Home

We are home!  Cole was doing so well they discharged him late Friday afternoon.  We brought him back to the hotel for the night and set out Saturday morning at 4 am for the 12 hour trip back home.   Cole was a great traveler.  He slept a lot and watched movies.  The weather was not as cooperative. It rained most of the way and we were really happy to be home.  

Cole's first night at home was a bit ugly. He cried most of the night and Eric and I traded off sleeping with him. Just hoping the sleeping gets better, as he's pretty great during the day.  On the agenda is stretching and recuperating and hopefully sleeping.

Great to be home. What a wonderful Christmas present to have our family back together again.

Day 3...

Thursday morning!  Well, day three is upon us and all is pretty well.  Cole continues to be a trooper through all the poking and prodding.  Although, when the nurses come in he begins to whine.  He is onto their game.  Yesterday was spent keeping him comfortable.  He is on a liquid diet, but really doesn't want to eat anything but applesauce.  So we've been sneaking him cups.

He has a really cool numbing aid that sends local anesthesia to his hip area.  It's call an "onQ" and looks like a grenade filled with liquid and a tube that runs from it into a very small incision in his thigh.  This allows them to use minimal narcotics.   Last night the tube on his left thigh came out and his pain increased significantly.  He would wake up every 30 minutes in serious pain.  It wasn't until 2am that they finally figured out what had happened.  Unfortunately, it cannot be reinserted.  So his morphine has been increased.  He slept well after that..

Today the PT is here.  She is going to start range of motion exercises and try to get him to sit up in a chair.  He started crying when he saw her.  This should be fun!

Surgery is complete

Cole is finished with surgery and doing well.  It lasted about 2 hours and no complications.  Very little blood lost.   Coming out of anethesia was a little rough.  Cole seemed to be in considerable pain so they put him back to sleep for a few more hours.  He is now settled in a beautiful room called "Liam's room".  It is a private room and looks like a little kids bedroom.   Lots of comfy chairs and a little bed for us.

He is watching his iPad and DVD's and asking for water (which he cannot have just yet).   Just got changed and rolled to his side and only yelled a little bit.  I think he yelled more because he couldn't see his iPad than he was in pain.  Tomorrow he starts PT and they want him to begin movement as soon as possible.

We are all tired physically and mentally.  Hoping he rests comfortably tonight.   Thanks for keeping Cole in your thoughts and prayers.  We felt your love today.

Pre-Op appointment done.

Early morning appointment with Dr. Nuzzo went well.  He is as unique as ever!  Called Cole's case "Vanilla" and it doesn't get any more straightforward/ uncomplicated than that.  They will be doing the SLOB procedure on both hips and Percs in both adductors and hamstrings.  Surgery is scheduled for 7:30am tomorrow and should take 3 hours.  If all goes well he should be discharged Friday afternoon.

We now have a whole day to kill. Summit is such a beautiful little town. So quaint.  Who would have thought NJ was so pretty. Wish it was summer so we could wander around a bit. Thinking about heading to the movies.  Maybe Frozen again. Will update tomorrow!

We made it!

What a day.  If 12 hour drives could be considered easy, today was an easy day.  We left this morning at 4am.  Mom drove the whole way.  (I offered to drive over and over again, but she preferred to be behind the wheel.)  The weather cooperated most of the way.  Only a short stretch of freezing rain.  Not much traffic and to top it off Cole didn't cry once.  He was happy the entire way.  WOW couldn't ask for a better drive.

We pulled into New Providence, NJ at 3:45.  Our hotel room is wonderful.  An apartment with full kitchen and separate bedroom.    Perfect for Mom and Eric and I to rotate sleeping during off shifts from the hospital.  Tomorrow is a visit with Dr. Nuzzo.  He will make the final determination as to what all will be done during surgery.  I am anxious to finally meet with the doctor.  Eric flies in Monday night at 9:30pm and I will pick him up from Newark Airport while mom stays at the hotel with Cole.

