R....Is For ROCKSTAR! (And REMY Too)

Most know of the craziness our family has endured over the past two years. On his three month birthday, our youngest, Remy was diagnosed with a devastating disease called Tuberous Sclerosis Complex. TSC is caused by a genetic mutation that doesn't allow the body to produce a protein necessary to stop tumor growth. As a result, he has numerous brain tumors that caused uncontrollable seizures for the first eight months of his life. He was incredibly delayed, and in this picture, he is almost eight months old and barely able to hold his head up:

His Doctor was not happy this his progress, and decided to present him to the surgical board at Detroit Medical Center. He was scheduled for an epileptic resection surgery in June of 2008, he would turn nine months old in the hospital. During the first stage of his epileptic resection surgery it was decided that 40% of his right hemisphere would removed. Part of the brain tissue removed was his motor cortex, effecting the left side of his body. This is him in the hospital:

Fast forward 16 months....and you have this amazing little miracle of a boy. I can't tell you how hard it was to go to Dr. visit to Dr. visit just to hear the same thing: He is behind, he is delayed, he might walk, he might not, he might be cognitively delayed, he might not speak, etc..... It is exhausting to try and envision your life with a child when you have no idea where they may fall on the spectrum of "normalcy". What I do know, is that he is amazing, and blowing everyones expectations of him out of the water. I received a report in the mail from his orthopedic Dr. yesterday, here is an excerpt from it:

Physical exam: Remy was a happy healthy-appearing boy. He had some drooling, but less than previously. He had wonderful language. He had slightly increased tone throughout the left side and slightly decreased function, but did use both hands when playing with toys. He appropriately interacted with toys for his age. He walked easily using a reverse walker. He also took a few steps independently without holding on, but had a better gait pattern when he had on hand held. He had full passive range of motion. His left foot in particular was pronated. Strength could not be tested b/c of his age. His DAFO was too small for him. Let lengths were equal. Back was straight.

In summary, Remy is a 25-month-old boy with tuberous sclerosis and resultant left hemiparesis, who was making wonderful gains at this time.

As I said before.... R is for ROCKSTAR!