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.


Monday, October 26, 2009

Back to the Usual

The spots went away after a few days. They started on his face, spread to his abdomen and from there moved out to his arms and legs. Then they disappeared.

We had a visit with the neurosurgeon up at Shriners. They showed me the x-rays of Kai's spine. There is abnormal curvature at its cervical and sacral parts. At the back of his neck his spine curves forward; instead of the vertabrae stacking on top of each other, they are slanted, somewhat like stairs. The major concern right now is spinal cord compression. Kai needs to have an MRI to determine if there is any immediate danger to his spinal cord. Assuming all goes well witht he MRI, he will only need a follow-up visit in about 5 months. They didn't tell us "worst case scenario"; they didn't have to. Worst case scenario is spinal surgery.

The MRI will be scheduled for sometime in the next 6 weeks. It will be done up at OHSU in Portland where they have a dedicated Pediatric Anesthesia team. Kai will have to be put under general anesthesia for the MRI, which is a danger in itself. C'est la vie.


Richins Family said...

Good luck, Kai. We love you and we'll be praying that all goes well.

cassi said...

We love you guys! Call us and let us know the day you will be going to Portland.. maybe we could come meet you guys halfway and help out and/or play. :)

Melissa Swartley said...

I hope everything goes in Kai's favor! We will be praying for you that all goes well!

Jewels said...

good luck! Let me know if you need anything. Love you guys!

Kim said...

Please keep us posted on the MRI and the subsequent results. I know Kai will do fantastic!!!

Greene Family said...

I'm so glad his spots disappeared! We'll be praying that all goes well with Kai's MRI and that you get good results!