And then there was a lift!

After a lot of noise and dust, we have (drum roll please) – our own, personal elevator in our house.

It was a surprisingly quick process – once the lift arrived in Brisbane, that is. After the general builders knocked the hole in the floor/ceiling, the lift builders arrived and took about a week to install the lift and run all the necessary tests to ensure that it operates safely.

Then the general builders returned to finish things off. As far as building projects go, this one was straightforward and drama-free.

So, here is the big reveal – our new lift!

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The upstairs part – which exits into Z’s new bedroom

…and…

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The downstairs section – which exits down a ramp into the garage

As you can probably tell from the first photo, the next step in the journey is to finish decorating Miss Z’s new bedroom. Once it is painted and the carpet laid, she can move upstairs. That will be the completion of phase one of “Project Home Modifications”.  The next steps will be to install a ceiling track and hoist system in her new bedroom and remodel the bathroom so that it is fully accessible for her.

The lift has come just in time. Miss Z is growing like a weed and now weighs around 25kg (55lbs) – making it increasingly difficult to lift and carry her, especially up and down stairs.

There was lots of excitement when we were finally given the green light to use the lift. I have to confess to going up and down it by myself several times (the girls were at school). Then our care worker arrived and I took her up and down a few times. Vegemite arrived home from school and was thrilled to try it out.

There was one person who wasn’t quite as enthusiastic:  Miss Z.

When the school bus delivered her home, she was fast asleep, and steadfastly refused to wake up (even with a bit of sisterly encouragement) to admire the new lift. So, she slept through her first ride. And many rides since then. In fact, I’d say that her favourite feature of the lift is that when she has an afternoon nap on the bus, she doesn’t have to be woken to be carried upstairs, but instead can continue sleeping as she’s rolled into the lift, taken upstairs, and rolled back out, and then parked in the kitchen where she continues to snore happily for up to an hour.

At least, in her own way, Miss Z has made the use of the lift her own.

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Miss Z and her unwaivering dedication to sleep

 

And so it begins…

At 7am this morning, a man began knocking a hole in the ceiling of our garage and the floor of our spare bedroom. By 10.30am, there was an elevator-shaped hole in our house.

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Before…

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…and after

Not to mention the fact that the closet doors are the only thing separating my office from the garage!

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My office is on the other side of these closet doors

So, now we have to wait for the lift to clear customs. Hopefully it will arrive by the end of the week and construction will continue.

 

However, what was really amazing today wasn’t the giant hole in the floor or the fact people can now pop out of the closet and surprise me while I’m working. The really, really amazing thing is that Miss Z slept through the process of knocking down walls and cutting giant holes in the floor. The overpowering noise that had me wanting to hide in a closet to escape. She completely slept through it. She has won my respect – that is a serious commitment to sleeping in during her last week of school holidays.

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Miss Z demonstrating her unwaivering commitment to sleep

Love lift us up where we belong

The only problem with the title of this blog is – as everyone with a mobility issue or who lives with someone with a mobility issue knows – love can’t lift you up where you belong. In Miss Z’s case, someone who loves her has instead been lugging her up a flight of stairs to where she belongs, and then back down the stairs again later.

We live in a “Queenslander” style house, which means it is raised up. Although previous owners have converted underneath into additional bedrooms and an office, most of the living space is upstairs. Until now, Miss Z has had her bedroom downstairs (to be close to us) but spends her days upstairs in the living areas of the house. This has meant that we need to carry her up and down stairs.

Miss Z is now 5 1/2 years old and weighs 23kg (50lbs) and no matter how much we love her, it is getting harder and harder to carry her up and down the stairs. And it is becoming less and less safe for everyone.

This comes as no surprise – we’ve known this day has been coming for a long time. Our initial hopes at a “quick fix” that might resolve the stair issue were a flop. After a lot of discussion (some of it quite emotional), a lot of advice from occupational therapists, builders and equipment providers, and a lot of planning, we have decided to install a small lift (elevator for those of you in the US). It will start in the garage and office closet and go up into what is now a walk-in wardrobe in our spare upstairs bedroom – which will be converted into Miss Z’s new bedroom.

Making major modifications to our house is both scary and exciting. Scary because it involves significant amounts of money and exciting because it could transform the way Miss Z accesses the house.

The lift is manufactured in Europe, so although we made the big decision to do it several months ago, it is only now arriving in Australia. In the coming weeks, construction is scheduled to start.

I will update the blog on our progress. However, in the meantime, please keep your fingers crossed for us!

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The upstairs bedroom – all cleared out and ready for work to begin

2016 wasn’t all bad

Most people thought 2016 was a pretty rubbish year, what with the death of so many beloved celebrities and Brexit and the Donald. For Miss Z, however, 2016 was a year of recovery and relief after a long, hard, unhealthy 2015.

