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

Saturday, January 23, 2010

Kai stole my apple and wouldn't let go of it.
Apples are his new favorite snack/toy/weapon.
He's not such a fan of the skin, however. He spits it out
(that's a shred of apple peel on his bottom lip)



In other news, Kai's MRI results were positive and he will not be having surgery of any kind in the foreseeable future, neither on his feet nor his spine. At our last Shriners visit, Dr. Sussman explained that he'd been in contact with Finnish specialists (in Finland, the prevalence of DD is much higher than here in the US. These doctors, therefore, are much more experienced at treating DD kids' orthopedic and spinal issues). These doctors explained that no matter how bad their spinal issues, neck surgery seemed to always make matters worse. As for feet, DD kids don't have average club-feet; after a tenotomy (which releases the tension and elongates the achilles tendon allowing for increased plantar mobility), the feet tend to regress back to their clubbed position with 6 months to a year. In essence, it doesn't really help.
So! Kai was fitted for a new pair of AFOs (Ankle-Foot Orthotics) that will be ready February 9. In these AFOs Kai will be able to stand. They will be built up on the bottom to compensate for his feet; the bottoms of the AFOs will stand flat on the floor.

11 comments:

Destini said...

Hopefully he eats most of the apple before using it as a weapon :) So glad Kai isn't going to be having any surgery, and that the doctors are doing their research.

cassi said...

How fun! Does that mean that he will be able to walk someday?

He looks so different, Chels! I can't believe how much baby fat he's lost. Super cute cute cute!!!!

Richins Family said...

He will be SO cute standing up! I'm sure he will love it. I'm really glad he won't have to have surgery, that way I won't have to worry across the country.

How on earth does he get cuter and cuter every single time I see him?! Kiss The Boy for me, I miss him terribly.

And you too, of course.

Jewels said...

He's so cute. I know you hear that all the time, but I'm going to say it anyway.

I'm so glad that he won't be having surgery, and that soon he'll be able to stand up, although he'll have to wear those nasty braces again.

What an adorable little boy. :D

Larry said...

First time on the Kai man's blog - you are the sweetest girl Chels and we look forward to seeing all of you in a few days but especially DeLaCruz Jr.

DeLaCruz Sr.

Melisa said...

Well, that is good new for no surgery. I never knew that DD was higher in Finland than in the US.

Melissa Swartley said...

Yay!!!! What a great health report! Kai will be joining Sonya in the AFO's! Sonya is on day 8 of wear now and doing great! Sonya also had surgery to correct her club foot and then she wore a Mitchell Bar Brace afterwards for months... Her right foot (previously clubbed) looks like it may be trying to go back, it's C curved and she has been standing on the outside of her foot. Because of her leg length discrepency (right leg is longer) we aren't sure if it's going back or if she stands like this to compensate. Anyways, AFO's it is! I can't wait to see Kai's pretty cool new shoes! Best wishes getting them and during the fitting!!!

Greene Family said...

Kai is so adorable - love the pictures! I'm so happy to hear that he will not need surgery! Can't wait to see pictures of Kai standing with his new AFO's!

Kim said...

Kai is so darn cute! I just love all these new pics. He is such a happy baby! I am thrilled that you don't need any surgery! That is fantastic news. It will be great that he has his new AFOs to start standing. Fabulous!

Kasia, Hania i Pol said...

Hi Chelsea! What a great news! We are so happy for Kai! Hania has her MRI scheduled for May and I'm already getting nervous when I think about it.

lori johnson said...

hi, my son zeke has diastrophic dysplasia, he has a very severe c= spine kyphosis that they say needs surgery i would like very much to know more about the drs. from finland and their phlosophy on it, Peggy roloff gave me you blog sight, she is a good friend.