Monday, 2 July 2012

Princessly Progress

We had tLP's Annual Review last week. A group of people around a table, all talking about the educational progress achieved, the challenges ahead, and what we think tLP is going to need in order to thrive.

We talked about her current levels of achievement. She's doing brilliantly. Brilliantly for tLP looks slightly different to brilliantly for other children; however she is gently moving away from P Levels (the earliest learning targets) onto level 1s (where the average child would be when a few years younger than tLP). It's great. It's exciting. tLP is bursting with reading and writing - every other word she utters is broken down "I am fuh Ih nnnn ishd. Duh unn, done". Makes for a slow conversation, but it's all coming together. In maths, too, she is moving away from the bottom of the page. She can count in ones and twos and tens, although learning to count in tens is making it harder to cope with the teens.

She'd have been doing even better, had she not lost a significant amount of ground following her surgery at the beginning of the year. Which makes it even better that she won't now be having more surgery until at least the New Year. And if we can find a way to straight jacket her into her wheelchair, to give her an upright posture which is equivalent to her lying down posture, then we may be able to delay spinal surgery for longer yet. This would be a Good Thing - she's a fairly small seven year old, and I'm not sure we want to leave her this size forever.

In the meantime, we need to work on not letting her tummy get any bigger. And the scan which gave us good news about the position of her spine, gave us bad news about the quality of it, so we need to be finding ways of increasing her bone density. There's not going to be a lot of point in putting her through rodding surgery, if the rods are being fixed into bone not strong enough to support them.

It's surprising how little food you need when you are largely inactive. Most important then, that what she does get is of decent quality. Now for Miss Mog that's a relatively straightforward process. I find nice balanced and nutritious food, whizz it up, and push it through her gastrostomy. Fruit and vegetables and complex carbohydrates, decent amounts of a wide range of proteins, a sprinkling of nuts and seeds and plenty of fish and chicken, leafy greens and fresh salads, herbs from the garden and peppermint drops from the health food shop, and she is glowing and bursting with good health. And all at under 800 calories a day.

tLP however prefers to eat most of her meals. And has some distinct preferences as to what those meals should be. School dinners have been great; she will eat a far wider range of foods at school and in public than she will at home with me. This gives me two meals a day to be building up her bones. She'd eat cheese until the cows come home (or until the cows get tired of coming home only to be stripped of milk to turn into cheese which will then be eaten by tLP), she'll slurp yoghurts and drink milkshakes and eat fish and love it. She'll eat broccoli and carrots and begs for asparagus (with plenty of butter, naturally). But she'll also become more and more roly-poly, and her lap is small enough as it is.

And she is loving her current swimming lessons, and would love to be more active, but weight bearing exercise is a little tricky when your legs won't bear any weight, and when your brain is a little bit too fragile to be trampolining or horseriding or playing on bouncy castles. And even rolling over and trying to crawl is difficult when you've probably just re-dislocated your previously repaired, pinned and plated hip, only there's no way of knowing for sure because the urgent appointment to check it out isn't for another week, and you have no feeling in your hips so we can't be guided by pain.

So I'm left with power breakfasts to try to squeeze everything she needs into. She chooses to have a breakfast smoothie via her tube most mornings. Partly because that's what Miss Mog has, partly because she's too busy in the mornings to take the time to sit and eat breakfast, and partly because coordinating that chew and swallow is a little tricky when you're already having to remember to breathe after a night with a machine doing that for you.

Anyone got any good recipes for nutrient dense, calorie super-low combinations? Most mornings, both girls end up with multiple fruits, the occasional vegetable (Although since I wouldn't personally have spinach for breakfast I don't really like inflicting it on them), milk, oats and a handful of seeds and nuts. Pale pink from raspberries or a beautiful deep purple with blueberries, a rather offputting brown from prunes and apricots, or a soft peach from citrus fruit. Sometimes smelling so beautiful I have to make a triple batch and start my own day the same way (though without the tube).

And then there's the all important vitamin D. We are finally having some sunshine, and tLP is hiding in the shade, sitting under giant hats or refusing to go outside at all. So indoctrinated with the fear of the sun, the risk of skin cancer and sunburn, that she is refusing to go out without protection in place. I read that Ricketts is on the rise again; I wonder if there have been studies done assessing the risk of Ricketts as opposed to the risks of cancer? Meanwhile I'm fighting a losing battle, attempting to get her to brave a gentle glow, and surreptitiously substituting fortified cereal for the porridge oats whilst being annoyed with myself for not managing to manage without the artificial additives.

And all this whilst still making space for an occasional McDonald's or Dominos Pizza, for these are the things which delight her soul.

tLP's imagination has taken off now too, and she'd like the world to meet her "Imagination Babies". These take the form of Tyler and Zach (both boys), who are sometimes twins, occasionally triplets (but one was died) and sometimes big brother and little brother. Tyler likes to climb back inside tLP's tummy and be a tiny baby again sometimes. Zach usually runs across the road and has to be tied into the buggy. They both like baths, but neither of them wants to go to bed. So far, so sweet. Until Tyler and Zach keep her up at night, or until worries over whether they are tucked in causes her to wake up at 2 and ask me to check. They have their own car seat, suspended midair between her wheelchair and my driving seat. They have a wide variety of different kit, and can need to go to hospital at strange (and inconvenient) times of day. They are strong believers in the goodness of blended food, but they don't like beans or spinach. Sometimes they are baby dolls, sometimes monkeys, and sometimes they are dogs and have to go for walks on leads. But they are always Tyler and Zach.



pippinsmum said...

Tia, is there any way you could incorporate a vitamin D supplement into her smoothie? I take one which is a capsule with some sort of oil in it, although it might be difficult getting the oil out, as they are so tiny

Danni said...

I'm glad that Little Princess is doing as well as she is. I used to have a torso harness to hold me upright in my wheelchair- would something like that work? It stopped me flopping forwards or sideways.

I'm pretty sure you can get vitamin D drops. That would be the easiest way to get some into her. There's also chewable and suckable supplements (I like them as I can't always eat a varied enough diet to be sure I get everything I need, and the adult ones are disgusting).

I was wondering- do you know how to keep sunlight off someone's face when in a reclined wheelchair? I recently got one and love it except it's too bright in the sun even with sunglasses as I'm looking up to the sky. I've tried a hat but it keeps coming off as my head moves against the pillow :-P

I hope you're all doing as well as possible. *Squishes*

Sara said...

Its lovely to read that LP is doing so well. Maybe the future camping trips will inspire her to get some sun. I mean we are going to have warm glorious weather you do know that xx

Tia said...

Re vitamin D, at the moment I try to use a fortified cereal but will speak to our dietician I think.

Danni - miss Mog has an infant parasol on a bendy stalk. Mothercare and BabiesRUs sell them - it's black so doesn't actually look babyish. I clip it to either the push handle or else the frame of her headrest, and bend it down to shade her according to the angle she is sitting at and where the sun is coming from. Any use?

Danni said...

That actually sounds like an awesome idea. I will look for one. Thank you :)


Blog Widget by LinkWithin