Two years ago – where the story started

Two years ago – where the story started

Two years ago I was going to sleep after a frustrating day of expecting labour, and getting not much. I had been induced at 8am that morning with prostaglandin gel. By 8pm that night the minor period-like pains had eased and I was looking at my first night in the… Read more

Counting backwards

Counting backwards

Holidays seem to make me count backwards. Where was I last year? The year before? I did this before Eva, but now it feels even more pressing. Easter is no different. Last year on Easter I drove to the Hawkes Bay for a holiday with friends. The holiday coincided with… Read more

One year ago today

One year ago today

Facebook has a lovely memory function where it pulls something, a photo, or a post from your past and chooses to remind you about them a year on, or five years on. Today, a photo of me holding Eva in Starship hospital popped up. “See your memories,” Facebook prompted me.… Read more

This city feels different

This city feels different

I’m in Auckland visiting friends. I used to live here, what feels like a lifetime ago, and I still have quite a few friends who live here. One of these very good friends decided to fly me up to spend some of the school holidays with her and her family.… Read more

Murphy's Law at its best

Eva is booked in for surgery next Tuesday. Today is Monday. Eight days away. So you can imagine my utter disappointment when after months of no health issues, no coughs, no spills, no runny noses or lung issues Eva starts sniffling and coughing on Saturday. It’s Murphy’s Law at its… Read more

Blood letting, babies and a good result

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,… Read more

The non compliant baby

With all the other things going on with Eva, cardiology has been largely ignored. It’s crazy to think when I was pregnant, Eva’s heart was such a concern, and now, her heart is the thing I think about the least. She has had echoes and scans but there has never… Read more

Human nature and a baby in a bucket

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… Read more

I am the expert

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… Read more

It begins

So it begins. Today was when I arranged with myself for my holidays to be over. Today I would start working on planning for school, rearranging Eva’s appointments and surgeries. Tomorrow Eva goes into daycare full time. Today I had a list of things I wanted to get done. My… Read more

Christchurch, cochlear implants and some giggles

We are back from our excursion to Christchurch. The news is good. They are recommending bilateral (both sides) cochlear implants. Provided the surgery isn’t too lengthy they will be doing both of the implants in late March next year, before the Peanut turns one. They were very careful to point… Read more

Happiness breeds happiness

While we were in hospital last week a friend who I haven’t seen for a long time visited the Peanut and me. She had been following the blog so knew the basic run down on the Peanut, but had never met her. She arrived shortly after I had been told… Read more