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.
Monday, December 20, 2010
Saturday, December 11, 2010
Friday, December 10, 2010
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
Friday, November 19, 2010
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, October 28, 2010
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
Thursday, October 14, 2010
Wednesday, October 13, 2010
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.
Sunday, October 3, 2010
Today, however, the only thing on his mind is his new train set, which he calls "choochoos".
To be continued...
Friday, September 24, 2010
Monday, September 20, 2010
Tuesday, August 3, 2010
Friday, July 2, 2010
Tuesday, June 29, 2010
Friday, June 11, 2010
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!
Me: Kai, let's go night-night.
Me: Well, then, do you want a snack?
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?
We also often have this conversation:
Me: Kai, can you say, 'dada'?
Me: Can you say, 'mama'?
Me: Can you say, 'Ashy'? (big sister's name is Ashleigh)
Me: Can you say, 'onomatopoeia'?
Me: Can you say, 'Kai'?
And this one is also classic:
Me: quack, quack, quack
Kai: wa, WA, WA (it gets progressively louder)
Me: arf! arf!
Me: (shrill horse whinnying noise)
Kai: Eeeeeeeeee! (incredibly shrill)
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
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
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
Thursday, March 18, 2010
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
"Look at me all comfy and nestled into the big-kid bed!"
Sunday, March 14, 2010
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
Wednesday, February 17, 2010
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.
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!!
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.
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.
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.
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?
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..
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
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
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.
Tuesday, January 26, 2010
Casts on his legs; reminds me so much of Kai when he was a newborn.
Saturday, January 23, 2010
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.
Tuesday, January 12, 2010
Kai's "watching post" where he waits and watches to see if Daddy is home yet.