A little piece of heaven

I made a mindmap of the pages we have on Nathan’s dynavox, and how I have them categorized. I thought I would share this here to see if anyone has suggestions on how to categorize this better? Or suggestions on new pages to add?

I know it’s hard to understand this without seeing it – one of these days i will try to take a screen shot of a “tour” of all of the pages so I can share here how it works and what they look like. But for now I thought I could share what I have and see if others have ideas/suggestions.

Ps click on the image to see it better on picasa so you can make it bigger.

I took Nathan to see the orthopedist today. According to the surgeon, Nathan’s hips had gotten significantly worse since he first saw him, and we needed to talk about surgery. He told me that Nathan’s left hip was at about 42% subluxation, and the right was at about 35%. He felt that at this point the best alternative was adductor and hamstring release using percutaneous incisions. He explained to me the risks and benefits of the surgery, told me that even with this surgery it was possible the hips would still come out of the socket, and scheduled Nathan for surgery a month from now.

I have to admit that although the news was bad, I wasn’t terribly upset by this. I guess in the last few months my views have changed and I am most interested in Nathan’s quality of life. If a minimally invasive surgery has the potential to give him some release from pain and increase in function, then I feel happy and willing to move forward. Until now I have been completely opposed to the thought of surgeries or Western medications. But now I am not, I just want him to feel happy and comfortable. I know how uncomfortable tight adductors can be because I’ve been dealing with this myself for the last few months. It’s terrible! So if there is a quick and easy fix for Nathan, then I’m all for it.

Here’s the curve ball.

Before I wrote this post I went back and looked through old posts where I wrote about Nathan’s hips. I realized that the change hadn’t been so significant after all! When he was first seen by the UCLA orthopedist, he was found to be at 35% subluxation of both hips. Six months later at Children’s Hospital Los Angeles the right was at about the same degree of subluxation, but the left had progressed to 40%. Today, the right was at 35% still (no change in 1 year!), and the left at 43%. This doesn’t seem so alarming to me! In fact it shows that what we are doing is having a decent effect as the right hasn’t changed and the left is not much worse.

So now I have a tough choice to make. Keep doing what we’re doing and hope that he doesn’t get worse or that the progression continues to be slow, or simply skip to the “end game” and go for the PERCS surgery?

I found a really good explanation of the surgery here:

Adductor Lengthening / Hip Muscle Release

Already from reading this information I am less comfortable with the procedure. When the doctor described it, I thought it would involve cutting a portion of the muscle, not all of it. I don’t know how I feel about them completely cutting the adductor?

Has anybody had experience with this procedure? Any thoughts/suggestions would be greatly greatly appreciated!!!

It’s raining cats and dogs at our house. Our pool flooded over, the wind is blowing, and we are huddled at home. Cuddled together, as if we were floating on a boat in the middle of the ocean, staring out at the wind and water as it blows all around us. The peace is punctuated by Izzy’s loud screams and Nathan’s laughter. She’s found her voice and loves to test its limits. And Nathan…he just adores watching her. She’s become his almost favorite source for entertainment. Behind the TV, of course.

We huddle and cuddle and relish this little family of ours…wondering, how, oh how, did we get so lucky?