Tag Archives: medicine

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.
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"

“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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