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It's been a long time since I updated this site about Jaden's ACM (Arnold Chiari Malformation). I usually call it CM/SM (Chiari Malformation with Syringomyelia) because that's a little more descriptive.
He was diagnosed in early 2004 after having a severe case of "drop-foot" (meaning he limped because his ankle didn't have the strength to pick up one foot). He actually had to pick one leg up higher than the other while walking to compensate. We spent a few doctor appointments trying to figure out the cause of the condition, and thankfully, the Kaiser Permanente doctors in California were on the ball and suggested further investigation.
After see the MRIs showing the syrinxes along Jaden's spine, we were horrified. Of course, we spent countless hours on the Internet finding out everything we could about ACM. Most of it was not encouraging. Most adults we read about had horrible surgery experiences, and many children we read about had severe cases of it with botched up multiple surgeries. It was not comforting.
I thank God that our church family and friends pulled together behind us for the surgery. Their thoughts and prayers were evident in every aspect of our lives at the time. The surgery was performed by Dr. Leslie D. Cahan and went better than could have been expected.
Before we found about Jaden's problem, we had already scheduled a vacation with another family to Yosemite National Park, so suddenly our trip was less than likely. We went ahead and decided to leave plans in place with three weeks between the surgery and the vacation. I think if it had been an expensive vacation to a cheesy amusement park, we would have cancelled, but because it was to one of the most beautiful places God created, we decided to leave our options open.
I'm glad we did. Jaden did amazingly well on the trip, and the hiking was great exercise for his weakened ankle. In fact, he was the driving force keeping us going on the hike up to Vernal Falls (not an easy hike, I might add). His attitude was an inspiration to us, and still is.
Jaden is fortunate (OK, blessed) that his CM/SM didn't turn out to be life-altering (so far). I hope his story will give hope and encouragement to other parents just finding out that their kids have this problem. If you find yourself in this situation, may God bless you, and please don't hesitate to
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