Sunday, December 21, 2008

The Brace Story - from the beginning

We picked up the brace on a busy Wednesday afternoon. Already in the area, we called K to see if it was ready. To our delight, they said to head right in. The fitting went well, except that Jack was exhausted from the day's events and generally doesn't like being messed with. The bad news was, the company didn't embed the design Jack requested - so his "tractor brace" was just a white brace.

It seems so long and K explained that it will allow him to grow in it, hopefully for a year or more. It went right on without issue and the only trimming necessary was a small spot near his thigh so that he can sit up if he needs to. (But he should not be sitting or standing in it.) Within just a few moments, we were on our way with a new, handy dandy, removable turtle shell and a snuggle bug boy who can run, breathe, climb, and eat like a typical child.

Apprehensive about the efficacy of the brace, knowing stories of worsening and improperly fitting orthoses, I was hesitant to rejoice this new move. The next available appointment with our local surgeon was the 18th, which was an agonizing week away. K assured me that two weeks out is the standard to check a brace's function and one week would be okay, but I kept doing the math in my head. One week for the first brace, plus one week of waiting for an x-ray, plus another week of manufacturing = three weeks out of the cast. I was a nervous wreck when I allowed my brain to consider all the possibilities and terrified of backsliding. But, I kept my cool and before we knew it, the week had arrived of his appointment. The week of adjustment into the brace went well. We had built it up as something for big boys, a cast that he could take off in the morning. The first couple of nights he whimpered and whined about putting it on, would cry that it hurt initially, then say, "That's better." We decorated the cast with the clear-backed scrapbooking stickers. He chose Mickey (but we also have Buzz, Woody, and Nemo waiting for their day in the sun.)

Then, as should be expected by this point in our lives as parents, kids started getting sick. Then, the weather forecast was grim. Oh, no, not just fluffy Midwest snow - ice. The dreaded slippery, sleety, miserable, black ice creating freezing rain. Jae had phase II of her pediatric dentist appointments the day before, scheduled to get her crown, sealants, and some fillings. Since we rescheduled that once already, we didn't want to prolong it any further and John said he would take her alone. The roads were slippery, but the freezing rain was supposed to start at midnight. We dreaded it, knowing if we cancelled the appointment, we'd be pushed out perhaps until January. I looked at local radiology centers, thinking maybe we could get our doctor to order one over here. And, we waited and watched the weather radars over and over again.

There was no time to think about it in the morning. The alarm went off early and we scrambled to get everyone dressed and in the car. Skylar had been feeling better. That is, until someone gave her a huge cup of filtered water. Dehydrated, she chugged the entire cup and back out it came. I was delegated to car duty, and stayed with Skylar, Jameson, and Piper. John went into the hospital with Madison, who is old enough to hold Jack still for x-rays if need be, and Jack.

The appointment went well, I'm told. Initially there was some dispute about the x-rays. The staff insisted that they had to do a standing x-ray because that is protocol and that's how they "always do it." Obviously, Jack is in a Providence, night time, bending brace. Logic dictates that it would not be effective standing, nor is it easy for him to stand in the brace. But, John complied and allowed them to take (unnecessary) films that showed no correction. His cobb was 34° (anywhere from 29 -34°) and that's pretty much what has been out of cast this summer.

Once John got in to see Dr. D, he was able to get a supine (laying down, face-up) x-ray in the brace, as K requested. We got it on disk and I emailed it as soon as we got home, then printed it to calculate the angle of his curve. It was plain to see that there was improvement, but I was anxious to have numbers. Ultimately, we calculated and then learned from Dr. D's office that the Providence is holding his curve down to 22° - which is pretty much what we were seeing in the casts. VICTORY!!!!

However, there is another story that is even more worth mentioning than the numbers above. The meeting with Dr. D went incredibly well. One of the first things he told John was, St. Louis Children's Hospital is now doing MEHTA CASTING!!!!! He said this development was largely in part to us and bringing this method of treatment to light in our community. I get chills just remembering the words. They have a proper table and when we were trying to get an appointment with Dr. D, he was traveling - because he went to Salt Lake to train with the renowned Shriners doctor out there (the one we tried to see this summer and ultimately decided against). I first found Dr. D online this past year, around February. His published studies were impressive and his work with children who suffer from club foot seemed perfectly aligned with the early non-surgical intervention of Mehta casting. We tried and tried again to initiate a training seminar here, to no avail (through no fault of Dr. D's). I had pretty much given up hope that it would ever happen here and we continued with Dr. K instead. So, to hear that this has all come to fruition was just surreal. He mentioned that he had a case coming in that afternoon, and another next week. The fact that no other family will come into that office and be told that their child would suffer a lifetime of surgeries based on an inaccurate diagnosis. Well. It's beyond words. Every moment of the last 16 months, the hours on the road, the NPO orders, the sleepless nights, the tears, finances, advocating, and researching had all burst through the ceiling and turned into the most beautiful thing. Jackson's life, his condition, were no longer without meaning. He paved an amazing way for dozens, perhaps hundreds of babies behind him. And, that, above all else, is deeply profound.

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