About the Family

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We’re the McGillivray’s. Myself and Brett were both raised in southern Ontario but a job offer for Brett, right out of school, had us packing our bags and moving across the country. We soon were married and starting our little family. This blog began back in 2011, as a way to keep our family and friends back home, updated on our daily adventures with our first little man. Today we have three little men Clayton, Foster and Fletcher.

Our life changed dramatically overnight with the extremely rare diagnosis of our second son Foster’s SCN8A encephalopathy. Spending nearly six months in hospital with the onset of his disease, our little family blog became somewhat of a journal. And a critical tool in keeping our worried loved ones in the loop. Now, we continue to journey our life of unknowns. Making the most of our moments and trying our hardest to balance family life and hospital life. This isn’t a life of glamour or travel, just us doing our best to offer our unique family the most normal, loving experience we can.

Read more about SCN8A on the SCN8A Encephalopathy page.

 

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2 thoughts on “About the Family

  1. Kendra,

    I’ve spent the last two hours reading all of your posts. Thank you for sharing so much of your life and being able to verbalize what you’ve gone through. My son – who just turned 8 months – has infantile spasms and our neurologist told us recently he also likely has Ohtahara’s. What you went through – the aspirating, g-tube, EEGs, tests (oh so many tests), medications that are so hard on their little bodies and that change week after week – it’s what we’ve been going through for the past four months. I don’t think you write as often now, but I just wanted to let you know that your entries are still being seen and are still helping those of us out here just learning all of this. Our baby boy just got discharged from the hospital after a 6 week stay, and we’ve set up our pseudo hospital room. Feeling many of the same emotions you went through. So thank you.

    • Ann I’m so happy you commented, it’s been such a long time since I’ve updated this but I’m hoping to get back into it 🙂 I’m sorry to hear your little guy has been dealing with IS but glad you’re getting settled in at home now. Hope you’re getting the support you need at home, it takes a team at times but you’ll be a pro at all of this stuff in no time! You and your little one are lucky to have one another, you’ll be his biggest advocate and he’ll teach you more then you could ever dream.

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