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, October 30, 2009
Wednesday, October 28, 2009
Monday, October 26, 2009
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
(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
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.
Tuesday, October 6, 2009
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?).