Tuesday, September 9, 2014


Hello, and welcome (almost) to Fall.  We are off to a good start to the new school year.  Clay has a new teacher, a new braille teacher, and a new assistant.  It seems like the "dream team" we had hoped for, and we are enthusiastic and hopeful that 3rd grade will be a good one for Clay.  Grace has started Middle School at a new school, and she is also feeling enthusiastic about 6th grade and all of the new activities and classes.  So, although it was tough (particularly for me) to leave our wonderful vacation location of Cape Ann, I am begrudgingly adjusting to reality.  I continue to work on my Master's program, which now includes a weekly trip to Boston for my orientation and mobility classes.  Currently, we are learning to cross streets and navigate outdoor travel (blindfolded, of course, and using a long cane). 

Clay had his final MRI on the clinical study last week.  The report is that things are stable, and he now goes into the last two months of receiving this medicine.  We are waiting for approval that the drug will be available to him should he need it once he is off trial, but the paperwork is still not signed.  We hope to have this assurance before the trial ends.   We realize how lucky we were to get the last slot for Clay on this trial, but it is hard reentering the uncertainty of what comes next.

I will not torture you with endless summer photos, but just my favorite one of Clay enjoying himself on a hammock, taken by our friend (and prior teacher) Laura.