For two fairly average sized people, QB and I certainly produce large offspring. Vegemite was a big baby of 4kg (8lbs 13oz for my non-metric readers) at birth and has always been around the 95th percentile in terms of height and weight. She is one of the youngest but also quite possibly the tallest girl in her class. She loves to try on my shoes and has made me promise that when they fit her, she can have my pair of purple patent leather, peep toe heels. I now worry that they will fit her much sooner than I intended. How to explain that although the shoe may fit, it is still not appropriate footwear for a child in primary school?
Vegemite, however, has been overshadowed when it comes to growth rates by Lil Z. Although she was half a kilo smaller than Vegemite at birth, “Lil” has become something of a misnomer for her. She is off the chart when it comes to height. And although her weight used to be around the 50th percentile for weight, a steady diet of Nutrini Multi Fibre through her PEG has boosted her up into the 90s. She may have lots of medical challenges, but no one could accuse her of a failure to thrive. She is a big girl.
This has resulted in some amusing problems. For example, its nearly impossible to find trousers that fit. She’s wearing size 3-4T these days, despite only just turning 2, but still has the waist size of a 2-year old. So, trousers that are long enough, are so big around her waist that they fall down, and trousers that fit at the waist are much too short. This wasn’t a problem in the summer, when she generally just wore a t-shirt and nappy, but now that its winter, she needs something… At the moment, she’s wearing a pair of sweatpants with a drawstring waist nearly every day.
And don’t get me started on the laundry. QB can’t figure out which clothing belongs to which girl anymore – which is saying something since there is three years between them. I can’t blame him since some items Vegemite was wearing last winter and this winter Lil Z is wearing them. It is very confusing.
But, her growth has also caused some more serious worries, too. The most immediate is my back. At 15kg, she isn’t easy to carry anymore, let alone lift in and out of the car, her pram, various seating systems, her bed and the floor. Her physio jokingly introduces me as “Lil Z’s mum, who has the strongest back in the world”. Unfortunately, even the strongest back in the world is beginning to suffer. I’m managing for the moment through lots of upper body weight training and a clinical pilates class. However, its only going to get harder.
Lil Z’s favourite thing is to be held and snuggle into you, resting her head on your shoulder. She only really does this with me and QB, which makes it extra-special. And she prefers for us to stand (and sway or bounce slightly) rather than sit and cuddle her. It makes me sad that we won’t be able to do this for much longer – particularly as it brings her such comfort (and QB and I love it, too). I’ve been trying to get her to adjust to a sitting cuddle, but even in the rocking chair, it just doesn’t seem to have the same effect.
More worrying, however, is the rate that she is outgrowing her “equipment”. I noticed today that her head is nestled in the sun cover of her stroller because she is so tall. She’s also swiftly outgrowing her cot and her car seat. She also seems to have hit a growth spurt recently and needs to have her standing frame adjusted again – and I worry how much longer it will fit her.
Outgrowing beds and car seats is a universal problem for all parents, but with a special needs child, it comes with a hefty price tag. Special needs strollers in Australia start at around $800 and go swiftly upward from there. And my OT informs me that most organisations like to transition children into wheelchairs by the time they are 4-years old. I can’t even tell you how much that would cost, but it would be in the thousands, if not tens of thousands. Seriously.
Time to move Lil Z to a “big girl bed”? Prices for a basic bed start at around $5,000.
We’re still trying to decide if Lil Z could manage the “normal” next size up car seat. The main problem is that most of them don’t recline, which would be difficult for her. We’ve found one that might recline sufficiently and need to have a look at it in a shop, but if it doesn’t work, we’ll need a special needs car seat. While a “normal” car seat would cost around $400, a “special needs” car seat runs around $2,000.
Then throw in an extra $5 grand for a new standing frame when she outgrows her current one. Oh, and lets not even go into all the home modifications and new car (van) purchases that will need to be done when she becomes too big to lift or carry up and down stairs.
It makes me angry that special needs equipment is so vastly over-priced. I understand economies of scale and that whereas a “normal” car seat is mass-produced, a special needs car seat is produced in smaller quantities, making it more expensive to produce. But does it really cost an additional $1,600 to include a recline function, a bit more support and a headrest to a car seat?
Of course the prices tend to be based on the fact that most people will find some sort of funding to pay for these items, as few people could afford to pay themselves. However, funding rarely covers everything, and a lot of parents of special needs families have set up fundraising websites to be able to cover costs.
We’re not at the fundraising point just yet (so you can relax – there isn’t a plea for cash coming at the end of this post). In fact, only yesterday I was quite pleased to learn that we managed to secure funding for AFOs (orthotics or braces to keep her feet from curling in ways they shouldn’t). It makes me happy that Lil Z is growing like a weed in the sun – it means that despite the setbacks, she is thriving. However, it would be nice if she could slow down a little – just to give us a bit more time in the equipment she has. Sadly, as I throw another pair of trousers on the pile of “too small” clothes, I don’t think Lil Z will be doing that any time soon…