Monday, November 11, 2013

Three Weeks Post-Op Progress



We sent another round of photos to the surgeon this morning. His response was that we should keep turning, and that she looks good. He said that he thinks her "activation phase" will soon be over, which is a great relief. I have to admit that I am still not seeing the progress that I hoped to see, especially from this perspective. If anything, her skull looks wider than it looks "reshaped" and the front still does not look balanced to me. The surgeon said we were going to overcorrect the right side, so I expected at this point to see her forehead looking more even from the top. Of course, this is not really a big deal if her skull is expanding in some spot at least enough to allow her brain the space it needs to grow. In the grand scheme of things, this from-the-top perspective is one that no one usually has for other people, and unless she is going to sell shoes or work in sewers, no one is really going to be looking at her from this angle when she is an adult!

My lingering fear, though, is that we are running out of distractor! We have moved it 22.5 mm so far, which is .88 inches. The part sticking out of her head is getting shorter, and we are just about to reach the point on the distractor where the first flared area is going to go under her skin. I am hoping that this won't cause additional pain for her when we turn the distractor because the hole in her skin will have to get bigger, but the surgeon assured us that we should continue to turn beyond this flared area. He also assured us that we will probably stop turning it before the whole thing is sub-cutaneous. Here's a photo of what I mean:


Of course, we are just going to keep doing what the surgeon tells us to do, but I can't help but worry at the same time. Weeks ago, I was counting the days until we could go back to Philadelphia to have this external part taken out, but now it has gotten so short that it's really not in the way, and when she is wearing her famous beret it's not even noticeable at all. I suppose we are looking forward to having the entry point to her head removed and the external part removed so that the hole will heal. That will mean that we can take her back to day care and out in the world again, and I'm sure she will appreciate a return to normal life as well. But, as evidenced by the photo below, she is doing very well, and still has no idea that any of this is going on inside her head!

Leah, following her first taste of solid food...

1 comment:

  1. Hi your daughter Leah is beautiful. I have been following your blog because my daughter Madelyn had the same surgery performed by Dr. Taylor on Oct 28 so I can totally relate. Madelyn is just about 5 months old. Would love to chat with you about it. Feel free to email me. Amo610@gmail.com

    ReplyDelete