Last week we began a lifelong journey. Our girl, home three months, had her first evaluation in the United States to begin a specialized treatment plan for her arthrogryposis. We visited the Shriner’s Hospital closest to our home, about 2 1/2 hours away. Shriner’s is a leading expert on orthopedic conditions , and specifically treat children from birth to age 18. We had heard great things about them preceding our visit, and all were justified. This place is amazing!
It was wonderful to sit down and talk with doctors who are familiar with this condition. Because it is fairly rare, many doctors have never treated someone who has arthrogryposis. They knew just what questions to ask, what x-rays to take. They taught us what to keep an eye out for, and what to stop worrying about.
Generally speaking, all of the experts were in agreement. Our daughter is amazing. Through her six years, she has developed many techniques that work best for her own body. She has adapted beautifully. Considering she had essentially NO treatment for the first 5 years of her life (typically babies born with AMC will begin casting and intervention just a few weeks after birth), and the fact that she has been walking for less than a year, they were quite pleased with her range of motion and muscle strength.
There were a few surprises too, however. It appears {K} has a slight bit of curve in her upper spine, the start of scoliosis perhaps. The pediatric orthopedist mentioned that nearly 25% of arthrogryposis patients will develop scoliosis over time, simply because of the way their bodies compensate for alignment differences. It is possible that this curve developed for {K} before she had her hip surgeries, and perhaps now that her hips are in alignment her spine will remain stable. We are following a wait and see approach.
She was able to pick a toy for being so patient during X-rays. It was no surprise that she chose something Hello Kitty related – girl loves her some Hello Kitty! The puzzle was a great distraction for her while waiting. Win-win!
The specialists also noted that her left wrist may merit some intervention. It is currently mostly locked in a downward position, but she has amazing grip with that hand. They feel that by unlocking that wrist she would have an easier time with self care tasks, such as dressing and grooming. They sent us home with a hand brace/splint that they recommended she wear at night and for short periods during the day, to help stretch the wrist ligaments. On our next visit, six months from now, we will meet with a hand specialist who will talk us through some options for the future.
{K} was fitted for some new AFOs (ankle foot orthotics) since her feet are growing and her toes are creeping over the edge of her old set. She was pumped that they let her pick out her own color and pattern for the new set, and chose a butterfly option. We will go back in a few weeks, once they are made, to try them on and do a final fitting before bringing them home.
Most of all we are just so, so happy that {K} will be able to start school this Fall with no limitations and no surgeries on the horizon. A chance to be just like all the other little kids in her kindergarten class. The ability to have fun and play at recess, just like everyone else. She has already mastered the ladder/slide combo!
Again with the amazing grip – am I right?!? The hanging on the bar before going down the slide? All her idea. This girl will move mountains!
