Miss Z (previously known as Lil Z)
Born in March 2011, Miss Z is a beautiful little girl with the world’s longest eyelashes and a crazy mop of hair that grows in all directions and has suddenly become full of beautiful curls. She loves bouncing in her chair, rolling on the floor, watching cartoons and rugby on tv, and going for walks in her pushchair. When she’s happy she chirps and squeaks and kicks her legs. She hates people fussing with her or trying to make her do things she doesn’t want to do, and she’s not afraid to let you know when she’s unhappy.
Miss Z was diagnosed with global developmental delay at 6 months old, although we had had concerns for a while before that. Since then, a number of issues have arisen. At the moment these include:
- Global developmental delay
- Seizure disorder (epilepsy)
- Microcephaly (small head)
- Hypotonia (poor tone, especially in her trunk)
- Silent aspiration (unable to swallow fluids properly) – over the course of 2012 this led to her being fed by nasogastric tube and then in January 2013 she had a PEG inserted. She now has a mic-key tube (a “low profile” gastrostomy). She currently does not take anything orally.
- Cortical Visual Impairment (CVI – a vision impairment caused by a brain rather than eye problem)
- Problems with the growth of the white matter and myelin in her brain (the ‘circuits’ of her brain aren’t formed properly)
- Osteopenia (fragile bones) – she currently receives bisphosphonate treatments to strengthen her bones.
Despite these issues, there are a number of things that Lil Z is able to do, and do quite well.
- Hearing – she surprised us all by cooperating with a hearing test that we had expected would be beyond her developmental capabilities. And not only did she cooperate, but she passed with flying colours!
- Wiggling – despite not being able to walk or crawl, she is a master escape artist when you try to dress her or change her nappy.
- Blowing raspberries – she is the master. The undisputed master.
- Splashing – she can splash just like her big sister in the bath.
- Floating – she loves to float on her back in the pool or in the bath.
- Smiling – she doesn’t do it often and it usually takes a bit of effort, but when she smiles, you can’t help but smile back.
- Bouncing – she loves her bouncy chair and can get it bouncing along at a swift pace all by herself.
Vegemite is a boisterous and independent-minded seven-year-old. She is the world’s biggest girlie girl, wearing pink, playing with Barbies and taking ballet lessons, but she is also rough and tough and loves to run and swim and ski. She has a huge vocabulary and rarely stops talking.
She is beautiful, intelligent and compassionate and she will go far in life if she puts her mind to it. She’s excelled at everything she’s done, hit all her milestones well ahead of schedule, and has social skills that regularly amaze us.
Vegemite loves her little sister and is often an enthusiastic helper, helping her to sit, reading her bedtime stories and running to fetch towels and sick bags when Miss Z does one of her frequent vomits. We do worry, a lot, about the impact of having a sister like Miss Z will have on her. She often misses out on attention because so much of our energy is focused on her sister. I worry how she will cope at school, having a sister who is so obviously different. And I worry about the fact that when QB and I are old and senile, she will be solely responsible for her sister – a potentially huge task to place on her shoulders.
The sometimes thoughtful, sometimes frustrating husband of the story. After spending several years as a consultant roaming the world, he has had to readjust to a settled life in Brisbane. It has not always been an easy transition. He works long hours, which means he sees the girls only briefly during the week, but gets to spend time with them on the weekends, including being a proud “ballet dad”. He also has the magic touch and can often get Lil Z to take a nap when no one else can.
He is also a cancer survivor, having been diagnosed with chronic myeloid leukaemia in 2002. He had a bone marrow transplant in 2003 and despite a few problems early on, has been in remission for several years now.
QB, by the way, stands for “quick beer” as in “just going for a quick beer” – which is the most common text he sends me of a Friday evening. Even Vegemite now sighs and rolls her eyes and says “oh no, Daddy’s no going for a quick beer, is he?”
Once career-driven and work-focused, I now try (not always successfully) to balance my part time professional career with caring for the girls and managing all of Lil Z’s appointments, insurance claims, medications, and therapies. Plus consulting Doctors Google and Wikipedia regularly in my spare time.
Often, the only thing that keeps me sane is my weekly personal training session, where I’m generally too exhausted to think. And the occasional run. The only thing that keeps me going most days is my addiction to “flat white” (an Australian variation on cafe latte). And a nice gin and tonic in the evening doesn’t hurt either.
Supporting Actors – Team Z
Over the past four years, we have worked hard to build up a support base for ourselves. Foremost amongst these wonderful people are our special needs au pairs, who spend six months at a time with us, looking after and caring for Miss Z and Vegemite, doing daily therapy with Miss Z and generally keeping things running. There are a number of other people behind the scenes who lend a hand when things get rough, help with fundraising, babysit, buy QB and me a drink when we need it, or collect Vegemite from school when I’m running late. Without these people, our lives would be much harder and much, much less enjoyable.
There have also been a vast number of other people who have become involved with Miss Z on the medical and therapy side. She currently sees a GP, Paediatrician, Neurologist, Geneticist, Audiologist, Speech Pathologist, Ophthalmologist, Optomatrist, Endocrinologist, Respiratory Specialist, two Orthopods, Physiotherapist, Occupational Therapist and Speech and Language Therapist. I’ve got nothing but praise for all these people – as well as the doctors and nurses we’ve encountered on our visits to the hospital. They now feature quite highly in our lives, so will feature quite highly in my writing.