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 20, 2010

"Mom. Watch."

video
Kai's new favorite thing is jumping.

My apologies for the bright light in the background.  I tried re-shooting this video later that evening with the light off but Kai wouldn't jump anymore.  

Saturday, December 11, 2010

New Project

A memoir of my life as Kai's mom.

Friday, December 10, 2010

New Friends

Yesterday I googled Diastrophic Dysplasia and found, among other things, this blog:

Holding onto Hope

Yay for new friends!


Today Kai had a physical therapy appointment at Shriners.  He is learning how to use a power wheel chair.  It's funny to watch him "drive" because he doesn't understand that you have to push the lever forward and hold it there in order to go forward.  Steering is also pretty foreign.  I can tell that he knows where he wants to go, he just doesn't know how to translate that into "push the lever forward.  Push the lever to the right...weeeeee!"  So we did a lot of circles, a lot of backing up and a lot of horn beeping (there is a button that makes a sound similar to what you hear when large vehicles back up, only a little more obnoxious).

I am so proud of my boy; so proud of the progress he's making, so proud of his patience and tolerance, and so stinking proud of how impossibly cute he is ALL THE TIME.

Monday, December 6, 2010

Pastiche

If you haven't visited Hyperbole and a Half, you are missing out on some seriously funny material.  In honor of Allie Brosh, the blog's author, I bring you a peek into a typical day with Kai:

Friday, November 19, 2010

Pre-Haircut, Pre-Halloween pictures

This kid makes the funniest faces!



 Here he is sitting in my sewing machine box.  It was the perfectly sized "boat" for him.



 Most days he spends a significant amount of time on his "Turn" (aka bike).  He shoves his man mimi in between the handlebars and trots off as fast as he can.  He still has trouble turning (which is why he calls it his "Turn"--I frequently remind him to "Turn-turn-turn-turn!"  Yesterday, in fact, he called to me that he was stuck.  I followed the sound of his voice into the living room but I couldn't see him.  Eventually I did find him; he had ridden his bike under the sofa end table and was stuck on his bike between it and the wall.  It was so cute and funny.

Thursday, November 11, 2010

Thursday, October 28, 2010

After much deliberation

We set the bar pretty high with Kai's first Halloween costume.  Last year he was edibly adorable.  This year (drumroll, please) Kai is going to be a Cub Scout!


This all came about to my twelve-year-old friend Hannah.  See, I volunteer each week as a Cub Scout Den Leader and also as a youth leader of the 12-18 year old girls with our church's youth program.  Last night I taught the twelve-year olds how to make bread.  Hannah and I were talking about Halloween and it came up that I still wasn't sure what Kai would be.  She suggested he be a Scout and it just clicked.  I am so excited to create this costume for him--it's going to be perfect (and adorable, of course).  


Thank you, Hannah!



Saturday, October 16, 2010

Feat of Feet!!

video
The Boy is a walking ma-CHINE!  We got a walker yesterday at Shriners and he LOVES it! 

Thursday, October 14, 2010

Hope and Peace

A facebook friend of mine brought this blog to my attention.  I spent the last hour reading through it and, having been very touched, would like to share it:

http://patrickandashley.blogspot.com/


Tragic circumstance but inspiring message.

Wednesday, October 13, 2010

Imprisoned Trains and Inviting Staircases

A note about the video: I took this video using my laptop's webcam.  When I move the monitor it makes a really loud and obnoxious creaking sound.  Just FYI.
video
Kai got a train set for his birthday.  He calls it his "choo choos" and is obsessed with it.  He wakes up in the middle of the night calling, "Mom!  Mom!  Choo choos?  Mom!  Choo choos?"  His sisters also love it and since they tend to abscond with and monopolize his toys, the beloved train set is not allowed to leave Kai's room.


On his second birthday last week, Kai climbed the whole staircase for the very first time.  He was at the top before I discovered what he was doing (which was probably for the best because I'd have had an aneurysm if I'd seen him mid-staircase).  Now he climbs the stairs every chance he gets.  Thank heaven for baby gates.



