Mommy Vs. Clonidine

Clonidine, a blessing and a curse for my family.  For now, I will keep this brief because first of all I am tired, and second, Riley is home.

It has been a very long week which began last weekend when Riley did not feel well and stayed up 48 hours straight.  Clearly, the clonidine does not always succeed at dropping his blood pressure and helping him to fall asleep.  When Riley is wakeful, the rest of us stay awake with him.  I did have a plan to post about that 48 hours.  I have not gotten to it... because I was up 48 hours straight with Riley, it can become an emotional subject because the toll sleep deprivation has taken on my family, and because each time I go through this... I really do not like myself very much and likely it all should not be shared.

Though, as you recall I have a mission and it is to share a little of what it means to live this special needs life.  Some should be kept and I am not writing a full-disclosure blog.  However, I may verge on subjects that could get me in hot water such as medication use etc.  I live on the edge just by circumstance alone.  Once you are special needs... you are open to judgment.

Alright, I must get through my post and attempt to wake Riley.

We were up a lot and I think of it as taking from "the bank of Riley" and it would appear "the bank of Mommy" too.  Tuesday Riley went into recovery mode and went into a very deep sleep at school.  Naturally they were concerned about this uncharacteristic behavior and asked me to collect him.  Unfortunately, Riley was at school in San Carlos about 15 miles north of home.  I happened to be 15 miles south of home in a doctors waiting room while my lucky mom was suffering through a colonoscopy.  "Please wait."  That was hard as procedure dictates that uncharacteristic behavior gets him sent back to his family.  Shall we call Dad.  Dad is working and happens to be driving a tiny run-down Toyota Camry.  Riley and his chair need his special seat and space for a wheelchair as well.  Of course, I did not have that either as I had taken my mother's car for this event.

In the end, I actually pressured the very lovely doctor Schwartz as soon as I could to please talk to me now so I could gather up my mom and run out the hospital doors.  Yep, great supportive daughter I am.  But Riley's needs come first.  Always.  That is just how our life is.  Riley is first.  Always!  Rush doctor through my lecture, get mom out the door, race her home, race to my house and swap cars, race to Riley's school.  Take him home, feed him and watch him wake up and be ready to take on the day.  Gee wonder where my time goes?

On to this morning.  I am still feeling sleep deprived.  You would think after all these years I could handle it but the reality is that over time I have just kept taking from my "bank" without opportunity to replace it.  First think I do each morning is prepare Riley's morning drugs.  Morning drugs are on the red side of the pill organizer.  The RED side.  I know this.  First thing this morning... I prepared a little silicone bowl full of applesauce, opened up the blue side of the pill organizer and located Friday drugs, ground them in the mortar and served them with the applesauce to Riley.  Well done Mommy.  First order of the day taken care of. 

Off Riley goes to school.  An hour later the phone rings.  Riley will not wake up, please come and get him.  Day over for Mommy. 

Obviously I fit this post in anyway because he is still sleeping.  Hey, we all need some sleep and it's gonna be a rough night since HE ALREADY HAD HIS CLONIDINE!

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We are all special... today I'm extra special... Stacie Wiesenbaugh

Shaky Shaky Easter

Spent all night going back and forth between my bed and Riley's.  Oftentimes I hadn't even reached the pillow before I started back again to his bed.  He needed so much help to settle.  There were coughing fits, he had pushed himself into the hospital bed bars, twisted his legs into a pretzel, needed a fresh diaper, sweated through his shirt.... He actually took to yelling for me a couple times. 

Wow, this is new.  Yelling for me.  How great is that.  He has a new skill!

This morning, I have had so little sleep I am shaky throughout my whole body.  Stopping, sleeping in, telling him to just watch a show... none of this is an option.

Pictured above, Ronan rolls dough for Keflie cookies (John's family recipe).

Happy Easter.  Stacie Wiesenbaugh

Masquerading

At the age of three, Riley began school due to the necessity for intervention services through IDEA.  Once Riley entered the school system's Exceptional Student Education (ESE) I had the opportunity to focus on Ronan, just a year old at the time.

Santa Cruz Island Sea Lion's by John Buck circa 2002.

Something happened that I had not experienced in three years; I could freely accomplish a task without the production and worry for Riley's well-being.  Ronan became my constant companion .  It sounds a little more freeing than it really was because my mental state never stepped away and I was truly exhausted and listened closely for the school calls to my cell phone.  However, this could be valuable time for Ronan  I signed him up for Music Together an entire two miles away from Riley's classroom.  Eventually we ventured even farther for Kindermusic at Naples Philharmonic.

Is there really such a creature as a "typically developing sibling?"  How can that be possible where the childs' home life and family completely revolves around the needs of another.

How strange these sessions were to me.  At that time we still took turns to get Riley through every moment of the day and night.  My eyes were so tired I viewed the entire scene through a blur and it took every bit of strength I had just to get us there.  My child laughed and played alongside other children.   I had so little left in me it was a challenge to appreciate those very precious moments of my son's joy.

Strangely, the other parents in the room did not seem to notice that we had nothing in common with them.  We were masquerading.  We were pretending to be a normal family for those very few moment of our lives.  We were so far from the family we appeared to be.

This feeling of pretense has never left me.  Without Riley by my side I am committing a deception on all those around me.

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

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