For four years I have been researching and investigating about SDR (selective dorsal rhizotomy) a procedure that, according to parents, changes lives. Follow on #sdrchangeslives
I read the facts, the success stories, and saw the videos. I was convinced that SDR could change our lives too!
We finally decided to schedule an appointment to see a neurosurgeon at the local children's hospital. We contemplated going to St. Louis to have the great Dr. Park evaluate Sophie but with three kids and a small budget, that was going to be a very difficult task. I was feeling somewhat guilty for not going above and beyond in order to get Sophie to St. Louis but then somehow I convinced myself that it was best to find a local option and fast. At last, I decided that it was best to stay in town if I I could manage to feel comfortable with our local doctor. We saw Dr. Hertzler about six months before deciding to do the surgery. If you are considering this surgery for your child, please do not delay. I wish that I would not have waited this long.
So back to the story... Sophie was admitted to the hospital at 6 a.m and provided a gown and glass slippers upon arrival. ok, just kidding, just some plain green, hospital socks. By this time, I had gone into a little trance I that usually put myself into when things are about to get tough. It is like a natural drug that my brain manufactures so that I can endure difficult situations. As soon as the nurse began to work with us for height, weight, etc... she realized that this girl was no ordinary child. She immediately became the talk of the nurses and doctors who were slowly getting to know her. She began to tell everyone about her twin sister who passed away. She also spoke about how much she wished to be a ballerina and that the reason that she was having selective dorsal rhizotomy, and yes, she said "selective dorsal rhizotomy" and she knewexactly what that meant. Her vocabulary left everyone in awe. Although she was just four years old, she reads like a first grader and speaks two language fluently (English and Spanish). She can also say many words in phrases in French and Russian. How is this girl so smart? you will have to read my next post about how I took my daughter's brain development into my own hands!
So what does this mean for a child with cerebral palsy diplegia or quadriplegia? During the rhizotomy, a neurosurgeon selects nerve roots that are causing spasticity and cuts them, removing spasticity forever. Sophie was diagnosed with quadriplegia, although she has always had good use of her hands and arms, because "some spasticity" was present mostly in her left hand. Her left hand was fisted for probably the first two years of her life. She improved that greatly with the Anat Baniel Method (RESEARCH ANAT BANIEL METHOD) that cost us an arm and a leg (thankfully paid through fundraising).
So... around 7am, the nurse started some meds that were intended to make Sophie drowsy. Then, she was almost asleep, she was taken inside to the operating room and next came what would be the longest four hours ever!
At about noon, the doctor came out to give us the good news! The surgery was a success and Sophie was doing very well. The doctor told me that her lips might appear swollen because she had been on her belly for the length of the surgery. I was called in to see her. She was still asleep when walked into the recovery room. She was lying on her back. I looked at her lovely face and her closed eyes. I did was most parents probably do after a surgery like this. I uncovered her feet and tried to bend one of them. All her toes were now relaxed. Her feet had the ability to bend back without bouncing back like they had springs inside of them. I felt like a miracle was happening right in front of my eyes. After so many years of seeing these two little legs, always stiff, always in pain, I began to see all the possibilities that would now become a reality for my daughter. And she was still asleep, just about an hour after surgery and her life had changed, our lives had completely changed.
Recovery was much easier than I imagined. Sophie was so brave, she did not even cry once. The key was making sure that she received pain making exactly at the right times. The first three days, she was on morphine. By the fourth day, she was on alternating Tylenol and Ibuprofen. She was so good taking her medications, so different from we are at home. After surgery, she was transferred to the Intensive care unit for twenty four hours, then to the rehab floor.
To be continued...
