Baclofen Pump- 5 weeks Post Op

I’ve been meaning to post a Baclofen Pump update for a long time but the weeks just keep flying by!  And to be honest, I’ve also been waiting for a turning point where I could report glowing reviews of this procedure and it’s effects, but that hasn’t come yet, so I figured I’d share our... Continue Reading →

Can I Just Opt Out?

Well, we gave the go-ahead to Oliver’s surgical team to schedule his Baclofen Pump placement procedure.   Ever since I sent the email I’ve been consumed with anxiety and second-guesses.  I know he’s having to work so hard  now to fight the dystonia and spasticity.  I hear him gasping for air because he is writhing... Continue Reading →

The Devil of Dystonia

For the first five years of Oliver life, we were able to find work a rounds for many of his physical limitations, essentially sweeping under the rug the level of his disability. When we wanted to hike, we threw him in a baby backpack. When we wanted to travel, we changed him on the baby... Continue Reading →

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