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.

Colts going to the Superbowl!

Eric and I went to the Colts/Jets game today. Had a great time with friends and we are so excited that the Colts are going to the Superbowl in Miami. Last time they went to the Superbowl it was Feb. 2007....I was pregnant with the boys and didn't know it. How life has changed since then.

New year, lots of possibilities

So it seems I'm not very good at blogging consistently. I try...

We had a good Christmas/New Years. A bought of the flu slowed us all down for Christmas, but we carried on and didn't let it dampen our spirits too much. December passed quickly and January seems to be on the same path. Eric and I spent 5 days is Jamaica to celebrate my 36th birthday. Sun, food, drinks, sleeping, relaxing. Perfect.

Back at home and back to our routine. Hippotherapy, Physical, Occupational, Speech, and Developmental Therapy. Something everyday. Keeps us busy. Keeps Cole really busy!

Cole had x-rays on his hips. He gets them about every 6 months. The doctor is a bit concerned with his right hip. It shows slight movement, meaning it is moving toward dislocation. This is very common with CP kids who do not walk/weight bare. We are doing our best to have Cole in a stander everyday, but it is not the same as normal walking. Cole is in the process of getting a really cool and high tech walking apparatus. It is called a TAOS walker. Check out the website. http://www.taos1.com/. He had his first fitting. Now we are waiting for insurance... This is going to change his life. For the first time he will be able to have independent movement. I can't wait!

busy busy busy

Busy week. Lots of doctors apts. Saw Dr. Dieterich (physiatrist) today. Cole is now scheduled for another round of botox next Tuesday. The soonest you can get botox is every 3 months. We are right at 3 months. She is also troubled by the tightness in Cole's hips and thighs and his legs are too different lengths. He is having x-rays done tomorrow. Hope it is nothing.

Little Santas

The week has been filled with bad weather. Another snow day with lots of wind, no power for 7 hours one day, the usual wonderful winter weather. But we continued on and had a really busy week of therapy, school and playdates. Eric and I also went to a HatWorld Christmas party on Friday night and we are going to the Colts game tomorrow.
Cole did great at school this week. His teachers/therapists are really expecting a lot from him and therefore pushing him out of his comfort zone. I love it. I watched him side sit, with arms/hands to the floor and he sat all by himself for a good 10-15 seconds. I've never seen that before. We also noticed that his legs are now different lengths...what that means, I'm not sure but we see Dr. Dieterich (physiatrist) on Tuesday so we'll address it there. He has also been pretty cranky lately and not sleeping well, so he may just be going through a growth spurt.
Gavin went in for a hearing test this week, which he failed due to fluid in his ears. So now we are back to the doctor on Monday to fix that, before heading back to Methodist Hosp. for another hearing test. It's hard to believe we can fit all of this into our already busy week.

1st Snow

We had our first snow today. Maybe an inch at the most, but it was the first time the boys noticed it and wanted to play in it. Cole had hippotherapy cancelled due to poor road conditions (don't laugh my WI/MN friends), so we had a rare free morning at home. It took us so long to get bundled up. We were all sweating by the time we got outside...but it was worth it. With Cole loaded up in the sled and Gavin blazing the path we had an awesome time.