With friends like these…

Lil Z doesn’t come cheap. On a monthly basis we pay for specialised childcare,  prescription formula (as well as the ‘giving sets’ to get the formula into her tummy), nappies, five different prescription medications, vitamins and non-prescription medications, private physiotherapy, private hydrotherapy, regular GP visits (not just when Lil Z is unwell, but also for prescription refills and referrals), private medical consultations, and sick bags.

Until now, we have more or less managed to limit our expenses to the list above, since Lil Z is small, easy to move around and can still use much of her baby equipment. But at 3 1/2 years old, 16.5kg (36lb) and 110cm (43in), she is no longer a baby and is beginning to require more and more specialised equipment for her care.

QB and I have postgraduate degrees and professional careers and we’ve always assumed that we would be able to provide everything our children need. So, it has been a bit of a shock to begin to think about Lil Z’s needs for the future. She will need at least one hoist, an adjustable bed (possibly with a specialised mattress for positioning), a special needs car seat, and either a bath or shower chair. We will also need a wheelchair accessible vehicle and either have to make major modifications to our house to make it accessible or sell it and buy/build one that accommodates Lil Z’s needs. And that’s just what I know about at the moment…

As we’re not permanent residents or Australian citizens, we are not entitled to government funding. We are covered under Medicare (the Australian national health service) and our private health insurance picks up a small share of the therapy and prescription costs (although they make it as difficult to claim as they possibly can). Add to that the fact that all special needs equipment is more expensive in Australia – thanks to the distance things need to be shipped and the smaller population. At the end of the day, a lot of Lil Z’s costs are simply out-of-pocket. And that means that for equipment, if we can’t afford it, we can’t have it, even if we need it.

This is something that I think QB and I struggle to get our heads around. I had a meeting not too long ago with our FECS social worker who was brainstorming ideas to help us raise funds for Lil Z’s equipment. I have to admit, every suggestion filled me with a personal feeling of dread. She said that we can’t expect to rely on friends and family to donate money, because they can’t contribute every time we need equipment. So, she suggested other types of ‘appeals’ we could make – all of which made me squirm in my seat. I’m not someone who asks for help easily – I’ve always been more of a do-it-yourself kind of girl. The times I have used our personal situation to fundraise (because I have done it), it was always for a charity, not for us personally. So suddenly turning our situation into a ‘fundraising appeal’ made me uncomfortable on a number of levels, not the least because it feels like something of a failure to not be able to provide all these things for Lil Z ourselves…

Enter two fantastic friends. The first, Hayley, is our personal trainer – and saver of our sanity. Both QB and I see her weekly and without our training sessions, I think we would both struggle to lift and carry Lil Z and also be grumpier, more miserable people. Exercise makes you feel better, even when it hurts. And 45 minutes of focusing on something other than the stresses of the day is the greatest kind of respite for us both.

Hayley has been on the Lil Z journey from the start – when QB signed me up to train with her as he solution for my post-natal depression. She let me bring 6-week old Lil Z to my training sessions, and although the thought of dragging a screaming baby into the city in my sleep-deprived state in order to work out seemed insane, it turned out to be just what I needed.

Although I no longer take Lil Z to my sessions – apart from the occasional visit – Hayley still keeps up to date on her developments. And although I’m sure both QB and I had been moaning about the fact we had to pay $6,500 for a special needs stroller for Lil Z, we were still surprised – and very touched – when Hayley decided to make her annual Christmas raffle a fundraiser for Lil Z. She got local businesses to donate some great prizes and the winning tickets were drawn at her Christmas party.

Miss Z pulls her hair in excitement over the raffle

Miss Z pulls her hair in excitement over the raffle

Although it then took AGES for Lil Z’s Otto Bock Kimba Neo to arrive, we are so grateful to Hayley – and everyone who bought a raffle ticket – for helping us with the cost of the stroller. And the good news is that it was worth the wait. She fits in it comfortably, it looks great, it is easy to push, and it has a detachable table, so she can use it at school. Not only do we use it for mobility, but it is also the best supportive seating she has – making it doubly useful.

