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.


Thursday, June 28, 2012

I Wish...

...I would've taken a picture of Kai's face yesterday when, in a store, a lady came up to us and started talking to him in baby talk--EVEN AFTER I told her he was three years old.  His face was a perfect mix of disgust and incredulity.  It was priceless.  

Tuesday, June 26, 2012

Daily Dose of Kai

Sometimes I blog more for myself than for anyone else.  I've forgotten a lot of the cute things my girls did because I didn't write it down or take a picture.  Thanks to advancements in technology (oh, how I love my smartphone!), most of Kai's cuteness is photographed and recorded.  

This, for example (did I already post this one?  I think I did.  But it's just so dang cute!):
The cutest little pouter on the planet.

And of course, Target's "ABC trashcan".  He can't read, but The Boy recognizes letters when he sees them!

 New t-shirt.  He's graduating from little brother to big brother and he's so proud!

 Kai also loves my phone.  He loves to take pictures and videos and then watch them.  He wanted to take a picture of the baby.  So here you are, people of the internet.  My 17-week GUT.

 Forget the carts with the steering wheels.  Kai nearly always insists on getting the "baby" carts.  I know, I know--he's not buckled.  But he's happy and adorable and I'm standing righttherenexttohimalways.

This was in Kai's fortune cookie at dinner the other night.  Strange?  Ironic?  Coincidental?  Truly fortuitous? Kai has lots of medical opportunities in his near and distant future.  I wonder which one will be "interesting."

P.S.  Potty training is going great!  He reminds me now when he need to use the bathroom.  Our biggest impediment now is (oddly enough) ME!  Lifting Kai onto and off of his little Lightning McQueen toilet is taking a toll on my back and tailbone, which are always weak and achy starting at about 20 gestational weeks (this is thanks to a 20-year old tailbone injury).  

Ryan's Room in Kai's Room

These tiny wooden people and their household have been packed in a box for the past five years while we moved around the countryside. They now live in Kai's room, on his bottom two closet shelves (until I find them a new house).  I love these dolls because they are durable and unisex*.  

It's interesting to watch how Kai plays with these dolls and furniture as opposed to me or the girls.  My girls and I would be all about setting up the rooms and posing the dolls.  Kai couldn't care less that the bed is in the kitchen and the toilet is in the living room.  And to him, the home is not complete without a few matchbox cars scattered here and there.  

*Even if they were girly, I'd love for Kai to play "house" with them.  Some of you may not agree with boys playing with "girl" toys.  That's OK.  There's a fabulous children's book by Charlotte Zolotow entitled, "William's Doll".   For every parent with a son, it's worth a read--and then a good, long think. 

Thursday, June 21, 2012

It's Working! My Blog is Working Again!!

Blogger did some "updating" a few months ago which rendered my blog completely useless to me.  I couldn't post ANYTHING.  I was thisclose to giving up on this blog and starting over somewhere else...I'm so glad I don't have to now!

FIRST thing's first: Baby is doing great. This week is 16 weeks for me.  I'm mostly over being sick.  I'm just in that awkward is-she-getting-fat-or-is-she-pregnant stage.  We've already had an ultrasound and Baby's long bones are measuring on track with his gestational age with no indication of dwarfism (more later on how I feel about that).  We'll have another ultrasound on July 5th to re-measure.

NEXT, all kinds of Kai cuteness from the past few months:
Art.  This boy loves working on "projects".  This is probably because his sisters and I also love working on "projects."  

Mis-match day.  One of those days when nothing is clean except stuff that doesn't even remotely match.  But here in Oregon that's cool.  

What started out as "helping" me with the dishes turned into an impromptu Kai-only hot tub party.  

Maybe it's the pregnancy hormones but a few weeks ago I became obsessed with emergency preparedness.  I made 72-hour kits, bought a 55-gallon drum to store water, started hoarding small bills and change, and created a folder with all our important documents, including ID pages for all of us.  Kai wanted to make sure I got a shot of him with his precious bike.

What a ham.

I included a full body shot in his ID kit (the girls' pages only have headshots) and all his medical information.  Look how big he's getting!  By the way, this is his favorite outfit he's wearing: "truck shirt and bball shorts".  And yes, he says "bball", not "basketball".  They're his favorite because his dad wears bball shorts, too.

Rare snow.  This was waaay back in, like, February.

Throwing snowballs at the girls.

His round little footprints are my favorite!