Having a laugh

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A rare smile from Miss Z

Miss Z doesn’t laugh. Maybe it’s because she doesn’t find my jokes funny, but more likely it is a developmental thing. Even as a baby she never laughed, and rarely smiled.

A few years ago, when she was seriously ill with chronic chest infections, Miss Z had a breakthrough day. She’d had a big course of IV antibiotics and suddenly she woke up one day and was much more alert and engaged than usual. I wrote about it here. It was wonderful. But it only lasted a day or two and then it was gone.

During her breakthrough day, she laughed with her sister. It was the first time I’d ever heard her laugh, and at first I wasn’t even sure it was a laugh. I got one video of her laughter from that day and it still makes me smile every time I watch it.


<p><a href=”https://vimeo.com/237032008″>IMG_6200</a&gt; from <a href=”https://vimeo.com/user22250250″>SEMeyers</a&gt; on <a href=”https://vimeo.com”>Vimeo</a&gt;.</p>

And then she stopped laughing and hasn’t done it since, until a few weeks ago. I’m not sure what changed or why, but she is laughing again. Not every day – it is still quite rare to hear her laugh – but she does it.

What breaks my heart is that I’m not sure if it is a “real” laugh or if it is a new type of seizure. There is a seizure type – “gelastic seizures” – which are characterised by uncontrollable laughter or crying. The first time she laughed, we were getting her ready to go to the hospital because she’d had two days of a “vacant episode” that I was concerned might be a prolonged absence seizure. QB and I were both a little stressed and getting her dressed for a night-time trip to the Emergency Department, when she burst out laughing. I didn’t know whether it was hilarious or horrifying.  It was completely out of character and there wasn’t anything obvious that she was laughing at (apart from her stressed out parents). In my mind, I wrote it off as a seizure.

Since then, she’s had more giggling spells, and these seem to be more in context. She laughs at her sister – a lot. She giggles when she does something to get QB or I to come check on her after she’s gone to bed in the evening. She chuckles when you give her a kiss or blow a raspberry on her. And her eyes sparkle a little, making me think that it is a sincere laugh.

We all love it when she laughs. You can’t help but smile when you hear it. One of the most rewarding and fulfilling things about being a parent is seeing your child smile and laugh, and it has been difficult to always see Miss Z so solemn.

But still, I can’t help but wonder. Her laughing is rare, and occurs mostly around the time of her vacant spells (which we still haven’t gotten to the bottom of, but that’s an entirely different story).  While I love it when she giggles, there is always a small part of me wondering if I’m smiling and laughing while Z has a seizure.

There really is no way to tell. At some point in the coming months, Miss Z will have a 24-hour EEG, so if she has a laugh during the test, the doctors might be able to tell. Otherwise, we will just have to go on guessing.

Click here to see a video of Z laughing that will definitely make you smile.


<p><a href=”https://vimeo.com/237662030″>Laughter</a&gt; from <a href=”https://vimeo.com/user22250250″>SEMeyers</a&gt; on <a href=”https://vimeo.com”>Vimeo</a&gt;.</p>

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More modifications

The girls headed back to school on Tuesday after two weeks of school holidays, leaving me to enjoy a week of calm. A week where I’ve been able to work a full day and not have to stop and start and then put in extra hours in the evening. And I need to enjoy it, because I may not have another week like this for a long time to come.

On Monday, the builders will arrive to begin ripping out our main, upstairs bathroom. (Our house is a Queenslander, which means all the living areas and the girls’ bedrooms are upstairs). It is going to be a massive job, involving removing all the bathroom fittings and tiles, moving a wall, lowering a floor and reinforcing the walls before rebuilding an entirely new, larger and accessible bathroom.

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This won’t be around much longer!

We are in desperate need of an accessible bathroom. Over the past year, Miss Z has gone from relatively easy to lift to long, gangly and heavy. Both QB and I have problems with our backs (necks, shoulders and hips) as a result of lifting her. And nowhere is it harder to lift her than in and out of the bath.

Until last year, Miss Z was able to have a bath in the bathtub with us lifting her in and out. She is unable to sit or stand, which has made it increasingly difficult. For a long time she used a baby bath chair to support her, and once she outgrew that, I didn’t fill the bath as full and propped her head on my feet. However, as she got bigger, it became increasingly difficult to lift her and step in and out of the bath safely.

