This morning, our first morning back from Grace's rhizotomy in St Louis, I immediately starting Grace's stretching and strengthening routine and I was immediately frustrated...she is so weak. Of course she is, you are probably thinking, she just had a major surgery!! Now, it's not that I'm typically an instant gratification kind of girl but when will the "miracles" we were promised begin (again no patience). Part of the problem is the "no regrets" policy I have tried to follow during this journey with three very premature babies.
Once the decision was made to continue with the surgery, I was 100% (okay really 99%) sure the SDR was the right thing to do, but there is always that .01% or 1% doubt factor...isn't there. My doubts were increased a small percentage about a month ago when we went for a routine check-up with our neurologist in Dallas. I had not told him we were considering the SDR until that visit. He is not a big fan of the selective dorsal rhizotomy. I don't believe he has seen that many patients who have had SDR (both before and after) but he didn't think that removing the spasticity would help Grace walk..."most CP kids need the spasticity to walk" was his response. I explained to him that we had been considering this procedure for about 3 years, had done our research, and had talked to several parents of children who had the rhizotomy. None of these parents have had any regrets. Dr. X then responded (and I paraphrase) "You will never hear a parent say they regret making such a big decision for their child. They don't ever want to feel they have done the wrong thing for them." I was speechless...but REALLY?! Do we become so brainwashed or narcissistic to think that every decision we make for our child is the right one? Do we really never make any mistakes with respects to our children?
Have we made a mistake? I don't think so at this point and can't really know until we are at least six months out. So, when you ask me at that point what will I say and will you believe me?