Dakota's KC appt.

If you read my blog posts, you might remember me talking about having a meeting with Dakota's doctor, and his school during the fall. The school, especially, has been worried with Dakota's muscle weakness and thought we should see another Neurologist to get a second opinion. Well, that appointment was today. Yesterday, I picked up a paper from Dakota's doctors office to take to the appointment with us. It was something his occupational therapist wrote up and gave to Dr. Watson with her specific concerns about Dakota. After I picked it up, I read it and sort of freaked out. The very last sentence says, “Specifically, we are concerned that he shows some characteristics of the early stages of muscular dystrophy and we are looking for diagnostic testing to confirm or alleviate these concerns”. That particular concern was never once mentioned to me. On one hand, I'm sort of annoyed at everyone keeping me in the dark on this. I mean, I had a meeting with several people and that was never brought up. On the other hand, I am glad that it wasn't brought up because I would have been worrying and stressing this entire time.

So anyway, I was told that this appointment was at north KC Children's Mercy location. Yesterday when a nurse called and left a message on my phone to remind me of the appt. - she said the appointment was at the main Children's Mercy in downtown Kansas City. We get down there, and are early for once in our lives. We finally find a place to park in the parking garage and get all the way up to the 4^th floor to check in. They say to me, “Sorry, but Dr. Yuen is at our North KC location today”. Ugh..... The lady told me that if we get there within 15 minutes of our appointment time, that they wouldn't cancel it. Luckily, John is used to driving in Kansas City, and we made it to the other location on time. The doctor asked us lots of questions and did lots of tests to check Dakota's strength. She said that everything seemed ok, but she noted that the letter written by the occupational therapist said that it doesn't happen all the time with Dakota. Since it's not a constant thing, it's hard for her to see what's going on. She decided to do some blood work to check his muscle enzymes. At the very least, if his enzymes are normal, it will give us a baseline of what is “normal” for Dakota. Then, on a day where he is weaker than usual, we can have blood work taken here in Maryville to check his enzymes to see if there are any major changes. She also mentioned having an MRI done of his muscles in his upper extremity. We are pretty sure that his last MRI was only of his brain. But anyway, I suppose we will wait for the bloodwork and go from there. It should take 2-3 days to get the results.

It's just so hard to explain to others what is going on with Dakota. Half the time, he is wrestling with John and he is really pretty strong. The other part of the time, he complains that it hurts his arms/hand muscles to write. And his legs get so tired so easily from walking. He also walks really weird sometimes. His teachers have been mentioning their concern of his fine motor skills since he was in preschool. The neurologist said that the fine motor things might not necessarily be muscle strength, but it could be from his signals from the brain getting his muscles to do what they need to. So anyway, once again we have no idea what is going on and no idea if we should be worried. There is something definitely “off” about him that nobody can seem to pinpoint. It might all be from a mild from of Autism. Nothing has ever been confirmed. Of course, even if the Neurologist says that she thinks Dakota is fine – I'm always going to have the muscular dystrophy thing weighing on the back of my mind.