back on nighttime infusions!  This means 8a to 8p IV infusions.  Manageable, but a big, big drag for all concerned!  Creatinine is a measure of kidney function.  The doctors are saying that he's been on cyclosporine for so long that his kidney's aren't functioning as well as they should.  The nightime saline IVs will help keep him hydrated.

Once again we've taken 2 steps forward and one step back.  this time, one of the steps was a huge, mightly leap.  That Ethan's producing the iduronidase is huge, and the reason that we put him through all of this.

The saline is a drag.  But we'll deal with it.

In the meantime, as soon as we finish up here, it's home to walk the dogs and then out to dinner!

Thanks for checking in on us!