Ready to Make a Wish?

Aaron's been talking a lot lately about going to Legoland in California.  We've been discussing how to get there.  Airlines are notoriously hard on powered wheelchairs.  Aaron says he doesn't want to travel without his chair.  Now that we've had a couple chairs and with Aaron's increasing reliance on them, we're right with him on those points.  California would take too long to drive to from Michigan, so we may end up waiting to visit Legoland in Florida when it opens.

Aaron is still in his loaner wheel chair from MDA.  The joystick control is on the left-side and can't be moved without new brackets and arm rests it looks like.  The tracking is terrible, it drives like a 5HP boat on the ocean.  It takes forever to change direction and when it does, it goes too far.  It's a 300 lb. sea-monster.

He's going to need a better chair if we're going to go out of town.  Cheryl's been hounding a couple of the local wheelchair dealers.  I say "a couple" because they are the only ones that deal in the chairs that match our needs.  Obviously their lives aren't in fast-forward.  What's the rush?

Updates:
Aaron is still able to walk to the next room, but then collapses in the nearest seat to rest his back.  I'm often helping him by supporting him as he walks.  Our house hasn't gotten any bigger and his chair won't navigate most of it.

MDA has offered to send a motorized hospital-style bed.  Aaron is having trouble sleeping comfortably through the night and is complaining of soreness in the morning.  The bed will help him rest his back when he's awake also without making him lay all the way down.  He's been having trouble breathing lately because of his weakening posture and I'm starting to think that bed-side oxygen might be needed soon.  Fast forward.

Sarah is excited to have Aaron's current bed as long as we replace the sheets and comforter she says.

The van's working great, except in the snow.  It's been the snowiest winter ever I think.  It's melted off the roads now, so the van is great again.

My sister, Michelle has gone way out of her way to provide real tangible help.  I love you Michelle, thank you so much!  She put up this site for us.  Please share it: http://www.giveforward.com/giveforaaron

Thanks for caring enough to read this!

Darius Goes West

An award-winning documentary of one how one kid with DMD (the same disease Aaron has) goes on a quest to fulfill his dream.  http://www.dariusgoeswest.org/playitforward/

"My Wheelchair"

Aaron updated his blog with a special post about how he felt when he got his first "real" powered wheelchair.  My Wheelchair.

What a week!

This week was a whirlwind.  It started on Monday (rather than Sunday as some people start the week) with the purchase of our new personnel carrier, a Toyota Sienna van with a Freedom Motors rear ramp.  We chose this van because it has a nice wide aisle between the middle row seats.  This is important because, in theory, Aaron could park his wheelchair right between the seats and have a nice view.  Who wants to be stuck in the back?

The middle row seats are comfortable enough for sitting in.  Some others we tried did not seem intended for human occupants (maybe gerbils).   Siennas have an excellent track record and drive well.  In fact we all agree it drives better than my car.

Cheryl deserves much praise for this purchase.  She worked for months with dealers, researching online and test-driving.  Hundreds of her hours were poured into this.  My big take-away: salespeople will offer what they want to sell you, not what you need.  They'll sell you things that don't exist.  They'll bait and switch.  Do you think that because we're buying this out of medical necessity they'd be compassionate and helpful?  Guess again.

We worked directly with a "conversion" manufacturer.  On the Friday previous, we toured the factory.  We talked to the lead engineer.  We poked and prodded and investigated the entire process.  They had dozens of car on the factory floor, all in different states of modification.  That was neat.  They spent 3 and half hours with us in the factory and giant indoor showroom.

We paid thousands of dollars less and got a better vehicle in the end.  They didn't try to tell us we wanted a different vehicle.  They didn't up-sell us, they didn't try to sell us add-ons.  They understood the vehicles and the chairs.  The sales guy drove out to Ann Arbor from Battle Creek to bring us the van and close with us at the bank.  If you need a wheelchair accessible vehicle, try Freedom Motors.

Thank you to those who very generously donated a total of $10k toward the purchase of this van.  We also got $3k from Michigan (this process took over 80 hours!).  We love our new van.  We feel free to go wherever we want, when we want.  We still owe the bank $10k, so if you're in the market for helping out a family in need, this is a great chance!  We're planning to post on the blog who donated toward what for Aaron.  If you'd like to be mentioned let us know.  I'm going to err on the side of your privacy unless you say otherwise.

