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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Monday, December 14, 2009

This is what my handsome little man looks like today. When I stop and think about it, it seems unbelievable that so much time has gone by so quickly. Last night at midnight Kai woke up STARVING so we both had a PB&J snack. There were only three slices of bread left and being the selfish mom that I am, I made Kai's out of the heel so I could have the soft slices. I slapped jam on one side, slathered peanut butter on the other, and folded it in half, crust side out. Kai loved it--he thought it was a pretty cool book. He opened and closed and opened and closed it, book style. Before long he realized that his new book was edible, but only from the inside. I watched him press the whole thing to his face so he could bite the jam chunks off. This, of course, left a bread-sized imprint of peanut butter on his cheeks and forehead but it was so much fun to watch. The little bite marks out of the bread were just precious.

Friday, December 4, 2009

MRI

Today is Kai's MRI. I'm sure everything will go just fine; there's a pediatric anesthesia team, which is comforting to know. Since they have to put him under general anesthesia it's good to know that specialists will be in charge of doing it.

His last solid food was this morning at 7. He can have clear liquids until 10. We have to be there at 12 noon, his sedation is at 1 and the MRI begins at 1:30. That is a long time for my little guy to go without food!