Currently, Jonathan is making the kind of progress we were praying for. His need for prescription medications is down, his physical abilities have improved and he is now able to clearly communicate his emotional state. Although he is still not able to talk, walk or move voluntarily, he has made progress in each of these areas.
Medications After he was discharged from the hospital 2 years ago, Jonathan was on 24 different prescription medications to control severe seizures, GI problems, movement disorders, pain etc. He now only needs a handful of medications. He no longer needs potent narcotics and barbiturates to control pain and life threatening seizures. Although he still has mild seizures from time to time, these are fewer and much more manageable. He is still fed through his stomach tube, but he is starting to display some early signs that he want to swallow orally.
Physical 2 years ago Jonathan was not able to voluntarily move at all, was legally blind, and spent his waking hours flailing his extremities involuntarily. He was discharged from physical therapy since they were not able to help him. He was described as ‘octopus-like’ or “jellyfish-like”. Jonathan now has some control of his upper body and is able to hold his head up and turn his head when he wants. His vision has returned and although we don’t know what images his brain is processing, he is able to focus for brief periods on moving objects and colors. He frequently is seen with his hands in his mouth, trying to suck his thumb so some voluntary arm and mouth control has returned. The areas of his body that have improved are the same areas we have been focusing on for 2-3 hours a day with his “Advanced Biomechanical Rehabilitation” (ABR) therapies!
Spirit/Emotion With the exception of crying and screaming, Jonathan was mainly silent for the last two years. We are thrilled to say he now can laugh when tickled. There is nothing more enjoyable than hearing him break out into a “full-bellied” laugh and hearing his voice after a 2 year break. Although he is still not able to talk, his progress is uplifting to such a degree that we put him in pre-kindergarten this year. A trained nurse escorts him in his special chair throughout the day and ensures he is able to interact with other kids, hear their voices and share story time with kids his age.
Overall Words can’t describe the pride and elation we feel with his progress. It is nothing short of a miracle. It’s great to see that your support and prayers in addition our relentless efforts to rehabilitate him are working.