Monday, October 4, 2010

Sunday, October 3, 2010

TWO YEARS OLD!

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Today marks the day when, two years ago, our son Kai was born.  He weighed 5 lbs 3 oz, measured 15 inches long and had a head full of dark hair offset by big, blue eyes.  Today he is 22 lbs, 25 inches tall.  He is the funniest little kid I've ever met and we just adore him.  He climbs all over every thing and every one and talks all day long.  He loves to get into my purse and eat my gum, he enjoys scaring me to death by climbing the stairs and window ledges, and he thinks it's hilarious to wander down the driveway to the street.  

Today, however, the only thing on his mind is his new train set, which he calls "choochoos".

To be continued...

Monday, September 20, 2010

Summer's over.  It started raining last week, so, true to my word, we're back.  We've had a busy, fun summer!  Updates will be coming (along with pictures and maybe a video or two!).

Tuesday, August 3, 2010

Summertime

I love summer.  Kai loves summer.  We're going outside to play. 

See ya!


P.S. We'll be back when it turns cold out and starts raining.

Friday, July 2, 2010

Broken Camera+Adorable Boy= Memories Lost

I just caught Kai climbing the stairs.  Climbing the stairs!  That is both terrifying and triumphant!! 

Tuesday, June 29, 2010

Today we picked strawberries.  Or rather, I picked, Kai ate.  It was FUN!  ...Now I'm just waiting for the diarrhea to start (Kai's, not mine). Proportionate to his body size, that kid ate WAY too many strawberries for his digestive tract.

Saturday, June 12, 2010

Friday, June 11, 2010

The day we tortured The Boy


Kai has pretty much the best physical therapist who ever walked the planet.  She is FANTASTIC (you know you are, Eileen) and we adore her.  She made arrangements for Kai to try out this power chair.  Kai was thrilled!  He loved it.  See?    .

Eventually we got him into the chair and, after about 20 minutes, he finally realized what that chair could do.  I took lots of video with my phone but I'm at a loss as far as how to transfer it to a format that will allow me to post it here.  I'm trying, though, I promise!  

Kai's driving theory is based on (and much resembles) the flight pattern of a bumblebee, which is to say, he zigs and then zags, lurches forward, then spins around, meanders to the left, then angles to the right.  I think the only direction he didn't go was straight forward.

 

Conversations with Kai

Following is a typical conversation I have with Kai every day around bedtime:

Me: Kai, let's go night-night.
Kai: No!
Me: Well, then, do you want a snack?
Kai: No!
Me: Do you want your juicey? (sippy cup)
Kai: Joosh.  Joosh.
Me: Here's your juice.  Where's your man-mimi?  OK.  Now are you ready to go night-night?
Kai: No!

We also often have this conversation:
Me: Kai, can you say, 'dada'?
Kai: No!
Me: Can you say, 'mama'?
Kai: No!
Me: Can you say, 'Ashy'? (big sister's name is Ashleigh)
Kai: No!
Me: Can you say, 'onomatopoeia'?
Kai: Eeeee.
Me: Can you say, 'Kai'?
Kai: No!

And this one is also classic:
Me: mooo
Kai: ooooo
Me: quack, quack, quack
Kai: wa, WA, WA (it gets progressively louder)
Me: arf! arf!
Kai: rar-rar-rar-rar
Me: (shrill horse whinnying noise)
Kai: Eeeeeeeeee! (incredibly shrill)
Me: Meow
Kai: ow


He does say mama, dada, and ash...but we've exploited that so much that he pretty much refuses to do it on demand.  Other words he knows: ball, owie, amen, thank you, juice, hi, hello, ta ta (as in 'goodbye'), ta-da, and all done.

Wednesday, May 26, 2010

Sometimes a boy just needs a quiet place (in this case, under the computer desk) to talk on the phone. Note the crossed feet. He does this all the time and it's so cute!


