At 26 gestational weeks, after an amniocentesis and genetic testing, he was diagnosed with Diastrophic Dysplasia, a rare type of dwarfism.

Now 8 years old, our son Kai is happy, healthy, and enjoying life.

The purpose of this blog is to lend support and encouragement to others in similar situations and to share the tremendous experiences we've had and will continue to have as we raise our little, little boy.


Tuesday, October 21, 2008

Leg Casts

Today was our first appointment at Shriners Hospital in Portland. Kai endured 3 1/2 hours of weighing and measuring, x-rays, doctors, nurses and occupational therapists' cold hands poking and prodding and manipulating his tiny hands and feet and then finally, being held down while plaster casts were put on his legs from his toes to his groin.

To correct his club feet (which we learned are only moderately severe), he'll wear a series of plaster casts for the next six weeks. Every week we'll take him back up to Shriners where the old casts will be removed and new casts applied. After the six weeks are up, his achilles tendons will be severed, and his legs recast for three more weeks (this will release tension and allow his tendons to grow back a little longer). After that he'll wear special shoes with a bar in between for a length of time (months?--I forgot how long) and then he'll continue to wear the shoes with the bar at naptime and at night for two years.

We also found out that Kai has gained a whole pound since birth! Usually babies have only just regained their birth weight by two weeks old.

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