Another Tough Decision…
As I am typing this, we are less than two weeks out from another major surgery for Mark. In less than 2 weeks, he will have Selective Dorsal Rhizotomy surgery or SDR for short. This surgery is extremely complex as it involves cutting nerves to his legs to help alleviate tension and spasticity. If all goes well with this surgery, we will be in hospital for about 4 days and then we go back home to begin intensive therapy.
I have had so many questions asking WHY we decided to do this surgery. I’ve had even more questions about the side effects and possible complications. I’ve had friends make comments like they are glad they haven’t had to make this decision, or that they would never be able to go through something like this. I understand and appreciate the curiosity and attempt at empathy… but I want to make sure it’s very clear of my thought process on this so bear with me, just for a moment.
Is the surgery risky? Yes. In theory. It is major surgery and on the spinal cord. Just as we did with the Craniosynostis surgery in 2020, we weighed the pros and cons of all things surgery, and once more the pros won. Mark had to be evaluated by a number of specialists. Fortunately, Mark was already a frequent patient of this particular team so discussing his history and eligibility was a walk in the park. We discussed his likely and anticipated outcomes post-op and as it stands right now, all of his doctors are in agreement, this surgery would be monumental for him.
Mark has Level 1 Cerebral Palsy. He receives Dysport injections into his leg muscles every 3 months, wears a brace daily, takes medication three times a day, and occasionally has to wear a cast and boot. Not to mention that with the braces comes the need to consistently buy new shoes to accommodate the wear and tear, AND buying two separate size shoes to fit the free foot.
Level 1 Cerebral Palsy means Mark has pretty good mobility. The skills he has learned with things such as crawling, walking, and running (or what he is capable of doing) will remain. He will not lose those skills in his lifetime. The trick of it all now is that he has to be able to adapt. Mark’s gait (the way he walks) is unsteady. He is very clumsy and whereas I can often say he comes by it honestly (since I am a VERY clumsy woman), this is something far more than simple genetics. Mark’s ability to walk, run, climb, and even his ability to jump is limited by his range of motion, his clumsiness, and his condition.
So all of this begs the questions, “well if he can do all of that, why are you making him have surgery?” and “How will the surgery benefit him if he is already capable of movement?” To summarize it as best as I possibly can, SDR surgery gives Mark the best chance at a sense of normalcy. It has the potential to help with the tightness in his legs so this opens the door to POSSIBLY: No more toe walking, ability to sit with his legs straight out, and sitting crisscross on the floor. A better range of motion gives him a better chance to run, jump, and climb. It also gives his legs the ability to get stronger. The hope is that with his surgery and his intensive therapy care, he will strengthen his leg muscles which will give him the ability to participate in more activities for longer periods of time. He should be sturdier, more flexible, and more free and deliberate in his movements.
This surgery, as with all surgeries, is a risk. It is lengthy and invasive. It is his on his spinal cord for crying out loud! As I type this, we are gearing up to isolate before surgery. I am planning how to work therapy appointments around my Spring Semester, and I am battling with the insurance company to somehow manage to get his follow-up therapy visits covered. None of this is taking away from the fear, the worry, and the helplessness I feel. I still have my anxiety nipping at me, and the mom guilt creeping up slowly before it consumes me once again.
None of this is normal. No one should have to experience this. I fear for my child’s health, safety, and wellbeing and that is why we decided to go through with the surgery… because although it is scary now, I know that what will come of the surgery will bring forth a new boy almost entirely. He will know freedom in his movement, and I truly believe it will allow him to open up new doors and challenge his limitations. Given that Mark is adventurous, loving, and kind, I think adding limitless, fearless, and explorer seems rather fitting.