At this point, we were advised that the best thing to do was get a shower chair and wheel her in and out of the shower. But Miss Z loves her baths. I mean she really, really loves her baths. And there isn’t much that Miss Z really loves and enjoys, so we didn’t want to take her baths away from her.

And so an organisation that supports Miss Z loaned us a raised bathtub. It just about fits in our bathroom and it means that we have to have the sink tap permanently connected to a hose to fill the bath, so it is far from ideal. But it was much easier and safer to lift her in and out.

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The raised bathtub

However, this year, lifting her from the floor (where she has a changing mat) and into the tub and back again became a greater and greater challenge. And with that challenge, came an increasing number of injuries, aches and pains for QB and me.

And so, once we competed the lift (elevator) installation earlier this year, we turned to planning the bathroom. It has been a very long, difficult process, involving a surprisingly large number of people. It started with just QB and me, talking about what we could do. Then we consulted her occupational therapist, who has been invaluable in the process of making sure we’re designing it for Miss Z’s long term needs, advising on all the specialist equipment, and organising the few bits of funding which are available to us. Miss Z’s physio also made suggestions – and in fact was responsible for the idea that transformed our thinking.

And then there were the equipment providers. The first one came, spent over an hour discussing how we could install a ceiling hoist, and then never followed up, despite numerous attempts to get a quote from him. Apparently, he just wasn’t that into us.

So, after a few months of trying to contact him, we had to find another ceiling hoist provider. Once we did, their equipment guy came round, then he came round again with an installation specialist, then he came round again with the installation specialist to meet our preferred builder. QB, who is great at designing and project managing these types of projects, came home from work early many days to meet with them and sort out the details. Over the past months, I’ve become accustomed to finding my husband and two or three other men hanging out in our bathroom, having a conversation…

And then there were the funding people, who also had to come round to interview me and then come round to inspect the bathroom and discuss the modifications we wanted to make. By this time, QB had a very clear vision of the design in his head – and on paper.

Of course there was also a lot of wandering around bath shops and looking online at various bathtubs and toilets and vanities and taps and showerheads… Again, I’m grateful that QB is good at this design stuff, because to be honest, I suspect I have rather random taste, although the $10,000 bathtub I spotted in one of the shops was truly lovely (and well above budget and probably wouldn’t have fit a bath support chair, but that’s beside the point…)

All this time, we still lifted Miss Z in and out of the bath every night. And then it became every other night, because we were both suffering from sore backs… But at last we’re nearing the end of the lifting.

If all goes to plan, we will have a larger bathroom (we’re taking out the walk-in closet in Z’s bedroom to extend the bathroom). The floor will be lowered so that she can be wheeled directly into the bathroom. There will be a ceiling hoist to lift her out of her chair. There will be a changing table to get her undressed. And then she can either be hoisted into the bathtub or there will be a hand-shower over the changing table, if we’re in a hurry and just want to give her a quick wash.

During this process, there have been two things that have frustrated me (although once the building begins, I’m sure there will be many more). The first is trying to make everyone understand that we don’t want the main room in our house to look like a utilitarian, public disabled toilet. This is our house. This is our main bathroom – it isn’t just going to be used by Miss Z. We want it to look nice as well as be functional. It took a lot of effort to get that message across to everyone.

The second was the constant insistance that Miss Z needed to be able to take a bath. Yes, the easy option is a shower, Yes, it would be cheaper. And I admit, that as she gets bigger, we may end up showering her more than bathing her. But the girl loves her baths. They soothe her. Some nights she lies in the bath with her eyes closed and is a picture of pure relaxation. Other times, she’s had multiple seizures and is screaming and a bath is the only thing that calms her down. Lying in a bath, listening to music is probably the best part of her day, and we are not going to take that away from her.

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Happy in the bath

So, now we’ve won our fights. We’ve chosen our taps. We’ve decided where the ceiling hoist track will run. All that is left to do is suvive the build.

Let the construction begin!

 

 

Hanging on the telephone

One of the outcomes of the big, multi-disciplinary meeting we had with several of Z’s doctors last month was a decision to push harder for Miss Z to join the medical cannabis trial that is starting in Queensland.

For those of you who might not follow the developments in the treatment of intractable epilepsy, it has been discovered that medical cannabis can reduce seizures and increase cognitive function in some kids with uncontrolled seizures. After a long battle in Australia, the use of medical cannabis has been legalised – hurrah!

