It’s been a busy year since our last update. As Rowan approaches two years old, here’s the latest in his SLC13A5 Epilepsy journey. Seizures Rowan’s seizures have been all over the place for the past year, anywhere from one or two a month to a dozen in a single day. If they stay under ~2 […]

Home! With thanks, as always, to the fantastic team at McMaster

A quick update on our stay. Rowan was extubated on Wednesday and was completely weaned from respiratory support by Friday morning. We left the PICU yesterday evening and we’re currently spending a couple of days down the hall in the hospital ward for monitoring. Assuming progress continues, we’re hoping to be home before the end […]

Just in case anyone’s been fruitlessly refreshing this page for the past six months, I thought I’d pop in with an update and a couple of photos from the last month or so. Last night, Rowan had a seizure which prompted a 911 call and an ambulance ride to Guelph General Hospital. It abated after […]

A quick fall update: Yesterday we finally got to meet up with the McMaster genetics team and get a couple more answers. Amber and my genetic testing came back and we’re both carriers for a rare genetic disorder that’s been linked with infant seizures. One of the mutations is known to cause this disorder when […]

Home once again, with thanks as always to the McMaster medical team!

I think I may have conditioned page visitors to expect daily posts when we’re in the hospital so… here it is. But really, yesterday’s update was the major one to catch you up on the last month plus all of the excitement in the last week. We’re still at McMaster but it’s a lot of […]

Since being discharged on July 9 the three of us have had a wonderful time at home, learning and exploring and figuring out our new life together. Besides a couple of probable seizures in late July, which prompted a slight dosage increase in one of his meds, we haven’t really had any health concerns until […]