(Photo: Owen and Sallyanne) Another general update. Owen’s intrathecal baclofen pump was removed early February. The surgery itself was a great success – only 4 days in the hospital. He’d had a muscle biopsy as well (where a 2x2cm square of muscle was removed from his quadricep muscle – ouch). I think that probably hurt [...]
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email letter to my family
hi everyone, not all of you know owen had surgery yesterday for removal of the intrathecal baclofen pump; in case news traveled (and also of course to update you), the surgery went well and owen is doing fine. it was good timing to remove it – there was a large amount of spinal fluid accumulating [...]
6 months later: a ‘technical’ update
(photo: ‘frontal bossing’ on full display) I haven’t blogged in many months and yet traffic to the site remains steady. Thank you for your continued interest :) I promise to add another post next week about how things are *really* going. Until then, here’s a status update: The medication in Owen’s intrathecal baclofen pump has [...]
And so now…?
- a rare happy moment – A brief (recent) medical history and update: Owen is not responding to the medication in his intrathecal baclofen pump implant, either due to mechanical problems with the pump/catheter or changes in how his body processes the medication. Over the course of many weeks in the hospital, he experienced what [...]
Day 27
We’re still here. Easing quietly into Week 5. Finally time for a brief summary: I brought Owen to the hospital after a long night of fitful tremors and extreme spasticity. The spasticity I’ve seen before – but that was pre-baclofen pump implant. The tremors were new. My first suspicion was the pump – some element [...]
Day 14
I’d rather tell the story when I know how it ends. Mostly pictures for now. Above: Before the delightful ‘nasal trumpet’ was removed. These 2 photos were taken this evening. Definitely improving. I can tell because he’s finally smiling.
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 [...]
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Recent Comments
6th Jul 10
The word 'random' strikes me. As actual for the reality.
5th Jul 10
That's an enlightening and sobering post. I keep thinking about whether we would have done the surgeries Ben had in ...
4th Jul 10
Thanks for your comments Pamela and Claire... I frequently hear stories of patients (and parents) dissatisfied with their encounters with specialists ...
3rd Jul 10
Wow, what a difficult post. I've read it over a few times and I get it. We are, ...
3rd Jul 10
Wow. As someone also navigating the Ontario medical system (with a younger child), I really appreciate the insight of ...
4th Jun 10
awesome photos. Very excited you got away to NYC. I would have a very hard time consenting to treatment that I ...
3rd Jun 10
Hey Louise, I would certainly guess it's been done more in the US - but everything at this point is anecdotal. ...
3rd Jun 10
That's very disappointing -- especially because of the incredibly vague responses re risks and benefits. It's easy for a surgeon to ...
2nd Jun 10
"I guess that saying is applicable here: when all you have is a hammer, everything looks like a nail. ...
10th May 10
I agree! And appreciate the honesty in both of your blogs.