difficult times…

In recent days, Owen’s spasticity has been through the roof. He’s so tight and reflexive, his joints look like they are dislocated (especially shoulders and wrists). As I type this, I can hear his wheelchair creaking from the strain of his thrusts. He’s been up for days, with sporadic 2-3 hr naps. This is one of those situations where ‘trading’ with his dad has been good – Michael had him for the weekend, and I felt somewhat restored to deal with this all now. That tolerance is slowly fading though – too little sleep, too much wrestling with wayward limbs, too much worry as to what it’s all about.

Now that he has the intrathecal baclofen pump, I had expected he wouldn’t show such extreme posturing. Typically this would only happen if he has another underlying illness, like pneumonia. I don’t see that he’s sick though – just really tight. And the big worry, of course, is that it’s pump-related. Could there be an internal leak or disconnection? Always a worry.

That being said, I’ll make a disclosure which may explain things: I decided a couple of weeks ago to wean the last 2 mls of clonazepam – an anti-spasticity medication that was still lingering from pre-pump days. The day after he finished his last dose, this spasticity business started. Possibly related, but possibly not. I’m waiting to hear back from his physician to find out what to do next. I often make decisions without consulting his various professionals and this is the first time I’m regretting doing so. My challenge today will be to not blame myself for a potentially wrong decision – I just have to remind myself that I’m doing my best.

So two blog-related issues come to mind: If his high tone (spasticity) continues like this, it will definitely interfere with any assessment for technology access (often kids like Owen use tech devices for communciation). His appointment is next week, and I’m hoping we can resolve his physical issues by then. The other thought is this: he needs a communication system! How frustrating and deeply upsetting it must be for him (as it is for me) that he can’t express himself in his frequent moments of discomfort. Of course, his yelps and moans and vocalizations are expressive – but they don’t get us closer to understanding what he wants or needs. More validation we need to continue this journey…