Pushing surgery off a little bit longer...

Today we saw his neurologist and his physiatrist.  His neuro was pleased as punch at how well he is coming along and had nothing really to add on.  But his physiatrist was another story.  We are going to be trying a med called Baclofen, basically its a muscle relaxer to try and lessen his spastic muscles.  We are trying the very smallest dose and only doing it once a day to see how he reacts to it.  It kinda really scares me, but she said its so very little that we may not notice anything and can adjust it as needed.  We are going to start it tomorrow night a few hours before bed.  We want to be able to watch him to make sure it doesn't mess with his breathing and to see how he reacts with it.  And before bed because he just doesn't sleep at night and its main side effect is sleepiness.   The last week has been awful with sleeping, he is up almost every 30-45 minutes and his poor little legs are making him so restless.  We are pleased with his Botox, he is less spastic (tight), but we just are not getting as good of results as before.  And the next step after botox is the cord lengthening surgery.  And that is a major one that we really want to put off for at least the next 6 months.

So along with the baclofen, he will be getting a trunk brace, new DAFO's (ankle braces) continue the 3 outside therapy's along with the three he gets at school.  And we will be adding in aqua therapy and trying to get hippo therapy in as well. (hippo therapy is horse back riding)  Everything and anything to avoid that "s" word.