A "Whole" New Therapy

       

       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.    

Steps to Remember

       

       Unexpected moments are sometimes the ones we cherish the most.  May 19^th, 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.   

Sun, Surf, and Summer

This summer's hot weather has enabled the boys to do what they do best... explore, construct, tackle, swim, ride, and play, play, play.   Here are some of the highlights.   

 

  

     

Ride, Andy, Ride

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!

Don't Put Him in a Box - or Prescribed Preschool for that Matter

My Little Inventor

      It's hard to believe that Robby will be starting preschool this fall.   While a difficult decision for any parent to make, our choice of schools had double weight:  

1.  Robby has an endless quest for new knowledge, an innocent demand to be correct, and a constant need to be doing something.

2.  Andy's fabulous Early On instruction in physical therapy ends once he turns three (next year).  He has to receive instruction through a preschool setting (supposedly in our residential district).   

     Knowing this, we needed to weigh out all options for education to reduce the number of buildings (not to mention districts - potentially three counting mine) that we would have to utilize each day.  

     After much worry, questioning, prayer, and research, the choice was beyond  obvious.   Robby will become a BRONCO in the fall at Coopersville Schools, and Andy will follow the next year!     

      The welcoming tone for Robby's endless energy and acceptance of Andy's needs was beyond anything one can imagine.   So get ready preschool teachers, be sure to eat those Wheaties because we're headed your way!

 ***   As a means of informing other SB parents of our experiences and bringing a wider range of special needs acceptance, here is the longer, unfortunate story I had to endure that hopefully others won't.

It is unfortunate that some teachers/people are not willing to look at the positive potential in a special needs child.   While researching which school / district Andy would receive the best care in (you can choose anywhere b/c preschool is a paid program), our own residential district gave me a harsh reminder of how ignorant we as humans can sometimes be.   (Please note that I purposely didn't announce that I was also an educator in the phone interviews of all the schools.)  

Only as a follow-up to curriculum and class-size questions did I inform the preschool teacher that we had a second child, Andy, who would be attending preschool the following year.  Andy would also be receiving PT in their building.   While I inquired about the preschool teacher's experience with children with gross motor issues, classroom set-up, PT, etc, Andy was instantly labeled as a child who would need a "special service" other than the typical preschool events (true - once a week he would have PT with a therapist, but otherwise, nothing would be different) and would attend a totally separate program in a special needs classroom where the students mainly contain cognitive and speech issues (which infuriated me since Andy's vocab. is more impressive than most five year-olds).   While the preschool teacher's view may be accurate for some children, it definitely did not address Andy's LEGAL need for least restrictive environment, and she had not even met him.   She completely refused to address that 

*  he is above average in verbal / social skills

* has surpassed cognitive levels at this age and beyond

* has average fine motor skills for his age

* is evaluated every six months, etc.   

Her hyper-focus was on his gross motor issues, and how that would impact her classroom design (give me a break!).   Therefore, "he will be placed w/ a teacher and other students "like" him."   Like him?   Excuse me, no one is like him - just as every other student in your classroom is unique as well.   

Obviously, I could have battled her and legally one, but did I really want to place Andy in an environment that has already set his potential so low?   At the same time, did I really want Robby introduced to a program that allows such behavior to be pressed upon him - just because kids are different they are going to be separated from you.   I don't think so.   So, although we are supposed to send him to our own residential district, I refuse.   

As an educator (and human for that matter), I know you don't impose restrictions on students (especially those you have never met), you build them up to break through the restrictions that they have self-imposed so that they see their full potential and succeed.  

Thank-you Broncos for welcoming BOTH of my boys and not placing them in a "boxed" program.   We can't wait for fall and future adventures with you.   

  

Going Against the Grain

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.

 I've also noticed that the doctors tend to lose all facial expression and tone when you question them. April brought warm weather and infections to our household. My 6th sinus infection since January, ear infections, sinus infections, and two UTI's for Andy found us in the doctor's office more than out of it. Andy's urologist deemed these infections as a sealed fate for cathing. Concerned that future UTI's would damage his bladder or kidney function, he thought cathing him would prevent such events from occurring. The only problem is that each time a catheter is used, it introduces bacteria that could start a UTI. So to get this straight, we are cathing Andy every 4 hours to prevent a UTI, but in doing so we are promoting a UTI every 4 hours in the process. Doesn't this seem idiotic? We thought so, so we aren't. We'll wait until Andy gets another infection if he ever does and reevaluate then.

