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.

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Tuesday, January 26, 2010

Welcome!

Meet Guilherme. Born in Brazil on November 28, 2009, just over 7 lbs, and 16 inches long. What a handsome boy!




Casts on his legs; reminds me so much of Kai when he was a newborn.






Proud parents Cassiano and Andreia
Welcome, Cassiano, Andreia and little Guilherme! I am so glad you found our little blogging community!
See Guilherme's blog here






Saturday, January 23, 2010

Kai stole my apple and wouldn't let go of it.
Apples are his new favorite snack/toy/weapon.
He's not such a fan of the skin, however. He spits it out
(that's a shred of apple peel on his bottom lip)



In other news, Kai's MRI results were positive and he will not be having surgery of any kind in the foreseeable future, neither on his feet nor his spine. At our last Shriners visit, Dr. Sussman explained that he'd been in contact with Finnish specialists (in Finland, the prevalence of DD is much higher than here in the US. These doctors, therefore, are much more experienced at treating DD kids' orthopedic and spinal issues). These doctors explained that no matter how bad their spinal issues, neck surgery seemed to always make matters worse. As for feet, DD kids don't have average club-feet; after a tenotomy (which releases the tension and elongates the achilles tendon allowing for increased plantar mobility), the feet tend to regress back to their clubbed position with 6 months to a year. In essence, it doesn't really help.
So! Kai was fitted for a new pair of AFOs (Ankle-Foot Orthotics) that will be ready February 9. In these AFOs Kai will be able to stand. They will be built up on the bottom to compensate for his feet; the bottoms of the AFOs will stand flat on the floor.

Tuesday, January 12, 2010

Recent Pics

I don't know what this face was but it was so darn cute. I snapped it as soon as I saw it, which is why the angle isn't the greatest. What a funny boy.

Kai's "watching post" where he waits and watches to see if Daddy is home yet.

Sometimes he'll take little toys and play with them on the window ledge. It's so cute.



Thursday, January 7, 2010

Christmas, Between the Couch and the Wall, and Big Belly (not necessarily in that order)

At my parents' house in Idaho; wanting to go down the stairs.

Hangin' out with Dad on Christmas Day. I can't remember why he was naked at the time, but he sure is cute. He loves rubbing his belly.

Presents!








There's a floor vent beneath the wall where our loveseat is positioned so, to keep from blocking it, the loveseat sits about ten inches away from the wall. Apparently that's just enough space for a curious little boy to get into...

...but not out of. He got stuck and "called" for help.








Saturday, January 2, 2010

Phew! The holidays have been busy. We drove 14 hours to my parents' house in Idaho for Christmas (a long journey, undoubtedly, but well worth it). We came home for three days then went up to Seattle to spend New Year's with more family.

Kai has mastered a few signs. He can sign "more" and "all done". Next we'll work on "please", "thank you" and "sorry".

Pictures coming soon!