Tag Archives: wheelchair

X-Wing Wheelchair Costume

Feeling Star Wars for Halloween?

Last year I decked Riley’s chair out as an X-Wing Starfighter.  This wheelchair costume doesn’t need great skill, just a little imagination and patience. Thought I would share how Riley’s X-Wing came together.

Valentine Wrapping

Classroom Valentine Art Feb 2015

The last few months of our journey have been a little extra challenging.  But now it’s time to resume Riley’s Smile.

Family Brunch

Out for Brunch at Collier’s Reserve Country Club, Feb. 15, 2015.

Last Thursday I discovered John working on Riley’s chair. 

Breathing Just Fine

She started out the day all confidence with a great big smile that drew Riley and I toward the school bus. As she struggled to lower the wheelchair lift, Riley’s bus attendant introduced herself to Riley ignoring the fact that he was not yet noticing her. I knew he would eventually warm to her as he figured out that he would be going to ESY (Extended School Year). The bus driver appeared in the open doorway to greet Riley and secure him safely on bus 27125.

Good Friday

My little First Communion Trainee had a requirement to fulfill: attend all Holy Week masses.  My requirement to fulfill:  maintain calm, attending services with both of my children should not induce anxiety. 

Snow Respite

Last fall, my sister Michelle started calling with a plan…. a plan to visit her family in New Hampshire.  What was she thinking? 

Wheelchair Cleaning by Daddy

Dinner was delicious!
Riley could not get enough.
After having his fill he sat and contemplated his meal from the safety of his wheelchair.
Then perhaps dinner was not quite sitting right and back it came.
The first warning arriving when his leg tremors appeared to be motorized.
Everywhere!  Remember The Vomitorium from the movie Stand By Me.
The scene had horrified me, little did I know how close to my reality it would become.
Trying not to slip across the tile and spread the stuff more than absolutely necessary,
I rush Riley to the shower.
Daddy has removed the wheelchair and all contents to the lanai.
Ronan has retired to a corner of the couch he hopes will not be reached by the shower Riley is causing, barricading himself behind the cushions and immersing himself in Ben 10: Ultimate Alien.
Soon, the floor is piled here and there with discarded clothes, burp cloths, towels, sheets and diapers.
The washing machine is again hard at work.  Daddy and Mommy run around in various states of undress.  Ben 10 gets a little louder.
The wheelchair is unrecognizable as each part that could be dismantled is strewn across the lanai.
The hose runs at full blast across the various pieces.
Somehow the stuffed frogs are spared.
 Riley’s medications refuse to stay down.  By 4:35 am we are all worn out but still hear his reaction to a muscle spasm triggering seizure #81.  No stopping it now without anti-seizure drugs in his system.
Diastat to the rescue.  Event ceases by 4:44 am.
Riley finishes this with a great big yawn,
as if to say “Oh, glad that’s over, I’m a little tired now.”
Daddy goes off to a full day of work after this eventful night.
No idea how he manages that.
Riley has the muscle tone of a wet blanket.
Cancel ESY and horseback riding at NEC.
Waiting by the door,
Ronan cannot wait to get to Vacation Bible School.
Wheelchair needs to be reassembled.
Another day in the Life of Riley.

A Day in the "Life of Riley"

“A Day in the Life of Riley.”  This expression certainly has a very different significance in my family than it’s intended meaning.

The enormity of my mission here strikes me this evening as I prepare simply to relate the events of our Monday.  It is not possible to fully share the experience; so I remind myself that the idea is a glimpse of the special needs life.  I also remind myself that this is a niche blog not a reference book by a professional…. and I may very well be the only one reading it.  Well – maybe my son Ronan, my younger son, will one day read it as the easiest way to understand his family dysfunction.  But hey, we all have dysfunction.   Perhaps I will simply not add any more concerns to the day and just make some “notes to self” for more information later.
Rising with Riley after a night of Riley and then getting out the door with Riley… more on that later.  No school today.  First appointment of the day is 8:30 am 45 minutes north  with the Pulmonologist, Dr. B.  Always take the first or second appointment of the day… more on this later.  On this very humid morning, Riley was dressed lightly.  As we headed north a heavy downpour slowed us down and drenched us while unloading from the car… more on this later.  Should have called this post “More on this later.”  We had a new experience this morning.  I put together his wheelchair and our supplies underneath the building entry while a pretty Latina unloaded her three young boys into the same space as quickly as she could to keep them dry.  Normally, most people pretend the child in a wheelchair is simply in their imagination.  As I brought Riley through the rain, she whipped a Whinny the Pooh blanket off her baby carrier  and threw in over the wheelchair before I could put him down exclaiming  “He’ll be cold!”  She touched my heart worrying over my son while her own waited.  She eventually accepted the blanket back when everyone made it inside.  I’m sure she has no idea how exceptional she is… but I will remember the few moments I was near her.
Time to go through the details of my day a little quicker.  They are important because the difficulty of getting  through a special needs day is so huge to me even after all these years.  However, it’s a niche blog and I have time.  There was a plan for the day.  As always it changes.  Breakfast for Riley in the exam room…  I feed him when and where I can.  Today I want to recognize how greatly I appreciate the professionals caring for Riley, though sometimes I do take issue:-)… more on the later.  Dr. B is wonderful with his gentle probing to ensure he learns all the detail he needs and has never failed to take his time to educate me further.  Today’s result: stop Pulmicort treatment for the summer, Riley’s lungs are clear!  Thank you, thank you, I will.  Second appointment of the day at 11 am, we move on the Occupational Therapy (OT) with  the beautiful and competent Miss J.  She is amazing and I learn from her each time Riley and I sit on her mat.  I am grateful for Miss J.
Somehow during the day with little thanks to me, Ronan has a play date and even tennis lessons.  Daddy is looking out for him!  Riley has many more activities on his regularly scheduled Mondays.  The Chiropractor and Horseback Riding are still left.  However, his little body doesn’t always cooperate.  As soon as he made it home and began lunch he began vomiting.  Unfortunately, he cannot warn us and this is an event in itself.  Vomit is one of the things that pushes my buttons due to our history… more on this later.  Eventually he seized for 4 minutes… oh, must remember to log this event.  Cancel everything!  That’s how it goes.
Tomorrow is the dreaded IEP.
This was not a day to write home about.  It was a day in the Life of Riley.  More on that later.

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