Showing off her school uniform, fancy cast and her Kimba Neo stroller

Showing off her school uniform, fancy cast and new Kimba Neo stroller

The second fantastic friend is Ali, who I met over 6 years ago now in antenatal classes in London when we were both expecting our first girls. She’s always been a great source of support, even though I’ve since moved to a different continent…

Earlier this year, Ali decided to do a triathlon and to use the opportunity to fundraise for Lil Z. Again, I was both surprised and touched at her offer to help. And so, I suggested she fundraise to get Lil Z a Upsee. For those of you who don’t know what I’m talking about, an Upsee – a very simple harness-type device to help non-mobile children to walk – has recently taken the special needs world by storm.

I think it will be perfect for Lil Z as I really want to encourage her to engage more in the world around her. Ali wasn’t sure how much money she was going to be able to raise, but one of the great things about the Upsee is that it isn’t extortionately expensive, so I reasoned that if she didn’t raise the full amount, we could afford to pay the difference.

As it turned out, Ali raised far more money than what was required to purchase the Upsee and so was able to not only provide us with some new, cutting-edge equipment, but also make a very generous donation to Rett Syndrome research! Oh, and she rocked her triathlon (which wins her double respect!).

Again, fate wasn’t so kind to us, since the much-anticipated Upsee arrived on the day Lil Z fractured her leg for the third time. After six weeks in a cast, we’re now waiting until she begins treatment for fragile bones before we try out the Upsee. It is disappointing – not the least because I am desperately keen to make a video of Lil Z dancing in her Upsee to say thank you to all the people who generously sponsored Ali for her triathlon – but I’m sure it will be worth the wait.

Our Upsee

Our Upsee

Due to circumstances beyond my control, Lil Z’s medical emergencies and general life and laziness, I haven’t been able to say thank you to either of these fantastic people as thoroughly or as loudly as I wanted. But their efforts have been very much appreciated.

The cost of raising a child with special needs is huge, but with friends like these, it all feels possible.

Pulling her hair out

QB and I have a long-running and fairly inappropriate joke. It is about how Lil Z doesn’t in fact have a chromosomal disorder, she’s just inherited all the crappy genes from both sides of our family. So, she doesn’t have microcephaly, she has just inherited my pin head (I do indeed wear kids’ swim goggles and share a hat size with my 6-year-old). Hand-wringing, fussy eating, anxiety, grumpiness, lack of talking – they can all be blamed on someone in her extended family. And the crowning characteristic (both literally and figuratively) is her hair.

Lil Z’s hair is as crazy and unpredictable as she is. It is thick and wild and grows every which way. It defies hair clips and buns and all but the strongest and stretchiest of hair bands.

Hair that even defies EEG caps!

Hair that even defies EEG caps!

It is, without a doubt, inherited from my side of the family – my mother’s side of the family, as a matter of fact. I, along with my brother, mother, and a number of cousins, all have variations on this crazy hair. Her wild and crazy family hair is one of the things I love about her. Even if it drives me crazy trying to tame it every morning.

I'm havin' a bad hair day It's about time that I get my way Steam rolling wherever I see Huh, despicable me

I’m havin’ a bad hair day
If you take it personal, that’s okay
Watch, my hair is so fun to see
Huh, despicable me

For the longest time, Lil Z showed that she was unhappy, in pain, bored, frustrated or otherwise unhappy by scratching her ears. Sometimes it appeared to be voluntary – and at times she even used it as a demand for attention. Other times, it seemed to be an involuntary repetitive action that she didn’t enjoy any more than we did.

Most of the time, I tried to address the problem by keeping her fingernails well-trimmed and during periods where she was doing a lot of scratching, I would put socks, mittens or leg warmers over her hands so that she couldn’t inflict too much damage on herself. Still, there were occasions when I couldn’t intervene and she’d give herself a gash on her ear that would bleed everywhere.

Her therapists and I attributed the scratching to a combination of her sensory processing problems (she doesn’t feel pain or other sensations the way we do, so seeks out ‘stronger’ sensations to compensate) and her Rett-like repetitive hand actions. Lately, we’ve been pleased that the ear-scratching has decreased substantially. But, of course, we were celebrating too soon.

