Twice this procedure has been rescheduled. Which was extra disappointing because once I decided to move ahead I was focused and eager. This time, so far so good. We are in the waiting room as instructed – gown and booties … Continue reading
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 … Continue reading
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. … Continue reading
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 … Continue reading
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 … Continue reading
(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 … Continue reading
(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 … Continue reading
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 … Continue reading
(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 … Continue reading
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 … Continue reading
(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* … Continue reading
- 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 … Continue reading
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 … Continue reading
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.
