Wednesday, 21 August 2013

Did He Hear Me?

God, that is.  Because some strange things have been happening this afternoon.  And by strange, I mean good, which feels strange after my recent frustrations. About 30 minutes after I posted this morning, the pharmacy called to let me know that everything with the mitochondrial cocktail is set, they are formulating it and will send the 5 day supply shortly.  Score one for us!

Then, about 30 minutes after that, the NIH called.  I kid you not.  This is the first time they have called in the 2 years since I put Nate on the study list.  I called back and left a message, but unfortunately have not spoken with a person yet.  All I know is that she is with the neuroscience department.  Who knows if we’d even be interested.  As I stated in a previous post, I am no longer drawn to studies that provide researchers with general information about autism symptoms and progression/regression/remission.  If I had all the time in the world it would be another story, but clearly, I don’t.  I also don’t think it’s fair to Nate, or our family, to subject him to the same assessments over and over again, when they always yield the same results.  It’s depressing, it’s time consuming, and it certainly doesn’t benefit him in any way.

My requirements for study participation at this point have changed.  I will not enroll either of the boys in a study unless a) it involves pharmacological intervention that looks promising or b) it yields some new, useful information for my son.  An EEG I would do, an MRI I would do.  These procedures might explain something, and that, to me, is worth it.  Basically, even though it sounds a little selfish, there has to be something in it for us.

The timing of this call just cracked me up.  It’s likely that nothing will come of this, and even if it does I doubt it will yield “answered prayers.”  It’s nice to think that God is looking out for my son.  (S)he has given Nate quite a heavy load to carry, and he could use a break.  And mommy and daddy could too.

1 comment:

  1. I'm glad it turned out to be a better day for you Jenny.