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.


Monday, December 15, 2008

Kai's Gear

These are the braces Kai wears on his legs (at two weeks old Kai was put into full leg casts to correct his club feet. After a few weeks of casting his feet were corrected and since then he's been wearing braces on his legs to maintain the correction). He is supposed to wear them each day, all day with only an hour break in the morning and an hour break in the evening, but I've found I cannot change his diaper while he's wearing them and he also sometimes doesn't sleep well while wearing them.

Our Occupational Therapist at Shriner's, Denee, is fantastic. She made these splints for Kai's hands. Because his thumbs are hyper-extended (hitchhiker thumb), there is the possibility that the muscles in his thumbs and wrists will atrophy, limiting further his ability to use his thumbs. The splints counteract that by keeping his thumbs in a more correct, or lengthened, position.


Jewels said...

Oh, that poor little guy! How do you do it Chels? I'm excited to see you for Christmas! Oh, Ben says it's your turn to come see us this time - so we'll be at my mom's house. I don't have your number, but mine is 208-553-4374 Please call me. I really want to see you!

Melissa Swartley said...

Hi! My name is Melissa and I am mom to 3 girls, my youngest Sonya has an undiagnosed type of dwarfism. I just stumbled upon your blog while searching and wanted to say hi! Sonya is currently being treated for her club foot too and wears a Mitchell Bar Brace 16 hours a day. Feel free to check out our blog at