Enter the switch from ear scratching to hair pulling. It started with Lil Z enjoying putting her hands behind her head to feel her hair. I thought this was quite sweet, especially as I like the feel of her soft, fluffy hair, too. Unfortunately, it turns out that she was just getting started. Fondling her hair turned to grabbing it and giving it a hard yank – usually strong enough to pull out a handful.

The au pair and I have been fairly diligent about not letting her pull her hair. As with ear-scratching, it is a combination of repetitive activity and a sign of frustration or pain and she is most likely to do it when she is tired. It is fairly easy to disrupt because along with learning to pull her own hair, Lil Z has also recently learned to hold your hand – and finds holding hands very calming. So, as long as you hold her hand, she’ll desist from pulling her hair. Of course, this isn’t particularly conducive to achieving anything else, but at least it works.

However, it is a different matter at school, where she is more often frustrated, and not quite as closely monitored at home. A few times the au pair or I have been horrified to find her pushchair covered in hair that she’d managed to pull out during the school day.

Recently, the hair pulling seems to have become worse. She’s had a few bad days where she’s pulling at her hair almost constantly. And she does it at night in bed – leaving me to find tufts of hair covering her sheets the next morning. As a result, she’s got a bald spot in the back of her head – where she’s managed to pull out nearly all her hair. Soon, she’ll look like a little old man from behind, with a fringe of hair around the base of her head, and then nothing.

The result of all that hair pulling

The result of all that hair pulling

Strangely, especially since the ear scratching often involved her drawing blood, I find the hair pulling more distressing. I think I’d hoped she had outgrown it – because at the end of the day, she’s hurting herself (whether its sensory seeking behaviour or repetitive activity or stubbornness – it doesn’t really matter) and that in itself is upsetting. There is also no worse feeling that going to get her up in the morning and finding her bed full of hair – which she was silently pulling out while I slept. If that doesn’t make you feel like a bad parent, nothing will…

It is also distressing because it has to do with her appearance. I’m conscious that she already stands out as different, and the bald spots just make her more different. As Vegemite summed it up: “its embarrassing to have a sister who is bald”.

But worst of all, it’s that she is pulling out her hair that I love so much. It makes me laugh and reminds me that despite everything else, she’s still part of the family. So, the fact that she is pulling it out – even if it’s not intentional – is heartbreaking. Her hair is part of her personality and I don’t want her to lose it.

Hair pulling is pretty common amongst girls with Rett Syndrome (see this for a great blog post about hair and Rett Syndrome). So, I turned to some mothers of girls with Rett Syndrome for advice. The advice was pretty conclusive: her hair needs to be cut short enough that she won’t be able to grab it. If her hair is kept too short to grab for a while, it will break the cycle. No doubt she’ll find some other way to express her unhappiness, but at least it won’t leave us choking in a cloud of hair.

So, it is goodbye to the “palm tree” ponytails, the two tiny buns that look like little horns, the messy buns and cute ribbons that fall out almost as soon as you put them in.

Welcome, to the new look Z…

Yes, we kept the palm tree...

Yes, we kept the palm tree…

But the back is now too short to grab.

But the back is now too short to grab.

Just focus

My to-do list runneth over

My to-do list runneth over

QB and I were watching one of those property programmes the other night where a team comes in to help out people who are struggling to sell their house.  In this episode, the couple had started renovations, then had some changes to their lifestyle, and were simply unable to finish anything. When questioned about the fact most of the rooms were nearly done, but missing a few crucial elements, the failed renovator explained that everything had an order: you had to put in the window before you finished the skirting board, before you could do the floor – and that made it all just too hard.

I know just how they feel. My to-do list runneth over. Seriously. And my head is going to explode with all the bits and pieces I’m trying to remember. But I feel like there is so much I’m not achieving because it has to go in a certain order, and the start of it is just too hard.

A good example is Lil Z’s feed pump. Her old one (which was beginning to get a bit dodgy) is due a service. So, the company sent us a new one and a label for me to organise the return of the dodgy one. The new pump arrived in the midst of a lot of other things happening, and the instructions for the return of the old one arrived a few days later. During the interim, the cardboard box that the new one arrived in was recycled. But of course I later learned that the old one needs to be returned in the box the new one arrived in. Doh!

