Monday, August 1, 2011


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?


GreenGirl said...

You bring up an interesting point. We certainly try to view all of our decisions in a positive light especially if we can't redo them! Give Grace some time, her body has a lot of healing to do.
I'm not 100% sure it was the "right" decision for our daughter but I can say that she is seven and hasn't had to have any major surgeries and doesn't have a lot of pain. She still struggles to walk in her gait trainer but she can ride a trike.. so who knows the "right" answer for sure..

Josephine said...

I think your Dr's statement was probably pretty accurate. How could we, as parents, live with ourselves if we thought we had made horrible mistakes in the choices we made for our children? Also, a lot of CP children do come to depend on spasticity, and because of that, their muscles are not strong. That is why intensive PT is so important after SDR, because they can no longer use spasticity as a crutch and have to build up muscle strength they never had before. In the long run, it is DEFINITELY the right choice! Relying on spasticity to walk is probably a big part of why so many people with CP start suffering from arthritis and regression in mobility in their 20s and 30s - they are having to fight so hard with their on bodies every time they get up on their feet. So Grace's muscles might seem weak right now, and it will take time to build up that muscle strength, but in the long run, she will be have a much healthier gait and much longer lasting mobility. I really believe you have made the right decision, and you will look back months and years from now and KNOW it was the best thing for Grace.

Josephine said...

In the middle there it was supposed to say "their OWN bodies"

Jennifer said...

While I do see value in what your doctor said, we make decisions based on the knowledge that we have at the given time. You did not make this decision lightly. Had you haphazardly made the choice for surgery and things didn't turn out the way you expected, then maybe you'd have regrets. But you made a very educated decision based on Grace's needs right now. How can you have regrets from that? And even if you don't see the exact results you were hoping for, I still don't think it's a bad choice. You are taking a chance and hoping that this surgery will help Grace. HOPE is what gets us through life with a child with a disability. And I hope beyond hope that the surgery was a success! Good luck with the recovery process!

Amy said...

I absolutely believe that if I made a poor decision regarding the care of my child, I would tell someone about it. I'd hate for another parent to make the same mistake. I did speak to another mom, who chose SDR for her child, and she was not happy with the results, at first. 7 years out, she says she believes that it was the right choice, b/c he'd have been under the knife another 2-3x by then. She said it took him a very long time to regain strength and confidence, and believed the doctor made a mistake (that they would not own up to) when cutting nerves. She regretted her decision for years, but when she sees him now, her only regret was that she wished she had a more conservative surgeon. She would have still chosen to do it, though.

Try to be patient with Grace--and yourself.

Ellen Stumbo said...

I am surprised your doctor would say this, as I will guess he DOES NOT have a child with CP. He is making one big assumption on an issue that I believe he has no personal expreince with.
Now, we had the surgery done at Mayo, so we were there for 5 weeks following the surgery, which is different than what they do in St. Louis.
But, did they explain to you that weakness is to be expected? This is how I understood it would be. After the surgery, Nina would start at ZERO. Learning to hold her head, and move her muscles. Sure she used her spasticity before, but what we were doing now was have her learn to use her muscles the right way.
Nina was very weak at the beginning, but, we were at mayo, so I took all my cues from the therapists and doctors who were excited along the way, so I was too.
Strength will come!
And did they tell you that it takes an entire year to gain the strength she had prior to surgery? But that her "new" strength would be with properly working muscles?
It takes 2 years to see the full effects of the surgery, and you are only days in. Prime time is around a year, hang in there!
If yu feel like it, go see Nina on my blog as I have recorded this journey with videos, just hang in there!