A little piece of heaven

A couple of days ago we saw Ronna, the lady who will be working with us on speech therapy. She evaluated Nathan by watching how he communicates, by using some of the switches we already have, and getting a sense for what he can and can’t do. She was excited to see how eager he is to learn to communicate!

Our plan is for her to come every 2 weeks and give us guidance/homework for us to work on. Then we can build on each appointment until we get Nathan to a point of functional communication. Here is step 1 for Nathan (from Ronna’s notes to us):

I’m going to start with the suggestion we spoke about, using the 2-message talker for yes/no.

(This switch allows you to record a message, and when the child hits the switch, the pre-recorded message plays. In this case, we would record yes on one side, and no on the other side).

It is a skill he will always need, the most powerful communication tool someone can have really. Whether he uses the talker or his head movement and smile.

So, with the 2-message talker- The ideal is to get a wheelchair mount so you can add it to his wheelchair.

Until you get the mount, you can tape it in one location so it is steady, where he can get to it. Seems like slightly above his lap to the right when seated in his chair. And put the “yes/no” words with maybe a happy face and sad face, or any other symbols you feel may represent it to him. Then every day ask him maybe 5 questions and mark down his answer. Here is a sample:

1. Is this Daddy ? (with Dad standing in front of him)
2. Is this Mommy ?
3. Is this a book ?
4. Do we eat books ?
5. Is the doggy big ?

1. Is your name Bob ?
2. Are you a boy ?
3. Is it sunny outside ?
4. Did we go in the car today ?
5. Do you sleep in the bathtub ?

We will work on this over the next couple of weeks, and then she will evaluate him in 2 weeks.

It seems that a lot of people were interested in learning more about this, so here we go!

Comes the high 🙂

Remember this post, where I was complaining about Nathan not doing anything when I put him on the kidwalk?

Aheeeem.

He’s not strong enough to make it move on his own yet – as he stepped I pushed the walker to go along with his movements. But he was also going uphill and on grass…so maybe soon ???

Thank you to everyone who wrote to give me advice regarding Nathan’s hips – you guys are the best! I really appreciate it! My cool stayed cool and I’m still okay.

Two serendipitous things: Is Nathan proving to me that it’s all about will? Sure seems like it. The moment I start letting him work things out on his own a bit – kaboom – he starts showing me that he CAN do things when he WANTS to.

And the other serendipitous thing: I had been getting a mommy gut feeling that Nathan needed PERCS. That’s why I took him to the orthopedist to begin with. I had called Dr Nuzzo’s office in New Jersey and they wanted me to take some X-rays, so I figured I’d book an appointment with the orthopedist and kill 2 birds with one stone.

Dr. Nuzzo’s PERCS procedure is minimally invasive, the recovery is very fast, and it has the potential to help Nathan significantly. With PERCS, Nathan wouldn’t scissor so much when he tries to walk, his hips wouldn’t pull out so much, and he would generally have more freedom to move.

So after seeing Nathan in the kidwalk today, I was convinced that doing this procedure would be the right move for him. I think once he doesn’t scissor so badly – he will actually be able to walk around in his walker! And wouldn’t that be amazing!

I have no idea how the logistics will work – including how to pay for it – but as usual I will have faith that the universe will provide!

And on that note…I’m going to bed, I am TIRED!

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 GOOD:

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.

THE BAD

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.

THE UGLY

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!