Hanging with Riley

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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

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

Seahorse to Seizure

Our weekend started of full of promise and excitement.  Our weekend began with a visit from "ReRe," John's mom. Ronan chose to bake Pineapple Upside Down cake with his grandmother.

Little Miss L. shared joined us for an evening and brought along her latest camp project from the Bonita Art League.  Note, Ronan has discovered camouflage tie dye.... no stopping him now.

Saturday morning, having arranged for Ronan to spend the day with ReRe and Riley with a respite nurse from PIC, John and I were able to have a day together.  We drove northward to fossil dive off Venice Beach.  The primary goal was simply to have some fun together.  Fun has been sacrificed in our lives with the intensity of caring for Riley.  Sometimes we wonder if we even remember how to have fun.  The opportunity for respite is very new and rare in our lives that time together for just the two of us is nearly impossible.  We had some great fossil finds... those will show up later on The Shark Tooth Guy.

My happiest moment was stumbling over a Seahorse  (no we don't currently carry an underwater camera so I found a link).  Over the past 17 years of diving I have seen many incredible creatures, however seahorses have eluded my all but once before.  This time I made the discovery myself.  She allowed my to reach out gently and she moved onto my hand and then to John before we had to move on.  Those encounters together are magical.

We were home by late afternoon and reality quickly reasserted itself.  Do John and I really have the right to freedom at all?  Riley was suffering for a day without us.  He refused to eat dinner and vomited up his medicines.  Perhaps positioning and activity for Riley throughout the day has become intuitive to us but it seems that even R.N.'s dedicated to special needs children cannot work with him properly and we pay for that time away.  Of course he lost all his medication.  Riley took Zofran for the first time and to our great relief the vomiting stopped.  However, by morning Riley suffered Seizure #82, needing Diastat to end the event, and was mostly unresponsive throughout the day.

We want to believe there will be some relief for all of us.... mostly for Riley, but as his parents we need a little joy in life too.  Or perhaps we do not need those moments, we certainly pay for those few stolen moments dearly.

We are all special... by 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.

Seizure #80

Always watching and listening for the next seizure ever since the first brutal seizure on April 21st 2004.  That day is one I never leave behind.

Have I become callous to seizures now?  What a horrible thing to have happened and thank goodness it did.  Some events simply need handling.  This is one of those events we must just get through and do our best to end it without calling for EMS or heading to the ER unless absolutely necessary.  Do understand, seeing Riley suffer is dreadful and seizing is certainly a challenge for him.  When it happens, he needs me fully present and not freaking out because he is hurting again.

"Sundrenched World"

It has been five weeks since seizure #79 which has been a long reprieve.  He takes quite a high dose of daily anti-seizure medications which have built up a great deal of protection for him.  He will pay for that protection in other ways down the road when the side-effects begin to take hold. 

This morning had a trigger.  He woke to a strong spasm in his ham string.   The spasm in turn brought on the clonic seize with a violent shake throughout his tiny little body.  All I could do his gather him in my arms and help work through it.  My mind working fast while attempting to bring him relief.  Diastat - no Diastat.  Emergency bag yes - no.  Sometimes the cure can be worse than the illness.  Administering Diastat would have ended his day and brought on complete lethargy.  He may not learn much in school, but he enjoys his day there and I am not going to take it away if I do not have to.  Somehow, we ended that seizure in two minutes and we carried on with our morning routine. For Riley, a two minute seizure is hardly worth noting.

Riley is an amazing child.  He goes through so much.  He recovers as best he can and gives me that smile that says he knows I try.  Off he goes to school and it will be much as every other day.

We are all special... by Stacie Wiesenbaugh

Here It Comes Again

My need to document proves that "crazy woman" is still here.  Cannot imagine that this subject will be found covered in many places as the subject today is rather distasteful.  Oh right, I remember now, my entire subject is rather distasteful.  I will make this rather brief, because mostly I am simply tired today.

After Riley had a good morning, he was disinterested in his lunch.  If you know Riley, you know he has a tremendous appetite.  It wasn't long before he began vomiting.  Vomiting is stressful for all children, however having a typically developing child and a special needs child I can tell you with certainty that it is entirely a different experience with special needs.  There is no warning.  It is projectile.  It is frequent.  It will be everywhere - everywhere! on the walls, down your bra and panties, in his hair, soaked in the carpet, on the opposite side of the house... you may be getting the picture but I'm not so sure.  After  cleaning up as fast as possible, stripping everything, starting the laundry machine as it will be going continually, attempting to cover everything in towels, washing him and getting the child upright in an attempt to quiet the next episode it will begin again.  And again and again throughout the day.  By the way, this really requires two adults be present to make it happen at all.  Fortunately, John was home and he moves fast.

There was an indication the evening before.  Leg tremors.  After these episodes the leg tremors really take over.  In my arms, I support him upright on one side and with the other attempt to pull the balls and toes of both feet toward his shins.  Barely four inches remain between shins and toes once the tremors are relieved.  Then we wonder if this effort to relax the tremors puts added stress on the abdomen.  Release the legs.  These tremors increase to.... my guess, about 40 beats per second - only because I cannot imagine it being higher than that.  His feet move like a film in high speed when the film has spun free from the reel.

Move into "tonic posturing" and eventually a seizure.  I think I will reserve those for another day.

The most amazing part of all this is Riley's sweetness!  By the end of the evening he has lost all of his night medications which means sleep will be impossible for all of us.  Medications and sleep drugs will most definitely be a frequent subject.  The moments in between the vomiting and severe tremors... would you believe he smiled at me and talked in his sweetest manner. 

He was positioned all night so that I could maintain a hold to relieve the tremors.

It is so difficult to see my child experience this.  I suspect it is even harder for John when I catch his expression.  These episodes are also one of our hot button issues because of the history - naturally there will be more on this later.

Does anyone else out there experience a similar situation?  It's still a challenge to get through.  To anyone who actually bore through this post... thanks for listening!

The picture below is one of the Ronan's family portraits that teachers insist upon.  Do they know the heartache this little exercise brings?

Also today please note this piece of news which will bring more difficulty to our lives... Florida Governor cuts disabled programs.

By Stacie Wiesenbaugh

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.