Now, this isn’t exactly a unsolveable problem. We have LOADS of cardboard boxes. All I need to do is find one of the approximate size. But then I wondered if I should call to ask if I could send it back in a different box. Then I forgot about it. Then the label languished in my massive “to do” pile for a while. Then I remembered it, started to do it, then hit the problem of needing a box again, and the search seemed too hard, so I put it off instead. This morning I spotted an appropriate sized box in the garage, complete with those little packing peanuts, so I’ve got very little excuse now, so here’s hoping I’ll get it sorted before the pump company lands me with a bill for the pump…

Put this on a grand scale and you’ll know how I’ve been feeling about work lately. In July I became freelance – something I desperately want and need to work because I don’t know how I’d actually manage if I had to work in a full-time job outside the home, and as all working mothers know, there are virtually no part-time jobs for professionals.

I started with a determination to make it all work. Then I got swamped with work from my previous company, so I was busy doing that instead of setting myself up and marketing my skills to other people. And now I just feel like I’ve run out of steam. With no urgent deadlines looming, I can’t seem to get anything accomplished. It all just seems too hard. Plus, there is an order to things. In order to market myself, I need to send out my CV. In order to send out my CV, I need to update it. In order to update it, I need a professional-looking email address. In order to get a professional-looking email address, I need to get a web domain. To do that, I had to navigate a whole bunch of issues that I don’t really understand as I’m not particularly technically minded. And so, it all became too hard.

Then a friend who is much more technically minded gave me some advice and steered me in the right direction. So, I’ve got the necessary email address now. But now I need to update and proof my CV, and I seem to have ground to a halt again.

Part of the problem is that at the moment I neither feel particularly professional, nor do I feel motivated to get out there and win work. Work, after all, has to be done – and when you’re a freelancer it has to be done with bells and whistles to make sure you’ll be hired again – and that can be hard to fit in with so much else going on.

During a (rather heated) discussion with QB the other day, he said that I spend all my time focused on Lil Z – even when I’m working I’m at home and on call should the au pair need me – and that as a result, I’m always living in the present tense. It’s all immediate needs, prescription refills and organising appointments. Although I’d argue that I focus on Vegemite as well, he’s got a point.

Everything else can seem hard because it is nearly impossible to switch off the focus on Lil Z.

So, this morning, I decided to “mind map” everything that I’m currently thinking, worrying about, organising, researching and doing with Lil Z. I will probably be thinking of more things to add for the rest of the day, but it surprised me how much there is.  And how much has changed from the last mind map I did (which was almost 2 years ago, I think).

Zoey mind map 2014

I was hoping that getting it all down on paper might help me clear my mind and focus. No such luck, I’m afraid.

It did, however, let me procrastinate a bit more on returning that pump…

A bracing development

As I mentioned in a previous post, I was less than impressed with the Orthopaedic doctor we saw at the scoliosis clinic… and as a result, I’ve been less than enthusiastic about the back brace he commanded that Lil Z must wear.  I was surprised by how quickly we got an appointment to do a mold of Lil Z’s back (especially as it required her to be put under general anaesthesia, which meant time in the operating theatre). However, no one really told me what to expect after the mold was made and I was quite happy for them to take their time making her brace.

Two weeks ago, however, the clinic that made the brace contacted me to book an appointment for it to be fitted. Again, I was seriously lacking enthusiasm.

Add to that the fact that poor Lil Z always seems to have the worst possible timing. Her puppy arrived and she ended up in hospital the next day. Her back brace arrived and the day before the fitting, she broke her leg… again.

And yes, I did say another break. We couldn’t believe it either. And the doctors in the Emergency Department almost didn’t believe it at all… If there is a positive side to Lil Z having three leg fractures now, it would be that we know the signs and that gives me the confidence to insist that something is wrong – even when it is incredibly difficult to put your finger on what, or where. It may sound bizarre, but one of the biggest signs is that Lil Z gets clammy hands. When I decided to take Lil Z to the hospital, I phoned QB and told him Z had clammy hands, to which he immediately responded “oh no, not another break!”

