Blood letting, babies and a good result

By on February 17, 2015

This morning was… busy. Eva had a follow up test after her cortisol levels were shown to be slightly lower than normal at a blood test last week. People with CHARGE Syndrome often have issues with hormones due to the involvement of their pituitary gland. it can affect growth, stress, and other areas of development. Read More...



Human nature and a baby in a bucket

By on January 29, 2015

I drove to Eva’s plastics appointment with my hands clenched on the wheel. I was expecting to be told that they would not be doing anything to fix her eye because it was purely cosmetic. In my pocket I had the letter Eva’s day care provider had written supporting my idea that this was about Read More...


I am the expert

By on January 16, 2015

Eva has two paediatricians at the moment. One is at the local hospital and is her main doctor, and the other is in Wellington and saw Eva when she was there in the NICU as a new born and specialises in neurological issues. Thankfully, once we move into Wellington we will just have the Neuro Read More...