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April Update

  It's been awhile since I've posted.  Justin's situation is hard to write about, but I know there are people who want to know what's going on with Justin, my son.  In truth, he is getting sicker and weaker.  For awhile,he made great progress, talking, eating, and getting back into his power wheelchair.   Then he started getting weaker.  His left lung became covered with secretions, and he needed surgery to scrape things out. Then a CT scan revealed more new spine fractures (total of 7).  After that, he just hasn't been able to get over the hump.  This week, Justin decided to discontinue the weaning from the ventilator.  He is on full breath support and can no longer use the voice valve to talk without dangerous oxygen drops.  Pain medication has been significantly increased to help him deal with the pain. It's a tough thing for a 23-year-old to confront one's mortality.  We will continue this journey with Justin to the end to the best of our abilities.  We
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Little Cabin in the Woods

 
 
For the past few years, we have reserved one of the disability cabins in the Wisconsin State Park system, which allows my son Justin to enjoy the outdoors with us and to “hike” a few trails in his power wheelchair.  This summer, we spent two nights at Mirror Lake State Park, which is in the Wisconsin Dells/Baraboo region, a short drive from our home.

Justin would probably prefer to stay at home and play video games, but he has no choice in this matter.  The main characters in this adventure are Justin; his service dog, Elvis; my nephew, Zach; and my wife, Julia.



The cabins are an amazing resource and opportunity.  This one comes equipped with Hoyer lift, hospital bed, and full accessibility, including a roll-in shower. Rates are very reasonable.  There’s no television, but there’s a picnic table, bonfire pit, screened porch, and beautiful views.

We hiked all the accessible trails and a few that probably weren’t recommended for wheelchairs.  Justin is a daredevil in the power chair.  Somehow, he powered his way up a Nordic ski trail; I had to hold the back of his chair for the way down to keep it from tipping forwards and to hold it steady side-to-side.  After the bonfires, Justin still managed to find some indoor video game time.  Next year, Justin heads to college.  He has two in mind and has already been accepted by one with an offer for an academic scholarship.



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