Aaron's 'loaner'

On Tuesday, the very next day, we went to MDA because they had a "loaner" wheelchair for us.  It's an Invacare TDX3.  It's a bucket of bolts that barely works, goes skidding off randomly and weighs 300 pounds (it really does!).  For now though it's much better than the power-assist manual chair he had borrowed.  His arms are no longer bleeding, thanks to the MDA!  That chair was a huge step up from not being able to do anything, so we're heading in the right direction.

Like car salespeople though (yes sales-women are included!), wheelchair dealers are an unscrupulous lot.  They'll sell you whatever brand they have an exclusionary contract with.  These contracts should be illegal!  An Invacare dealer won't advertise they only deal in a single brand, they'll just tell you it's the best for whatever reason they think will work on you.  You better do your homework!

So we're in the middle of another couple hundred hours of research.  This is getting old.  What we really want is something like the Permobil Street.  Think about being a kid and having to choose a wheelchair. You have choice A) "Invacare", the name makes me gag.  It's hard to get past it. Choice B) The Permobil Street CORPUS has a picture of a dude getting a tattoo while sitting in chair decked-out in flame decals.  The Street goes 7.5 Mph, which is a little bit faster than an angry mom.  It goes through grass and mud and sisters and hills and restaurants.

In the comparison below, ignore the seat itself.  Focus on the base.  Which is built for going places?  It might be the one with headlamps and pneumatic tires, and flames!

Invacare TDX:  Nursing home edition.

Permobil Street: Baddass included.

Here's the rub.  Insurance will pay the price if the Street were an indoor-only type chair, but because it can be used outdoors safely and comfortably, they claim it is not "as" medically-necessary and limit the coverage.  This was a fun process to discover.  They claim to cover 100% of the chair, but the funny thing about 100% is that they cover 100% of what they want to cover.  They don't tell you how much that is either.  You have to get the dealer to tell you how much they want to charge.  Then after you buy it, you get to find out how much it's going to cost you and whether the insurance company decides to cover it at all.  I have a "gold" PPO plan with Blue Cross, Blue Shield, one of the best plans available.

So if you want to have a life, you're going to pay.  If you want to sit inside then you're totally covered.  The chairs cost the same.  I don't understand the reasoning.  Maybe they think people are going to game the system and play bumper-chairs in the parking lot with $20,000 wheel chairs.  Maybe people who want to go outside are libertarians.  Can you imagine amputees in Florida driving the chair on the right to the VA because they can't afford transportation, but they get a chair like that.  Why not give them something they can USE?  Our healthcare system folks.  It's run by economists, not health practitioners.

We have a dealer we've been working with that has no contract with either Permobil or Invacare.  He's helping us get a chair.  He's not an expert though in heavy-duty wheelchairs.  The Invacare dealer we know is lacking too and that probably influences how I feel about Invacare.  Invacare has an absolutely horrible web site too, and that strikes at my heart.  So more research is needed for this to end well.  We all "want" the Permobil Street, but does it want us?  Maybe if we're baddass enough... Maybe I'll open a tattoo parlor (with a really good web site).

Steroids

What you were thinking?

This is kind of long-winded, but it's the story of how a boy went from walking everywhere a few months ago to needing a wheelchair-accessible van and a powered chair in a matter of weeks.  These are things he'll need for the rest of his life.

In July of 2010, Aaron was becoming more and more confused.  Little things like asking him to turn off the light might send him into angry confusion.  His cheeks were puffing out, his feet were so swollen it was starting to hurt to stand.  His school work was suffering, he had stopped building anything but the most simple legos, he stopped doing art.  His brain was melting and his body was bloating.  He was becoming increasingly aggressive toward his sister, picking fights and hitting her.  He had even punched a teacher in the face (but that's another story).

His MDA (Muscular Dystrophy specialist) doctor would not acknowledge that the emotional problems he was facing were due to the steroids and felt his physical problems were not serious enough to warrant a reduction.  Aaron told us he couldn't live like this.  So we researched.

Here's what he was on:
20mg Prednisone (cortical steroid)
2mg Aceon, an ACE-inhibitor for heart function to offset high-blood pressure caused by Prednisone.
10mg x3 Propranolol, an anti-migraine medication.
vitamin-D supplement
calcium supplement (to help counteract the bone-density loss caused by Prednisone).

September 2010. Forget what you're doing, Aaron?  Notice: No wheelchair.

We tapered him off Prednisone over the course of about 3 months.  At the end, Aaron was beginning to show signs of mental recovery, but his strength was rapidly decreasing.  While Aaron's body was adjusting to the lack of Prednisone he told me every day that his life was slipping away.  I was freaking out about that, but if your body is weak and all you have is your mind, then you can't go around without a mind.  We asked him every day if he wanted to continue.  He said he couldn't live without his mind.

