Thursday, March 12, 2009

Small steps......sorry this is a long one!!!

Well, we had our opthamology and neurology appointments this week. We are all exhausted!!! It still amazes me how tolerant and patient Haley is with strangers. She was a perfect angel. Anyway, we went to the opthamologist (who came highly recommended because he is a neuro opthamologist) Tuesday. He did an eye exam, tested her vision (don't ask me how they test vison in a non-verbal baby!), dilated her eyes to look at the back of her eyes. He said her vision is fine, and her retina (the back of her eye), blood vessels, and nerves all looked good. He was able to give us the name of what the head shake, looking out of the corners of the eye thing is. It's called oculomotor apraxia (say that three times fast!). This is an easy to understand definition I found:

What is Ocular Motor Apraxia?

'Fast' eye movements are called saccades. We use saccade eye movements to quickly change the direction that our eyes are looking. This helps us look at something that has suddenly moved near to us. This is so the eyes can focus sharply on an object. The eyes can then give clear signals to the brain to make clear vision. It also helps us quickly move our eyes across a page of writing while reading. Saccades are important in many other visual tasks. Ocular Motor Apraxia is a condition where a child has a breakdown (failure) in starting (initiating) fast eye movements.

How is Ocular Motor Apraxia diagnosed and how does it affect the way a child sees?

Ocular Motor Apraxia is often diagnosed by doctors asking parents questions about their child. Children often 'thrust' their head from side to side to change the direction they are looking. 'Head Thrusts' are a typical movement that helps a child overcome their difficulty in moving their eyes quickly. Children may also blink to start a fast eye movement.

Now before you go and Google oculomotor apraxia, understand that this is not a diagnosis, just the name of a symptom. There is a lot of information out on the web, some of it is kinda scary. But do realize that you never know what information on the web is correct, and you cannot self diagnose yourself based on what you find on the web. So I don't want to be getting phone calls worried that she has this or that. We don't know until all of the testing is done. I'm not wasting my time researching this quite yet, because I don't have all the facts......I don't want you to waste your time either, its a dead end when you dont have all the pieces of the puzzle.

Wednesday we went to the neurologist, Dr Nelson at Presbyterian Hospital in Charlotte. I really liked this doctor, and so did Haley. He seemed to be pretty positive about Haley's future since she is making progress and she is so social and interactive. He didn't feel like there was anything urgent to worry about, and didn't think this was a degenerative nerve problem. He said that sometime they never find a cause to the oculomotor apraxia, that some kids are born with it and it usually goes away on its own. But this is also a symptom of other disorders, so we had a bunch of labs drawn, and are going to have an MRI done some time within the next week or two.

She, of course, did not like having her blood drawn. But she quickly forgot that it even happened within a few minutes. For the MRI we will have to go to the Children's Hospital at Presby and they will have to sedate her because you have to be completely still for 30 minutes or so. She won't be completely put to sleep, but an anestheiologist will be there with her.

So we really don't know much more than we did before we went to the doctors, except that her head and eye movements do have a name. I will keep you posted on any news that comes along, but I think for now it is just a wait and see game.

I also want to report on what progress she is making. She can come to a sitting and standing position while holding our hands. She can stand with her back on a wall for several minutes at a time, and will sometimes push her back and hips away from the wall (which means she is starting to balance while standing) She is also starting to catch her self a little bit when she looses her balance. These are pretty subtle and small changes, but she is making progress which makes us feel better.

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