A rare life – day 19

It seems fitting that I’ve challenged myself to write every day during a month when so much is happening – some of it expected and some of it not. But at the same time, there is too much happening and I don’t feel like I’ve had the opportunity to mentally process any of it yet. So instead of writing insightful thoughts (thoughtful insights?) about the latest developments, I’ve ended up skipping over a lot. It feels like I’ve been so busy living it that I haven’t had time to think about it, let alone write about it.

So, tonight I thought I would sum up some of the Miss Z issues that have come up this month.

  • Ketogenic diet – I’ve written about this one. At the moment it is still much to early to tell if it will work, but Miss Z is coping well with the high-fat formula and we’re beginning to fall into something of a routine with the mixing, measuring and blood testing.
  • Renal referral – During her pre-Keto blood work, it was discovered that Miss Z had a low bicarbonate level. They re-tested her and it was still low. Low bicarb suggests that she has acidosis – essentially that her blood is too acidic – which suggests a potential problem with her kidneys. The likely culpret is Topamax, one of her anti-seizure medications – that can cause acidosis. However, Miss Z needs to be assessed by a renal specialist to decide if the drug really is the cause.
  • Portacath – Miss Z has always had terrible veins. They’re tiny, they’re deep and they roll. This makes her monthly infusions difficult. At first they were giving her anaesthetic to knock her out in order to get an IV cannula in her. Once the frequency of the infusions increased to once a month, they decided that was too much anaesthetic, so the ‘line nurse’ was scheduled. She is amazing – and has always been able to get a cannula in Miss Z, often without using ultrasound. However, it is still an unpleasant process for Miss Z. Add to that, Miss Z required a lot of IV antibiotics last year, but her veins can’t cope for more than a day or two with a cannula, making the process really difficult. So, we discussed Z getting a portacath with her paediatrician, who thought it was a good idea as well. Since it isn’t urgent surgery, I expected we would wait for quite some time, but I got a call today and they’ll be inserting it (surgically, under general anaesthetic) during the second week in March. It will make life easier for Miss Z, but of course it isn’t without its risks. And with the surgery going ahead so soon, I’m feeling a bit worried.
  • Wheelchair – Miss Z is trialling a wheelchair, starting tomorrow. We’re being loaned a Zippy, which her physio will play around with to see how it works for her. Its too big and heavy to go in the back of our car, so she’ll only be able to use it for school for the time being.
  • Home modifications – which brings us neatly to home modifications, making the house more accessible for Miss Z. We will need a lot of modifications – not the least, a lift/elevator. They will be very expensive and not all the cost will be covered. It is an intimidating thought.
  • Indoor seating – we’ve been trialling a Special Tomato sitter, but unfortunately it doesn’t have enough lateral (side) support for Z. So, we will look into another type, called a gravity chair.
  • Spinal brace – Miss Z’s scoliosis is getting progressively worse. After a long delay (don’t ask), Miss Z now has a new and improved spinal brace, to help her sit straighter and hopefully prevent the scoliosis from progressing so quickly. Which is great, although I worry it is putting too much pressure on her GJ site. It has been adjusted once already. Miss Z doesn’t seem to mind the brace too much. She is managing to sleep in it. But the brace – which is hard plastic – also makes it hard to lift and carry her (which means we need to get a move on with those home mods!).
  • Government benefits – Now that we are permanent residents, we are eligible for government funding for a whole range of things, from home mods to seats and wheelchairs. But first we have to jump through lots of bureacucratic hurdles. So, I’ve been jumping! It is a slow and frustrating process, however – and I’ve only just started!
  • Communication boards – Her new speechie made some beautiful ones. We just need to buckle down and work on them!

I’m sure there is a lot more, but right now my eyes are closing as I write – a sure sign tht I need to go to bed!


Back brace AND Tomato sitter. How’s that for multi-tasking!


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