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.


Wednesday, March 11, 2009


We have a fantastic physical therapist who comes out every two weeks to work with Kai. This is one of the exercises she recommended--altered "tummy time" (our doctor at Shriners advised against traditional tummy time). Because Kai is unable to push up on his hands and lift his upper body the way most kids do, he has to rely solely on his back and neck muscles to hold his head up when laying on his stomach, which is extremely difficult and could injure him. So instead, we prop him up like this: (yes, that is a big glob of drool about to drop from his lip onto the Boppy)
The sleeper he's wearing is a newborn size. He's finally able to fill the arms and legs (almost) to the that he's five months old!

He loved this position for quite a while but it's hard work for him to hold up that big dome piece (his head is in the 70th percentile, remember?).


Miss Melissa said...

hahah that is the cutest thing i have ever seen! dear kai. what a sweetie.

cassi said...

AHH! I just want to kiss that face all over! He is so pretty (sorry John)... but he is! I LOVE his cheeks!

Nate and Stacey Stone said...

he looks so cute, I love those last two pictures! I'll have to get my boppy back out and see if that helps Grant. Grant has almost outgrown the 1-3 month clothes in the body length but his legs and arms are obviously not all. I think I'm going to have to start altering his clothes.

Carrie Richins said...

Wow, it looks like he's doing really well with that altered tummy time! He's such a stinkin' cutie, I can't get enough of his cheeks. They're precious.

Stephanie said...

I just found your blog. I really appreciate you taking the time to do it. My son wasn't diagnosed until he was 4 months old. Kai is such a cutie. It helps to see what things may help Nate, like the board for sitting up in his chair.