Passing the time…

Posted Saturday February 19, 2011 by Melissa

Elmo hands

As some of you know, Case currently spends 9 days each month in North Carolina for the clinical trial to put the enzyme he is missing into his brain. How do we pass the time for 9 days in North Carolina each month, you ask? Well, other than the anesthesia, medical procedures, vital signs, infusions, neuro exams, urine collection, EKGs, and infusions:

  • Could it be the bounce house blown up and occupying 50% of the family room space of our hotel room?
  • Or could it be by stretching the tubs of theraputty (silly putty but with different colors and costing a lot more money because it is “special needs”) all around the room until it leaves stains all over our pajamas?
  • Or, could it be by skyping almost everyone we know and love, even if Case only pays attention for about 2 minutes?
  • Or, don’t forget the mountains of Barney videos occupying our suitcase (or, if you happen to “lose” them, the long list of Barney videos that can be accessed by Netflix on my computer in an emergency)?

ALL of the above. And, by playing the xylophone. Enjoy.

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