(May 2011)  Before you continue, you should know that Owen passed away last October.   I am leaving the original page contents up so that older posts still have some context.

Thank you for visiting…

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(July 2009)  Again, most of the stuff below still stands, with the following updates:

• Owen’s intrathecal baclofen pump was explanted earlier this year, due to possible complications/malfunctions with the pump itself.  His journey with the pump is documented here.
• Owen was hospitalized in 2008 for several weeks (likely because of problems with the pump).  The hospital stay is described here.
• Owen has marked bone density loss – definitely has osteopenia, and may actually have osteoporosis.  We’re awaiting our appointment with the bone density clinic at Sick Kids’.
• X-rays now show that his right hip is completely dislocated.  Probably due to his increased spasticity and dystonia over the last year.  We’re waiting for a referral to an orthopedic surgeon to see what we should do next.
• Brain MRI shows that his brain status is likely static – no real changes over time.  Main result is that his basal ganglia, the control centre for movement, is  very underdeveloped and the rest of his brain is smaller than expected – which is what neurologists expect to see given the nature of his movement disorder.
• Owen does NOT have Uncombable Hair Syndrome.
• Owen’s current medication cocktail consists of:  oral baclofen, tizanidine, clonazepam, valproic acid, prevacid

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(Jan 2007) These are the bits and pieces of Owen which, when added up, do not (anywhere near) equal the sum of his existence. However, they are important details and often fascinating. I have divided this page according to his various diagnoses and labels.

spastic quadriplegia cerebral palsy

Basically, a fancy term to describe a communication disconnect between brain and body, noticed in all 4 limbs. It’s characterized (in Owen) by disorganized movements, sporadic rigidness in trunk and limbs, posturing (getting ‘stuck’ in various positions), inability to sit, stand, walk or hold up his head.

In order to help reduce his spasticity, Owen has a baclofen pump implant. Other sites describe it better than I can. Read about it here.

The cerebral palsy also impacts his ability to chew and swallow food. So he has a gastrostomy tube (g-tube), run by gravity (not a pump). Read about it here.

Deaf

Diagnosed with profound hearing loss at age 2 months, Owen’s primary receptive communication is through American Sign Language (ASL). For a number of reasons, his father and I decided to not give Owen a cochlear implant at the time we were offered. If you’re curious as to why, you can ask me – but this is not the forum for me to pontificate about its evils. It’s often a politically- and emotionally-charged conversation and I don’t want to digress from the main point: Owen is being raised as a Deaf child, and I am looking for the best way to support him and give him expression – even though he doesn’t sign himself. Owen does not wear hearing aids, nor does he undergo any manner of auditory-verbal therapy.

seizure disorder

Owen has documented seizures, but since starting Depokene several years ago, I don’t see them anymore. Possibly he has little ones in his sleep, or has absence seizures during the day. They’re so short and inconsequential (it’s not like he’s a pilot) that it’s something I often forget to mention on medical forms.

chronic lung disease

Another one of those catch-all expressions – this one to say he has weak and wheezy lungs. His breathing is rattly and can be very noisy. The symptoms are asthma-like, and since he can’t use puffers, he instead inhales steroids and anti-inflammatories through a nebulizer (a device that vapourizes inhalants). Because of his weak lungs and general inability to cough productively, he develops aspiration pneumonia about once a year, requiring about a week of hospitalization.

reflux

Again, well-medicated so not a daily concern. However, if he’s otherwise unwell or having a kind of seasonal allergy response, his mucous production is astonishing – which I believe could be related to stomach irritation due to increased acid production.

birth complications

Owen was born 8 weeks early. Prior to that, in-utero, he was diagnosed with hydrops fetalis – a condition that causes a fetus to retain fluid in its internal cavities and swell up. He was drained of the fluid through a surgical procedure 3 times before deciding he wanted to come out. He was born vaginally – and promptly ushered to intensive care, where he hibernated for 3 months – on a breathing machine for most of it. Many hypotheses were made and discarded during that time. The diagnoses that stuck are listed here. One theory is that Owen has an undiagnosed syndrome – a fated condition assigned at conception, as yet unnamed or unidentified. In fact, there are no other theories – Owen does not have a brain injury, any evidence of brain damage or any identifiable chromosome disorders.

uncombable hair syndrome

Yes, this is an actual syndrome. Owen will not likely be diagnosed with this, but definitely his hair is definitely uncombable. This was a suggestion apparently worthy of exploration by his neurologist. Since she mentioned it, I’ve been secretly hoping he has it. It’s a fantastic way to respond when people ask “what’s wrong with him?”.