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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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.
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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!!
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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.
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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.
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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.
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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?
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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..
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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?