Ready for this? ...we weren't. They hit the "pause button" for Cole's surgery this morning. The panel of 50 doctors reviewed Cole's EEG & PETscan. They found a small malformation on the other side of his brain now. They want Cole to try another drug which is pretty aggressive. We will put him on it tomorrow...wait 3 weeks, if it doesn't work then then the surgery will be in "play" the end of July...yes we are going home & yes, we will come back to Cleveland for the surgery. They also figured out that he has "infantile spasms" aka West Syndrome" as well as the 2 other seizure types (absent & drop seizures). Don't let the name "infantile spasms" fool you...these are HORRIBLE, HORRIBLE seizures! Infantile spasms are considered uncommon & are one of the “catastrophic childhood epilepsy" because they are hard to stop/control/treat. One article we found about Infantile Spasms was called "Little Seizure, Big Consequences"...which sums it up pretty good. While we are very frustrated that we flew across the county, we feel like the drs are trying their very best. Part of the panel of drs thought Cole should have surgery now and the other thought he needed to try another aggressive drug. The surgeon had a meeting with us and let us know if it was "his child" what he would do. We feel comfortable with their decision & know they have Cole in their best interest.
Thanks for all of your Love & Support...we really appreciate it! Keep praying for our little boy :)