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, June 29, 2010

Today we picked strawberries.  Or rather, I picked, Kai ate.  It was FUN!  ...Now I'm just waiting for the diarrhea to start (Kai's, not mine). Proportionate to his body size, that kid ate WAY too many strawberries for his digestive tract.

Saturday, June 12, 2010

Friday, June 11, 2010

The day we tortured The Boy


Kai has pretty much the best physical therapist who ever walked the planet.  She is FANTASTIC (you know you are, Eileen) and we adore her.  She made arrangements for Kai to try out this power chair.  Kai was thrilled!  He loved it.  See?    .

Eventually we got him into the chair and, after about 20 minutes, he finally realized what that chair could do.  I took lots of video with my phone but I'm at a loss as far as how to transfer it to a format that will allow me to post it here.  I'm trying, though, I promise!  

Kai's driving theory is based on (and much resembles) the flight pattern of a bumblebee, which is to say, he zigs and then zags, lurches forward, then spins around, meanders to the left, then angles to the right.  I think the only direction he didn't go was straight forward.

 

Conversations with Kai

Following is a typical conversation I have with Kai every day around bedtime:

Me: Kai, let's go night-night.
Kai: No!
Me: Well, then, do you want a snack?
Kai: No!
Me: Do you want your juicey? (sippy cup)
Kai: Joosh.  Joosh.
Me: Here's your juice.  Where's your man-mimi?  OK.  Now are you ready to go night-night?
Kai: No!

We also often have this conversation:
Me: Kai, can you say, 'dada'?
Kai: No!
Me: Can you say, 'mama'?
Kai: No!
Me: Can you say, 'Ashy'? (big sister's name is Ashleigh)
Kai: No!
Me: Can you say, 'onomatopoeia'?
Kai: Eeeee.
Me: Can you say, 'Kai'?
Kai: No!

And this one is also classic:
Me: mooo
Kai: ooooo
Me: quack, quack, quack
Kai: wa, WA, WA (it gets progressively louder)
Me: arf! arf!
Kai: rar-rar-rar-rar
Me: (shrill horse whinnying noise)
Kai: Eeeeeeeeee! (incredibly shrill)
Me: Meow
Kai: ow


He does say mama, dada, and ash...but we've exploited that so much that he pretty much refuses to do it on demand.  Other words he knows: ball, owie, amen, thank you, juice, hi, hello, ta ta (as in 'goodbye'), ta-da, and all done.