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.

Pages

Friday, April 10, 2009

Kai had an appointment up at Shriner's March 31st. Dr. Sussman took a look at Kai's feet and was pleased that they were maintaining their correction so well. He told us that Kai should be ready to have surgery (tenotomy) in three to four months! They took x-rays of Kai's feet and of his spine. His spine is beginning to have some curvature. Dr. Sussman is most concerned about the curvature at the top of Kai's spine and reminded us to be very careful with Kai's neck; that it's more fragile than it seems. While we were there, Kai was also fitted for new AFO's which will be ready next week.



Dr. Sussman also commented to me that Kai was looking pretty chubby, almost too chubby! He recommended that I "cut back a little bit." LOL. How do I do that when I'm only breastfeeding the boy? --the next day, April 1st, was when I started feeding him cereal. That has decreased the frequency of breastfeeding, but now he's hooked on cereal and eats a ton of it! I feel like we've jumped from the frying pan into the fire!

In truth, though, I'm not too concerned about Kai's chubbiness. He does have his six-month well-baby check on the 22nd and I'll ask his pediatrician about it then. If she seems concerned then I'll be concerned. But I think she'll tell me not to worry to much about it until he's a little older.

Wednesday, April 1, 2009

Momentous

The boy eats cereal! I took these pictures today while Kai gallantly ate almost all of his third meal of rice cereal (his first two were earlier this morning). What a champ.
And yes. His eyes are still blue. *sigh*


It's amazing how much of a difference a couple of weeks can make. About a month ago I tried feeding Kai cereal and he rejected it. He gagged, he fussed, he wouldn't let the spoon get into his mouth. Today, in contrast, he opened his mouth and made his "cereal face" (formerly known as "nursing face") and hardly spit any out.

Go Kai!