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Time Is Motor Neurons

A father’s perspective: Our journey to finding a treatment

When Quinn, our soon-to-be-born daughter, didn’t make as much movement in the womb as our other 3 children, my wife, Annie, and I thought we had the “chillest” baby in the world. We joked that she was saving up all her energy for when she entered this world kicking and screaming. Quinn was born in August 2018, and she was the most beautiful little girl. Over the first few months, nothing seemed out of the ordinary. In fact, she appeared healthy and had strong upper body strength. But by the time Quinn’s 9-month check-up came around in June, her physical condition started to change.


This topic has 2 replies, 3 voices, and was last updated 9 months ago by DeAnn R.

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    • #20398
      Ryan Berhar
      Participant

      Hey everyone, here’s Kala’s newest column. She talks about being content with staying home while her parents travel. Honestly, this has always been a bit of a sore spot for me. I wouldn’t say I have wanderlust, but my inability to travel more bugs me. Hopefully airplanes become accessible soon, and traveling becomes more feasible. Where do you guys land? Do you want to travel more or are you content staying home?

      Sometimes My Parents Need to Travel, But I Love Staying at Home

    • #20399
      Halsey Blocher
      Participant

      I personally love to travel! We’re fortunate to have a large van (almost more like a bus) that all of my equipment fits in so that we can travel. It’s pretty hard on my body to go anywhere farther than a two day drive, but that still gives us a lot of option. We also have a really good care team who will stay with me so that my parents can go on an occasional trip by themselves. I’m also really looking forward to accessible planes. I would really love to travel out of the country, which is difficult without flying.

    • #20420
      DeAnn R
      Keymaster

      Honestly I do wish it was easier to travel.  I envy those who can just go somewhere on a whim.  With that being said I am happy and supportive to others traveling.  While my Dad was alive my parents went to Niagara Falls, Egypt, Alaska and Canada on their own.  Those are trips I couldn’t muster so I’m happy they were able to go.  I would like to plan a trip with my Mom on Amtrak or something but don’t even know where to start with planning such a venture.

      As far as being content at home, I am to an extent.  It’s hard though because we’ve already had a few cool days in Minnesota and I’m dreading winter.  It reignites the desire to move, although I’m conflicted about that as well because my home setup is pretty good.

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