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 14, 2009
Friday, December 4, 2009
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
Monday, November 2, 2009
Big sister Ashleigh was a bride.
Friday, October 30, 2009
Wednesday, October 28, 2009
Monday, October 26, 2009
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
(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
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.
Tuesday, October 6, 2009
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
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
Wednesday, September 16, 2009
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
-Eating "big kid" food
-Rejecting baby food
-Laughing at his silly big sisters
-Splashing in the bathtub
-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
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.
Monday, August 3, 2009
Tuesday, July 28, 2009
Friday, July 24, 2009
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
Thursday, July 16, 2009
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
Friday, July 3, 2009
Tuesday, June 23, 2009
Wednesday, June 17, 2009
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
Wednesday, May 27, 2009
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.