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Right is not always good

Something’s been bugging me about that recent visit with the neurology team at Toronto Western.  Bugging me enough that I have spent some time reflecting on exactly what it was.  I realize now my dis-ease has nothing to do with the conversation/meeting itself, but rather the very nature of the referral and its implications.   When [...]

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random2

Underwhelmed for once

We had our appointment yesterday to discuss deep brain stimulation with the neurologists at Toronto Western Hospital.  DBS is the latest thing in the world of neurosurgery – an implant that can control impulses from certain areas of the brain.  Successfully used to treat depression, dystonia and Parkinson’s in adults, it is now finding its [...]

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sleeping

Keep Calm and Carry On

As Owen gets bigger and more wiggly I can sense the forthcoming horrific decisions that are coming my way.  He is not that heavy yet (48 lbs) nor is he that tall (drat, I forget…  he’s short) but consider his size when he’s doing his best imitation of a greased seal and you’ll perhaps appreciate [...]

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DNRC01

Do Not Resuscitate

I had one signed this week.  (The form is signed by a physician, not the parent.)  After months of sitting on the document, I decided to finally just do it. It wasn’t actually a fraught decision;  I have always known my own limits for what interventions for Owen are acceptable and what are not.  The [...]

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waterpark

They’re almost always wrong

(Wild Water Kingdom.  Last few days of summer holiday.) I was told a few weeks ago that Owen’s hip was completely dislocated, as evidenced by an x-ray.  (He’s been getting x-rays every 9-12 months for the past few years, to keep an eye on his pelvis and legs.)   One leg  has become progressively shorter than [...]

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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 [...]

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neuron

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 [...]

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Sallyanne

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 [...]

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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 [...]

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frontal bossing

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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