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 around the pump and through the abdomen (from where exactly no one is sure yet) and so he may have needed surgery anyway.

the pump was removed because of owen’s health complications in the spring – origins are still unknown but most likely culprit was the pump itself.  we found out some weeks afterwards that owen’s pump’s serial number was one of a batch recalled by medtronic for potential problems in medication regulation.  we’ll find out in a few weeks of his pump was indeed faulty.  and no, we are not getting another one!

we’ve embarked on a series of medical tests that may shed some light on things, or at least rule things out.  tests include skin and muscle biopsy, MRI, lumbar puncture, host of blood tests.  they’re looking for indicators for rare metabolic diseases and muscle disorders.  some genetic, some not.  some degenerative, some not.  owen is an unusual child on many fronts – we’ve always known that! – but recent changes in his function and comfort have prompted me to finally say ok to these invasive tests, if for nothing else than a benchmark.

anyway, likely owen will stay at sick kids in toronto for another day or two, then home to convalesce.  i’ll update when there’s something new to report.

much love,


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