The good, the bad, and the ugly

The last three days have been INTENSE. So much so that this is the first chance I have to turn on my PC in 2 days! Between cooking, cleaning, shopping, feeding Nathan, taking care of him, entertaining him, doctors appointments, phone calls, more appointments – life’s been BUSY!

Now, let me move forward with the good, the bad and the ugly.


THE DYNAVOX IS HERE! Unfortunately it doesn’t have the EYEMAX so we have to start working with switch scanning and eye gaze. But something is something and I am stoked!

Along with the good is the fact that we started Nathan’s augmentative communication plan today. I already wrote another post about this and will publish it tomorrow.


We went to the UCLA cerebral palsy clinic today and saw a physiatrist, orthopedist, and physical therapist. They X-rayed Nathan’s hips and, unfortunately, the results were NOT GOOD. His hips are starting to come out of the socket. A normal hip is at a range of up to 20% subluxation.

2 years ago during Nathan’s last appointment with the orthopedist, his hips were at 20% and 22%. Today both hips are at 35%. Not good.

The recommendations: needs intervention. Time to do SOMETHING. The orthopedist wants us to do PERCS, or serial casting, or a couple of other things that I didn’t even register. The physiatrist wants to start shooting him up with botox. The physical therapist wants us to do both.


Yikes! For the last 3 years Nathan has been pretty much surgery / medical intervention free. I know we’ve been spoiled. And now we have to face what so many other families of kids with CP have to deal with.

The truth is – I am not totally freaking out. I am keeping my cool. But my cool is not too cold. It’s on the verge of heating up and I could easily lose it.

The doctor told me I had to decide what to do. Not that I’d let him decide anyways. So now I need some kind of plan of action.

I was already considering doing PERCS in New Jersey with Dr. Nuzzo. I think this will help Nathan in many ways. But if we do this surgery it would cost us at least $15,000 out of pocket because we’d have to travel out of state. If we do it in California, it would cost significantly less BUT we’d run the risk of someone messing up the procedure, which seems to happen often. Since Nuzzo invented or perfected the procedure, I’ve heard over and over that he’s the best one to do it.

Our budget for therapies and interventions is very rapidly dwindling so if we were to go with PERCS, we’d have to say bye bye to a lot of things we were planning on doing 🙁

The idea of serial casting and botox doesn’t appeal to me at all.

Any moms out there have experience with this type of thing? Would love any feedback possible!!!!! THANK YOU!


  1. This Mom has lots of experience with the treatments you mention:

  2. oh no – call me!
    We just met with Suzy’s physiatrist last Monday, and had an exray done on Tuesday of spine and hips, and got our results yesterday!!!!!!!!!!!!!!!
    Shit – We’re at a 40% sub. in the left hip, all good in the right, and a 13% curve in the spine!!!!!!!!

    Another form of ‘sisterhood’ for you and me.


  3. Well, I just want to say I’m not sure what part of NJ Dr. Nuzzo is at, but if it is South Jersey we aren’t too far from there and you could have a place to stay to help defray some costs.

    Loved seeing Nathan read his book 🙂 Emma is a huge lover of books.

    We don’t see a physiatrist. Should we? Just wondering what that specialist adds to the picture.

  4. ABR helps with this. Go to the ABR yahoo site and post. Christopher has not had any problems yet. I am going to get an x-ray done soon to check his hips.

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