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 14, 2009

This is what my handsome little man looks like today. When I stop and think about it, it seems unbelievable that so much time has gone by so quickly. Last night at midnight Kai woke up STARVING so we both had a PB&J snack. There were only three slices of bread left and being the selfish mom that I am, I made Kai's out of the heel so I could have the soft slices. I slapped jam on one side, slathered peanut butter on the other, and folded it in half, crust side out. Kai loved it--he thought it was a pretty cool book. He opened and closed and opened and closed it, book style. Before long he realized that his new book was edible, but only from the inside. I watched him press the whole thing to his face so he could bite the jam chunks off. This, of course, left a bread-sized imprint of peanut butter on his cheeks and forehead but it was so much fun to watch. The little bite marks out of the bread were just precious.

Friday, December 4, 2009

MRI

Today is Kai's MRI. I'm sure everything will go just fine; there's a pediatric anesthesia team, which is comforting to know. Since they have to put him under general anesthesia it's good to know that specialists will be in charge of doing it.

His last solid food was this morning at 7. He can have clear liquids until 10. We have to be there at 12 noon, his sedation is at 1 and the MRI begins at 1:30. That is a long time for my little guy to go without food!

Monday, November 9, 2009

Stunned

Today's mail*
*click to enlargeMODs: What have been your experiences with insurance and your LP child?
This letter only just came today and right now I'm feeling definitely taken aback, confused and frankly, unjustly discriminated against. If Kai were terminally ill I could understand being turned down. But he's not! He is as healthy as and has the same life expectancy as an average height child his same age. In fact, I would venture to posit that Kai is, in many ways, more healthy than an average height child his same age.
I'm going to get to the bottom of this.

Monday, November 2, 2009

Halloween 2009

So much fun. Kai was the cutest little gingerbread man.

Big sister Ashleigh was a bride.

John was an army guy, I was a gypsie, and Hailey was a witch. We didn't plan for John to stand in front of the plant with his camo-painted face. He blends in pretty well, doesn't he?


This is Kai's favorite girl, Britanie.









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?).

Wednesday, September 30, 2009

One year ago today...

...I was 35 weeks, 4 days pregnant and feeling bulbous and uncomfortable. John and I hadn't bought a carseat yet, but other than that I was so ready for Kai to come. Or, better said, I was so ready to not be pregnant anymore. But, being only 35 weeks, I thought I had several more weeks of pregnancy (a.k.a. discomfort, acid reflux, restless nights, and ill-fitting maternity clothes--if you've been there, you know what I'm talking about!).

It seems unreal to me that my little Kai is almost a year old. So much has happened to us as a family in the past year that the time has flown by.

Friday, September 18, 2009

17 (and change) pounds, 1 foot 11 inches tall

Those are Kai's measurements, as taken today at Shriners. We also got x-rays, which showed that Kai's cervical spine is weak. Dr. Sussman would like us to meet with a spinal surgeon in a month to discuss what to do about Kai's spine. Only after we have that sorted out will we start worrying about his feet.

Wednesday, September 16, 2009

Miracles

In a surprising turn of events, we've moved back to Salem (we moved from Salem to Kennewick, WA in July of this year)! I am so glad to be back. For the past three months we've been cramped in a tiny upstairs apartment in the hot, dry desert of SE Washington. We came back because John was miraculously able to get his job transferred. Our Salem house has been on the market for three months with no success and, with mortgage and rent due every month, it seemed too much of a risk not to leave it on the market and hope it sells in the next several months before our savings runs out.

This is no less than a miracle for us and we are so grateful for it!

Additionally, Kai had a great support team here: his physical therapist Eileen, his pediatrician Dr. Farrah, and all the fantastic people at Shriners Portland. We are so glad to get them back!

Thursday, September 3, 2009

11

Favorites:
-Nursing
-Eating "big kid" food
-Rejecting baby food
-Laughing at his silly big sisters
-Splashing in the bathtub

Milestones:
-Giving kisses
-Eating "big kid" food
-Drinking from a bottle
-Saying "dadada" when prompted
-Shaking his head "no-no-no" when prompted

Happy 11th month, Son!

Sunday, August 30, 2009

Highlights from our trip to Idaho

We recently got back from a visit to Teton Valley, Idaho, where my parents live. Kai's favorite things about this trip included

Meeting new friends...
Wearing Uncle Christian's most prized possession (Christian is my 16 year-old brother who--I think--got this hat from my other brother, Sterling, who is in the Utah National Guard)








Getting hit over and over and over...and over...in the head by cousin Audrey (my sister Carrie's one year-old). It got to the point that whenever Audrey was close by, Kai would squeeze his eyes shut and brace himself for the inevitable impact of Audrey's fingers in/on some part of Kai's face/eyes/head.