Pulling himself to a stand--this is new! He pulls himself to a stand with or without the boots on. This window ledge is perfect! The bottom stair is also popular--especially when sister is at the top calling to him to come up...

He's so little; it's precious to see him standing up. He's barely two feet tall (when they're born, most babies are about 20 inches and, within months measure over two feet in length). This is a huge accomplishment for him. Summer is coming and I'd love for him to be able to wander around outside. Scooting on his bum is great for indoor play, but outside it is completely useless.

Wednesday, May 19, 2010

Man Mimi

Before Kai, before John, there was me. And Ashleigh. And Hailey. And we were incredibly girly. When John joined up with us it became glaringly apparent just how girly we were. And now, three years later, we've acclimated John and Kai into it nicely.

For example:

For the girls and me, they're panties. For John and Kai, they're man-panties.

Nobody in our home "takes a wiz" or "pees". We all politely go potty.

The girls have their Mimis. Kai has his Man-mimi (or Manmi, as we sometimes abbreviate it). (Note: Mimi=blanket. It began when, at nine months old, Ashleigh dubbed her blanket "Mimi")

In fact, for anything feminine that needs to be masculinized, we usually just add "man" in front of it. Man-tutu. Man-crown. Man-doll (more commonly called 'action figure') Man-jewelry. Man-party. Man-camp.


But man-panties is my favorite. Every time I say it the girls and I can't help but giggle inside.

Tuesday, May 18, 2010

It's a Wonderful Life

All over the house there are special little places that fit only me.
Bottom shelf of the pantry, for example.
I get treats.




My sisters swing with me.


"Man Mimi" and I fit in my new toy box.



I can be reverent for family prayer.






Thursday, March 18, 2010

Roadtrip

Kai and I are heading to Utah next week. We will be driving (from Salem to Provo will take us about 14 hours). We are road warriors, that's for sure. We have family and friends in the area that we'll be visiting.

We're looking forward to meeing Grant Stone and Val Dean Dalling while we're there! If there is anyone else close by that would like to get together, let me know and we'll arrange something. I'll be in the Provo/Orem area Sunday March 21 through the 25th.

Tuesday, March 16, 2010

Sick Days

"Put down the camera and hold me, Mom!"
"Hmm...what should I order for lunch?"




"Look at me all comfy and nestled into the big-kid bed!"


One of the first days we were in the hospital. Kai was pretty sleepy and out-of-it.



Eatin' peaches.










One of the last days in the hospital. He was a much happier kid toward the end of our stay.






Bal-looooon!







Bath: check. Perfect post-bath coif: check.










Sunday, March 14, 2010

Kai was discharged from the hospital on the 10th. He was in the hospital a total of 10 days! Poor kid. I have pictures on my camera...which is still in the trunk along with his "get well" balloons and sundry blankets, toys, stroller and at least one sour sippy cup...

We're still doing breathing treatments (nebulizer with albuterol) every 4-6 hours, to keep his airways open. He's hardly coughing anymore. He only lost about 1/2 pound, but John and I think he looks thinner in his cheeks.

Thank you so much for all the well-wishes and prayers. We are so grateful to have so many good friends!!

Thursday, March 4, 2010

Kai is in the hospital

Kai has bronchiolitis (which is different from bronchitis). He's been sick since Saturday, and in the hospital since Tuesday. Because of the inflammation and mucous build-up AND because his lung capacity is smaller than average, he's having difficulty keeping his oxygen levels up on his own. He's stuck in the hospital until his oxygen levels improve. He'll most likely be in the hospital at least one more day, possibly longer.

