the caleb syndrome, part #967

an update on the fantastic 5 year old...

caleb's physical therapy has been going well, but both the physical therapist and i have noticed that it isn't that caleb is just lacking physical strength & needs exercises to build up that strength, but that there is something strange going on with his legs.

something strange.

huh.  we've never heard that one before when it comes to caleb.  {sarcasm.}

he was nick-named "the caleb syndrome" at about 2 years old when all of his symptoms couldn't add up to one clear diagnosis.  we accepted that this was just the way it was going to be, and focused our energies in just getting him to the best physical condition we could instead of worrying about what we couldn't control.

however, ben & i felt like there was something off, which was why we pushed to get a physical therapy evaluation in the first place.  

and after working for a couple of months, she and i both felt like something was off again.  while doing stretching and exercising, we both saw that he was unable to point his toes....even just a little bit.  and it wasn't like he wasn't strong enough.  he just wasn't able to.  when we would hold his toes down and gently stretch them forward, his knees would come up.

as ben and i worked with him in the swimming pool, we would watch him kick.  he would constantly be kicking in the flexed foot position, and no matter what we did, he could not straighten his leg and foot together.  completely unflexible.

on the other side, when we would flex his foot and then push up, his foot would flex so much that as his toes would be pushed up toward the front of his leg, his toes would almost be able to touch his shin bone.  completely too flexible.

also, whenever caleb would push on the balls of his feet, like try to balance or put any weight on the balls of his feet, his legs would tremble.  this is called clonus and usually points to a neurological problem.  caleb had this for a while when he was younger, but it was not severe, and the repeated MRI's could not find the source.

but in physical therapy, we saw that whenever caleb rides a bike, his legs trembled.  whenever he balances on anything, his legs trembled.  when he walks on his tiptoes, his legs trembled.

so, we were referred to an orthopedic specialist and a neurologist.

luckily, it was just in the nick of time that we found this out.  we were heading to utah the next week and had worked with shriner's hospital for about 2 years, and already had a relationship with both the orthopedic specialist and neurologist.  we were able to get a last-minute appointment and evaluation with them.

while we were there, we heard the fantastic words,

"you have no idea how rare this is."

wow, that's awesome! {repeated sarcasm}

we have heard that too many times and would always inwardly groan at the phrase.  it's not like you get a cash prize when you are told your son is "rare."  believe me, if oprah were behind the dr's curtains and as soon as the word was uttered she emerged yelling, "YOU GET A CAR!  YOU GET A CAR!  EVERYBODY WHO'S RARE GETS A CARRRR!" we wouldn't mind being told this so often.

but what it usually means is that the doctors have absolutely no idea what's going on with him, but they know that something is wrong.

basically they concluded that yes caleb has something going on.  yes it is pointing to something neurological and more than likely connected to issues with his spine. and yes they may have missed it during those first 2 years because it is so rare, and because he was so young that they were hoping that the small things they were seeing would normalize as he developed.  they are now pointing to a diagnosis that had been brought up 5 years ago, but was dismissed.

so.

caleb, leah and i will be heading back to utah in the beginning of september.  he will have a full brain and spine MRI done.  even though he has had 4 MRI's already, this one will be a little more intense.  unfortunately ben can't take the time off of school & work, which is totally understandable. i'm grateful that we will have family to help me with leah while i am there with caleb.

then i will meet with the ortho. specialist and neurologist two days after the MRI to discuss the conclusions.

there are good and hard things about each outcome:

if he does have something going on that the MRI catches, it may result in spine surgery.  but that could lead to the possibility of him getting better, and not struggling for his entire life with these physical delays.

but still.

spine surgery.

if he doesn't have something going on, then we will go back to where we have been.  and just accept that he is where he is, and he will stay this way and we will help him be his best with physical therapy and working from home.

with either outcome, i know things are going to be alright.  and i have to say that i'm so grateful for the amazing medical staff at shriner's.  honestly, we have considered working with them a privilege.  

and no matter what, 

we are so grateful for mr. caleb and for the blessing it has been to be a part of his life.

a trip to shriner's is always such a wake-up call to us.  

things could be so. much. more. difficult. than what we are facing.  

we have a happy, healthy fella who loves life and has overcome so much already.

and we know that no matter what the outcome is, 

he will be able to overcome that too.