03-24-2006    Long Overdue Update

It has been almost a month since I posted anything, and since several people have asked, here it is.  Things have been going quite well.  We had a well check up at the doc yesterday and they drew some blood to check his ProTime and INR levels.  It did Mikie some good to get out and I wanted the doc to see how much he has improved.  Since he has been off the Depakote Mikie has been pretty active. We wondered if he would get back to pre-illness levels of activity, and actually believed, along with the doctors, that he would never accomplish that.  It’s nice to say that he has probably gotten better than he was after his first shunt revision several years ago.  For years we have had to contend with respiratory problems and they are non-existent now.  Some time ago it seemed that Mikie lost the ability to swallow, or at least the willingness.  You can imagine the problems it caused, with him choking on his own saliva, and feeding him anything by mouth was impossible.  While he still gets his nutrition through a feeding tube, he can enjoy an occasional snack without choking.  His mouth looks great and cleaning his teeth has been quite easy.  Something we noticed in years past is that we could not roll Mikie on to his left side.  It would cause him to start choking and coughing and he wouldn’t stop until we rolled him back.  That problem is also gone.  He still can not stay on his left side for long periods because of his Scoliosis but otherwise he doesn’t mind being in that position for short periods. 

Mikie has taken a liking to playing with his bed rail now.  Keep in mind that it is simply a 2x4 modified to drop in a slot along the edge of his bed, and we place pillows along side it for obvious reasons.  He likes to roll all the pillows out and then any stuffed animal or toy is dangled over the side until he drops it on the floor, the more noise it makes the better, until finally he works the rail itself up and out of the slot so that it can crash to the floor.  He would wiggle his way off his pillow until he was close to the edge but by that time (in the middle of the night) we would be awake and in the room to put things back in order.  He would laugh and act so pleased with himself, and we would scold him in a fun kind of way, which usually make him very happy. We’ve secured the rail now so he can’t lift it, but he still throws everything he can over it and then just touches and feels the rail.  Sometimes he will sleep through the night but often he is up very early and awake much of the day.  He still has an occasion seizure, but they are rare.  He is getting 3 mg. of Klonopin a day, and 35 mg. of Tegretol, both very moderate doses.  I probably have not seen more than an average of one seizure a week, though he may and probably has had a few more I just didn’t see.  They are mild and short, probably not longer than 30 seconds.  I still hold the belief that Mikie may have experienced some brain damage, but that the damage may have been a blessing, affecting the part of his brain that was causing seizures.  That’s not as wacky as it sounds, as I have read that as a last resort neurosurgeons have resorted to removing a part of a brain to stop seizures.  And since he had the droopy eye and loss of arm control it does make sense that Mikie might have experience a stroke while he was enduring those high heart rates and body temps.  The good news is that the eye is no longer drooping and the use of his arm is coming back.

We have not been able to get Mikie back in the adult day care because they don’t have room for him on the bus yet.  I’ll be switching my off day back to a every other Monday in April so at least we will be able to take him on that day so we can go do some things together.

That’s it, I just can’t think of anything negative to say about his progress!