I will post surgery time once we know it.  Keep up the prayers.... they definitely helped with our safe travel!  

Cole's NJ adventure

We leave in 4 days.  Cole, my mom (Grandma Trapp) and I will be departing Indiana early Sunday morning for the 12 hour drive to Summit, New Jersey.   The reason?  Cole has two dislocated hips that need to be put back in place.  Because Cole does not weight bare, he never developed deep hip sockets that keep his femur in place.  Therefore, they drift out of socket.  Conventional medicine and our local physicians believe in the femoral osteotomy.  Put the hips back in place, pin them, body cast for 6 weeks and come back in 5 years to do it all over again.  This technique "fixes" the hips in the short term, but does nothing to solve the underlying problem.  Hence the reason we are driving to New Jersey.
Dr. Nuzzo is the guru of innovative CP surgical techniques.  He believes in looking at the neurological disfunction and not just the affected bone structure.  We went to him in April 2009 and Cole had a procedure known as Percs done.  This time he will be doing the Superio-lateral outcropping bone graft or SLOB for short.  Lovely acronym I know.  He is basically constructing new hip sockets for Cole so his femur cannot come out again.  
Surgery is December 17th.  Cole will be inpatient for 3 or 4 days.  Then will come home wearing a hip brace for 4-6 weeks.  No weight baring for 4 weeks.  But hopefully he will be recovered enough to return to school at The Jackson Center for Conductive Education in January.
I will do my best to keep you updated during surgery and afterwards while he recovers.
Please keep Cole, our family and his doctor's in your thought and prayers the next few weeks.

Walking for Dreams

It is fundraising season again and we are fiercely trying to raise funds for The Jackson Center for Conductive Education.  If you would like to donate please go to www.walkingfordreams.org and select Cole as your recipient.  Here is the letter we sent out this year.

 

Dear Friends and Family:

As a parent of a child enrolled at the Jackson Center for Conductive Education, we are asking for your help to raise money through Walking for Dreams.  This is an annual walk that benefits both the Jackson Center and our family.  The money raised by our team will split on a percentage with a portion being credited directly toward Cole’s tuition and the remainder being used to help defray Jackson Center operating expenses.

The Jackson Center is the only conductive education program in Indiana and while it’s not a “cure” for Cole’s cerebral palsy, we can testify it’s been tremendously effective for him.  Conductive education is a program that helps children and adults with motor disorders develop motor skills through repetition, peer interaction and positive reinforcement.  The goal of conductive education is to help each participant achieve the highest quality of independent life.

Since Cole began attending the Jackson Center, he has accomplished so much…

*The rigorous physical therapy aspect of conductive education has helped him increase his muscle strength, enabling him to walk in his gait trainer farther and with less assistance.                               
*He is demonstrating new abilities to use his hands to reach, grasp, and manipulate objects.          *His communication skills have exploded, allowing him to take part in family conversation.                                                               
*He can count by 10, spell his name, and recite a few books by memory.

Cole has shown so much progress, but needs to continue the 5 day a week intensive therapy to avoid complications such as scoliosis, muscle atrophy and hip dislocation resulting in major hip surgery.

Because of this and more, we are committed to ensuring that conductive education remains available in Indiana and have set a goal to raise $5,000 for Cole and the Jackson Center.  If you are willing to help, you can make a donation by:

·         Visiting walkingfordreams.org to make a donation online.  Cole’s team is registered on the site.  Click “Make a Donation,” select “Individual Walker,” then choose “Johnson, Cole.”

·         Mailing a check to the Jackson Center, 802 N. Samuel Moore Pkwy, Mooresville, IN 46158.  Please make the check out to Jackson Center-Walking for Dreams and include Cole’s name in the memo line.

Your gift, no matter what the amount, will help us achieve our goal.  More than that, it will give Cole and all of his friends at the Jackson Center a greater chance at independence. 