That Lil Z has broken various bones in her legs three times in her three short years – and none of those times can we identify anything that could have caused the break – worries me hugely. But I will save that discussion until after we’ve met with the specialists next week and have a better idea of what it all means and what we can do to prevent it happening again.

Lil Z’s broken leg immobilized in a cast made me feel even worse about the back brace. One of my greatest concerns about the brace from the start has been the discomfort factor. They’re hot, restrictive, uncomfortable and can cause pressure sores – and they’re meant to be worn 23 hours a day.

I know the scoliosis is a serious issue that can cause severe medical problems, including compromising her heart and lungs, as well as hindering her development. But at the same time, I have worked hard to get Lil Z happy, beginning to engage in the world around her, and sleeping through the night (which is essential for her development and my sanity). If a brace reverses these things, it essentially gives her a poorer quality of life. And that to me is as serious as the potential risks from scoliosis.

So, it was with a heavy heart that I took Lil Z to be fitted for her brace – known technically as a Thoraco-Lumbo-Sacral-Orthosis (TLSO). But I was actually in for a bit of a surprise.

The doctor who made her brace and fitted her in it was lovely. Totally unlike the scoliosis doctor. And he knew what he was doing. Apparently Lil Z’s brace was the 6,232nd TLSO he has made in his career – so the man has a bit of experience. He showed us how to put it on and take it off, and he marked how tight and where each velcro loop goes on the back of the brace (which looked a bit crazy at the time, but makes perfect sense now).

And the brace wasn’t so bad either. It doesn’t come up as high as some of the others I’ve seen. And it has a hole for her feeding tube (I’d been told apocryphal stories of having to remove the brace every time I needed to access her mickey button). And it was a lovely shade of “cupcake icing pink”.

Even more surprising is the fact that Lil Z doesn’t seem to mind wearing it. At all. The doctor recommended building her time in the brace up gradually. However, a week and a half on from the fitting, Lil Z can do a 20 hour stretch in it without any problems. She goes to sleep in it easily and it doesn’t seem to bother her at all during the night. And it is certainly not affecting her quality of life during the day, either.

This is such a massive relief, especially since the doctor thinks that the brace is really going to help Lil Z’s spinal curve. If Lil Z is lucky, she will spend the rest of her life in the TLSO. If she develops as the scoliosis doctor expects she will, she’ll wear the TLSO until she stops growing, at which point they will do surgery to insert metal rods into her back. And if she’s unlucky, the brace won’t work and she will have to get the spinal surgery earlier – and then probably again later to adjust it as she grows. So, unless things go badly wrong, Lil Z will be wearing her brace for a long time, and its good to know that doesn’t seem to be a problem for her.

Of course, new equipment (if you can call a brace ‘equipment’?) always comes with its own challenges, but these seem to be mainly for me, not Lil Z. For example, picking Lil Z up when she’s wearing the brace is definitely harder, not to mention between the brace and the cast, she’s now at least a kilo heavier. And the doctor suggested she wear a singlet under the brace, but then it is impossible to access her mickey button – so I’ve been cutting holes in all her singlets… The only real problem for Lil Z seems to be that the brace might cut into her legs a bit when she is sitting. But it is hard to tell when she has a cast on her left leg from toes to hip, so I’ll wait til the cast if off before I start lobbying for changes to her TLSO.

I always like to be right. But after several months of worry about Lil Z’s back brace, now that it has arrived, I’m quite pleased that in this case at least, I was wrong.

The snazzy new brace

The snazzy new brace

It’s all in the PR

she is in the roomIt was bound to happen some time. Lil Z has been going to the Royal Children’s Hospital (RCH) for over three years now. All her doctors are based there and all her medical procedures are conducted there. Over the years, I’ve been amazed at the kindness of the staff at the RCH. The doctors, nurses and technicians that we’ve encountered have, in general, been competent and lovely people who have always shown Lil Z respect and taken the time to explain and discuss Lil Z’s issues and my concerns – however long that may take. But it was always too good to last.

