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.


Friday, November 7, 2008


At Kai's weekly appointment at Shriners this past Tuesday, I was pleasantly surprised to be informed that Kai will no longer need casts. Doctor Sussman explained that his feet are as corrected as they are going to get and that from now on he'll wear removable braces on his feet to hold them in the newly-corrected position.
A few days old, before casting
One month old, after two weeks of casting

Doctor Sussman also reminded us to be very careful with Kai's ears, as they could at any time begin to fill with fluid, causing cauliflower ears. Additionally, due to Kai's condition, his cervical spine is especially fragile. Doctor Sussman explained that it is very important to keep Kai's neck in an "extended" position (neck straight, chin up), rather than a "flexed" position (chin tilted toward chest). We want to avoid any and all jerking movements that could injure his spine, i.e. baby swings, bouncers and tummy time.
Tuesday's appointment, for me, was somewhat of a reality check. Kai is so much like an average baby in so many ways that it is easy to forget just how delicate he is and just how differently he sometimes needs to be treated.


♥ sheena said...

Hi Chelsea. It's Sheena {Buxton} Daniels.

I know your cousin Aubry and found Melissa's blog, which led me to yours & Carrie's. I'm glad I found you two.

You look great & what a cute little boy Kai is! I love his Nacho costume too!

Do you have Carrie's e.mail so I can check up on her through her blog. I haven't seen her since Ashely Trupp's wedding and she was still Prego. How is she and that babe doing?

Where are you at now and what are you up to?

Stacey said...

Hi, my name is Stacey Stone. My husband was the one who found your blog. We live in Saratoga Springs, UT...just west of Lehi. We just had a baby boy, born on the 5th of November, who has a form of dyastrophic dysplasia. We haven't actually met with anyone at Primary's or Shriner's yet, we're set up to meet with someone in December. We were excited to find another couple out there who knew what we were going through. This is our second child, our first is 2 years old now, and developed normally. I can't imagine going through this with your first baby, that had to be so hard. Our son's name is Grant, and right now we are posting our blogs about him at Just wanted to let you know we're out there. Thought it would be fun to keep in touch. :o)