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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

New Orleans–Spring Break 2017



Last week, I traveled with my son to New Orleans for the high school’s band and chorus trip which takes place every two years.  While the rest of the students traveled in coach tour buses, we made the trip in the wheelchair van. A bus with a wheelchair lift was a possible option, but  taking one of those buses would have increased the trip’s cost for each student (fewer seats due to the lift). In the end, I’m not sure that it ended up any less expensive for the school district, given that our mileage expenses are to be reimbursed, but perhaps it was a way to shift costs from the students to the district. I actually didn’t mind that much.  I like to drive, and I prefer the van to a large noisy bus.

Day 1
We got up early on Monday morning and drove to St Louis, where we toured the City Museum during the early afternoon.  Unfortunately, while the museum was accessible, many of the activities were not.  The primary city architect exhibit was closed, so the main attraction were different slides and tunnels that are not meant for power wheelchair users.  The next scheduled stop was a shopping mall with a huge food court.  Justin and I elected to skip that stop and get a head start towards New Orleans.

We made it past Jackson, Mississippi to a rest area around midnight.  While I’ve camped in many different places around our country, this was my first “overnight” at a rest area.  It’s not something that I would probably repeat in a car, unless necessary.

Day 2
At 4:30 a.m., Justin woke me up, saying it was time to get back on the road.  Within five minutes after I started driving, Justin fell back to sleep again.  We drove until about 6 a.m. and then stopped at a Waffle House for eggs,bacon, potatoes, and grits.  After filling up with food, we felt much better and made it to New Orleans by 9 a,m. We joined up with the students on the buses at around 9:30 a.m.

The first stop was St. Louis Cemetery No. 1 and was actually one of the highlights of the trip for Justin.  Our tour guide was an older African-American woman who took a quick liking to Justin and tucked him under her wing for the entire tour.  The most interesting thing I learned on the tour related to the year and a day rule for New Orleans cemeteries.

Bodies are buried above ground in New Orleans due to the high water table.  For the first year and a day, bodies are placed in wooden coffins and then are stored in drawers intended for that purpose.  This is essentially a composting system.  Exposed to high temperatures and humidity, the bodies break down over that period and become much smaller.  After the year and a day, the remains are removed from the coffins and placed in the final resting place.  In this way, many bodies can be placed in a tomb.  The coffin drawers are then reused.  Very green, and they’ve been doing it this way for many years.



The tour concluded with Justin (now nicknamed “Speedy”) giving the tour guide a big hug.  Justin might protest a bit, but he is a kid that likes being in the limelight.

We then walked down to the French Quarter, passing Bourbon Street and ending up at Jackson Square.  The Fried Oyster Po’ Boy sandwich at Stanley’s was terrific.




By 3 p.m., we were finally able to check into the hotel in nearby Metairie, LA.  It was a good thing.  Justin’s wheelchair did not receive its normal overnight charge, so he was literally running on electric fumes.  We rested up for a few hours, recharged, and then enjoyed a nondescript meal at Hard Rock Cafe with the rest of the group before going back to the hotel for much needed sleep.


 Day 3:
On Wednesday, Justin sang with his choir at a residential facility for assisted living and memory care.


 During the afternoon, the choir sang at a local episcopal church and school.



For dinner, we enjoyed more fried seafood at Mulate’s Original Cajun Restaurant.  A Cajun band entertained afterwards, and many of the kids danced in front of the stage.  Accessibility here required some ingenuity.  Justin was able to access the bathroom by rolling through the restaurant’s kitchen as workers pressed up against the wall to let him through.

Day 4
The high school band was supposed to perform on Thursday morning near Jackson Square, but we were rained out about the time the buses arrived.  Then it was back to the hotel for awhile until it was time for the swamp tour given by Cajun Pride Swamp Tours in Laplace, LA.  Because it was still raining, we swapped the electric wheelchair for a folding manual chair bungee corded to the inside wall of the van.  Fortunately, one of the boats was accessible via ramp.  It was tight, but we rolled to a spot right next to the captain.

On the tour we saw several large alligators that the captain drew right up next to the boat by generous baiting with marshmallows.  He basically fed them right out of his hand when they got close enough.  The captain showed us the nicks on his hand, which occurred when he wasn’t quite quick enough. It was very entertaining.  Justin was able to hold a baby alligator that was passed around inside the boat.  Unfortunately, I don’t have any photos, leaving my camera behind in the car due to the heavy rain.

In the afternoon, the rain stopped in time for us to tour the Oak Alley Plantation.  Only the first floor was accessible.  Justin and I were able to cruise around the grounds and view the slave quarters.  That night, we enjoyed dinner at the Bubba Gump Shrimp Company restaurant back in New Orleans.  My food wasn’t that great, but the kids had a good time.

 Day 5:
This was our last day, so we checked out of the hotel in the morning.  We then toured the New Orleans Museum of Art (NOMA).



There were some interesting pieces, but Justin and I were done with it after 45 minutes.  We then spent a couple of hours enjoying the sunny weather at the adjacent Sydney and Walda Bestoff Sculpture Garden.





After eating lunch at the nearby Courtyard Cafe (Justin had alligator sausage, and I had crawfish etoufee), we toured Mardis Gras World where artists design and build floats for the next Mardi Gras. We were asked not to put photos online so as not to spoil next year’s parade.

The trip wrapped up with the Nachez Steamboat Dinner Jazz Cruise.  We weren’t sure if the boat was going to leave without us due to a freight train stopping on the tracks, blocking access to the boat.  After a 45 minute wait, the train finally started up again, allowing us to board.  The food was good, and the views were fantastic.  It was a great way to end the trip.

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