Our run stopped when Lil Z had her first appointment at the scoliosis clinic. And it was a bit of a shocker. The Orthopaedic doctor didn’t acknowledge us when we entered the examination room, he didn’t ask one question about Lil Z, and he didn’t examine her, let alone look at her. He looked at the x-ray on his computer and declared that her scoliosis was advancing and that the only course of action would be to fit her for a back brace, and that she would remain in a brace until she stopped growing and major spinal surgery to insert metal rods into her back could be done. He then pulled out a form and had me sign it, saying that in order to make the brace, she’d have to have a mould done under general anaesthesia.

None of it was what I’d expected, and by the time my brain started to formulate some questions, we’d been hustled out of the exam room and a new patient had taken our place.

I was stunned. A back brace? That is a major development. And I know instinctively that she’s going to hate it. HATE it. And I have so many questions, such as what will the brace look like? What will it be made of? How many hours a day will she have to wear it? How will it work with her mickey button? Will it stop the scoliosis progressing? And why has the scoliosis suddenly begun to progress so quickly in the first place? I couldn’t believe that the doctor hadn’t told me anything apart from his course of action. And even if I had the presence of mind to ask all my questions during our brief appointment, I’m not sure he would have been the type to listen to my concerns and address how the brace is going to affect Lil Z’s day-to-day life. Because the impression he gave was that none of that mattered.

I’ve mentioned to a number of people how rude and unhelpful I found Ortho and every single one of them said that Orthopaedics has a reputation for poor people skills – focusing only on the solution to their particular problem.

One of Lil Z’s therapists sent me this, which kind of sums it up:

(if you missed the joke, the patient is dead, but he’s still focused only on the broken limb).

A few weeks later, Lil Z was scheduled to have the mould for her back done. I very grudgingly took her to the hospital for the procedure – after a last-minute hope that they wouldn’t be able to do it since her leg was still in a cast. The doctor was actually in the operating theatre when I carried Lil Z in for her anaesthetic – but he didn’t acknowledge me. It just made me angrier and more against the back brace.

Here’s the thing – public relations is important when you’re dealing with children and their parents. I’m sure that the Ortho doctor knows what he’s doing, but I want the information and evidence to reinforce it in my mind. Because at the end of the day, I am the one who will be dealing with the miserable child in the uncomfortable brace. And even more importantly, I am the one making a decision about the well-being and happiness of my daughter.

Let me give an example. Lil Z has been put on a new anti-epileptic drug called Topamax. It has all sorts of nasty side effects, including kidney stones and vision problems. I raised my concern about the side effects at Lil Z’s latest Neurology appointment. The Neurologist explained to me in detail why he thinks Topamax will work well for Lil Z’s seizures. And he discussed the risks of side effects from the medication and how he believes that the benefits will far outweigh the unlikely risk of a severe side effect. It made sense and I am now happy for Lil Z to remain on Topamax.

If the Ortho had taken the time to explain to me why a brace was important and how its benefits will outweigh her potential unhappiness, I would have accepted it. But by refusing to provide me with enough information or address my concerns, he’s made me dread the arrival of the brace.

Today we had an appointment with Lil Z’s new paediatrician. He is as lovely and as willing to take the time to discuss Lil Z’s issues as her previous one. I raised the issue of the back brace and how much I was dreading it with him. He acknowledged that Lil Z will HATE it. But he also told me about how if her scoliosis advances further, it will begin to affect her lungs and start to cause breathing difficulties. And if it worsens further, it could even affect her heart. I had no idea that scoliosis could be that serious. He also discussed how left unchecked, Lil Z would develop a greater and greater curve in her back, making it nearly impossible for her to use standard equipment like a standing frame or wheelchair. And that the longer we can keep her scoliosis in check, the longer we can avoid the surgery – which is only a good thing.

After our talk, I still don’t feel good about the brace. It is hard to make a decision to inflict something on Lil Z that will impact her happiness, when she already has a limited amount of happiness in her life (thanks mainly to the seizures). But, I now understand why it is important and will actually make a greater effort to ensure she stays in the brace as long as she will tolerate it.

See, a little PR goes a long way.