We found a new MDA doctor (our 3rd).  She told us we did the right thing by taking him off Prednisone.  She suggested trying another cortical steroid.  I'm skipping over another difficult period where we had to work for weeks to get a drug called Deflazacort imported from the UK.  His body reacted poorly to it right away.  His cheeks were flush, his heart rate was up.  He started acting mean to his sister, losing focus and control.  That was on a quarter of the recommended dose!  Now Aaron takes only some vitamin supplements that he'd probably do fine without.

During all this, we pulled him out of school.  His sister was already being home-schooled for other reasons I won't go into here.  It took him a couple months to learn to be a learner again.  Now he has his own blog.  He's mostly recovered from the academic destruction he's dealt with over the last couple years.  Things are looking better for his mind.

At the new-and-improved MDA clinic we discovered despite the steroids he was on, he should have had a powered wheelchair (with joystick control) and we should have had a wheelchair-accessible van - two years ago!  We should have all kinds of supports in-place that we either didn't know about, we were misguided on, or we just couldn't afford.

Aaron's strength is ebbing.  You'll see that pictures in September and before he was walking everywhere.  On Halloween, he rode his Amigo (thank you grandma Sue!) door-to-door.  People didn't know how to react.  What's a kid doing on a scooter and why won't he get off his butt and come up the steps for his candy?

He can't ride his scooter anymore.  MDA loaned us a power-assist wheelchair.  It worked great for December, but his posture is failing due to weakening back muscles and that's causing his arms to rub the armrests when he operates it to the point of bleeding.  You can't just tell a kid to not move and it's not practical to have someone move him.  It's hard to understand what this loss of control is like until it happens to you.

MDA Muscle Walk on Ford Field, January 2011.

So we need a van RIGHT NOW.  And we need a powered chair RIGHT NOW.  We're trying to figure out how to get Aaron in and out of the trailer-home-sized bathroom we have.

If you want to understand his needs, just imagine that if someone isn't there to move you, all you could do is remain sitting.  You can lift about a pound of weight to your shoulder, but not over your head.  You can get yourself dressed in the morning most days, but not at the end of your exhausting day.  This is today.  Tomorrow will be harder, compounding until you need a machine to breath at night.  Eventually that won't be enough.  Obviously, someone would need to be with you at all times.  Now imagine you are a kid.  Who do you play with?

Introduction

Dear family and friends,

I am the parent of a boy with Duchenne Muscular Dystrophy.  It took me a while to come to terms with identifying myself this way.  The truth is, if you have a child with an increasingly debilitating disease, your life is defined by how different it is from everyone else's.  It is shaped by bad news, doctor appointments, bad advice, good wishes, shattered dreams, desperate hope, lost time, lost relationships, isolation and general confusion.

This blog isn't about me though, it's about my son, Aaron.  It's not his blog.  This is my attempt to give you a view of what I, and my family, are going through from my perspective.

The title of this blog "A Full Life in Fast-Forward" relates to the frantic drive to give Aaron a life of experiences in the short time that he has.  His prognosis shows that he only has a few more years to experience the world in any real interactive way.  He's now at the age where he's able to appreciate and relate his experiences to the larger world.

This is my son Aaron.  He is a talented designer.  He hopes to become an engineer or an architect.  He is home-schooled because the public school system can't even begin to understand how to support his physical needs, let alone his emotional needs or learning style.  Because he is home-schooled he is not bound to the pace and schedule of the school system.  He is free, but he works hard as you will see.

Aaron's dragon puppet he made for Chinese New Year (Feb 3, 2011)

In this picture you will note that Aaron is about 9 years old, he turns 10 on March 3rd, 2011.  He is sitting in a wheel chair.  He is holding a paper mache dragon that he made entirely himself.  Directions here.  If you followed the link to the  paper mache dragon, you'll also see the lego model he made of himself holding the dragon.  His idea, his design.  You'll see other creations, essays and examples of creativity and long work on his blog.  This is why I call him a designer.

The reason I point this out is because people expect disabled folks to be stupid.  Admit it.  They sometimes are, true, but most aren't.  There are many who are brilliant.  There are many who are brilliant, but hard to understand because their culture is skewed by a very different life experience, one they must overcome or at least endure by being creative in the way the think and feel.  

Six months ago, Aaron wasn't in a wheel chair.  He could freely get in and out of the house, go on errands with us and take care of himself.

Recently though, life became much more difficult...