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

Week of Success and Childhood Heartbreak

Success

The fundraiser Friday at Chico's The Company Store for Naples Equestrian Challenge was a great success!  I gathered my carpoolers and arrived a few minutes after 4 pm to discover the warehouse hopping.  Our participants were serious shoppers.  By the end of our allotted time the check-out line snaked back around the clothing racks and everyone had armloads of loot.

I am so excited to discover the results and want to hear everyone's experience.  Thank you Chico's!

Heartbreak

Three years ago Ronan entered Bobbi Noonan's VPK.  As the year went on, one of the other Dad's, Don,  and I set up regular playdates for the boys to give each other some child free afternoons.  Ronan and Ethan became inseparable and adored each other from the start, even asking for sleep overs.

SWFL has been particularly hard hit by the economy and Ethan's parents have decided to relocate to Florida's east coast where businesses are significantly busier and his mom has already found a great new position as interior decorator extraordinaire.  We are all so happy for the family for making so many positive changes in their life!  We will miss them dreadfully, however.  Ronan has taken his loss very hard.

"Can we move to Fort Lauderdale too?" he asked through tears last week.

"No, for now we will stay here but you will still be friends." I tried to comfort him.

"But, I love him!"  Now I was heartbroken as well.

 

Friends forever pose with their teacher, the beautiful Miss Lauren.

Always the sweetest and most considerate child I have ever met outside of my own.  Ethan considers Riley his next best buddy.  Riley has a friend!  And he's leaving...

Ronan sobbed all the way to school that morning, heartbroken.

We will still have playdates!  Better gas up the car.

Early Thursday morning after the last sleep over Ethan heads out the door to Fort Lauderdale with his new lion webkinz, "Mr. Ronan."

Late that evening a picture came through my cell from the amazing Ms. Maija.  Ms. Maija is Riley's other friend forever as well.  Ethan held his new buddy tight and hasn't let go since.

Yes, Ethan you are still part of this family.  We all love you.

We are all special... by Stacie Wiesenbaugh

MIXIT TV

Remember today is International Coastal Cleanup Day!  Get to a cleanup site near you if possible this morning, you may need a shower afterward but you will feel great for being part of it.  Unfortunately, Riley's cold persists so we will have to clean up on our own another day... I promise.
 

Produced by and for people with disabilities.

New television program in England.

Living with Logan: Jackson's Smile

Living with Logan: Jackson's Smile: There's something about a child's smile. The look of wonder and delight all over their face that makes you smile in return, and feel better ...

Overfilled

http://blog.friendshipcircle.org/2011/09/14/11-special-needs-novels-that-will-touch-your-heart/Overfilled is how I feel emotionally and timewise.
There just is not enough of me to get to everything I want to do.

Riley's cold from Labor Day weekend just cannot be shaken.  Poor little thing really needs to get a good clean breathe.  This week he has been sent home from school and lost out on horseback riding.  PT was "messy" but he got through it.  Good thing we've got drugs:-) But they wear him out too.

Great big thank you to all who have signed up for Friday's event at Chico's!  If you don't hear from me personally to remind you (big oops if you don't), please contact me.

Sharing today because that's what I do and I just can't help myself

I have taken to devoting one post at the end of each month to share the very many special needs blog posts which speak to me... this one will not wait because she speaks to my today where my head is:
The Irritating Factor

Hero horses: Sarah Bombard won strength and confidence from Naples Equestrian Challenge

http://www.naplesnews.com/news/2011/sep/05/hero-horses-cerebral-palsy-victim-sarah-bombard-wo/

Sheryl Soukup of Naples Equestrian Challenge is in the business of changing lives

North Naples Journal

For the Love of Blogs started a group for Parenting Special Needs, hop on over and link your blog up.

11 Special Needs Novels That Will Touch Your Heart from The Friendship Circle.

We are all Special... by Stacie Wiesenbaugh

For Our World a poem by Mattie Stepanek

The Canine Heroes of 9/11

Raising RSV Awareness

Riley and I had the pleasure of being interviewed yesterday by Stacey Deffenbaugh!  Stacey anchors NBC-2 News at Noon and The Healthcast report at 5:30pm.  She also contributes court stories from state and federal court.

We discussed raising awareness of Respiratory syncytial (sin-SISH-uhl) virus, or RSV.

Ms. Deffenbaugh and her cameraman, John, were a pleasure to have in our home and share Riley's story as well as his cause of protecting vulnerable children against respiratory illness.  Fortunately, Ms. Deffenbaugh was incredibly patient with my random thought pattern and our slightly chaotic lifestyle.  This experience certainly shows me that I need to polish my speaking skills and reign in my focus.  I suspect however that she will have no problem working around us as she prepares to get the word out.

RSV

 

www.rsvprotection.com

Respiratory syncytial virus (RSV) infection, is a common, easily spread virus that almost all children catch at least once by the time they turn 2.

RSV disease usually causes moderate-to-severe cold symptoms.  However, for some babies, complications from RSV disease can lead to serious lung infection.

Babies at most risk for developing severe RSV disease are premature babies - those born before 36 weeks gestation.

Premature babies have underdeveloped lungs and fewer of the vital antibodies needed to stave off infections, so they are not so well-equipped to fight RSV as full-term babies.  Other risk factors for RSV include: low-birth weight (under 5.5 pounds), certain lung and heart diseases, and situational risk factors such as attending day care, having preschool or school-age siblings, or exposure to tobacco smoke.

It is recommended that you call your baby's doctor if your baby has any of these problems:

Coughing or wheezing that doesn't stop

Fast wheezing or gasping for breath

Spread out nostrils and/or caved in chest when trying to breathe

A bluish color around the mouth or fingernails

A fever (in infants under 3 months of age, a fever greater than 100.4 degrees rectal)

Prevention

• Cover coughs and sneezes
• Wash hands frequently and correctly with soap and water for 15–20 seconds
• Avoid sharing their cups with others
• Refrain from kissing others