What's so funny?

Cole has just been cracking me up lately. This post is dedicated to him.

Cracking up to the movie Cars.





We visited Tri-West Middle School last Friday and we were invited into Mr. Frederick's band room. Cole LOVED listening the band.

Cole at Piper's 2nd birthday party.

Happily riding Gideon the horse at TherAplay.

Breaking ground!

OK...so today was a really, really good day. A day when you think gosh how did I get so lucky to be living this life? We broke ground on our swimming pool! They say 30 days from now it will be all done... depending on weather. The boys loved watching all the trucks and machines. It is going to be so wonderful. Both boys LOVE the water and it is so good for Cole. And I am probably the most excited of everyone. I have to pinch myself. Life is good!

The first of March! Can it really be here? Snow on the ground and still in the 30's but I do smell a bit of Spring in the air. Perhaps it's the chirp of baby birds. We are busy, busy, busy this month. We've begun the process of converting Eric's den into a bedroom for Cole. This will move him to the ground floor and no more stairs. It was really important to me that Cole have as much independence as possible. Once he gets his wheelchair he'll be able to get to his room without assistance. So we moved Eric out and painted and carpeted this room. Yes, it was painful to put carpet over wood floors. But the project is moving along nicely and hopefully we will completely move Cole downstairs next weekend.

I was super lucky to be able to go to Chicago this weekend and spend Saturday with my long time girlfriend Crescent. We have been friends since 5th grade. She was diagnoses with stage 2 breast cancer in October and is in the middle of chemo treatments. Her spirit is incredible and she looks wonderful. I too wish she still lived down the street.

We are getting ready for Cole's April surgery. He went in for pre-op testing today at St. V's. Blood work and an EKG. They also want a urinalysis???? OK, who can tell me the best way to collect an un-potty trained 2 1/2 year old's urine? He never fails to pee in the bathtub, so I am going to try my best tomorrow night to catch the stream. The alternative...a catheter. I've got to make it work.

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!