(Another random photo of the boys – eastern Beaches in Toronto.) As I mentioned in my last post, I’ve received a few messages from readers sharing their stories about their own children (presumably all with disabilities) who have died – some recently, some long ago. I was moved and honoured to receive these stories, and [...]
After the media frenzy
(another random image: Owen in the rain) Thank you to everyone who wrote to me after seeing my and Owen’s story on CTV. Whether linking through the station’s website or by Googling my name, many of you took the time to seek me out and share your thoughts. I think about what it must take [...]
Canada AM appearance
Click on the image above to see the full segment, including live interview. July 16 – seems the links have moved – link to Canada AM (above) is correct. Link to CTV News segment is here.
CTV website article
I didn’t think an article would be written after all, but it was… Click on the image to read the full article. It mostly captures the telephone interview; only 1 or 2 quotes made me cringe :) I suppose they were accurately recorded, but the subtle ‘spin’ doesn’t feel exactly right. Oh well. Good news [...]
TV Appearances
Sunday July 5, 11:00 pm – CTV News, Health report (taped segment, reported by Avis Favaro) Monday July 6, 8:00 am – Canada AM (live interview) After being quoted in a recent edition of Bloom, a Bloorview publication for families, I was contacted by CTV. They were interested in interviewing me on the topic [...]
Oh that? It was nothing after all.
(This photo has nothing to do with the following post.) Sorry – I posted the MRI results and left everyone hanging. Turns out the results don’t really indicate anything in particular. The generalized atrophy simply means that his brain is smaller than is expected at his current age. And one part of the brain, the [...]
MRI Brain Without Contrast
FINDINGS: Previous MRI study dated 3rd March, 2000 was reviewed. Generalized cerebral atrophy is noted, with prominence of CSF spaces. Significant volume loss of the basal ganglia is noted, predominantly of the globus pallidus. There is also some volume loss of the thalami. Compared to the previous MRI, the volume loss in the basal ganglia [...]
life after pump
(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 [...]
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 [...]
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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.