Thursday July 9

Yesterday, John was moving so much in his bed that the hospital staff thought he might fall out so they lowered his bed as far as it would go and put mats on either side just in case. He is so active and seems at time to be frustrated by not being able to simply get up and go for a stroll. He continues to be keenly interested in the things and people around him. For example, he constantly pulls the oxygen sensor thing off of his finger. It has a red light at the end and a cord attached to it so it is probably a bit irritating to be attached to and he has figured out that pulling on it makes the monitor beep which we think entertains him!

Also, recently John has started the first steps in learning how to feed himself. Holly and Tanya put m&m's on the pillows near his hand and he was picking them up and putting them in his mouth. He continues to have a voracious appetite and has absolutely no trouble finishing off his tray and part of whomever else's might be nearby. We feel certain that a big part of his kidneys doing so well of late is because of his intake of liquids and foods.

Today, Holly was singing and John was singing songs with her. They sang all the basics like Twinkle Twinkle Little Star and a couple of others. For those of you who don't know this, Holly's forte' is not recollection of lyrics and when we were kids she frequently made up lyrics she would forget! I can only imagine what she was singing but she said at times, John would have to remind her of a word or two. His speech is improving daily as well.

Some more specifics about what is going on with John currently...While he has fairly good long-term memory in terms of words, telling time, some names and so forth he is still having difficulty assimilating words with emotions and visa-versa. He can answer if you ask him if he feels pain however he has not quite started talking about feelings and at times will say that he is 12 or mistake who a person is to him, etc. Sometimes it also appears that he sees objects which might not be there or he mistakes objects which are there. An example of this is that he told Holly several times to pick up the baby and she thinks he was directing this at a pillow. It will be great when we learn some more helpful tools for communicating with him as well because we recognize that we may simply be misunderstanding him. The brain is a miraculous thing and it is so wonderful to see him blossoming and in the beginning stages of putting each piece of the puzzle where it belongs. One thing which has not changed is that he is truly a joy to be around. He smiles frequently and seems genuinely excited to see us. He is trying so hard to bust out of his protected place and it appears imminent that he will. He will be given so many tools at the next stop in his journey and hopefully continue to heal and progress in the process. The move to TIRR will probably occur tomorrow. He is getting glowing results from his nephrologist (Kidney Dr.) and his neurologist and frankly, anyone else who stops in who hasn't seen him in awhile. We fully expect him to continue charming everyone in his path and we look forward eagerly to John being able to utilize his pent up energy by getting back on his feet.