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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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 Justin has made an excellent adjustment to apartment living in Madison.  We are coming up on his lease renewal and putting together the paperwork to make that happen.  

He gets a small rent reduction because the developer earned affordable housing credits by offering a small amount of apartments at the 80% level for median income.  Of course, Justin receives way less than that in the form of Social Security income.  He needs to re-qualify each year for the rent subsidy, which is a paperwork pain but not an eligibility issue.  

We were hoping that he would qualify for either Section 8 housing or a Section 8 voucher by now, but fully accessible Section 8 apartments have a very long waiting list, even though Justin meets just about every "preference" possible for eligibility.   People don't generally leave those apartment until they die, locking in rent that is equivalent to 30% of the tenant's income or a similar voucher. 

Today was Justin's last day of work at a community center reception desk.  He is very proud of finishing the assignment after a rough start due to wheelchair issues.  He finally received a new wheelchair and has been putting it to good use by rolling home over four miles after work, if the weather is good.  He has applied for an Information Technology training and internship next, but that program won't start until fall if he gets past the interview. 

Thankfully, we had time to play after dealing with the paperwork issues.  We ordered pizza out.  I brought beer.  And we headed up to the rooftop patio.  The people residing in the penthouse next door are definitely market rate payers, but the roof patio is free to use for anyone in the building.  We're often the only ones up there.

The deep dish pizza was ordered from up the street.  My beer was Pulp Culture, an excellent hazy IPA from Working Draft Beer Company on the east side of Madison. The hose over Justin's shoulder is connected to a water bag on the back of the wheelchair.  Very handy and accessible for Justin, especially since he doesn't like beer.  

After stuffing ourselves, we took a walk in the park along the lake across the street.  Lots of people out on a hot and humid evening. 





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