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, September 18, 2009

17 (and change) pounds, 1 foot 11 inches tall

Those are Kai's measurements, as taken today at Shriners. We also got x-rays, which showed that Kai's cervical spine is weak. Dr. Sussman would like us to meet with a spinal surgeon in a month to discuss what to do about Kai's spine. Only after we have that sorted out will we start worrying about his feet.


Richins Family said...

The Boy is such a precious little chunker! I don't envy all of the procedures he'll have to have. That's not going to be fun for anyone involved. Tell you what, just have him do a few more "no-no-no-no-no"s. That should strengthen his little neck, right? If only.

I miss him!!

Kim said...

He sounds all around healthy. I know the procedures scare you and of course fear of the unknown is scary-but he is going to do fantastic!!! Can't wait to see new pictures of your gorgeous son!

Stephanie said...

What you are going through sounds incredibly scary. I'll keep him in my prayers.

Dallings said...

wow! He is one handsome boy! Sorry to hear about his challenges. Val Dean had a cervical fusion a few months ago. (Let me know if you want to talk to me about it). It was scary but he is doing so well.

Amazingly, the surgery seemed to have stimulated his bone growth. At 6 months old he was about 26", in May this year was 28'. So he only grew about 2 inches in 2 years. At an appointment last week they measured him and he has grown THREE inches in 4 months! His legs look so different. It used to be that he had no thigh bone, his knees came out of his diaper, and now they are skinny and long. It's so incredible. Not sure how it happened. I have been giving him some bone strengthening supplements to help his fusion, perhaps it helped. I don't know.
Let me know if you want to talk about anything. He is so cute. You are such a great mother!

Nate and Stacey Stone said...

Hm...sounds really familiar. We've made a little progress as far as the brace goes, but we are still just waiting to see if Grant needs surgery to fix his neck. All other surgeries on hold. Hope you get good news!

Nate and Stacey Stone said...

If you want Grant's neurosurgeons contact info to give to your doctors just let me know, it might be helpful for the doctors to see similar cases and bounce ideas off each other.

Burton Family said...

Good luck, I am always praying for you guys and I know that Kai couldnt have landed better more caring parents than you too. Miss you already.