 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

             

Making Strides

The unpredictability of Michigan weather has left the boys climbing the walls and screaming for Spring!   As outdoor lovers at heart, the two have loved the sled rides, filling the bird feeders, shoveling snow, watching for "Penny" - their "pet" wild turkey, and every other aspect of winter.   As for me, I'm ready for sunshine, warmth, and no more snowpants or boots!!!

Inside, though, they have expanded their imaginations to include new tricks including scaling the kitchen counter. 

And Moving Full Steam Ahead!

A Merry, Merry Christmas

Merry Christmas from the Mathews' household to yours!

Christmas through the eyes of a 3 1/2 year old often tells us the little things we forget or are too busy to appreciate.   Here are a few highlights from this year's celebrations.
  
****Why are the wisemen riding camels?   Don't they know it isn't safe; there aren't seatbelts.   They should be riding in cars or trucks to see Jesus!
**** Jesus and Santa can't be watching me ALL the time; they'll be busy making everyone's toys.
**** Does Jesus get presents on his birthday?   How about cake?   I don't think he can have cake though; he's too little to chew.
****(When shopping for Andy's Christmas present)  Would Andy like that?  I don't know, but I would.
**** (Santa called to ask Robby for directions to his house on Christmas Eve.  Robby's response...)  Just go to Fruitridge, and keep going.   Ed's house (our neighbor) will be there, and keep going and then you're at our house.  
**** Dad, how does Santa fit down the chimney?   Well, if he breaks the chimney, he's gonna have to pay for a new one b/c it's really expensive. 

Santa went over so/so this year.   Robby adjusted well to the "jolly, old elf".   (Picture from the Spina Bifida Christmas Party).

Andy, on the other hand, did not want to have anything to do with the strange looking old man.

Favorite gifts:  
Robby:  A bucket of PVC pipes that he can tear apart and reassemble hundreds/thousand of times.  So far he's made sprinklers, fixed pipes, changed parts, and the list goes on....
Andy:  A pretend phone "hello".  (Hopefully he won't break ours now - he LOVES talking on the phone) & Cookie Monster slippers.

Here is the best Christmas gift ever!

 
2011 is going out w/ a positive outlook. I had to have a birthmark removed from my face (yup, my face. Nice holiday break huh?), but luckily it was pre-cancerous. Better to be safe than sorry. At the same time, Andy's hip x-rays came back great! 2012 - here we come!

Full Speed Ahead

Ladies and gentlemen, start your engines…literally. This past month I have been reminded how quickly time flies by, and my boys have embraced it head on.  Fall is truly a busy season for our family. School starting, cross country season (3rd place finishes for both my boys’ and girls’ teams), our annual hayride, Halloween, leaf raking, leaf raking, and more leaf raking.

Amidst the business of it all, Robby and Andy discovered new “skills”. Robby gave us a quick reminder that he is 3 ½ going on 16 when he started the engine of the car so he could “get it warmed up for us” – oh what a thoughtful child! Similarly, Andy has a new found love for opening and closing drawers and cupboards. I really wasn’t expecting him to crawl inside the drawer, stand up, and attempt to reach his snack on the counter. Amazing? Yes. Terrifying? Yes. And then I had the motherly decision to battle… grab him (the floor is tile) or run and grab the camera? I chose the camera!

Andy’s desire to become independent has exploded. “Andy do it!” is a common expression used as he attempts new challenges. To encourage him, his PT suggested a walker. She hopes that Andy will realize walking will be a quicker form of transportation for him, and once he feels more confident standing and walking, he may do it independently. For now, he stands and cruises everywhere hanging on whenever possible. He is gaining use of it day by day. The best part is that Robby and the other kids view it as a normal part of life. The kids take turns w/ it (just like they did with the little kid walkers – zooming around the house like racecars), but when Andy needs it, they bring it to him. It is truly a beautiful sight to behold – a boy who wasn’t supposed to walk shows us that God made different plans for our “Miracle Child”.

