Our only other earthly chance at improving the tone at least, is something called Deep Brain Stimulation. Sounds fun doesn't it? There is a risk of stroke with this, so... We have a followup appointment in I think May to discuss this option further.
For now we pray that this medication will work or, best case scenario,that God would divinely intervene and provide relief.
I'll leave you with a cute one of my cutie who climbed into our bed with his bible on his own.