We had some big milestones in 2016, the biggest being Miss Z starting school – and attending five days a week. At the end of 2015 – after month after month of chronic chest infections and hospital admissions – I raised my concerns with her school about Miss Z attending the full 5 days. I just didn’t think she was strong enough, that she had the stamina to get through a full week. Miss Z’s school – who no doubt hears the same thing from many of their parents – acknowledged my concerns and told me to “see how it goes”. And how it went was better than I could have hoped. Miss Z thrived at school and although she was usually exhausted by the end of the week, she coped brilliantly. During the last term, she even attended school “camp” – which included a trip to Sea World and a sleepover at school. And the big smile on her face when she got home the next day told me how much she enjoyed it.

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Dressed up for her school Christmas concert

Not only was school a success, but she also started going to school on the bus. This gave her some more independence and also saved me having to do the school run to two different schools in completely different directions every morning and afternoon.

Going to school has also led to some exciting progress with her communication. She now uses her YES and NO cards consistently with eye gaze (she looks at “yes” or “no” to answer questions) and fairly consistently by hitting the card she wants with her hand. Her teachers have been using a PODD communication book with her during the year, and she is becoming more consistent with it, even with more complex ideas. For example, when she gets upset in class, her teacher will ask her what is wrong, and at times she has been able to tell them that she is uncomfortable or bored or feeling grumpy. Imagine how important that is to a girl who up until now has simply had to wait for the people around her to figure it out – or not.

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We had a lot of little milestones, too. Miss Z went to her first (and later her second) movie in a cinema and managed to stay for the whole film – and even enjoyed it. We all went to see Cirque du Soleil’s new performance, Kooza, before Christmas and the look of awe on her face (and her sister’s) at the start of the performance was priceless.

We also got our first piece of funded equipment – Miss Z’s beloved gravity chair. It wasn’t a fast process, but it is great to have a new seating option for her (in fact, she’s sitting in it now, watching cartoons while I write).

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Miss Z loves her gravity chair

She’s done some great things in physiotherapy during the year, and in her last session of the year even sat unassisted for 30 seconds.

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Sitting practice

 

And she made it clear to us that despite the fact we got her a dog, she is actually more of a cat person. In fact, she’s so much of a cat person that she’s made friends with our notoriously grumpy cat, Juno.

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Sharing a bed with Juno

Of course, we’ve had plenty of challenges during the year. Miss Z’s seizures remain uncontrolled, despite being on a large number of anti-seizure medications. We had high hopes for the Ketogenic diet, but it didn’t make a difference at all. We had also hoped to give the doctors easier access for her regular infusions, IV antibiotics and blood draws with a portacath, but it became infected soon after it was inserted and had to be removed.

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Miss Z’s 5th birthday, spent in the hospital on IV antibiotics for the infected portacath

The gastro-jeujenostomy (GJ) tube that Miss Z had placed in January 2016, putting her food directly into her small intestine rather than her stomach to reduce reflux and aspiration (which had been causing her chronic lung problems) has been a major contributor to her improved health. It was a hard choice to make, but it was a good decision. However, over the course of the year, she has managed to pull her tube out three times – which had be surgically replaced under general anaesthetic.

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A rare smile in post-op

On a broader, more political front, there have been times during 2016 when I’ve really despaired over developments in the world. I’ve wondered at how selfish, insular and cruel people can be. How acceptable it has become to ostracize and demonize people who are different. How some politicians encourage and manipulate prejudice, fear and ignorance for their own personal benefit. And I wonder what kind of world it is becoming for my daughters – particularly Miss Z, who will always be “different”.

But there have also been people in our lives in 2016 that have reminded me that there is still goodness in the world. The teachers and teacher aides that talk about Miss Z with real affection and pride. Miss Z’s carers – and former carers – who really care about her. The nurses who have helped in countless ways to make things easier for us at the hospital or appointments. The doctors who have taken the time to actually listen to what I have to say. The people who have offered to help with Vegemite when Miss Z is unwell – they may not think they’re doing much, but it gives me such a peace of mind and it gives Vegemite a much greater sense of stability in her life. The physiotherapist who told me that seeing Miss Z always brightened her day and reminded her why she loved her career. The therapists who have spent hours helping to work out the best wheelchair and home modifications for Miss Z. The key workers who are helping me plan for Miss Z’s future. Vegemite’s friends, who just see Miss Z as her sister and not someone scary or weird. And a whole lot more people who have helped and been kind to Miss Z over the past year.

So, 2016 wasn’t all that bad for us. And 2017 is shaping up to be a very interesting year, too. But more about that another time…

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The reason you should never fall asleep when Vegemite is decorating the Christmas tree…

 

Agreeing to disagree

I’ve written about our detente with the Orthopaedic Surgeon over at Firefly this week. You can check it out here.

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She’s grumpy because its morning, not because of her new postural splint – honest!