Decisions & Pictures

We got our camera back. It had broken. So now I can go back to posting pics and videos of the little munchies. Here is my new favorite video:

And some pictures:And now for some thoughts.

I spoke extensively with the people at today. Their program seems amazing. Ever since I read about brain plasticity something clicked deeply inside of me and I knew this was Nathan’s only hope. His body is perfect in every way. At birth every organ was intact, every muscle, everything. It’s his brain that’s broken. And his brain is slowly breaking his body. But when I read about brain plasticity, a light went off in my head. If we can fix his brain, we can fix his body. If we can rewire his motor cortex, his body will function better.

So I’ve focused on treatments that can fix his brain. I have tried to be selective and choose modalities that help the brain rewire itself. That’s why we made the humongous effort for Nathan to have stem cells – I had hoped maybe those new cells would become a new motor cortex. And that’s why we went to Reach and tried the Doman Delacato approach. The whole premise is based on treating the brain.

But from the beginning I have always wanted to preserve Nathan’s quality of life. I didn’t want to pursue treatments that would make him miserable. I wanted to cherish the very essence of Nathan, that very light, joyful, loving nature. Which has received a hammering during the last few months. From treatment to treatment to treatment.

And now I have found a methodology whose very premise is to preserve his joy. The most fundamental aspect of the Brain Repair Institute’s approach is that stress prevents brain development. So you work hard to preserve the joy.

Why aren’t I overjoyed? Why am I so afraid to jump on this and abandon all the other modalities?

They want us to stop everything we are doing because it all brings him stress. They won’t accept Nathan as a client unless we agree to stop everything and do only their program. They’ve agreed to allow some of his therapists to continue to work wtih him but just on a “let’s hang out” basis. They can’t force his body to do anything.

And when you look at that first video that I showed, I think you can understand my fear. He just mastered that skill. He can now press that little lever. And you can see how proud of himself he is. How everytime he pressed that lever he looked at me for much deserved affirmation.

And I am so afraid that if we start this new treatment modality it might make him lose what little he’s gained. This week he has been doing so well. Something seems to be clicking in him and his head control has been so good. I almost cried when I saw him at PT yesterday and he was holding himself in a supported sitting position, standing really well, holding his trunk well. And he was so so proud.

So although Unlimited Brain sounds like a dream come true, and an answer to prayer, I am so afraid. Of course I want to treat his brain. They are offering me a method to treat his brain, and nothing but his brain.

But my gut tells me, we can’t just treat his brain. His muscles need to be treated as well. Because any muscle that isnt’ moved atrophies. I don’t want days, weeks, months to go by without Nathan “exercising” and without moving his limbs. Will the brain repair itself quickly enough to allow his own brain to get his own muscles to move? I dont’ know. And I’m afraid that in the meantime his little hips, adductors, ankles, toes will get tighter and tighter.

I don’t have an answer for this one. I wish I could talk to an expert, ask some questions, get an answer. But no one knows. No one can give me the answer. And I’m not a doctor and I’m not a neurologist or neuroscientist or a physiatrist. So how in the world am I supposed to make these decisions????

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