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 [...]
Filed under: medical, musings on January 14th, 2010 | 4 Comments »
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 standard [...]
Filed under: family, medical, musings on November 7th, 2009 | 5 Comments »
(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 the [...]
Filed under: medical, musings on September 15th, 2009 | No Comments »
(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 basal [...]
Filed under: deep brain stimulation, medical on June 26th, 2009 | No Comments »
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 has progressed. [...]
Filed under: medical on April 21st, 2009 | No Comments »
(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 2×2cm square of muscle was removed from his quadricep muscle – ouch). I think that probably hurt more than [...]
Filed under: baclofen pump issues, medical on April 8th, 2009 | No Comments »
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 around [...]
Filed under: baclofen pump issues, family, medical on February 10th, 2009 | No Comments »
(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 been titrated [...]
Filed under: baclofen pump issues, medical on January 25th, 2009 | 1 Comment »
- 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 [...]
Filed under: baclofen pump issues, medical on May 23rd, 2008 | No Comments »
Filed under: baclofen pump issues, medical on April 5th, 2008 | No Comments »