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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

I Gotta Move Out of This Dorm

 

Julia and I planned to head up north for a few weeks.  A friend's son was getting married tomorrow in Ashland, Wisconsin.  The plan was to stay at a small campground on Lake Superior for a week after the wedding and then head up into Michigan without a plan for another two weeks. 

Covid struck the wedding party, and before you know it, the wedding was cancelled on very short notice.   Then Justin called.  It seems that he misunderstood his summer dorm move-out day and needed to be moved today instead of the end of August.  He appealed to his housing authorities for an extension, but there was no joy.  Justin got to move out of his dorm now.  

The thing about complete disability is that you collect more and more stuff, especially of the heavy, expensive medical kind.  And let me remind you that Justin is not able to participate in this process.  It was a bear of a day, and Justin's motorized hospital bed did its best to kill Julia and I today in the struggle to move it a few hundred yards across the road and up an elevator to a different dorm room, which was down a long and winding hallway.  

With any luck, this will not be Justin's last move this year. He is ready to take a break from college and move to the Madison area.  Justin found a roommate and a new apartment that he can afford.  The caregiver piece of the puzzle is also looking promising.   The building won't be completed until October 1st.  Lots of balls up in the air to juggle, including some governmental red tape, but there is blue sky emerging amongst the clouds for Justin and for us.  We would love to have him closer to home and still living his best life as an independent adult. 



Comments

greg said…
I think I need new glasses! I read that Justin was ready to move to the Manhattan area. Whaaat!!!
John said…
Compared to Whitewater (pop. 15k), Madison metro (pop. 680k) will seem like Manhattan to Justin.
Anonymous said…
Congrats on your bed wrangling. I've heard those motorized ones can get vicious.

Great tune! Thanks!

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