Goodnight Eva

What a difference a day makes. Yesterday I was excited about Eva’s new high chair and today there is no Eva to sit in it. Last night at around 9pm Eva woke crying. Both I and my amazing and brave housemate Ess went into comfort her. Ess passed her to… Read more

I think I might need a new car

Months ago Eva’s physio ordered Eva a whole lot of equipment. It arrived today and I only managed to get 3/4 of it home in my car. Eva is the proud owner of a shuttle seating system. It comprises of a seat with adjustable lateral supports, head supports and a… 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

Triumph

I’m part of an amazing group of women online. We are the spin off to a larger online group that in turn is the spin off to an amazing parenting podcast, The Longest Shortest Time. This group of spectacular women have supported each other, and me, through some crazy ups… 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

What brings you here?

When I log in to¬†Wordpress each day to check out my stats and see how my numbers look I always have a casual look at the search terms that brought people to my blog. While many people post about funny terms that are completely unrelated to their blog’s content, usually… 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

She knows what she likes

Eva has been increasingly telling me what she likes and letting me know to keep doing whatever it is. Since being introduced to the forehead swirl by a new friend to me and Eva, she’s become quite a fan. It’s hard to see at first, but each time I stop… Read more

Look who's talking

I would have called this Wordless Wednesday, but clearly this girl has a lot to say. Read more

Casting the first stone

I feel very cautious about this post. I’ve been thinking about it for a couple of days and while I realise I might not be putting out the line that most people take, I think it’s important that I do. In the New Zealand news recently there was a story… Read more

Crawling is just around the corner

It feels like every week, every day, Eva gets a little bit stronger. She’s started doing some pretty exciting, and very cute things including a sideways wiggle when she’s lying on her back and hip lifts from the ground. This weekend she also showed the first signs of turning her… Read more

She's quite something, this girl

I feel like I have accepted Eva as she is now, but I realise I am not quite ready to see where she may end up in five, 10 and 20 years time. I am part of multiple online communities for CHARGE, including a group with parents of toddlers¬†and infants… Read more