SDR Surgery and St. Louis Trip

Just after Dewalt turned 2, he was diagnosed with spastic diplegia Cerebral Palsy. He was fitted for his first set of AFOs (leg orthotics/braces) just before Christmas and we began accepting that our baby boy would have difficulty with mobility his entire life.

 

Little did we know that 2 years, 3 rounds of Botox, and countless sets of casts later a bombshell would be dropped on us. At his regularly scheduled appointment, his doctor asked if we’ve made a decision when we would like to have “the surgery.” After a very confusing couple of minutes we realized that her and I were talking about 2 different surgeries. She finally explains to me that there’s a spinal surgery that Dewalt is a prime candidate for... “I thought you knew.”

 

I immediately started researching and learning everything I could about Selective Dorsal Rhizotomy (SDR) surgery. SDR requires the back of vertebrae to be removed and spinal cord exposed. The motor nerves will be lifted up to expose the sensory nerves. The sensory nerves will be shocked with electrodes to determine which nerves are sending the “wrong messages” and causing his spasticity.  These nerves will be cut. He will be in the hospital for a week.  The first couple days he will have to lay completely flat and will have an epidural for the pain. After being released he will have intensive physical therapy for roughly a year. 

I find that one of the top (if not THEE top) doctors in the world is in St. Louis, MO.  We decided if someone is going to cut our son’s spinal cord to reduce or stop the spasticity in my son’s legs, that’s who it’s going to be! This surgery will be LIFE-CHANGING for him and his mobility as well as relieve/prevent life long pain. 

 

The surgery and hospital stay itself is over $40,000 but luckily our insurance will pay most of that.It is all the other expenses on top on the surgery that are starting to really become overwhelming. We (family of 5) will be flying out in the middle of February for his surgery and will be there for a month. We’ve rented a house so he doesn’t have to go up and down any stairs while recovering there. We also had to rent a car for our entire time there.

 

Any help you can offer to make this incredible surgery happen for our son is greatly appreciated!