The Luke Billings Foundation

August 2010, rode 4 miles in Pedal with Pete (bike ride for CP research) on a regular bike with training wheels.  Able to jump over a 10 bolster and up/down off an 8 inch step. Able to climb UP one flight of stairs without a handrail step over step.  Goal is to run a 1/4 mile without stopping by the end of kindergarten. Luke is also now a GREEN belt in Taekwondo :)

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 May 2010  Mr. Perdue's WestervilleTaekwondo

Luke, Mr. Morgan, and his buddy Evan (orange belts)

Taekwondo has been amazing for Luke...we already see changes both physically and emotionally.  The staff are top notch.

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April 2010

The latest update on Luke is our trip planned to Shriner's Hospital in Lexington to pursue a gait lab.  This is where they hook Luke up with sensors to a computer and completely break down his walking pattern to further "tweeze" out the minor gait deviations and how to best treat those i.e. What's tight, weak, what muscles are firing too late etc. This should help to answer questions about additional treatment, does he need a future Achille's lengthening on the right heel, electrical stimulation to different muscles? etc. (we are trying desperately to avoid more surgery.) BUT in the meantime...Luke is loving life:  Here he is in Florida...and this picture makes our hearts SOAR!!!!!!!!!!!!!!!!

Age 5 on Spring  Break :)  RUNNING on the beach!!!!!

Can you hear Chariots of Fire music in the Background???

NOVEMBER 2009  (surgery date 2/19/09) 

 Well, here we are 9 months post-op!!!  Just got done with round two of serial casting x 2 weeks (the 1st round was right after surgery in March).  Luke was able to keep that range of motion in his ankles for @ 6 months.  He is back at his normal range. He is still wearing splints at night and alternating a knee immoblizer to keep his ankles and hamstrings stretched out. Its a small price to pay for not having to get Botox and wear longer leg braces anymore :)

Luke is now jumping 20-26 inches forward, and down off a 10 inch bench without loss of balance.  Able to jump over a 6 inch bolster 3 out of 5 trials, and able to single leg stance for @ 2 seconds.  He is able to walk heel/toe gait @ 25 feet without cueing to "get heels down."  He no longer wears his braces or SMO's but just his shoe inserts (pollywogs).  He is running with his peers much faster than before and for the first time ever will attempt his first foot race at the Pilgrim's Progress Tot Trot!!!  Its a half mile and although he may be slow....we think he can do it!!!!! 

Picture Below...Kidnetic Energy with instructor Missy

June 2009....Luke continues to progress!!  He is gaining independence quickly on the stairs with a reciprocal pattern with one handrail, jumping forward 21 inches, and down off of a step 4-6 inches high, and over a hurdle 3.5 inches high AND wide.  His single leg stance time has improved too.  The changes are more subtle but still VERY FUNCTIONAL!!  Below is Luke at the pool....so his first day of swim lessons: our daredevil asks "Mr. Doug," his swim teacher at The Lakes (who is awesome I might add), "Can I go off the diving board?" 

Luke on "his" treadmill 10 weeks post-op.

Wearing SMO's. (is that treadmill from the 1970's ??)

Luke also gets his first big boy bike 5/9/09. 

At nearly 3 months post-op:  he is able to jump forward15-19 inches in his bare feet (two foot take off and landing) and step up and down independently over a 6 inch step.  He can jump down off of a 4 inch step (all skills he could not do prior to surgery).  He has started running.  He still continues to prefer walking with  an "on toes" gait pattern but can correct intermittently with cueing. Weirdly enough, when we put 1 lb. cuff weights around each ankle, he walks on his toes less?? Maybe this assists with getting better terminal knee extension in preparation for heel strike as he steps.  We still have much work to do with hip, calf, and quad strengthening. We continue to splint and stretch the hamstrings and calf muscles at night.

Luke with "Buddy Bear" & speech therapist Julie (she ROCKS!) 

8 weeks post-op.

The CASTS ARE OFF and Easter 2009 is with Flat Feet!!! 

But before they come off...."I'd Like to Thank..."

by Lil M.C. Billings

The down side to life after serial casting, is that you MUST do the night splinting to maintain the range that is gained.   For us that has been tedious!!  We continue to have to check them all night for skin irritation and they are not the most comfortable.  We may have to end up using bi-valved casts.  The orthotist is very sick of seeing us:(  Below, are the contraptions that Luke has to wear at night.

8 weeks post-op: After 2 weeks of serial casting.....

