Wednesday, August 29, 2012
Way over my head & a little bit out there would best explain one therapy approach we have chosen to use with Andy even before birth. Touch Energy (a version of Reiki) uses the approach that our body is constantly building new cells to repair damaged ones (similarly to how a cut on our hand heals itself). Through the skilled hands (actually, no touch is even used) of his therapist, Andy receives routine treatments to encourage nerve development in his lower extremities, bladder & bowel nourishment, and routine health monitoring. Amazingly, she ends diarrhea & constipation after a simple phone call.
While many may view this all natural, new approach as “out there”, I simply view it as if it helps Andy, I’m all about it! Touch Energy / Light Energy often cause me to question scientific generalizations and what is “right” for my child. In fact, many of the negative comments we received such as Andy having a club foot, being unable to move his legs, needing a shunt, etc, have been proven false. Touch Energy has demanded me to put my faith in the unknown and in something I don’t totally understand. Andy’s body is viewed as an ever-changing blueprint; through Touch Energy, our Faith in God, and the scientific world, we have a “whole” new view of life.
Unexpected moments are sometimes the ones we cherish the most. May 19th, 2012 will forever be one of those. On a busy wedding day for his uncle and soon-to-be aunt, Andy gifted his family with six independent steps. Wow! What a true blessing to be the receiver of!
Six steps have grown by leaps and bounds. The holes in his jeans, shorts, and shoes have been plenty, but he continues to challenge all of his doctors by his refusal to be held back or slowed down.
This summer we were the lucky ones. For a child who was not supposed to even move his legs, he is doing far more than that. When faced with a bad day, it is moments like this one that we need to look back at and remember.
Tuesday, July 17, 2012
This summer Andy has had a great opportunity to take Equestrian Therapy, and he loves it! As one of their youngest riders, Andy rides a pony weekly. So far he's made friends with Rosey and Barnie. He also has "Whoa!" and "Back-up Barnie!" down-pat.
Equest therapy not only provides a "core" workout (because he has to concentrate on balancing the entire time), the movement of the horse mirrors that of a human when walking. Andy's hips practice fluid walking throughout the lesson.
Ride, Andy, Ride!
Thursday, July 12, 2012
Monday, July 2, 2012
|One Step at a Time|
If no one questioned another's way of thinking, would sufficient be okay?
A control freak would probably best define or describe me - somehow challenging authority has always been an integral part of me, and usually it does come with logic and peaceful reassurance in the long run. When challenged with lack of control of Andy's SB, I steered this "need" towards his doctors and specialists (lucky them), and it has been extremely interesting to see how they handle it. After the first "ego blow" that someone might be questioning their all-knowing opinions, most have realized that Tom & I are truly looking out for Andy & Robby's best interests.
Place yourself in a tiny little cubical that the doctors refer to as an examining room. Although a pediatric specialty, there is little to no color in the room and it lacks any type of toy what-so-ever. Bored of waiting (even at the first appointment of the day) and done with the bag of toys you armed yourself with, Robby has created a new game of island hopping (jumping on and off of the examining table). The "specialist" arrives and obviously hasn't reviewed your son's case folder. Here is one example of dialogue that takes place as they attempt to tell you that Robby now needs a CPAP machine (a machine that blows air into your nose and face causing your lungs and air passage way to open).
"You really want to put a mask on him while he is awake? And, you realize our goal is to get him to fall asleep and stay asleep? And if he rips it off his face and flings it across the room, you really think he's going to let me put it back on? Have you ever met my son (even though he was in the same exam room as us)? No, his name is Robby - not Matt. Yes, he is four, but his strength, will-power, vocabulary, and stubbornness would put mine to shame. Yes, I realize that I am the parent, but somehow arguing for hours into the night, repeatedly throughout the night, does not seem like a logical way to support going to bed peacefully and sleeping through the night. Is this machine a necessity or are you just attempting the next thing on your list of ideas? May I see his sleep study results? Oh, that's okay, I don't need a paper copy right now, how about looking it up on the computer you have right here in the room. Could you provide my pediatrician with an annotated version then please; I'll refer to her before we proceed."
Needless to say after three different conversations, we will no longer be visiting this pulmonary specialist assistant, and Robby isn't wearing the gas mask CPAP device. Luckily his amazing pediatrician has requested a new specialist for him. We'll see where this one goes.
Too often I have listened to the doctors use generalizations about my kids: he'll grow out of his ear infections (he didn't), he won't have any lower leg movement (he does), he won't be able to bear weight or walk (no, he runs), he'll need to attend a special needs classroom (don't even get me started on that phone conversation which was completely against the law on their side to say), etc. In each case they have been wrong. Because of this I won't allow my kids to be grouped into a "typical" stereotype. We'll continue to go against the grain as much as necessary. Besides, being like everyone else would just be boring.
We're Playing Catch-up!!
Throughout the last several months my Blog has been completely confused by the Google e-mail changes that took place in my district; the end result is that I have blocked from posting during the transition. While still not perfect, I'm trying to play Catch-up. Here's a glimpse of what I need to write about (hopefully sooner than later)!
*** Going Against the Grain - Questioning the Docs. Once Again
*** Don't Place him in a Box, or a Confined Classroom for that Matter
***Ride, Andy, Ride
*** Steps to Remember
*** Sun, Surf, and Summer