Saturday, October 22, 2011

Our Ongoing Travels

We're baaaaaaaaaaaack ...........

in Chicago.  For another check up for the drug trial.

This time Aliza came along.






Racing





A Hilton miracle has occurred.  Both boys were asleep, in a hotel room bed, before 8 PM.  They are becoming seasoned little travelers!

I spent some of the drive thinking about what I'd tell them, when they ask whether we are seeing changes in the boys' behavior or anything yet.  I will have to say no, not really.  A few little things, but nothing really amazing.

If anything they are still showing more signs of stress and anxiety than they were 6 months or a year ago.  AJ bit me a few times on the arm this week.  I haven't had bruises from bites from these boys since they were around 4 years old.  I dressed them alike today, and by noon AJ had to change shirts because he'd chewed and sucked on the sleeve, soaking it right up to his shoulder.

They know, by now, what happens on these trips.  Lots of fun will be had, but at some point we're going to have to visit the doctor and have their arms poked, and be otherwise prodded and manhandled by scary grown ups in white coats.  They know.

Still hoping and praying and crossing my fingers and toes that something really good comes of this.  That all the stress and anxiety of these trips is totally worth it in the end.  I know that whether or not it helps Zack and AJ, our participation helps get this drug approved and out on the market, where everyone can try it, and people with Fragile X everywhere can live much more fulfilling, social lives because of it.

But I'd sure love for us to be one of the ones who benefits from it.

2 comments:

Twin Engines said...

Me, too. I'm praying that for you, too. With all my heart.

Twin Engines said...

I'm praying that for you, too- with all my heart.

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