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, December 10, 2010

New Friends

Yesterday I googled Diastrophic Dysplasia and found, among other things, this blog:

Holding onto Hope

Yay for new friends!

Today Kai had a physical therapy appointment at Shriners.  He is learning how to use a power wheel chair.  It's funny to watch him "drive" because he doesn't understand that you have to push the lever forward and hold it there in order to go forward.  Steering is also pretty foreign.  I can tell that he knows where he wants to go, he just doesn't know how to translate that into "push the lever forward.  Push the lever to the right...weeeeee!"  So we did a lot of circles, a lot of backing up and a lot of horn beeping (there is a button that makes a sound similar to what you hear when large vehicles back up, only a little more obnoxious).

I am so proud of my boy; so proud of the progress he's making, so proud of his patience and tolerance, and so stinking proud of how impossibly cute he is ALL THE TIME.


Nicole said...

Hi Chelsea,

I've been following your blog for ages!! Ever since I was pregnant with Maddy actually. Kai is gorgeous, and it's so great to see what things might be like for us two years down the road. Gotta love the internet - if it wasn't for being able to connect with other people in the same situation as me, this could feel so isolating. :)

Kim said...

I am so proud of him too! I remember reading your blog when you brought him home and now his mobility! I cannot wait to see pictures and videos of Kai doing tricks in his chair!