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.

Sunday, December 14, 2008




I'm not going to pretend; I wish we hadn't buzzed it. I miss his long, scraggley, baby hair. I hope it grows back fast!

Friday, December 12, 2008

Great Feats of...Feet

I hate feet. Adult feet, that is. Baby feet are another thing entirely. Kai was sound asleep on the bed this morning, all wrapped up except for his feet, which were sticking out of the end of the blanket.

Thursday, December 4, 2008

Three shots. Two legs. A whole lotta Tylenol.

Yesterday Kai turned two months old so I treated him to a visit to his pediatrician's where he received his routine two month old immunizations. He is still in the 0 percentile for length, at about 17 inches long, but he's in the 10th percentile for weight at 9 lbs 10.5 oz--he's in the percentiles now! Hooray for Kai!

Blessing Day

On Sunday November 16, accompanied by my dad, brother-in-law Hector, and our good friends Dan Pippert, Kelly Clifton, Steven Luft and Bishop Taylor, John held Kai in his arms and pronounced a blessing on him. As he began to speak, I heard his voice tremble and falter and I knew that he was feeling what I was feeling: a closeness to God and to Kai that was so strong it was nearly palpable; a feeling of peace, of joy, of pure love; a sense of the sacredness of our stewardship over this child and a realization that he is truly a beloved son of our Heavenly Father. I could not stop the tears from flowing. And judging by the amount of sniffling I heard throughout the chapel, I'm guessing most of the ward felt that way, too.
In all my life I've never been so touched by a baby's blessing. It was a beautiful thing to witness and to share.