To all the Ben fans, (From Tuesday, August 12, Day 20):

Ben continues to improve, slowly but we hope surely – he is working so hard. It will be a long road to recovery, he is very weak and it’s pretty much like having had a series of small strokes – right now he cannot move himself from the bed, he has to learn “how to transfer” from the bed to a wheelchair so that he can get himself to the therapy gym in order to as Jim so succinctly put it “go into the torture chamber” and come out on the other side having re-learned some basic self care skills before they can even work on occupational skills. Walking - they hope will come after some more therapy! Yesterday, he stood for a few seconds - propped up by two therapists, but he stood - he doesn't have sensation in his right foot yet, so much of what they are doing is working some of those muscles so they won't atrophy further. The damage from his coma and complications is very random - on one leg, his quad muscle is weak but his hamstring is strong and it's almost the opposite on the other leg. His right wrist and arm are very weak but his grip is almost equal in both hands - he will have to both rebuild muscle tissue and re-learn how to use those muscles. His doctor explained that this is not like rehabbing from a knee replacement or other surgery where they have a well defined series of steps that show them what level he has achieved. Although they are confident that he will regain his strength and be able to take control of his life at some point they just can't tell us when that point will come. I was cautioned that this process will take time - probably several months, and we need to take it one day at a time. We recognize that it's important to walk that fine line in encouraging Ben and not pushing unrealistic goals on him. The true Ben is back, sweet and loving, but some of his extraordinary gifts will take some time to return and they take a back seat to the recovery of his ability to walk, eat, and care for his basic needs.

There are a number of what is called ADL’s – activities of daily living that he will need to re-learn. It isn’t a simple thing to wake up from a lengthy coma under any circumstance, but with the rhabdomyolysis and type of hypoxic brain injury Ben suffered, it just underscores what a true miracle it is to have him here, and here with his personality and memory intact!

Yesterday, there was mix-up in the scheduling of his dialysis so it was late afternoon when the technician started the process and as happens quite often, Ben's blood clotted a filter about halfway through the regimen. The technician at first decided to stop for the day, (which Ben and his parents thought was a fine idea since Ben's dinner had already been delivered, and Ben was hungry) but, without explanation, the technician hooked the lines back up and began all over again - so it was 7:30 PM before Ben got a chance to eat instead of 4:30 PM and that plain spaghetti and steamed carrots didn't re-heat well! He is on a renal failure diet - they are limiting all the electrolytic minerals he is getting in his foods in addition to fluids so that that fine balance can be maintained and no further damage to his kidneys will occur. There is the hope that his kidneys will regain more of their function.

Ben’s attitude over-all is very good, he knows he will have to work hard and he wants to do that – he is still so tired that I want to baby him a little but I know that that would be counter-productive to his recovery so sometimes I just have to leave the room and let the therapists work him over – and he is in such a good facility that I know they will all be working for him, too!

Thank you for your prayers and support, we are very grateful to have received such a wonderful miracle, Ben knows this is a second chance for him.

Ben's Mom