I would just like to share my happiness with you that after 130 days Stephen is vent free, oxygen free and trach free! Last night they took out his trach and so now all we have to wait for his the wound in his throat to heal. The relief of him not being dependant upon the ventilator is unimaginable. It's better than winning the lottery!
Next step............movement. If I say so myself I have a remarkable son who will defy all odds and amaze us all.