Saturday, March 10th

On Thursday we took Nathan to see the opthalmologist and it went well. She thinks he has good vision. However, she’s giving him a diagnosis of cortical visual impairment as it’s difficult to tell how his brain is processing the information.

Afterwards we had our appointment with Dr. McCombe, the neurosurgeon at Children’s Hospital LA. We were interested in a second opinion and wanted to explore Children’s Hospital. He said the shunt is working fine and at this time there’s nothing that needs to be done.

We decided not to switch to Children’s as there were a couple of things that we weren’t happy about with Dr. McCombe. He emphasized that the best thing about all this is that Nathan’s mutation is spontaneous, not inherited, so we can have lots of normal children. It felt like he was discarding Nathan’s life due to his problems and we left feeling flattened.

Dr. Lazaref, Nathan’s neurosurgeon at UCLA, has told us many times that he thinks Nathan is going to do very well and he gives us hope.

So we are going to stick with Dr. Lazaref in the future for any neurosurgical issues.

Other than that, things are very good and stable. We are going to enroll Nathan in a study at the NIH so they can study his genetic mutation and hopefully learn more about it so they can help other children in the future.

Again thanks for checking in and for your continued support and prayers

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