Trey began ERT one year ago today. What a fantastic year it has been. He has not missed one infusion, which is unbelievable. He is growing like a weed and continues to be very tall for his age, his speech is improving quickly and his development is doing great, his range of motion and joints are where they should be at for a kid his age, his xray and othopedics appointment two weeks ago week showed us that his bones are growing and doing well (Trey had and EKG and echocardiogram yesterday at the hospital, but we do not yet have results)… our life is strangely and wonderfully “normal.”
