My Pretty Girl

I've wanted to write a few posts about what it is to be Alicia's mother at one year out (of the hospital). What's on my mind at the moment was the rushed appointment this afternoon with the ENT in which it was pretty much decided that we'll be doing surgery a month from now. A rushed appointment that decided surgery. Damn it. What about scarring? Is this the only treatment? Is it in the lymph? Could she be factor V leiden positive like her mother; could that have caused it? If so, could it affect surgery?

Okay, I'll back up. I suppose I'm a bit rattled about this. Rattling disturbs my coherency.

We first went to the ENT in October to get his opinion on a lump in Alicia's cheek that looked like a bruise. I had also noticed two other tiny discolored spots on Alicia's head. At the time he was certain that the larger one was a pilomatrixoma, come back in six months. Oh and by the way she's got fluid in her ears, let's pop her in for a hearing test--oops, she failed that. Shortly after that appointment, I noticed another lump in Alicia's breast, not yet discolored. Two weeks ago, while waiting in a doctor's office I noticed that one was now discolored, oh and there's one more. Today while I was showing the ENT the five, I noticed one more.

I'm a bit proud, and yet annoyed, that I'm the only person who's ever found these things on Alicia. We're up to six lumps now and Alicia has more doctor's appointments than anyone I know. Through all of this medical stuff with Alicia, I've come to understand that so very much of the medical care a child receives depends on the primary caregivers making the calls, asking the right questions, and noticing the problems in the first place. This is a perfect example of that. The next level of that is that once you are hooked into at least one specialist, I think you are more likely to receive attention on other issues as well. I first asked the pulmonologist about these lumps. He didn't think it was an issue, but he called his friend anyway, the guy that I saw today.

Yes, yes, okay. Today. A pilomatrixoma is attached to the underside of the skin. The lump in Alicia's breast is deeper. Since there are six lumps, that we've found, they are likely the same thing, thus, not likely pilomatrixomas. It seems that a pilomatrixoma isn't the kind of thing you have six of. It's an issue with a hair folicle. His next certainty is that they are venous malformations. I'll let Josh give you a link to it, I'm still getting my mind around what it is.

They aren't likely dangerous. They get bigger as Alicia grows. They can get really ugly (click at own risk). Once they are taken out, they can produce nasty scarring. I think they can grow back, but I'm unclear on this point. So far, we're talking about the one on her cheek, one on her head, one behind her ear, and three on her trunk. They were all on the same side of her body until I saw number six today. The doctor said it was probably just coincidence. I said, yeah, five out of five. Coincidence, sure. But number six struck that down.

So in a day or two we'll get a CT scan scheduled. It'll happen most likely in the next week. Then I am to wait five days and then call the doc for his thoughts. If he's right, we'll schedule surgery about a month out. He didn't say why he wants to do it right away.

But Alicia's ears are the other thing. Alicia's cranial chiropractor said that we'll know within a month if we're going to see any change. If it'll help Alicia's ears, we'll do tubes in the same surgery.

And that's today's news. Alicia continues to bang her head. She does it out of pain, we think. But she also does it when we put her down for a nap, because it brings us into the room. Alicia's special ed teacher is going to bring a soft-sided helmet by in the morning. Once again, access to specialists has its privileges. We'll put it on if she's banging her head at nap time just to soothe our nerves a little. Today, actually, there was no banging at sleep times. Just part of how our day played out. We'll see about tomorrow.

Oh, and our house? There are now seven townhouses for sale on our street. Seven. We had an open house this weekend with three buyers looking. All positive feedback, but no purchase agreement yet. C'est la vie.

Helpful links provided by Josh. Unhelpful ones too.