What we know so far

Donovan's surgery is scheduled for May 12th. We'll venture to the hospital at 5:00AM for the prep work. The surgery is scheduled to begin at 7:30 and is excpected to last four to five hours. Donovan's first two days will be spent laying on his back but being turned on a regular basis. We understand that the neurosurgeon, Dr. Skarli, will provide us with medication to help Dononvan build up pain control even before the surgery and that he will have an epidural until he can tolerate the pain following the surgery. This is huge for us as we've read stories of children having a great deal of pain. Once Donovan can control his pain, can move, eat, and all the good stuff that goes along with it, they will move him to Mary Free Bed; somewhere between four to six days.

One of the reasons we chose the team at DeVos is our trust in their meticulous approach to this procedure. Dononvan's spasticity is most limiting in his legs. When they perform the Rhizotomy, the neurosurgeon will access the nerve roots at a single vertebrae. Along with the neurosurgeon, the neurologist will use EMG (electromyography) to monitor the activity of muscles as they stimulate the nerve. When they find an over-reaction, they will severe the nerve root(s). It is quite amazing that this procedure exists and we are so grateful to have this talented team available in our own backyard.

We won't know how much change the Rhizotomy will bring Donovan until he is through the surgery but we have been told he may have very limited use of his legs at first. The procedure will essentially eliminate the false strength of his spacticity which will allow him to re-learn how to use his legs with better muscle use. In practical terms, it is our hope that he will be able to walk and run easier, be able to kick a ball, be able to jump (something he asked Santa for), be less likely to fall, and be better able to keep up with his siblings and friends.

All this learning will come with a lot of hard work for Donovan. Once at MFB, he'll be in the therapy room from 8:00am to 11:30 and again from 1:00 to 4:00. MFB is an excellent facility and we trust they will know Donovan's limits and will work within them during these therapy times. Once Donovan comes home, he'll continue with out-patient therapy 3 times per week for six months, then 2 times per week for the next six months.

This Rhizotomy is not a cure for Donovan's CP symptoms. We hear that 50% of kids with this procedure still need further orthopedic surguries. We know this will be a life long journey for Donovan. Our focus is simply on reducing the needs for future surgeries and optomizing Donovan's abilities.

Donovan's Cerebral Palsy

Donovan has a mild form of Cerebral Palsy with Spastic Diplegia. It mostly affects his ability to walk and a bit of his speech. He was diagnossed at about 18 months and began walking with a walker just after his second birthday. He's been in physical and speech therapy since. He loves his equine (horse) therapy and has participated in it since his diagnosis. He has received Botox injections in his legs twice for temporary reduction of the spasticity. Donovan was very brave but now everytime we go to the doctor he says "no shots"? We have stopped using this treatment due to recent FDA safety concerns and a personal experience with a friend's son.

Considering the Rhizotomy

It's been almost a year since we first considered a Selective Dorsal Rhizotomy for Donovan. He has Spastic Diplegia which means his brain does not naturally inhibit his body's natural response to continuously tighten his muscles (they call it spasticity). What this means is that it prevents him from placing his feet flat on the ground when walking which causes him to fall more often and harder than any child should. With each growth period, the spasticity seems more prominent. Although he is running and moving much better, they call it a false strength. He has learned to compensate and amazingly works around the tightness. Without an intervention like the Rhizotomy, we won't know how much the spasticity will hinder him as he grows. Later in life he could have the need for surgeries because his muscles may become so tight they will experience a contracture (start to shorten). He is likely to have arthritis as an adult because of the way his tight muscles pull on his feet, knees, and hips. So we took the advice of his orthopedic surgeon and neurologist and considered the Rhizotomy.

It's been a journey... three opionions from respected institutions, a formal gait analysis and a whole lot of time talking with his physicians. We finally decided that this is an opportunity we don't want to pass up for Donovan. It's going to be a hard road for our little guy over the next year but we fully believe this procedure will ease his journey in the future.