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.

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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

Buzzed.

Before:


After:





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.


Friday, November 7, 2008

CAST OFF

At Kai's weekly appointment at Shriners this past Tuesday, I was pleasantly surprised to be informed that Kai will no longer need casts. Doctor Sussman explained that his feet are as corrected as they are going to get and that from now on he'll wear removable braces on his feet to hold them in the newly-corrected position.
A few days old, before casting
One month old, after two weeks of casting


Doctor Sussman also reminded us to be very careful with Kai's ears, as they could at any time begin to fill with fluid, causing cauliflower ears. Additionally, due to Kai's condition, his cervical spine is especially fragile. Doctor Sussman explained that it is very important to keep Kai's neck in an "extended" position (neck straight, chin up), rather than a "flexed" position (chin tilted toward chest). We want to avoid any and all jerking movements that could injure his spine, i.e. baby swings, bouncers and tummy time.
Tuesday's appointment, for me, was somewhat of a reality check. Kai is so much like an average baby in so many ways that it is easy to forget just how delicate he is and just how differently he sometimes needs to be treated.

Friday, October 31, 2008

Halloween

Kai dressed up as Nacho Libre for Halloween. The casts on his legs made this whole costume possible! I painted on his "stretchy pants" and boots.
His casts are replaced weekly at Shriners Hospital; he'll get new ones Tuesday.

He is just such a doll!


Big belly--just like Nacho.







Tuesday, October 28, 2008

To learn more about Diastrophic Dysplasia, click here.

Tuesday, October 21, 2008

Leg Casts

Today was our first appointment at Shriners Hospital in Portland. Kai endured 3 1/2 hours of weighing and measuring, x-rays, doctors, nurses and occupational therapists' cold hands poking and prodding and manipulating his tiny hands and feet and then finally, being held down while plaster casts were put on his legs from his toes to his groin.

To correct his club feet (which we learned are only moderately severe), he'll wear a series of plaster casts for the next six weeks. Every week we'll take him back up to Shriners where the old casts will be removed and new casts applied. After the six weeks are up, his achilles tendons will be severed, and his legs recast for three more weeks (this will release tension and allow his tendons to grow back a little longer). After that he'll wear special shoes with a bar in between for a length of time (months?--I forgot how long) and then he'll continue to wear the shoes with the bar at naptime and at night for two years.

We also found out that Kai has gained a whole pound since birth! Usually babies have only just regained their birth weight by two weeks old.

Saturday, October 18, 2008

Kai de la Cruz Rivas





He's here! Born October 3, 2008 at 6:45 pm, weighing 5 lbs 3 oz and measuring 15 inches long, our sweet baby Kai is here!
Despite being a month early, he is very healthy and was able to come home with me when I was discharged on the 5th.

Sunday, September 28, 2008

Quick Background

John and I were married in the Salt Lake (LDS) Temple in February 2007. We are expecting our first baby, a boy, due November 1.

At 20 gestational weeks, we were informed that our baby had some kind of dwarfism, probably Diastrophic Dysplasia. At about 26 weeks, after an amniocentesis and genetic testing, the diagnosis of Diastrophic Dysplasia was confirmed.

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 this little, little boy.