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, September 30, 2009

One year ago today...

...I was 35 weeks, 4 days pregnant and feeling bulbous and uncomfortable. John and I hadn't bought a carseat yet, but other than that I was so ready for Kai to come. Or, better said, I was so ready to not be pregnant anymore. But, being only 35 weeks, I thought I had several more weeks of pregnancy (a.k.a. discomfort, acid reflux, restless nights, and ill-fitting maternity clothes--if you've been there, you know what I'm talking about!).

It seems unreal to me that my little Kai is almost a year old. So much has happened to us as a family in the past year that the time has flown by.

Friday, September 18, 2009

17 (and change) pounds, 1 foot 11 inches tall

Those are Kai's measurements, as taken today at Shriners. We also got x-rays, which showed that Kai's cervical spine is weak. Dr. Sussman would like us to meet with a spinal surgeon in a month to discuss what to do about Kai's spine. Only after we have that sorted out will we start worrying about his feet.

Wednesday, September 16, 2009


In a surprising turn of events, we've moved back to Salem (we moved from Salem to Kennewick, WA in July of this year)! I am so glad to be back. For the past three months we've been cramped in a tiny upstairs apartment in the hot, dry desert of SE Washington. We came back because John was miraculously able to get his job transferred. Our Salem house has been on the market for three months with no success and, with mortgage and rent due every month, it seemed too much of a risk not to leave it on the market and hope it sells in the next several months before our savings runs out.

This is no less than a miracle for us and we are so grateful for it!

Additionally, Kai had a great support team here: his physical therapist Eileen, his pediatrician Dr. Farrah, and all the fantastic people at Shriners Portland. We are so glad to get them back!

Thursday, September 3, 2009


-Eating "big kid" food
-Rejecting baby food
-Laughing at his silly big sisters
-Splashing in the bathtub

-Giving kisses
-Eating "big kid" food
-Drinking from a bottle
-Saying "dadada" when prompted
-Shaking his head "no-no-no" when prompted

Happy 11th month, Son!