Hanging with Riley

The Ugliest Blog Giveaway Voting continues through the week.  Please visit Lady Jane Designs and cast your vote to help brighten up Riley's Smile.  Thank you!

Riley loves food.  Dinner is his favorite and feeding him can be quite challenging while he laughs and writhes.  He rides his wheelchair much like a first timer aboard the mechanical bull at the local country bar.  By the time I got out the video he was much calmer but you get the idea.  Much of the meal lands on the kitchen wall and rains down on both of us.

Over the weekend Dad and Riley had lots of one on one time while little brother was on an overnight playdate.

Yesterday morning Riley woke vomiting and soon started with an unusual seizure.  For once I had the wherewithal to video.

Our lanai is bursting with blooms and strangely they fill me with melancholy.  The white butterfly orchid was delivered to my the morning of Riley's birth by the kindness of a distant friend.  Each time the buds return I remember the anguish John and I were suffering when they first arrived.

The red Cymbidium rarely shows shares its blooms with us.  Florida is certainly not the proper home for this beauty.  It is one of the few Cymbidiums we held on to after our move from Southern California.  It reminds me of the time in our marriage when we were full of hope and great plans.  I remember long lazy loving days in Santa Barbara when we had the time and energy to enjoy each other.

Yes, we are making progress in regaining some of that hope and joy in life.  It is a process and a difficult journey.  For now, I must turn my attention to Riley.  Thankfully, he seems to finally be keeping down a meal.

We are all special... Stacie Wiesenbaugh

Riley's Week

Cheating the Stander

Dr. Steve's regular Monday with Riley... welcome Dr. Eric too.

Another day hanging out in a doctor's office for Ronan.  Thank goodness for the DS!

Riley sings to Miss Claudia.   She was in Romania far too long and he's very excited to have her back.

Waiting again... hey, get your own DS.

Naples Equestrian Challenge article today on

Magic of changing lives: Naples wine festival, pros team up to teach kids tricks

It's been a pretty good week... Stacie Wiesenbaugh

A Smile for Dad

Riley may still not be able to sit up... but connecting with his family has come a very long way.  Here Riley gazes back at dad and laughs for the camera.  Little miracles still happen.

Seizure #93

I have been counting Clonic Seizures.  There are so very many I missed but this is my attempt to keep track.  Tonic Posturing Seizures are completely beyond counting and we just help him through as quickly as possible and move on with our day.  Anyway, Riley had had some spasms in the night and was willing to sleep while I got some breakfast; while I was out of the room he went into a pretty big seizure.  After receiving the Diastat rescue medication he still went on for 15 minutes.  Holding him on my lap, I could feel the convulsions throughout his little body and see the discomfort across his brow as his eyes and lips fluttered and twitched.

It's hard to be thankful and appreciate life when our little one must live this life.  I comforted him quietly hoping to allow Ronan to enjoy his pirate ship building and for John to proceed with his diving plan.  But, John discovered us soon enough and wanted to cancel his day.  Please go.  We both need a little normalcy somehow.  I insisted he go on his way but I know he will fret about Riley all the day long.

This is no life.  No one deserves this.  Not Riley.  Not his family.  And the lectures to appreciate my life, family and blessings from the oh, so many individuals who have no idea what it means to live this life are not only unwelcome but resented.  Hey, heck of on invitation to participate here isn't it.. oh, well.  That's how I feel.

Fortunately for Ronan, my mom was willing to drop Ronan for his planned playdate.   He cannot spend his life cooped up as if he were special needs as well.

SeizureTracker.com: "November is National Epilepsy Awareness Month and the Epilepsy Foundation is asking everyone to Get Seizure Smart.  By taking and distributing the Get Seizure Smart quiz, you are helping us reach our goal of getting 5 million Americans seizure smart in 2011.  "



Not very thankful... Stacie

Our Life

It feels like we are drowning again.  John and I have been on catch up ever since the trauma of Riley's birth and the challenging life it left in its wake.

John did an amazing job as The Bootstrap Boogie volunteer photographer last Saturday evening.  Our computer is now filled with revelers in our barn and on the mechanical bull.  We expect to discover some of the shots in the Naples News this week.  Now we may need to redefine "tired" when it comes to John.

There has been plenty of stress and not the least of it being health.  Riley had a long challenging weekend - no one needs those details.  Not long ago John suffered a bad ear infection which we treated with antibiotics.  We thought it was taken care of... We also kept him from his passion during the healing process and he has not been diving in over two months.  Sunday evening his one and only filling fell out which was very strange.  Monday morning, while waiting for a flat repair he decided to walk over to the dentist.... missing work all the while.  He then discovered the infection and spread throughout his sinuses and was destroying his teeth as well.  He has now had a root canal and will be having a crown, another round of medication, and we hope that no other teeth meet the same fate.

