Just saw this!!! Hoping there has been some further good development. I work hard at targeted PT, and it has given me better function, some increased movement, and less pain.
wavewolf, Thanks! It's been a good long while since I made the original post in this thread, there has been a little more progress in that he can move his toes and ankles now but still no control over anything else, which has his doctors puzzled.
Every bit of progress in movement helps some with better functionality. I can now move my feet up and down, and have some toe control--helps with balance, and with good leg braces I can walk some and do safe standing transfers from wheelchair. All good. Some sensation in feet came back for several years, and seems to be getting lost again 12 years after sudden onset paralysis from disease. But walking function remains. We celebrate what we can! Now for puberty, haha--the real challenge!!