Wednesday, February 17, 2010

A Woman's Week at the Gym

My aunt emailed this to me and I thought it was SO FUNNY I had to share:


Dear Diary,
For my birthday this year, I purchased a week of personal training at the local health club.
Although I am still in great shape since being a high school football cheerleader 43 years ago, I decided it would be a good idea to go ahead and give it a try.
I called the club and made my reservations with a personal trainer named Christo, who identified himself as a 26-year-old aerobics instructor and model for athletic clothing and swim wear.
Friends seemed pleased with my enthusiasm to get started! The club encouraged me to keep a diary to chart my progress.
________________________________
MONDAY:
Started my day at 6:00 a.m. Tough to get out of bed, but found it was well worth it when I arrived at the health club to find Christo waiting for me. He is something of a Greek god-- with blond hair, dancing eyes, and a dazzling white smile. Woo Hoo!!
Christo gave me a tour and showed me the machines.. I enjoyed watching the skillful way in which he conducted his aerobics class after my workout today. Very inspiring!
Christo was encouraging as I did my sit-ups, although my gut was already aching from holding it in the whole time he was around. This is going to be a FANTASTIC week!!
________________________________
TUESDAY:
I drank a whole pot of coffee, but I finally made it out the door. Christo made me lie on my back and push a heavy iron bar into the air then he put weights on it! My legs were a little wobbly on the treadmill, but I made the full mile. His rewarding smile made it all worthwhile. I feel GREAT! It's a whole new life for me.
_______________________________
WEDNESDAY:
The only way I can brush my teeth is by laying the toothbrush on the counter and moving my mouth back and forth over it. I believe I have a hernia in both pectorals. Driving was OK as long as I didn't try to steer or stop. I parked on top of a GEO in the club parking lot.
Christo was impatient with me, insisting that my screams bothered other club members.. His voice is a little too perky for that early in the morning and when he scolds, he gets this nasally whine that is VERY annoying.
My chest hurt when I got on the treadmill, so Christo put me on the stair monster. Why the hell would anyone invent a machine to simulate an activity rendered obsolete by elevators? Christo told me it would help me get in shape and enjoy life. He said some other crap too.
_______________________________
THURSDAY:
Butthole was waiting for me with his vampire-like teeth exposed as his thin, cruel lips were pulled back in a full snarl. I couldn't help being a half an hour late-- it took me that long to tie my shoes.
He took me to work out with dumbbells. When he was not looking, I ran and hid in the restroom. He sent some skinny witch to find me.
Then, as punishment, he put me on the rowing machine-- which I sank.
_________________________________
FRIDAY:
I hate that demon Christo more than any human being has ever hated any other human being in the history of the world. Stupid, skinny, anemic, anorexic, little aerobic instructor. If there was a part of my body I could move without unbearable pain, I would beat him with it.
Christo wanted me to work on my triceps I don't have any triceps! And if you don't want dents in the floor, don't hand me the darn barbells or anything that weighs more than a sandwich.
The treadmill flung me off and I landed on a health and nutrition teacher. Why couldn't it have been someone softer, like the drama coach or the choir director?
________________________________
SATURDAY:
Satan left a message on my answering machine in his grating, shrilly voice wondering why I did not show up today. Just hearing his voice made me want to smash the machine with my planner; however, I lacked the strength to even use the TV remote and ended up catching eleven straight hours of the Weather Channel..
________________________________
SUNDAY:
I'm having the Church van pick me up for services today so I can go and thank GOD that this week is over. I will also pray that next year my husband will choose a gift for me that is fun-- like a root canal or a hysterectomy. I still say if God had wanted me to bend over, he would have sprinkled the floor with diamonds!!!

Tuesday, February 9, 2010

Update on Kai

Turns out Kai didn't have bronchiolitis; he had developed pneumonia! He's doing better now and due to the inhaler and a big shot of antibiotics he was able to stay out of the hospital. His fever is gone, he can breathe more easily, he coughs less and less every day and he seems generally stronger. What a fighter!

Thank you everyone for your well-wishes and prayers on his behalf!

Today we have an appointment up at Shriners; Kai will be getting his new AFOs. He's well enough now that I think it'd be OK to take him. Pictures soon!