In the meantime, I am struggling with the demands of taking Riley so frequently to meet with medical specialists.  Monday was the Pulmonologist.  It took the entire morning and as you can expect that was all driving and waiting.  Tomorrow is the Opthalmologist, but I find I must cancel.  I cannot manage it right now.  It's all about tracking and covering every one's butt.  But, it's at the expense of Riley's energy, my time and energy, the wear and tear on the jeep and of course the incredible cost of gasoline.  Do these sound like legitimate excuses.  Likely not.  But at some point we should get to live our lives rather than shuttling around to doctor's offices.

Not feeling so special today... Stacie

Appointments and Illness

There is so much I have planned for this blog and so much I want to say... However, there are a few problems getting in my way: primarily, time and energy.

On Monday Riley had his annual pediatric check up.  He did really well.  He is always so cooperative and pleasant.  This year, we opted to give him a flu shot.  Yes, it's controversial.  However, caring for a sick child with multiple disabilities is one of the saddest and most difficult experiences a person may ever encounter.  Trust me on this.  I've done it and I don't like putting Riley or any of the family through it if it can be helped.  A sick typically developing child may be challenging but it is nothing compared to going through it with special needs.

Our pediatrician is wonderful.  One thing we always cover is the well-being of Riley's parents - yep, that's John and I.  We ride an emotional roller coaster.  This is another on-going subject that I have been avoiding.  Admittedly, we are challenged by our role in life and being 9 years behind.  I do not actually care to delve into this today - in fact, I am unsure when I care to get into this.  For now, let's leave it at the fact that being a Special Needs Family is not particularly easy.  The conversation went on that some do handle it and some do not - it seems to be some individual parents are stronger than others.  I object.  I believe that it is far more than simply can you handle special needs or not...

The special needs community frequently uses the phrase "a bullet is a bullet."  Really, I do not think all bullets strike the same.  When your child can get him or herself to the table eat unaided, I do not believe the bullet did the same damage as all the others.  Fine, object with me.  This is my observation and this is how I feel. Perhaps all bullets are not created equally.

A few hours after a good report with Pediatrician, Riley came down with a flu.  As usual, joke is on us.  It has been a rough couple days.  Riding Monday evening had to be cut short as he began to whine as he was jostled around.  I happened to be side-walking with another girl in the class as I happened to be a little taller to be alongside her horse and the other available volunteer could reach Riley: my very first direct experience with any other special needs rider.  This was another surprise to me.  The rider also had multiple disabilities, and she was considerably older and large than Riley.  I had to mentally brace myself for the next half hour of hard work.  To my great surprise, she sat up herself and held her reigns.  I was simply there for safety.  No leaning on me.  No sneezing on me.  No pushing arms and elbows into place for proper weight-bearing.  This was unbelievably easy.  Could I possibly say to her family, "Wow, she's easy to work with!"  Somehow, I doubt they would agree.  Could they possibly know that I found side-walking with their child to be a breeze?

Oh dear, that paragraph got all sidetracked!  Where was I going with that?  Riley was sick.  And was he sick.  I was replaced as a side-walker to remove Riley from the ring.  Gathered up my people: my Mom, Ronan and neighbor Annie who now volunteers helping to groom and tack while earning her high school community service hours.  Then on home we went.  Riley and I were up and down throughout the night to keep his fever under control and attempt to stop the incredible leg tremors - oh, I know I've talked about tremors here and there in this blog - I better tag them because they're important.  When we weren't under the fan we were in my bed, my arms wrapped around him reaching on each side to pull up on the toes of both feet in an attempt to calm the tremors, but unfortunately adding my heat to his in the process.  Any wonder why some parents keep their special needs children apart from the rest of us... illness is truly horrible and this wasn't even a particularly bad event.

A rare event: Riley napping, and alone in his bed yet.

This has happened perhaps five times at the most in his lifetime.

Couple of posts to share today...
A post on respite for families - it's a lifesaver, I promise: Respite: An Interval of Rest by Special Needs Ministry.
To my great relief I am not the only parent deserving of the title - Mother's from Hell.

There was more to say, but my time is up.  At 3:30 pm my day is done as the end of the school day has arrived.  Well, I hope there aren't too many typo's and such, because this is a blog and I'm moving on with my day.

We are all special... I think... though I complain and want to compare bullets with you... by Stacie Wiesenbaugh

Seize the Day! Literally

5:00 am From his hospital bed I hear the familiar intake of breath as a muscle spasm begins.  Switching on the light I discover Riley in a clonic seizure.  Grabbing him up, talking to him, massaging his limbs; the seizure subsides in moments.  Four years ago, this episode could have lasted for hours.  Now with all the anti-seizure drugs he is often able to cease without intervention.

