August 24

An update for everyone asking about Mousey: he and Clay have been reunited! Apparently he slipped out of the car at the Pittsburgh Zoo. It took a week or so but the zoo keeppers found him high in a tree in the Lion exhibit. After a short stay in the hospital, he was returned to Clay via taxi! He has a few scars and his arm was in a bandage, but otherwise he is just like new ;)  Things would not have turned out this well years ago before Google Translate and a French website that sells discontinued loveys...
Even better, (thank you Betsy), Mousey has a friend he met in the hospital, affectionately named "Mousey backup" by Clay. 


Fortunately Mousey arrived just in time to catch a plane to Maine, where we enjoyed a wonderful week on Sebago Lake.  Clay was able to join the kids camp program each day, and also enjoy some of the night time activities as the resort assigned him his own camp counselor.  We also enjoyed a short visit in Portland with my brother and his family. 

On Thursday JD and Clay went on a very early flight to Pittsburgh for the second round of vaccines.  The doctor was pleased that Clay has remained "at baseline" since starting the trial.  The next visit in early September will include another MRI.  Because so few children are in this trial, we are not sure when we might see positive results.  One boy who responded did so in 6 weeks; another took over 4 months.  JD and I continued to talk to neurosurgeons this month, and we have a surgery date now scheduled for mid-October in NYC.  We are hoping that we will not need to keep this appointment, but we feel that should his symptoms of the chiari malformation worsen it will be unavoidable.  Now we are starting to think about school, and how Clay will manage navigating the building, taking the bus, and other things that rely on a good sense of balance and coordination that he doesn't have right now.  As is typical, Clay does not seem to have given it a second thought, and is looking forward to meeting his new teacher and seeing some friends.