A rare life – day 20

Today, in Miss Z’s view, is a bad day. Not because I dragged her out of bed at 7am even though she made it clear that she wanted to sleep. Not because she had a cluster of seizures shortly before the bus arrived. Not even because it is Thursday, which makes it a boring day at school (compared to swimming on Tuesday and music on Wednesday).

No, today is a bad day because she will have not one, but TWO, physiotherapists fussing over her this afternoon. They will be adjusting the wheelchair that we currently have on loan to see if it would be an appropriate model for her. She headed off to school in the snazzy little purple chair this morning for the first time. Miss Z hates being fussed over. She hates people adjusting her equipment. And she hates trying new things. It will not be a good day for her.

Currently, we use a Kimba Neo special needs stroller for Miss Z. She has had it since she outgrew her regular baby stroller several years ago. I’m not in love with the Kimba, but it isn’t bad. I like the fact it has a sunshade and rain cover – more like a stroller than a wheelchair – and, even though it weighs a ton and takes up a lot of space in the boot of the car, it can be broken down and collapsed fairly easily. The fact that it fits in our car means that we haven’t had to think about getting a wheelchair accessible vehicle – which is good.

However, Miss Z’s insanely long legs mean that she’ll soon outgrow the Kimba. And her needs in terms of supportive seating – due to the low tone in her trunk – mean that a wheelchair would be beneficial. Plus, she’s nearly five, she’s getting too old to be pushed around in a stroller.

So, off we go into the new and bewildering world of wheelchairs. Apparently, its all about the frame – because you can put pretty much whatever you want/need on the seating system. No, its not just a seat, its a “seating system”.

Fortunately, the two physios who will be tinkering with Miss Z’s chair today (and over the coming weeks) know vastly more about wheelchairs – and what Miss Z needs in one – than I do. I suspect my greatest input will be to choose the colour. Oh, and of course sort out the funding, ’cause wheelchairs don’t come cheap and they don’t accept MasterCard – or however that ad goes (they probably do accept MasterCard, but probably not mine, which has a credit limit that does not extend to the cost of a fully-loaded wheelchair).

Probably the most significant part about moving from a stroller to a wheelchair is going to be the knock-on effect of it. After all, it is unlikely that we’ll be able to find a wheelchair that is adequately supportive that will also fold to fit in the back of the car – at least not very conveniently. So, that raises the issue of a wheelchair accessible vehicle. And then there is the issue of getting the wheelchair in the house – which means ramps. And getting the wheelchair upstairs – which means installing an elevator. The knock-on effect is all a bit overwhelming… and expensive.

But that is all part of being rare – it doesn’t come cheap or easy.


A very tired Miss Z in her Kimba stroller, helping me to haul our 5 boxes of KetoCal formula from the hospital pharmacy to our car.





One response to “A rare life – day 20

  1. “She hates people adjusting her equipment. And she hates trying new things. It will not be a good day for her.” Characteristics probably inherited from her grandmother – just ask QB about recent happenings! Seriously, love reading about Miss Z’s daily happenings.


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s