Christopher had Chiari decompression surgery one year ago today. So of course I'm making myself cry by compiling a video of how far he has come. I may have mentioned that it was a much more difficult recovery than we anticipated based on how amazingly well he did with the surgery itself. He was only in the hospital for 72 hours, after all! The hard part didn't come until he started really walking more than a couple blocks six weeks later. But we knew how important it was to get active again and regain a full range of motion as soon as possible. So he trained all summer to run a kids triathlon with his brother and good friend. He did a half-day tennis camp at the community center the first week of July. He wasn't allowed to swim competitively, but he did a youth developmental class once a week so his neck muscles didn't go into shock the first time a HAC coach asked him to do the butterfly for swim team in September. It was hard on him, it was hard on me, but.it.worked. By mid-August, we knew he was doing so well that our medical goals for the year were full participation in swim team and school, no modifying our workload for cognitive fatigue. We mostly succeeded, although it honestly took until 9 months after surgery for him to stop needing extra sleep at night. Christopher still gets migraines on occasion. But never a Chiari headache. Loud, chaotic situations still exhaust him, and a cold still runs him down a bit more than I would like. But I realized in the fall that he got a cold and it was just.a.cold. The coughing and sneezing hadn't ratcheted up his headache to the point he was non-functional and I was debating taking him to the emergency department. After a year and a half of that, it was amazing. And his neurosurgeon, Dr. Groves, agreed. No more regular follow-ups or MRIs for 3ish years. If he develops symptoms that concern us, she still has a low threshold for ordering a scan at any time. But neurology appointments twice a year for migraine monitoring are the only regular brain follow-up he needs for several years.
Christopher's external scars are minimal. He usually has the strength and energy of any 11 year old athletic boy. He has the academic fortitude to read, write, and 'rithmetic with the best of his peers. He is more introverted than he started out two years ago. He is still highly susceptible to motion sickness. He sometimes gets nasty migraines. But he is also still very, very young and I think his future is likely to be quite bright.
And we made our bucket list goal, made the summer of 2016 on one of his darkest days: We got him healthy and strong enough to go to Playa del Carmen, Mexico, to swim with his favorite animal, the whale shark.
And we made our bucket list goal, made the summer of 2016 on one of his darkest days: We got him healthy and strong enough to go to Playa del Carmen, Mexico, to swim with his favorite animal, the whale shark.
