Started at NAPA Center today

We finally have somewhat been worked into the schedule at NAPA Center with random appointments. When Tam, one of the owner's of Therapy West (where we have been getting our therapy since the beginning) told us that she could only offer us half hour sessions due to an insurance limit, we had to look elsewhere for full sessions. We have been having the shorter sessions but it's been a bummer. As soon as they get going it's time to quit. We will continue with our OT that we've been seeing until they work us in for OT but I had to sadly say goodbye (at least from the therapy perspective) to our favorite PT, Christy. It was a tough one, that's for sure. But she was super professional about it and totally understands.

So after keeping his attention with toys and books while he laid on the table at Dr. Dolgin's office for 40 minutes, Ian and I ate lunch of bean burritos and headed over to NAPA Center for his first CME therapy session there. And boy was it a tough one! He pretty much started crying the moment I handed him to the therapist and didn't stop until he was safe in my arms or in the arms of the assistant who was helping us. Even though he was fussing the whole time, Rebecca, the therapist, said he did really well. He fought it but was doing what she put him in the position to do. She had him stepping up and down off of and in and out off a box while she held him at the knees or ankles. As well as having him come up to a free stand from a quad position while holding his ankles. I'm sure his little chubby legs were tired after that workout.

It's definitely a different method from a physical and emotional standpoint. Rebecca is definitely not Christy. Of course Christy has known him from the beginning and has an amazing relationship with him. Maybe that will come with Rebecca but I don't get the feeling it will be quick to arrive. She's just a different kind of therapist. A very good one indeed but just very different from the connection standpoint. We'll see how it goes as we continue with the sessions.

Just like with all the other doctors, I have to be prepared with my bags of special toys that can grab his attention for a moment and take his mind of what he's being asked to do. It's exhausting to be "on" every second of the session. But we have fun at the same time being as goofy as possible. Today singing with the toys worked a little. We'll see what strategy works next time.

On the speech front, we still don't have things moving. After speaking to so many therapists and trying to get things going with a couple that ended for different reasons, we still have no regular speech therapy. And it's keeping me up at night stressing over it. He's finally ready to communicate and I'm not supporting him doing so with professionals. What's the hold up? Well, we've been awaiting a new therapist to begin at NAPA at the end of June so all of our therapy will eventually be in the same place. Hopefully she's as amazing as her reputation proceeds her. And in before hand we have been working on scheduling a It Takes Two To Talk parent session with a center in Santa Monica. It seems like it's taken forever to get it going. I finally had a start date of this week and it got postponed again!

Strangely enough when going in for the OT eval at NAPA, they mentioned having another child they treat with M-cm. Turns out the family lives in my neighborhood and the older daughter goes to the same preschool as my daughter! Crazy small world it is! Especially considering how rare M-cm is. The FB group has 277 members and that's in the world. Anyone who has a diagnosis inevitably searches the web and finds the FB group. So, we connected via phone and realized that she takes her daughter to the place that I've been trying to get this program through. So we decided to go through it together since our children might have similar issues. But it postponed it another month! So frustrating!

We did get an eval last week by a therapist at CHLA. She did confirm that I'm doing all the right things to communicate with him and try to get the most out of our communication. She said I'm a natural speech therapist ;-) But I still want to get a professional situation going. She did mention that maybe the therapy wasn't moving forward before because he wasn't ready to communicate. But now clearly he is. He's doing it with grunts and fusses. As well as grabbing my hands and placing them where he wants me to do something. And lastly just with his looking at me. He'll open a book he wants me to read and tap on the page and look up at me until I read it to him. He does this over and over all day. Clear communication... just not with words. They will come, I really feel they will and I hope I'm not jinxing him. But I have to get it going. I asked the ITTTT therapist tonight if she would be willing to do traditional therapy with us until NAPA gets going. Hopefully she can fit us in.