We are in an interesting quandary, but a good one to have I guess. We have many pieces of equipment and supplies that we acquired before the clinical trial and which were appropriate at the time and in contemplation of the expected course for a Hunter Syndrome boy.
Medical stroller, high-low base for the stroller seat (used for feeding or activities), a tray, boxes of diapers, a seat harness system for the car, etc., etc.
But now, for the most part, we don’t use these items anymore.
Case now walks most places, holding hands of course because he’s still quite hyper and impulsive. Case sits at the table to eat. Case gets his infusion sitting in an oversized chair. Case sits in a regular booster seat with a seatbelt in the car. Case only uses a diaper during infusion and at night and even then, he’s usually dry.
We don’t have much storage space in our home, so the question arises whether to keep these items. But I find it incredibly difficult to just “let go” and give, donate, or sell these items.
There is no clear cut path for where we’re headed.
Is it a lack of faith to hold onto these items just “in case”? Or do we believe that Case will now continue to learn and function at the level he’s at or better? And are we certain that this drug will continue to be available forever, get FDA approved, etc., because we know the course of the disease without this medication.
It is a good problem to have, I know, in the world of Hunter Syndrome. But it occupies my mind nonetheless.
I think I’m settling on the choice to live in the world of today, just as we’d done prior to the clinical trial.
Today, Case is doing well. Today, he doesn’t need these items. Today, they sit in our office, unfortunately as a constant reminder of what was, what is for many of our friends, and sadly, what still could be.
I think I’ll cover them with a blanket.