Serial Casting

This evening Levi gets his first of many casts in a treatment program called "Serial Casting".  Serial casting involves the use of plaster and/or fiberglass casts to restore or improve range of motion. Muscles are placed in a lengthened position (i.e. stretched) and a cast is applied. The cast is then removed after one week and his legs will be measured to track the improved range of motion and position; a new cast is then applied. The average gain is 5 degrees per cast.  This process continues until the desired range of motion is obtained and the entire process may take from 12 to 16 weeks depending on how his muscles are responding to the stretching and if his skin has negative reactions.  Some patients have the casts removed and re-applied back to back, others have a "holiday weekend" approach of removing the casts on a Friday and getting new casts the next Monday.  We will see how he responds and decide as we go. 

If you'd like to learn more watch this video that follows a 4-yr old with CP that undergoes serial casting.

Levi is currently measuring -40 degrees and he needs to be at 0 (or "neutral").  Once he is at neutral and can stand flat-footed he will be casted for two more weeks in that position.  Then he will be molded for braces the very same day his last cast comes off.   He will need to wear the braces for 12 months and sleep in splints at night, all the while doing lots and lots of therapy.  After all of this our confident hope is that he will be able to walk unassisted. 

This is how Levi stands now... 

The first half of his PT appointments are spent stretching him after they use heating pads to warm up his muscles so they are loosened a bit... and he gets to catch up on his morning reading :)

And the rest of the session he works on standing flat-footed with a wedged platform under his feet while his legs are straight...

He does great and we see that his body can do most of these tasks but when therapy is over his muscles tighten up and he immediately regresses. 

We have to find a long-term solution and we are trying real hard to avoid surgery.  We also don't want to take the Botox approach that has been given to us because that will just trick his muscles into relaxing and once it wears off in a few months his body will go right back to the tight tone.  The other option is medicating him with muscle relaxers and that is not ideal either. 

With the serial casting his muscles are very slowly stretched and real gains are made.  His range of motion will improve steadily and it will be a natural, non-invasive, non-medicated way to permanently lengthen his muscles. 

We know this will be a hard road and a little tough on us all but we believe the rewards will far outweigh the short-term discomfort and inconvenience. 

He doesn't really understand what's coming so please keep him in your thoughts and prayers.  Thank you! 

Medical Synopsis on Levi

Greetings!  Mike and I have decided to start this blog as a way to chronicle Levi's disability and treatments.  We know that he is loved by many so our hope is that you will be able to follow along and root him on in his Fight to take Flight!

I'm sure there's a lot of mystery about Levi and what is wrong with him.  This first post will hopefully clear a lot of that up, and at the end you will know what we know.   Below is a synopsis of the findings of the neurologist, physiatrist (a rehabilitation physician who specializes in nerve, muscle, and bone illnesses that affect how you move) and genetics specialists at Phoenix Children's Hospital. 

Levi was formally diagnosed with Cerebral Palsy (CP) in July of this year (2013).  Cerebralpalsy.org says that Cerebral palsy affects body movement, muscle control, muscle coordination, muscle tone, reflex, posture and balance. It can also impact fine motor skills, gross motor skills and oral motor functioning.  Levi has trouble in all of these areas, and the more he grows the worse it gets. 

We don't know what has caused this, and frankly that question has been counter-productive for our hearts but is a necessary journey for any parent of a "special needs" kiddo.  There wasn't an accident or trauma that explains a brain injury, something in his brain just didn't develop properly somewhere along the way.  It is what it is, and absolute answers to our questions may never come.  And that's ok.  Most days :)  We are not done in our quest to diagnose him and have some tests coming up, so we will update you on that when it's time. 

Levi also has Apraxia which is a neurological disorder that affects motor planning.  It's the inability to execute learned purposeful movements (Wikipedia).  So although he knows what he wants to do, when his brain sends the signals to his body it all gets jumbled up (like my fancy medical term?) and simple tasks become very complex for him.  Examples of this are getting a toy from under a table if a chair is in the way or putting large puzzle pieces into a ziploc bag.  He is a very smart boy and has no cognitive delays so when he can't execute these simple tasks he can become very frustrated.

Levi can't walk without his walker, he can't stand up on his own, can't climb up onto the toilet.  He can't dress himself, put on his socks or shoes, brush his teeth or wash his hands.  He tries, with a smile on his face, but he is dependent on others for most tasks.  He falls over very easily when sitting on chairs or even when he is kneeling on the floor he topples over sometimes.  His core strength and balance are severely lacking. 

He has "tone" in his legs which means they are very, very tight.  Some days we can't get his feet to unlock from the pointed "tippy-toe" position.  He sometimes has leg spasms.  As he grows his feet continue to point inward.  When he walks with his walker he drags his right foot and has a hard time lifting it up fully to take steps.  Levi crawls everywhere unless we make him use his walker!  If he is up on his feet it forces his calf muscles to stretch which is initially very painful for him, but once he's up and used to the stretch he shows off by "running" with his walker if he's in a wide open space.  Video to come, guaranteed :). 

So that's the skinny on Levi's little body.  It's messy!  But he sports it with a smile and on the bad days he asks for lots and lots of Cars band-aides to stick all over his legs :).  He is SUCH a joy, and although he doesn't know anything different, he lives life in an impaired body with a great deal of patience and a quiet determination that moves me.  My papa has told me from the get-go that what God withheld from Levi's body He doubled up in his heart.  I agree, he is a special little boy with a heart and spirit that are remarkable.