Tuesday, December 27, 2011

Dressed for Hope

So what do you wear when you’re going for Hope? Do you dress up- to convey confidence, purpose and assuredness that Hope and Science will collaborate and that all will be well? Do you go casual-secure that Hope knows your heart, and Science has done it’s due diligence, and no special outer trappings are necessary?

Tomorrow is a big day for us. My big kid A begins the STX209 study at Rush University… we have 2, count em, 2!! blood draws. 2 times that we will have to hold our sweet son still so that a teaspoon or so of blood can be siphoned carefully out of his big little body and analyzed. Sweet A will have a physical, B and I will have questions to answer, forms to fill out… and then, the unknown.

Unknown to us, unknown to the amazing DR. EBK… will we get a placebo or the real deal?

Double blind placebo studies are fantastic… unless your a patient in the study who has HOPE, serious Hope for this scientific endeavor. Personal, tender Hope held close to your heart, Hope that this will help your baby be more himself, less hampered by the lack of protein caused by the mutation on his X chromosome. The mutation that you, his momma, unknowingly passed on to him.

The amazing, fantastic, blow my mind part of this situation is that after the 6 week study, we automatically qualify for the extension period- meaning, whether we had the placebo or the actual drug, after 6 weeks we get to take the real medication- the real deal- and see if it helps our A or not.

We can handle 6 more weeks- Hope is patient…and Hope is strong… and Hope stands on the shoulders of Love. And Love knows that whether the real deal works for us or not, sweet A is our amazing son… and no matter what, he always will be.

No comments:

Post a Comment