Jp Update #2-Sunday, March 11th

Hi family and friends..I wish had I better news for you all by now, but I simply don't. After upping his medication last Monday to max dose, he remains having at least 2 or 3 clusters of 15-20 seizures each a day. We had a small stretch over Friday/Saturday where he went nearly 27 hours without a cluster and we began having thoughts that perhaps we had turned a corner, but that was followed by several clusters within the next 12 hours.

Now we'll be turning our hopes tomorrow, Monday the 12th, to a new medication called Vigabatrin. When coupled with the ACTH (he'll continue that medication for several more weeks) this combination has proven relatively effective with other children with IS. This medication is also our last true hope of controlling the seizures effectively.

Cortney's mom has been here helping since we came home from the hospital, and continues to be so helpful to us all, in particular to the three girls when Cortney and I are tending to little dude. My fire department has continued to bring us dinners each and every night and that has been truly wonderful. If it weren't such fantastic support from family/friends/fire dept., Cortney and I may have already lost our minds....The emotional roller coaster of waiting for his clusters and then the heartbreak that accompanies each one of them has been very draining...the support from everybody has certainly helped Cortney and I keep our chins up a bit and keep trudging ahead...

Take care everybody..will post again later in the week after JP has taken his new medication for a few days...

JP and Cortney