 

Side Note: Robby’s sleep results came back; he still has obstructed sleep apnea (we were hoping to eliminate this when he had his tonsils and adenoids removed). His oxygen and CO2 levels are off as well. We’ll find out more in Dec. at his next appointment.

My Church Babes

"Robbbb-be!"  Clear as day Andy's new love of words can be heard in the quiet church as Saturday night mass is about to begin.   Attempting to "shh" him only brings giggles and louder shrieks of "Robb-be!"   Instead of shrinking in horror, I merely smile and convince myself that is Andy's form of prayer to God.  

Our church, St. Mary's, was built more than 100 years ago.   "Quiet rooms" did not exist back then and today's verbal child can be walked back to the entry area for a moment of "regrouping" before taking another slab at the hour of quiet.  

When Tom & I chose St. Mary's we did so because of its laid back atmosphere and acceptance of everyone.   As an older congregation at the 5o'clock mass, our boys have become 2 of the several "church babies".   The "older" congregation watched our boys grow, payed for their health, laughed at their never-ending energy and ideas, and re-assured us that their children once did the same thing.   It is so nice to hear this when episodes like these happen:  
*  Being a builder, Robby repeatedly emptied (after I refilled) the church pews of the hymnals to build a skyscraper in the pew.   When it began to lean, he looked over and said, "Bring the crane mom.   There's a problem!"
*  In an attempt to quiet / entertain the boys, they are allowed to bring a "silent" toy to church.   Sitting between them, the 9-11 homily focused on "letting go" - "forgive & forget".   Glancing from one to the other a look of horror came over my face.   Robby had pulled out his 12 ft. measuring tape (he'll only play with the real ones now) and extended it out at shoulder level a good 6-8 feet.   Extending across the isle the metal beam hung suspended for a mere second or two, but I envisioned it snagging the elderly couple in this pew behind it.   Striking it down and grabbing it quickly from Robby's hand, he turned to me and stated, "Just let it go, mom.  Let it go."  Clearly he's a smart boy.   Meanwhile, the older couple behind us nearly had a heart-attack from laughing so hard.   The lady was elbowing her husband in the ribs and pointing.  
*  Walking out of church one weekend, Robby discovered the holy water located by the doors.   Showing him how to dip his fingers in and make the sign of the cross wasn't quite enough for him.  I saw the gears moving in his head as pictures of pools and puddles brought an instant smile to his face.  Robby's splash and smile made me truly grateful that a "pool" baptism was not at this church.  

My church babes often leave my tired but content as we walk out the doors and see the glowing smiles and faces of our elderly friends.  We are blessed to have them!  

A Year of Unexpecteds

Can't...Won't...Unsure...We'll Just Have to Wait and See...all terms that hit our family head-on this past year came to a screeching halt once they realized a key trait of our family:  stubbornness.  

From the start Andy displayed this character trait even before he was born.  During each ultrasound, Andy remained breech (probably laughing at us) - not allowing doctors to view his back.   Today as I look back, I view this reoccurring behavior as a mischievous grin at failure to comply with norm or authority. 

After birth, Andy's smile and laugh became contagious.   Doctors watched in amazement as he began to sit up, move his legs, suck on his toes, refuse to roll over (even though he could), and even crawl.   None of these acts were expected, and many of them took a while to accomplish, but boy did he blossom.  

Andy's eagerness to join the "body slam" events in the living room have encouraged him to climb mini-mountains (couch cushions, stairs, and the occasional body that is in the way), scale the hearth by the fireplace (after stopping to grind his teeth on the cement), and master the art of turning on & off alligator tears to seek what he desires.  

Andy's family contributions have been inundated by doctor visits.   Some received negative comments, others merely nodded at his progress, and a few gave us positive reassurance (we like those doctors).   Andy's positive attitude, ever-contagious smile, and daily dose of family "love" pushed him further.  

