Hi Everyone.  Sorry again for the lapse of time since the last update.  Everything is good here.  In fact, wonderful.  We've been having a blast this summer riding bikes, attending picnics and parties and swimming at the CC pool down the street.  I can't hardly believe it but JT just finished his 6 week long summer school program to help him prepare for entering Kindergarten in the Fall.  He did absolutely GREAT making new friends, following directions and learning the ropes of what will be expected of a Kindergartener.  We couldn't be more proud of him.

The last few visits to Cincinnati have been uneventful but good.  Two weeks ago the docs had JT's immune studies drawn and yesterday I found out that the results look super.  Today we will meet with Dr. Filipovich to get her take on it all, but they did already discontinue two of his daily oral meds. Yeah!    He is still on some oral steroids and a pretty decent dose of IV steroids.  We'll talk with Dr. F today about possibly decreasing those.  Hopefully we'll also discuss cutting the photo treatments back to every three weeks again maybe starting in the Fall so JT doesn't have to miss so much school.  His skin looks beautiful.  The scarring is shrinking and he is having more and more normal patches of skin.  The results have been better than we could ever have dreamed.  We continue to see more and more healing.

Well this is just a quick update.  Justy is with JT and me on this trip.  It's really cute, JT is showing Justy all the things we do when we come to Cincy.  Justy has been a champ on the trip with the long hospital stays.  We've been to a huge train museum, the newport aquarium, swimming in a new hotel and today after treatment we're going to the children's museum. 

Thanks for checking in.  We are loving life and all the freedoms we've been given.