Thanks for your help! If you would like to walk with us, please join us in Indianapolis on the White River Canal, Sunday, May 19th at 2:00 p.m.   With love and gratitude:  Eric, Julie, Cole and Gavin Johnson

Yes! We want to help.  Good luck with your walk!  Enclosed is our pledge of $ ________.

Name ___________________________________________________________

Address _________________________________________________________

                _________________________________________________________

E-mail __________________________________________________________

Jackson Center Student – Cole Johnson

The Jackson Center is a 501(c)(3) not-for-profit organization. Contributions are tax deductible.

March 19th: Old Man Gavin

Gavin celebrated his 100th day of school this past week.  In honor of the day he was to dress up like he was 100 years old.  Well, I don't think we achieved that look, but his super cool suit and glasses from Goodwill sure made him look dapper. 

 

 

March: Key West!

One month later we were off again.  Lids "Big Trip" was held this year in Key West.  We were in search of sun and sand and found none of that.  It was cold.  Really cold.  Highs of 60.  Cloudy, windy, rainy, and damp.  So as you can expect we made the most of our time there...in a bar.  We spent the week flip flopping our days and nights.  Sloppy Joe's was our bar of choice and we just happened to make friend with the band playing.  We helped them close down the bar each night.  They were The Benderz out of Phillie.  Great group of people.  Here are my only pics of the trip.

 

 

 

February 3rd: SuperBowl Weekend

SuperBowl weekend in New Orleans did not disappoint!  We had a fantastic time and were able to be apart of some exclusive activities.  Eric worked quite a bit this weekend but he was still able to have some fun too.  Work hard, play hard!

 

 

 First night at Pat O'Brien with a Hurricane!

 Flo Rida!

 Rob Thomas and Matchbox20.

 One Republic.

 The Lids contingent: Amy, Rick, Matt, Amanda, Caroline, John, Julie and Eric.

 Jesse Jackson and Paul McCartney.

Will Ferrell.

Karate 101

Gavin started taking karate in January.  He goes two times a week for 30
minutes a time.  He LOVES it!  So glad we found something that is all his and he loves.

January 20th: Julie's Birthday

This year I celebrated my 39th birthday with my favorite boys.  Gavin did the cake decorating with some help from Daddy.  Beautiful!

 

Merry Christmas

 

Wishing everyone a very Merry Christmas and Happy New Year! 

 

Halloween on the farm

One of our favorite fall traditions is going to the pumpkin patch.  We love the farm that is 5 minutes from our house.  This year it was still warm and sunny.

 

 

Mom and Cole climbing the pyramid.

 

Cole in the hay.

 

Cole and Gavin.

 

Gavin and Cole.

 

C and G.... again.

 

Daddy and Cole on the hayride.

 

Johnson self portrait.

 

 

Cole trying out his costume at Grandma and Papa's house.

 

Pumpkin 'carving' with Daddy.  Note the paint and brushes.

 

Gavin's kinderskills class and Mrs. Garnett.

 

Listening to story.

 

Blue angry bird and Bad piggy!

 

Lauren, Stephanie, Cole, Gavin and Caroline before the big night!

Fall break in South Carolina

We were so lucky to be able to spend a week with my parents in South Carolina for our fall break.  The boys and I went for a week and Eric came on the weekend.  We had a ball exploring!

 

 

 

Playing 'pirate' in the tree fort.

 



 

Grandma and Shiloh

 



 

Gavin

 

 

Mom and Dad's backyard.

 

Feeling moss on a rock.

 

Cole playing in the fountain.

 

Beautiful day!

 

Gavin feeding goats at the Carl Sandburg home.

 

 

Cole being rudely awakened by the Sandburg goats.

 

Papa and Gavin bonding.

 

Ahhh....

 

Cole riding a cat at the zoo.

 

Lion at the zoo.

 

Fishing!

 

Trying to get a family portrait...

 

 

trying again.

 

Goofing by the fountain.

 

Gavin.

 

Coley.

 

Gavin, Papa, Grandma and Cole.

 

Papa taking action against Gavin for purposefully trying to ruin every picture.