Lilypie First Birthday tickers

Lilypie First Birthday tickers

Tuesday, September 11, 2012

So I decided I should probably go ahead and document the journey we've been on the last few weeks, but first let me go back to the beginning...Kai's birth.

When Kai was born, we learned something we never imagined possible...I had a genetic mutation that I could pass on to my children.  Now, I'm sure you're thinking "what?" "huh?".  Well when I was born, my feet were turned out and up (to where they were against my shin bones so it looked like I had no feet).  There was no name to what it was.  My parents were just told it was a "congenital birth defect."  I was casted at two weeks and at five weeks (the casts stayed on for three weeks at a time) and that was the end of my being treated.  Doctors after that point (and up to ages 1 and 2) said I was too young to be treated and by the time I was three, my parents were told I should have been treated earlier.  So I've lived with this problem (although my feet look "normal") my whole life, although I've learned to adjust and most of the time you would never know I had issues.  Because I was the only one in the family that had ever had this, we figured it was just a fluke.  Well, apparently it's hereditary.  We found this out with Kai's birth.

Thanks to Kai's awesome pediatrician, he referred Kai to Seattle Children's Hospital to be seen by an orthopedic surgeon up there.  So on August 8th, my mom, Michael, and I took Kai for his first appointment. The doctor came in, we talked, and said Kai had "vertical talus" also known as "Rocker Bottom Feet".  It's the opposite of Club Foot and if you look it up online, he has the congenital vertical talus.  He has no other mental or physical abnormalities that are often associated with it (like Trisomy 9 or Trisomy 18).  Basically his ankles are dislocated and didn't form the rest of the foot properly because of that so his foot, instead of being angled normally look like the bottom of a rocking chair; hence the name.  The wonderful part of it though is they have a treatment for it now that has been shown to be successful!  The treatment requires full leg casts (Yes, up to the hip!) changed weekly for up to 12 weeks, with x-rays halfway through to make sure the feet are moving and forming like they should be.  Then, when his feet are in the correct place they will put a pin through the ankle to the feet to keep them together, after which he will have a cast for 3 weeks.  After that he will be wearing the shoes with a rod connecting them (like they do for club feet) full-time for 3 months and then at night for 18 months.  It's a long process, but the outcome is REALLY good, especially since we're getting him treated so young.  (The older the child is, the more invasive the procedure is to correct it.)  So every week, I get to make a trip up to Seattle, but it's been totally worth it!

Here's some pictures of his progress.

Before we started treatment





We go up for Kai's next weekly appointment this Friday where he will have x-rays taken to check the progress, but on the outside his feet are looking GREAT!!!  We're SOOOOOO excited at the progress made so far and can only wait to see what happens from here!

4 comments:

  1. Wow! What a brave little baby! Good luck.

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    1. Thanks! He is definitely brave! He's been a real trooper!

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  2. I'm sorry to hear that but I'm so thankful for modern medicine. Good luck. Kai is so beautiful. Congrats!

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