Friday, February 5, 2010

Bronchiolitis

Kai has been sick for almost a week. It started on Sunday with a fever, then the coughing started, and every day the cough got worse and the fever didn't go away. Yesterday I took Kai in to see his pediatrician who listened to his lungs then ordered up an x-ray. She said she thought he had bronchiolitis, but wanted Kai to have an x-ray to rule out pneumonia. The x-rays came back clear so she wrote a prescription for albuterol and sent us home with instructions to come back today. We did.
Today he's not much better than he was yesterday. He still has a fever but it's not as high as it has been. His breathing is still raspy and labored. The pediatrician explained that she was considering admitting Kai to the hospital based on three criteria: 1. Oxygen levels (Kai's were good) 2. Hydration (Kai has NO appetite and is barely drinking anything) and 3. Difficulty breathing (Kai was struggling with this one too). Since two of the three were borderline, she decided not to admit him, but that I should bring him back in tomorrow for another follow-up.

Right now he's sleeping but every so often he wakes up to cough. He's been laying on the carpte like this all week. He just doesn't have the energy to scoot around.

He fell asleep on the carpet and I couldn't resist getting a picture of his cute little feet.

Bless his heart! I feel so bad for him. Hopefully his health will continue to improve. The doctor also said that this might be the beginnings of asthma. I hope not! He detests his inhaler.
What a mess of cords! There's the Wii, John's Xbox 360, surround sound and five speakers, DVD player, and Dish receiver. I HATE this corner of our living room. We got a big screen TV that doesn't fit in our entertainment center. So until we get a new entertainment center, the TV is simply sitting on our entry-way table in the corner of our living room. Kai LOVES this corner of the living room for exactly the reason that I hate it: the cords. ...and Daddy's controller.


I am the Den Mother to five Cub Scouts (Wolf pack--8 year olds). We recently learned about recycling and for our activity we made "Re-bots" (Recycle+Robots). This was the one I made to show as an example.



OK, it's more like a monster than a robot, but re-bot sounds much better than any combination of recycle and monster that I could think of: re-ster? moncycle? recy-ster?






Tuesday, January 26, 2010

Welcome!

Meet Guilherme. Born in Brazil on November 28, 2009, just over 7 lbs, and 16 inches long. What a handsome boy!




Casts on his legs; reminds me so much of Kai when he was a newborn.






Proud parents Cassiano and Andreia
Welcome, Cassiano, Andreia and little Guilherme! I am so glad you found our little blogging community!
See Guilherme's blog here






Saturday, January 23, 2010

Kai stole my apple and wouldn't let go of it.
Apples are his new favorite snack/toy/weapon.
He's not such a fan of the skin, however. He spits it out
(that's a shred of apple peel on his bottom lip)



In other news, Kai's MRI results were positive and he will not be having surgery of any kind in the foreseeable future, neither on his feet nor his spine. At our last Shriners visit, Dr. Sussman explained that he'd been in contact with Finnish specialists (in Finland, the prevalence of DD is much higher than here in the US. These doctors, therefore, are much more experienced at treating DD kids' orthopedic and spinal issues). These doctors explained that no matter how bad their spinal issues, neck surgery seemed to always make matters worse. As for feet, DD kids don't have average club-feet; after a tenotomy (which releases the tension and elongates the achilles tendon allowing for increased plantar mobility), the feet tend to regress back to their clubbed position with 6 months to a year. In essence, it doesn't really help.
So! Kai was fitted for a new pair of AFOs (Ankle-Foot Orthotics) that will be ready February 9. In these AFOs Kai will be able to stand. They will be built up on the bottom to compensate for his feet; the bottoms of the AFOs will stand flat on the floor.

Tuesday, January 12, 2010

Recent Pics

I don't know what this face was but it was so darn cute. I snapped it as soon as I saw it, which is why the angle isn't the greatest. What a funny boy.

Kai's "watching post" where he waits and watches to see if Daddy is home yet.

Sometimes he'll take little toys and play with them on the window ledge. It's so cute.