Sunday, October 24, 2010

PRS picture, nerve damage

I dont know why this bothered me but while researching PRS I found a profile picture of a baby with PRS. It was an illustration, most likely for a medical powerpoint or textbook. I don't know why but it really made me angry. I know the information was in English but it kept referencing India, and the doctor made mention that you can tell a PRS baby because the speech is so nasal. I found that a little presumptive but for some reason less irritating than the picture. Its not that the picture wasn't accurate. It was entirely accurate. It wasn't a real life photograph of a baby. It wasn't even terribly detailed. But when I saw it, when I looked at it, it angered me. Maybe its projection of my anger about the situation since Im not really all that angry about Llewellyn having PRS. I wasn't even mad at the doctor who told me not to worry about her recessed jaw. So maybe its just seeing the problem in black and white without a face or child attached to it was easier for me to unleash my rage at my "less than perfect" angel. For the record, I do think she's perfect. Sometimes I don't think its fair that my gorgeous loving laughing little darling has to go thru something so painful, but then I remember that she's special for a reason, and I was chosen as her mother for a special reason. We both have much to teach and learn to and from each other.

Now, on to the nerve damage.

The geneticist said she thought there was nerve damage on the left side of Llewellyn's face. The pediatrician said not to worry about it unless we could see that her eyes were no longer symmetrical or the bridge under her nose flattened out. I still thought I noticed the nerve damage, even tho some times she would only use the left side of her face. Then I noticed her eyes were no longer symmetrical. I said nothing, hoping I was wrong or it would get better. I noticed in certain light it looked like her left eye was darker blue than her right. In other light they looked exactly the same. We took pictures of Llewellyn the other day and my husband was shocked and saddened that it was readily apparent that the left side of her face was not the same as the right side in every photograph. So now we need to make a visit to... someone. I emailed the geneticist and will call the pediatrician tomorrow to get his take on it. Ive done some online research which tells me there's not really a cure or even treatment for it. I haven't told my husband as that would likely make his stress about it worse.

1 comment:

  1. Totally get it about the picture. What used to get me riled (still does) are the generalizations about PRS kids, as in "all PRS are blah blah blah". I hate that! Chin up, she'll be fine and so will you -- and I say that having been exactly where you are.

    Angela (Kate's mom)