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.


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.


Melissa Swartley said...

Awww! He's not chubby, he's very healthy drinking all his mommy's milk! Sonya has always looked a bit pot-bellied and she has the chubby cheeks too, but I think she is growing into her rolls now! Must be all that good mommy milk! LOL!

Burton Family said...

I am so happy to see that Kai is doing so well. And I agree with you I dont think his weight is anything to worry about, chubby babies are happy babies. Shad is on the total other end of the spectrum, he is a little light for his weight which makes him look less like a baby and more like a little boy, I think he is pretty dang cute.

Kim said...

I don't know the rules for DD, but with achon, Dr. Ain told me that I should not worry too much about Preston's weight until age two and above. Now I do watch what he eats because it is a catch 22-they all have the appetite that correlates with age, just not the height. He is just a cutie pie!

Greene Family said...

I'm glad to hear that Kai's appointment went well! He's so adorable!! Simon was chubby at 6 months old too (only drinking mommy's milk at the time also). His pediatrician told us not to worry about it (one of his other doctors told us he was too chubby) and that he would thin out the more he started eating solid food, which he did. Simon loves to eat, so he will go through spurts where he looks a little chubby at times, but they always tell me now that his weight/height ratio is great (he's 20 months old now).