Action Jackson

Cole...he is on my mind constantly all day, everyday. How can I make his life better? He sees doctors. He gets x-rays. He does hours of therapy every day. He gets botox injections all over his body. He gets strapped to medieval contraptions that allow him to 'stand' and weight bare. The local doctors tell me he needs to do all of these things to postpone the inevitable... hip dislocation. Postpone, not prevent.

Last April we heard about a doctor in New Jersey. His name is Dr. Roy Nuzzo. He performs a procedure called Selective Percutaneous Myofascial Lengthening or Percs. He is a bit of a rock star in the CP world. Genius, 'out of the box' thinker, and very eccentric. We had Cole evaluated in July by video and he was definitely a candidate for the surgery. We talked about the surgery at first, but the cost and inconvenience of traveling to New Jersey with Cole tabled the discussion.

Fast forward 7 months: Cole and I visited the Jackson Center for Conductive Education on Friday. http://thejacksoncenter.org/. We met with the owner/OT/mother of Jackson w/ CP, Lara DePoy, for an evaluation. And here again she brings up Dr. Nuzzo. Her son and 3 other children from the Jackson Center have had the surgery with Dr. Nuzzo and all are extremely happy. She tells me one thing about it... Don't wait too long. If Cole's hips dislocate he will not be able to have the surgery. And in that one sentence a decision was finally made. Lets do something to prevent what the local doctors deem inevitable.

Here is a brief explanation of the theory behind the surgery from Dr. Nuzzo's website.

Percs is an approach to muscle reactivity, range and control. It is designed with respect to the neurological control mechanisms, and although it is involved with creating length, length is not the singular goal.

For more info on the surgery, go to http://www.pediatric-orthopedics.com. Click on treatments and then Percs.

Cole is scheduled to have surgery on April 6th, in Summit, NJ at Overlook Hospital. Please keep Cole in your thoughts and prayers. He is my ROCK STAR.

March for Babies

It is March for Babies time again this year and we have been thinking a lot about why we want to walk this year.


Reason #1: Cole and Gavin. Without the March of Dimes and their efforts to improve the health of babies, our MIRACLES would not be with us today.

Reason #2: We walk with March for Babies each year to raise awareness of the lasting effects of prematurity and we walk with the hope of eliminating premature births in the future. Premature babies are 8 times more likely to develop cerebral palsy than full term babies.

On April 25, 2010 the 4 of us will be walking the 5 mile downtown Indianapolis route. We had a great time last year and are looking forward to walking again.

If you would like to donate to our walk please go to http://www.marchforbabies.org/ and type in Julie Johnson under "Find a Walker". We appreciate any amount you are able to donate.