Range has improved in the right ankle from 6 degrees to 22 degrees!! This has allowed him to get that right heel down a little easier.

Working on step ups with Catie

Strengthening the muscles that allow foot clearance! 

Stride length and wide base.  Still much work to do.

Seeing the Easter Bunny with sister Alexandra!!

All we want for Easter is lots of candy & no therapy!

For those of you who don't know, Luke had an SDR (selective dorsal rhizotomy) on Feb. 19th by Dr. T.S. Park in St. Louis. 

This is a very risky surgery on the spinal cord nerve roots.  One that is permanent.  But, as of now, the only real way to reduce, somewhat permanently, spasticity in the legs of children with cerebral palsy.  The screening is critical for being the ideal candidate.  The staff at St. Louis Children's Hospital were wonderful to us, and we can never repay Dr. Park who has made it the focus of his neurosurgery career to fine tune this surgery in order to have the success rate it has today for our children with cerebral palsy.

March 31st 2009- nearly 6 weeks after

LUKE WITH THERAPIST and GRANDPA 

It is nearly 6 weeks after SDR, and Luke is doing amazing!!  His progress continues, but currently it continues while he is in 2 casts on his ankles. No, No, No.......he did not break anything.  What happens after the surgery, as we were well aware that it would, with spasticity permanently reduced, we are able to tell what is truly weak AND what is truly tight.  The spasticity always covered up the real issues and many times confused us.  So, what we found (along with other tightness) was Luke had 50% less range of motion in his heelcords with the right being much worse than the left.  So, as much as Luke was trying to walk the "right way" after surgery, he could not,  because the muscles and tendons had shortened from all of the "toe walking."  SO, that is where we are now.  We are in the second week of 2, with serial casting to stretch the tight tissue in his ankles.  This will have to be maintained with night splints after but the great news is that as long as the skin hold ups, you can do this as much as needed.  The research has shown that children do not lose strength while in the casts and the new range of motion can be maintained for long periods of time.

Of course the soldier that Luke is, rolled over after the first set of casts were put on and he proudly said " I want to call my aunt CeCe and show her my new blue boots!!"  Our hearts melted at his resiliency.  His second pair of boots are neon green and he thinks he is a super hero!!!!  We tend to agree with him!!!!!!!!!!

We can't say enough about the fabulous therapy that he is recieving at Westerville Children's Close to Home and his therapist Catie.  She is unstoppable at keeping Luke motivated and progressing him.  Her energy and enthusiasm is second to none!!! We have been very lucky to have her in our lives........and lately that has been nearly everyday:) as the therapy protocol following rhizotomy is rigorous.

Our next trick in the bag for Luke will most likely be some electrical stimulation to further strengthen his leg muscles such as his quads, and ankle muscles.  We have been practicing wearing the electrodes only..........we told him they were special stickers, so next week he should be ready to roll with that.  He will also be returning to school at Big Walnut and will be further challenged by his great school therapists Leslye and Ann.

TAKING A LOOK BACK TO ST. LOUIS................

After surgery and laying flat for 3 days,

Up out of bed Day 3 2/22/09 with nurse Anne K.- Luke does not look too thrilled.  Bring on the pain meds please!!  This nurse was an angel from above!!! She has been working with Dr. Park for more than 10 years.

Day 3- first day out of bed.  Daddy practices transfers bedside.

Remember the "Rolling."  That was it for post-op day 4 =2/23/09

Post -op Day 5 - exhausted and moving SLOW

but 100% better than the day before.

Post-op Day 6 with Alexandra and "Ellie" the therapy dog.

Bedside CandyLand with Aunt Tracie!!  AND ice cream :)

And for a little surgery humor........

Who can forget the dreaded first........before they will let you leave the hospital.  You would think we would have given Luke some privacy, though we pulled the curtain in front of him, we forgot about the window behind him.  Oops!!!!

Luke is glad to be home.  Nothing says it like a tall cold.......popsicle.  A super hero popsicle at that!!

The decision to have the rhizotomy was one that took our family 2 years to agree on unanimously.  It was a lengthy process of research, interviews, and prayer. We fully understand the difficult decisions parents try to make for their children, and especially those who are special.  It is never easy.  But in this case, absolutely, it was well worth our leap of faith.

Many thanks go out to our family and friends who brought dinner to us, and gifts to Luke, who called and e-mailed with words of encouragement and support after his surgery.  Most importantly, for those who prayed so diligently for us, and who continue to pray, as Luke heals and discovers how to use the new body he has been given!!!!

Sincerely,

The Billings Family