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

It's ugly...but who cares? It works great

Our lovely physical therapist brought this over for Kai. It's homemade-from cardboard (heavy duty)! The contact paper on it isn't the prettiest; I think we'll recover it. I have some better pictures of what it really looks like but I haven't uploaded them yet. Kai loves this chair! It keeps his hands and arms forward and the tray comes up right under his armpits so it's the perfect height. The high back and corner positioning help him use his muscles to stay upright in it. He can reach his toys so much better because they are at just the right height.

His sisters tend to overwhelm him with toys. They think he needs all of his toys on his tray at the same time.


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?).