Pass the Remote

The Thayers had a little Labor Day get away.  When Bryan came come from work that Friday and I immediately opened a beer and sat on our front step, I think he realized how much I needed a break! :)
We travelled to Duluth, MN.  A nice drive and the kids handled the car for 3 whole hours!  Unbelievable!  We stayed at the Edgewater Resort and Waterpark.  Fun was had by all, Rojo the most, as our poolside room looked onto the Lazy River and Tube Splash Zone!
 When Gunnar needed his naps I would sneak away for some selfish ME time to relax on the bed, watch the lazy river, and catch up on cable TV, which we do not have at home.

While channel surfing, I realized just how much watching TV is like raising a child with a disability.  With cable tv, you have a such a variety of shows to pick, but what one is right for you?  Each program boasts to be the best, but there is no place to go that tells you if it is worth your time and energy.
While clicking that remote, you run into the History Channel that tell you of the past.  You see how far we have come, view some nightmares of yester years, and hope that history is not repeated.
Next you come to Discovery Channel and see the wonders that science and investigations can bring to help our children in the future.  You feel so hopeful that, one day, Science and it's advances will help your child.
  Hope and Pray.....
Which leads to the Inspirational Channel.  The religious hymns, prayers, and bible verses drive you to put your child's future in the hands of our Creator.  Jesus, take the wheel.  And you pray with all your heart and soul to be the next miracle.
But until that miraclous day, let's see where Science has lead us today on the Learning Channel.  Lets see  mysteries of the brain that have been uncovered.  Lets see what method of therapy or medical treatment we can look into, research, contect with.
After so much thought provoking, intellectual simulation, it is time to click on to to the Comedy Central.  It is life, after all, and if you can't laugh at the crazy ups and downs we face each day, then you will go Insane!  
Speaking of insane,... time for a little Psycho-social drama with Dr. Phil, Jerry Springer, Real Housewives and the likes.. Reality TV that, come on, you call that REAL?  Spend a day in my shoes and I will show you real LIFE with limited sleep, family drama, fights, tears, and make ups.  Drama unfolds everyday as you get on the special needs rollercoaster of life.  Exclusions from family trips and get-togethers,  uncaring, uninterested relatives that hurt and anger you,  isolation from other parents or friends who cannot relate,  battles with insurance companies, copay woes, budgets and fears of future plans.  THAT is reality!!
On and on you surf until your head is swimming and you wish that the National Anthem would play and be followed by that wonderful BEEEEP sound of the television going off the air...
 Yet as we all know, those days are past and the TV plays around the clock.  The never ending dramas, searches, hopes, and fears that a click of the remote can't fix.

Sleep study

Roa had a visit to Dr. Sleep at Gillette on Friday.  Dr Garcia is such a kind, calming man---Makes us want to take a nap... all of us but Roa, that is.

Roa is undergoing a sleep study.  He wears a "watch" around the clock for two weeks that is actually a device that measures movement.  We are looking at rest times vs. sleep times and trying to get an approximate measure of how much Roa is awake during the night.  We also have increased his trazadone sleep medication to suit his growing size.

We continue to try to explore how to help Roa and the entire Thayer family sleep with more ease.

On that note..... Gunnar is awakening from his morning slumber....

Tata for now!

School for Roa!

Roa had his first day of school today!  Mom was so nervous!  Roa on the other hand, has been walking around our house with his backpack on for the past week!  Ready to go.
Bryan, Gunnar and I took him in this morning.  We were nervous to leave our nonverbal, demanding boy in the hands of strangers.  The teacher, Lori, and therapists, Mary and Laura, visited our home last week so complete strangers they were not, but it was the very first time Roa would be with people other an those who know him well.
I wrote a chapter book of notes to try and communicate what works best for Roa...poor teaching staff.  What an uptight Momma!  But I want everything to go smoothly.

Roa had a great first day!  When Gunnar and I returned to pick him up, he was giggly and happy.  Laura explained his day and all is activities and how they adapted it to work for Roa.  It is really a warm, caring environment!  I was relieved and proud that Roa is my little school bug!

Now for Wednesday... let's see how this nervous momma lets go and puts her boy on a school bus....    stay tuned!