Robby has become a self-diagnosed PT this year.  First, he convinced Andy to roll over by simply hurling him onto his back or stomach.   Later, he completed joint compressions (yes, he even says those words) on Andy's legs, & encouraged him to crawl by stealing away Andy's toys.   The everyday bumps and bruises have ensure Andy a childhood as close to "normal" as possible.  

I, too, have grown this year when the unexpecteds came up.   I never thought I would know as many different pediatric specialists as I do now.   How the human body works takes on a whole new meaning.   I didn't think I would really celebrate when my baby pooped, cheer him on to "eat" (now that is an unheard of in our family), and seal my lips when he crawls away while changing a diaper (even though you want to yell - lay still, I can't bring myself to use those words).   I let Andy stand up on the church pew and flirt with the older members of the congregation; they love it, and I am proud that he is able to stand.   True, I have fine-tuned the art of multi-tasking between multiple occupations:  teaching, mothering, being a wife, chauffeuring, medical assistant, laundry expert, appointment negotiator, and calendar coordinator.   I would like to think that I have become more patient in the process, but it really depends on the day.  

Each day we have learned to thank God for the gifts we have received.   The support, prayers, and positive thoughts have outnumbered our endless hours at the hospital and doctors' offices.   We have meet families experiencing the same unknowns that Spina Bifida challenges us with, and have found peace and reassurance in their advice.   Thank God for family, and their willingness to do whatever we need!  

A year of unexpecteds - yes, but what a blessing they have been.   Happy Birthday dear Andy; we can't wait to see what you accomplish this year as well!

It's Up, It's Down, It's Up Again!

It's up,it's down, nope it's up again - one would think I was giving a sports play by play,but that was a better description of Andy's swallow study than anything else. Concerned that Andy was gagging too often and not handling solids well, the doctors ordered a swallow test for him. There's nothing like watching your child vomit on a live x-Ray screen.

They were actually happier with the results than they originally thought. Apparently, Andy has no desire to slow down in life - including for chewing. Instead he merely swallows everything whole. Obviously this causes a slight problem when trying to tackle a steak, so they have ordered think purees for now along with air puffs until my insurance covers the twice weekly therapy visits to teach him how to gum food, and me how to blend his new dishes. Now, we sit and wait with fingers crossed that the insurance picks it up - $283/hr is a bit expensive twice a week for 3 months. At the same time I now need to figure out how to make it to two feeding therapy sessions and his Early On pt. While teaching full time. I seriously wish someone would have later appointment times, or at least not be booked solid in them. In the mean time,keep your plates well hidden because he gets seriously pissed when you don't share whatever snack or meal you are eating!

July - "Bracing" - Let Freedom Ring!

July has led to many new "freedoms" for Andy.   Determined to not be left behind, Andy quickly grasped the concept of climbing stairs.  His legs have proven strong enough to hold his weight.  As Andy began to pull-up to standing, we noticed his right leg was weaker than his left.   His foot often rolls to the side so that he is actually standing on his ankle.   To help him, Andy received his first pair of braces called D-AFO's.   The braces fit into a larger pair of shoes and look similar to high top tennis shoes.   Andy doesn't seem to mind the D-AFO's; they allow him to have more freedom to stand longer.

Andy is now working on "cruising" and beginning to use a toy "walker".   What an awesome sight to see!   Definitely a new freedom for a boy who didn't know if he would have any movement in his legs when he was born.  

Robby, too, has been working on new freedoms - for mom that is!   Potty training is going well and success is in the near future.   Similarly, sleep has increased thanks to the removal of his tonsils and adenoids and the introduction of Melotonin.   Outstanding progress!  Beyond that...he's loving life!   Here's a clip of him singing "I Dig Dirt" - fitting since that is exactly what he is doing!

August brings the 1 year marker of Andy's birth.   It is hard to imagine that he is nearly a year old.   August also brings more appointments:  CT scan, neurology appointment, a swallow study (he's having difficulty eating solids - often resulting in gagging & vomiting), urology appointment, and eye specialist as well.   Here's to another crazy month - let freedom ring!
             Andy 11 mon.                                                                           Robby 2 yrs.