Zave's Neurologist

Today was got to meet with Zavier's new neurologist for the first time. Dr. Jennifer Nguyen. We bid farewell to Dr. Tian, Zavier's neurosurgeon back in April after his last MRI.

Because there were no signs of hydrocephalus, Dr. Tian told us we really didn't need to see her anymore and instead should just meet with the neurologist from here on out.

And we love her! She really is fantastic. As a mother of a child with special needs and having to have so many doctors and therapists, it's such a big deal to find one that just fits all your needs. It was even more important in this case that we liked her because this would be Zavier's neurologist for years and years to come. So it felt so awesome to like her so much.

She was super energetic, kind, and easy to talk to. She also was very informative and seemed like she knew what she was talking about.

Unfortunately though, she told us some things that we didn't ever hear before.

She told us that when she reviewed Zavier's MRI that she found something else.

And that was that Zavier has what is called Periventricular leukomalacia (PVL).
She said she wasn't sure why Dr. Tian hadn't mentioned it.

PVL is characterized by the death or damage and softening of the white matter, the inner part of the brain that transmits information between the nerve cells and the spinal cord, as well as from one part of the brain to another.

So in other words he has brain damage. She said this was probably due to lack of oxygen at some point, most likely while in the womb.

With PVL, the area of damaged brain tissue can affect the nerve cells that control motor movements. As the baby grows, the damaged nerve cells cause the muscles to become spastic, or tight, and resistant to movement. Babies with PVL have a higher risk of developing cerebral palsy (a group of disorders that prevent the child from controlling their muscles normally), and may have intellectual or learning difficulties. PVL may occur alone or in addition to intraventricular hemorrhage (bleeding inside the brain).

She also said that 60-100% of kids with PVL are also diagnosed with Cerebral Palsy.

So obviously, this was not good to hear.

But again, we are trying to stay positive and to just see what's in front of us and that is a thriving happy baby boy who is doing new things everyday.