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!