Diagnosis Kai 101

In our week of travels we realized how many people read my blog and keep up with everything that is happening with me, but some of you might now know about the "medical" part of my life so we thought we'd share a little bit about that.

On Saturday and Sunday Mommy went to a conference in Chicago about Dystonia, of which I am diagnosed. I am also diagnosed with cerebral palsy and a visual impairment. So here is a short bit about each of these:

Dystonia is a syndrome of sustained muscle contractions causing twisting, repetitive movements and abnormal posturing. You can have dystonia in one part of your body (like writer's cramp) or all over. Dystonia can be genetic (primary) or as symptoms of some other condition or trauma (secondary). I have secondary dystonia and it mostly affects my mouth/jaw and neck- although it affects my whole body when I try to grab something or move. It is very frustrating as you might imagine and keeps me from being able to roll over, crawl or hold things. I take two medicines to help me with this, but they are not perfect and they make me feel bad sometimes (that's why I'm so irritable), but hopefully we will get to a point where they work well and I don't have side effects. Some types of dystonia get worse over time. If you want to learn more about dystonia you can go to http://www.dystonia-foundation.org. Here is a picture that shows how the dystonia effects me. You can see that my arms go straight and my head gets pulled to the right. Dystonia is why my smile is so big too!


Cerebral Palsy is a neurological disorder that permanently affects body movement and muscle coordination but won't worsen over time. Even though cerebral palsy affects muscle movement, it isn’t caused by problems in the muscles or nerves. It is caused by abnormalities in parts of the brain that control muscle movements. This also makes it hard for me to move- sometimes it's hard to know what is making it harder for me- dystonia or CP- either way moving is pretty difficult for me! The CP makes it difficult to control my head and I often have tight and spastic muscles. Some people might only have CP that affects a small part of their body, but I have quadrapelgia- which means all 4 limbs. Here is a picture of how CP effects me. You can see that my fingers curl in so it is hard for me to use them.


My visual impairment is called Cortical Visual Impairment or CVI. This means my eyes work fine but the connection to my brain makes it difficult for me to process what I see. Bright lights bother me and I can see things better far away. I don't see detail very well but I love watching things move! In fact I am the happiest when I am being moved around- in a stroller or carried.

I have a seizure disorder too but I haven't had any in over a year- yeah!

So we hope we didn't depress anyone too much, but we felt it was important to share all of my "labels" so people understand what I am up against. So it's probably a good idea to not ask my parents if I can roll, crawl, walk, talk- if any of those things happen believe me EVERYONE will know!

On to Illinois...

We traveled from Iowa to Illinois on Monday and was able to see my Great Grandma Kohler from Florida before she went home- except we forgot to take pictures.

I spent the week with Grandma, Grandpa, and all the neighbor kids who come to visit me every day. Here are some pics of my best Illinois friends: Alyssa, Jake and Brendan.




Here is Alyssa feeding me a bottle- she is such a good babysitter.


We had lunch with my other Great Grandma Carney and my Great Uncles. Great Grandma loved playing with me.



I got to see my mom's cousins Margaret and Noah, along with Noah's daughter Isabel (I think she's my first cousin once removed- but not certain how all that works). We didn't get any pictures because I was so cranky the whole time! Even though everyone tried to carry me around- I think everyone felt bad for mommy. But of course on the way home I was a perfect angel!

New friends

After the fair some of my new friends came over to the campground to go swimming. Mommy's friends Andrea and Jason brought their kids Keaton and Alaina all the way from Minnesota. Keaton and I really liked the pool, but Alaina was too little still.


On Sunday night we stayed over at Mommy's friends Amy and Andy's house. They have kids too, Cael and Drew. Cael was great at entertaining me.

Hello Iowa!

The kitchen was too crazy so Mommy and I are on another adventure- poor Daddy has to stay home and work. We took two airplanes to Des Moines, IA to meet up with Grandma and Grandpa and Mommy's friends. The lady on the airplane said that I was the best baby she's ever sat next to- Mommy said no one would every believe that! We got to camp in the motor home all weekend and we got to meet lots of new friends. We also went to the Iowa State Fair- and boy was it hot! Grandma put a fan on my stroller and sometimes sprayed me with a water bottle to keep me cool. Here is what we did at the fair:


As soon as we got there I had to eat!

I got to go on the merry-go-round twice! I think mommy liked it more than me.


I saw a giant horse- he was a little scary so we didn't get too close!


We got to play in a giant "corn-box". When we went home there were still kernels falling out of my pants.

The fair's biggest boar weighed over 1400 lbs! I don't think he could walk very well.

I tried a funnel cake, but it was about time for me to go home so I didn't enjoy it very much.

New "pet"

We finally came home from our trip so mommy could go back to work. Our house is still crazy and we do the dishes in the bathroom sink! Daddy works really hard after work every night to get the kitchen done. Every day I go to my nurse, Donna's house since we can't really be at our house.

When we got home there was a package for me. My grandma Susan sent me a new pet! It is a little Corgi that wags his tail, wiggles his ears, pants, and barks- just like a real dog! I think he's pretty cool.



Maybe someday I can get a real pet. Mommy says not until we have a bigger house!

Last Lessons...

All summer we forgot to take pictures of me getting my lessons, which was the biggest part of our adventure. Here are some pics of me with my practitioner, Sylvia, on our last day together. Sophia, Sylvia's daughter, was there to to keep me entertained.

Home Sweet...Home?

We finally got to come home on Wednesday night. We knew it would be crazy since our kitchen is a little behind schedule. Daddy has been working super hard to get everything done lickety-split! Mommy has been doing dishes in the bathroom sink and we have to eat in Mommy and Daddy's bedroom if it's too cold outside! Tonight we had dinner outside and celebrated my 21st month birthday! I even got some cake!


Our backyard looks like we're the Clampets! Daddy had to tear out lots of cabinets and drywall- even the kitchen sink!

Entertainment- Kai Style

Sometimes I get a little fussy during mealtimes, so Mommy and Daddy are always trying to think of ways to entertain me. Daddy is good at singing songs and jumping around to make me laugh. Mommy sings lots of songs too (although not very well). Mommy also has started doing a game called "object of the day." She chooses an object that we look at during mealtimes. She tells me the properties of the object and I get to feel it and sometimes put it in my mouth. We see if makes sounds and we learn about what it can do. Sometimes none of that works so Mommy has to get creative- bubbles work sometimes, but the other day she made some really fun towers with our food!

Aunt Krissy's Visit

My Aunt Krissy came to visit us last weekend. It was quite a long trip for such a short weekend! We are so glad she came! On Friday we drove up to the little town of Elk to visit our friend Kristi. We spent the day walking around Elk, having lunch, and wrapping presents! On Saturday I got to stay up late while Mommy, Krissy and Paula drank some wine!


On Saturday I had 3 lessons, but in between we had some adventures. We went for a walk and to the Twofish Baking Company. Then we took a long nap. I spent a few hours with Paula and Izzy while Mommy and Auntie Krissy went out to dinner.

Sunday was the most fun of all. We started by going to see The Sea Ranch Chapel. It is the most unique building I've ever seen, look!

After my first lesson we went to Gualala to look at the shops, then we went to my next lesson. For lunch, we had a picnic at the Anapolis Winery- right under an apple tree!