5:02 am On with the day.  After rearranging him repeatedly throughout the night, this meant falling back to sleep and oversleeping.  John and Ronan always rise by 5:40 am.  Oddly, they oversleep as well.  This is very strange. I cannot explain Ronan oversleeping.  John however has been working non-stop and just started trying Valerian Root Tea to help with his insomnia: it appears to actually work.

8:00 am Riley is off on the bus with a new assistant, Antonetta.  Assistant Liz had to cut back on her hours; we are very disappointed.  John and Ronan have already headed in their separate directions.

8:05 Plan for my day: dishes and laundry, desperately needed class at the gym, paperwork, sell some Arbonne, collect Riley from school by 2 pm, Integrity Biofeedback appointment for Riley and myself, pick up Ronan, oh - did I get Riley back into Dr. Stohler's chiropractor routine, riding by 5 pm (we missed last week), is the shower set up for Riley, do I have everything Ronan will need for homework at the barn, are tomorrow's appointments set up, is dinner planned for the late return.... then start it all over again.

8:35 am Phone call from Lee County Transportation.  Riley has suffered a seizure on board the bus and EMS is with him now.  Then EMS/Bonita Springs Fire-Rescue is on the phone.  I must sign in person for the bus to be released from the roadside.

8:40 am Heading somewhere in the vicinity of Old 41 and E. Terry.  How do I handle this now.  Seizure's are part of our life.  Riley has quite a lot of drugs in his system to manage this disorder.  The last neurology appointment, I was instructed to administer Diastat after the next cluster seizure - this must qualify.  However, that window has come and gone.  Riley is ready to go on with his day.  Stimulation is better for him than coddling him.  Yet, Riley is a "hot potato."  Everyone who gets him in their arms tosses him back to mom or dad as quickly as possible.  Do I just take him home to humor everyone else?  No thank you.  Riley needs to live a life.  I need to get a life.  On the way I talk to school's nursing office: I love that office, let him have his day - what do ya'll think the big green frog backpack hanging from the wheelchair full of Diastat  and medical and contact information is for! (no one touched it by the way)

9:00 am I have found them, bus, EMS, ambulance. Screeching the jeep into a tiny little used car lot, I am there.

Camera in hand.  Yes, I have my camera.  These are the moments to record as far as I am concerned and I have missed plenty of them.  EMS spies the crazy woman in ripped gym clothes, uncombed hair, red backpack purse and camera slung around the neck climbing aboard the bus.

I am greeted by a concerned driver, Louis... he spoke at least 20 words this morning, he must have been really nervous.  Welcome to bus 27126 Antonetta!  And then three rather serious EMS technicians.  Loosen up guys, perhaps you've encountered seizure disorders before.  Then of course Riley, still seated in his chair is smiling, laughing, and kicking - just like the last time I tracked down the bus and ambulance.  Good times.

9:10 am.
Sign some papers.
Kisses for Riley. 
Big "Hi" for the little girl across the aisle tugging on my arm.  "Hi" again.  Yes, "Hi, Sweetheart."
Merry waves from the boy ahead in the bus for the men in uniform.
Riley laughs.
Uniformed man stands up straighter and pulls in his chin.
Ambulance drives away.
"HI!"
BIG WAVE!
More seriousness... more laughs.
On your way please school bus #27126.
Oh yeah, swing by the pharmacy for Leviteracetam.  Say yes to drugs.
Where was my day going?  Seize your day, Stace!

We're gonna have our day, darn it!  Stacie Wiesenbaugh

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 Night in the Life of Riley

It was another rough night for Riley.  I held him through most of the night.  John had the sheets going... again.  Think I'll skip the details today.  I am so grateful I don't do this alone.

Sharing this is about giving a glimpse into a special needs family.  As a mother to a typically developing child, I see the difference keenly.  Even when severely ill, a typically developing child is a dream to care for.  The special needs illness brings me nearly to desperation.  However, I remind myself how far we have come in improving Riley's health and abilities.  John and I spent five years taking turns holding him or being immediately beside him through every night of his life.  There will be more on this later:-)  We have come extraordinarily far and we can handle a night here and there.

Today I share a link to another blog, Enabled Kids, concerning a reminder on treatment:  "Any minor cerebral palsy can become severe if it is not treated properly through his lifetime, because it is important to adjust to the individual changes taking place with the child himself, along with his growth and development."

Pictured above, Donna Brooker and Ohm, give Riley a much needed massage therapy session.  Miss Donna generously shares her time and stops by anytime she's in the vicinity.  Riley needs constant hands on to maintain health and flexibility.  Touch is essential to everyone's well-being, especially for a child who has difficulty interpreting his environment.


Welcome Russia and Hong Kong... I encourage you to share how different your experience is to mine.

As always, your thoughts are welcome.   Stacie

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.