Tolerating Audrey's kleptomania. There was never a toy Kai had solely to himself the entire time we were there.






And of course, sitting in the fruitbowl. Classic.







Monday, August 3, 2009

BACK ONLINE

Today we got internet in our little apartment (yay!). And not a moment too soon, because today is August 3, which, as you all know, means that Kai is ten months old today! Happy un-birthday, son!
Here he is, trying to take a bite out of the table.





Tuesday, July 28, 2009

MOVED

We've rented an apartment here in Kennewick until the Salem house sells. We're still unpacking and (annoyingly) without internet. Hopefully we'll be back up and online in a few days.

Friday, July 24, 2009

Voila!

This is momentous. Look at what The Boy can do!







It is a huge accomplishment for him to be able to pick things up from off the ground when he is in a sitting position. YAY, Kai!

Pictures

This is one of Kai's and my very good friends, Jessica Curry. She has a magic touch with him; he loves to fall asleep in her arms.

It has been so hot this summer. One night I stripped The Boy down and put him to bed wearing only a diaper.



We are in the middle of moving from Salem, Oregon to Kennewick, Washington. Poor little butter bean has had to just entertain himself while I pack.



Wednesday, July 22, 2009

9 Month Well-Child

Today was Kai's nine month well-child visit where he was weighed, measured, listened to, watched and talked about. Here are his stats:

Length: 22 inches (0 percentile)
Weight: 16 lbs 13 oz (3rd percentile)
Head: 55th percentile

Thursday, July 16, 2009

FINGER FOOD

There is no modest way to say this.

Today the boy used his three-piece set of Cutco teeth to saw through me while nursing. Thank heavens for the power of connective [albeit delicate] tissue. And coagulation (oh yes, there was blood--TMI, I know).

I have been trying to avoid him all day in the hopes that he will forget all about me (and therefore all about breastfeeding) but that's hard to do when you're the sole care-provider.



Sunday, July 12, 2009

Finger Food

Today the boy figured out finger food! Pictures to come.

Friday, July 3, 2009

Nine.

Baby:



Big Boy:










Here's to the nine months I've spent in love with my little boy!

Tuesday, June 23, 2009

Summer's hottest fashion statement: drool on your shirt. All the cool kids are doing it...




What started with an accidental drip during lunch ended as a monumental mess (and an impromptu bath). But in the middle, it was TONS-O-FUN!!
Don't you love the chubb?







Wednesday, June 17, 2009

Chompers and Shopping

Kai is STILL teething. He has one top tooth and one bottom tooth already but I swear I can see at least three more. Poor kid.

Yesterday we took Kai to the Oregon Coast on a little day trip. It was too cold to go down to the beach so we went to the outlet mall instead. He's finally big enough to move up a size (from 0-3 to 3 months). This is momentous; I've hardly bought any clothes for him since before he was born and The Boy is now 8 1/2 months old.

So we're there at the counter and John is holding Kai in his arms and the store clerk says something like, "My, he's a big one!" --something like that. I just chuckled. I think she thought he was only 3 months old; that's the size of clothes we were buying for him. I wanted to tell her that he was really 8 months old but I realize she was just saying something to be friendly and conversational, so I didn't correct her.

I went to a new hair stylist a few weeks ago who said kind of the same thing. I mentioned Kai's dwarfism (he was there next to me in his carseat) and she said that she hadn't realized he had dwarfism; she thought he was just a fat little baby.

As I type, the "fat little baby" is screaming in his bed. I had hoped he'd fall asleep but he can have a will of iron when he's tired and wants to nurse.

Friday, June 5, 2009

Yes. That is exactly what you think it is.

Yesterday while his physical therapist was here, Kai sat up unsupported for the first time. It is my personal belief that he was saving this trick for her because he has a little bit of a crush on her; he's constantly flirting and showing off for her when she's here. In this picture though, he looks like he's about to say, "I know, I'm just as surprised as you are, Mom!"






Wednesday, May 27, 2009

Bumbo, Haircut, and Serious Regrets

Post haircut. If you look closely, you'll see that Kai is covered in hair. (click on the picture to enlarge it)
I put the plastic cape on him to keep him entertained. It worked. He loved it. The downside was all the hair that was thrown into the air.

His face tells the whole story here. Kai was not such a big fan of the clippers.


Pre-haircut. Outside on the patio enjoying the afternoon. He LOVES the Bumbo seat. It is so perfect for him. It supports him up to his shoulders in the back. He rests his arms on the sides and sits there with a kingly attitude--like it's his throne.







Oh, and the serious regrets: I regret cutting his hair. Good thing it will grow back.