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.