Isaac's Condition Update

So I wanted to give an update on Isaac's condition and what issues we are facing at this point in time.  Before surgery we were dealing with a spinal deformity.  Isaac's TB has severely deformed his spine.  On July 8th he had surgery to fix the deformity and woke up without the use of his legs.  After another surgery July 20th and 2.5 months of rehab, Isaac left CHLA and came home.  He started to make real progress with his walking once he came home.  He was driven and determined to walk normally once more.

Isaac has been in Physical Therapy since July and though he is able to "walk" and snowboard with his braces on, once we take the braces off, his feet quickly flip and turn out.  They were hopeful that PT would help strengthen the muscles and pull his feet back to the normal position but PT has only been successful in working on his balance and walking with his braces on, all the while his feet have gotten progressively worse day by day.

As you can see in the photo above, when Isaac is standing upright his right foot pushes out to the right.  He's unable to straighten this foot.  His left foot flips onto it's side and the big toe curls under the little toes. 

With the left foot flipping and the toe curling, this is a sign that the tendons are no longer working the way they should.  The tendons on the inside of the foot aren't working at all and the tendons on the outside of the foot are working just enough to flip the foot out and pull the toes down (when they should be up).  His foot also pops in and out of joint when he walks and he is at risk of fracturing his ankle if he steps on it the wrong way.

As you can see the right foot is pulled to the outside and his big toe is beginning to pull up and over the little toes (the exact opposite of the left foot).  Isaac's right foot is in much better shape than his left, but over the last month we have grown alarmed at how much worse it's gotten.

Next Wednesday we are meeting with Dr. Kay (Isaac's foot/leg surgeon at CHLA) and Dr. Tolo (Isaac's Spinal surgeon at CHLA) to try and come up with a game plan to fix his tendons and muscles before he loses the use of his feet all together.  It's looking like surgery will be necessary but we should know more in 6 days.

So that is the latest on Isaac.  His back looks amazing (I'll post photos of it at a later date) and he is still snowboarding (with his braces on).  We are getting a new brace for his left leg called a KFO (it goes all the way up the leg over the knee) this new brace will keep Isaac from locking his leg when he walks.  

So it seems we have replaced one life-threatening disability with a life-altering one.  Hopefully we can have some good news when we meet with Dr. Kay and Dr. Tolo.

 

Here's a little video of Isaac showing off his walking skills without his braces on!