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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Friday, October 30, 2009

Calling Cards

When we're out and about we often meet people who are enchanted with Kai. And now, thanks to these new "business" cards I just ordered, I can direct them to his blog more prettily than scribbling it on whatever scrap of paper or receipt was handy.

Wednesday, October 28, 2009

Costume

I sewed Kai's Halloween costume last night.

Pictures to come (my camera battery is charging).

Any guesses on what it is??

Hint: It's something yummy.

Monday, October 26, 2009

Back to the Usual

The spots went away after a few days. They started on his face, spread to his abdomen and from there moved out to his arms and legs. Then they disappeared.

We had a visit with the neurosurgeon up at Shriners. They showed me the x-rays of Kai's spine. There is abnormal curvature at its cervical and sacral parts. At the back of his neck his spine curves forward; instead of the vertabrae stacking on top of each other, they are slanted, somewhat like stairs. The major concern right now is spinal cord compression. Kai needs to have an MRI to determine if there is any immediate danger to his spinal cord. Assuming all goes well witht he MRI, he will only need a follow-up visit in about 5 months. They didn't tell us "worst case scenario"; they didn't have to. Worst case scenario is spinal surgery.

The MRI will be scheduled for sometime in the next 6 weeks. It will be done up at OHSU in Portland where they have a dedicated Pediatric Anesthesia team. Kai will have to be put under general anesthesia for the MRI, which is a danger in itself. C'est la vie.

Friday, October 16, 2009

*click photos to enlarge

Kai is currently covered in spots. I'm relatively certain he's having a rare reaction to the chicken pox vaccine he got on the 5th (I have a half-memory of Kai's pediatrician telling me that he could break out in a rash up to two weeks after the shot). In the photos he's got Cortison cream slathered all over him (it didn't help).
(and yes, I am aware that one of my hairs is stuck in the lotion on his cheek. Gross, I know. I can't always be perfect.)

As bad as his little tummy looks, his back is even worse!


He has no fever or other signs of infection. But this begs an important question: are the doses of vaccine standardized and therefore too high for him? He's barely longer than an average newborn and 97% of his peers weigh more than him...I suppose I should ask his pediatrician, but in the meantime, MODs (Mothers of Dwarfs): What have your experiences been with vaccines/vaccine reactions in your LP kids?

Wednesday, October 14, 2009

A Visit to the Roloff Farm Pumpkin Patch

Matt Roloff (who we all know and love from TLC's Little People Big World, and who has Diastrophic Dysplasia, just like Kai) and his family live less than an hour away from us. John and I have wanted to meet the Roloffs for more than a year; since we found out about Kai's dwarfism. We had plans to go to their pumpkin patch last year but didn't make it because Kai was (surprise!) born four weeks early.
We finally made it there on Saturday. We had a FANTASTIC time! It was well worth the trip. We got to meet Amy as well as Matt's parents Ron and Peggy (who were delighted to meet Kai, who, they said reminded them of Matt when he was a baby).
We took a tour of the farm and the infamous western town. We picked pumpkins. The girls took a pony ride and ran through the straw-bale maze.

We left exhausted and happy.



Evidence of Paintball Wars
Rivas+Roloff

Ron and Peggy Roloff


Kai was so confused about what was going on!










Tuesday, October 6, 2009

Birthday Blogging

I've procrastinated blogging about the big number ONE birthday. I didn't get any pictures at his party on Friday because I was too busy enjoying it! Luckily my sister-in-law took lots of pictures so when I get copies, I'll post them.

The party Friday was great. We raised money for Shriners (thank you to all who donated!), had cake and ice cream, and spent a large amount of time adoring the birthday boy!

Saturday (his actual birthday) was equally fantastic. Kai got some good presents (including some handsome new clothes--pictures to come).

Yesterday was his 1-year well-child check-up; complete with 5 shots. He weighs 18 lbs (3rd percentile), is 23 inches tall (0 percentile), and his head is back into the 75th percentile (he's got big brains, what can I say?).