Walking for Dreams 2014

I haven't been a very good blogger recently...but I always have time to post about Walking For Dreams!   So here is our annual plea to help The Jackson Center!

It has become an annual event for our family to participate in Walking for Dreams to benefit the Jackson Center for Conductive Education.  Our son Cole has been attending the Jackson Center for four years.   Your donation of $10, $20, $50 or whatever your budget will allow, will give Cole and all his friends at the Jackson Center a greater chance at independence.

Conductive education is a program that helps children and adults with cerebral palsy develop motor skills through repetition, peer interaction and positive reinforcement.  The Jackson Center is the only conductive education program in Indiana and while it is not a “cure” for Cole’s cerebral palsy, it has been tremendously effective for him. 

This has been a challenging year for Cole.  X-Rays revealed that both of Cole’s hips were dislocated and he would need surgery to “fix” them.  In December, he had an innovative bone graft hip surgery. Typically kids are out of school for two months while they recover.  But with the Jackson Center’s caring and qualified staff, Cole was able to return to school in January, where all his medical and educational needs were met.  The Jackson Center relies on your financial support to continue to provide this type of personal care for all its students.

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 www.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.                        

Want to walk with us? Join Cole’s team at the White River Canal in Indianapolis on Sunday, May 18th at 2:00.

Your gift, no matter the amount, will help us achieve our goal.  Please make your tax deductible donation today.

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.