Hello there!  We are on day 6 of Cody's new formula, the one we had hoped would change his seizure profile.  Alas, his seizures are actually worse.  He's had two days of extended seizures that have blown out anything else we had planned for the day.  On days like those, our lives revolve around seizures and recovery.  I am terribly disappointed that this formula has not made a difference.  It is the closest thing there is to TPN (nutrition through IV.)  There is no way to make the burden easier on his tummy than this formula (Vivonex TEN).  Well, there is one way which is trying a 'continuous feed' which is probably our next step.  He would wear a backpack and receive food all day long.  That is in contrast to what we do now which is 5 feeds of 7.5 ounces each.  I cringe at the thought of the backpack - having to snake it around to his tummy and put layers of tape on it so it stays in place.  The boys is on the move CONSTANTLY - you can't even grab ahold of him he is so quick.  He rolls, does somersaults, climbs on and off his swing, climbs on and off your lap, lays down, gets back up....all day (and much of the night.)  If anyone has ever attempted a continuous feed with such a mobile child, please let me know any secrets. 

Both boys are in bed - Casey clutching his still-beloved gourd from Halloween.  And, of course, his precious yellow V-W bug in the other hand.  Such a boy - sleeping with a car.

And this was Casey's face when told he HAS to take his robe off SOMETIME!  He has a favorite book called "Elmo's bathtime" (he is holding it in the photo below.)  In the book, Elmo gets into a fuzzy brown robe and slippers after his bath.  Casey insisted on having one.  So here is Casey in his new brown velour robe and slippers.  Problem is, he's worn it for 4 days straight!  HE WON'T TAKE IT OFF!   

Here is his reaction when told he can wear it YET ONE MORE DAY!  Yahoo!  And below, he trots off doing his happy 'Robe" dance.  What a nut.

That's about all our news for today.  Looking forward to the weekend and to a short work-week for daddy next week.  Oh, one last thing.  You might remember that Joni Eareckson Tada is one of my personal heroes.  I visit her site regularly and she now has 1/2 hour long video segments on amazing stories of people with disabilities.  I've only gotten through 2, but plan on watching them all.  I wanted to share this link http://www.joniandfriendstv.org/video.php?id=28 because it will lead you to one of these segments.  It's the story of Chuck Colson and RC Sproul (giants in the Christian world).  They both have grandchildren with disabilities - one with autism and another with seizures and a fatal neurological condition.  This is a really good and inspiring video telling the story of how, as grandparents, they deal with this challenge.  It also highlights their children who are amazing. 

with love, Shawna