Fall Updates

No big surprise, but I am constantly struggling to find balance in my life.  As a caregiver who is navigating the rare disease world and ALL that entails, it is hard to find much time for myself (or to cook dinner for that matter).

I spend my days trying to keep Katherine’s little hands and feet as busy as possible, which is challenging for a child who cannot walk, lacks balance, and struggles with speech and fine motor skills.  Needless to say, I haven’t had much spare time to post lately, so I want to share some pictures of our fall here in Kentucky. As you will see from the photographs, Katherine is happy and loving our daily projects and adventures.

Also, our friend David Wheeler wrote a wonderful article about our family for The Motherlode blog in The New York Times – “When the Diagnosis is Rare, Parents May Know More Than Professionals.”  I encourage each of you to read it and share.  Thank you David for writing this important story.  We hope it will empower others in the rare disease community.

IMG_7318IMG_5167_2IMG_7430IMG_8505IMG_7855IMG_7375IMG_9210IMG_9299IMG_7131IMG_7121IMG_7365IMG_9201IMG_7468IMG_7730IMG_8518IMG_8049IMG_6370IMG_2026Happy fall, y’all!

3 thoughts on “Fall Updates”

  1. Hi team K.B! Just followed you here via the NYT article. We’re Brits with a little girl with scary similar presentation to KB. Including the non-verbal but helluva sense of humour! My wife blogs our fun-storm at welcometoholland.co.uk . Just wanted to say ‘hi’ really and good luck. And thanks for the tip on exome sequencing. I think that’ll be coming up at our next meeting with the boffins in spring.

    Love and empathy from this side of the pond.

    Team Arvo

    1. Team Arvo,
      So glad you found us! Thanks so much for contacting us. We will check out your blog to learn more about your little one. Love and empathy to you as well.

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