However, there are still some hurdles to obtaining it, and when you can get it, the cost can be prohibitive (unless you’re buying from unregistered suppliers).

All the doctors I’ve spoken with are confident that within a few years, medical cannabis will be available for epilepsy as readily as any other antiepileptic medication. However, until then, the easiest and safest way to access it is through a medical trial.

So, when I heard that the Lady Cilento Children’s Hospital, where Z receives her medical care, was going to run a medical trial called the Compassionate Access Scheme, I signed her up – along with pretty much every other parent of a child with uncontrolled epilepsy in Queensland. Our neurologist was a bit skeptical at first – mainly because it isn’t a real scientific trial – all the kids receive the medical cannabis oil, no one gets a placebo. However, the promising early results made her decide that Z would indeed be a good candidate.

A week after our multi-disciplinary meeting, I got a call from the trial to arrange an appointment for Miss Z. I was so excited that I immediately took to Facebook, declaring Z had been accepted into the trial. Cue lots of celebration.

Alas, I was a bit premature. The appointment, it turned out, was only step one to joining the trial. And I also found out some fairly surprising news – that only 30 children across Queensland would be chosen for the trial. Only 30!

Miss Z was her typical self during the appointment. She was seriously unimpressed about being dragged into an early morning hospital appointment on her school holidays. So, she scowled at the doctor, and grizzled, and tried to kick him when he examined her. There was none of her typical Z-charm was on show that morning. In fact, the doctor asked me if she was always “so distressed” – which I tried to answer honestly without actually saying “no, it’s just you”.

The appointment established that Miss Z definitely qualified for the Compassionate Access Scheme. However, the next step is that her case – and those of other candidates – would be considered by a panel of doctors who would choose which children would be offered a place on the trial. If we aren’t offered a place on the trial, then we can go on the waitlist, so that we may be offered a place if another child drops out.

I left the appointment with a grumpy child (who cheered up immediately once we left the doctor’s office) and a promise that they would contact me when the panel had made its decision.

And so, now we wait. I feel like someone who has just been on a first date and is waiting to see if he liked me enough to ask me out again. Seriously. Did he like us? Will he choose us? Will he call?

I’ve even resorted to getting my friends to ask his friends if he is planning to call – although instead of friends, I’ve used nurses and her neurologist to try to find out when a decision might be made. QB is like my bestie, reassuring me that the doctor will call me – after all, I did three pages of seizure charts and graphs for him!

I keep running through the appointment in my head, thinking of how I could have made Miss Z’s case more compelling, better arguments for why she needs the treatment, examples of what she can achieve when she isn’t suffering multiple seizures a day.

Logically, I know the decision isn’t going to be made because he likes or dislikes Z, it will be on a medical basis, considering things like contra-indications with the drugs she currently takes, the risk of side effects and the options still available to us. But I still can’t help but feel like we are party of a beauty parade.

And is it even something we want to win? If she gets on the trial, it will be a big, fat declaration that yes, Z’s seizures really are that bad. It can be difficult to know what is bad versus manageable when you have a child with uncontrolled epilepsy. What is bad for her might not be so bad for another child, or vice versa.

Plus, despite positive results for some kids, it is important to remember that it doesn’t work for everyone. Medical cannabis is like the Ketogenic diet or the vast range of anti-epileptic medication Z has taken since she was 6 months old – it works great for some, OK for others, and not at all for others. And there is no way to know if it will work for Z until we try it.

So, I keep my phone close and wait to see if we get a second date.

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Sleepiness is one of the side effects of seizures for Z. If she has a big seizure or a cluster of them, she will often spend the rest of the day sleeping.

 

 

 

 

 

What we really need

There are a million articles out there in special-needs-parent-blogger-land about things to say or do for a parent of a child with special needs or who is medically fragile. But none of them cut to the real heart of what every parent of every child who is medically complex need: space.

No, not space to think, or relax, or to talk about their feelings – although those things are undoubtedly good. I mean actual space, you know, to put stuff. Because what no one tells you when your child is first diagnosed (or not actually diagnosed, as in our case) is you should prepare for their stuff to take over your house, starting immediately.

When we bought our house, we thought there was loads of space. I thought we would never fill the huge closet/storage space under the stairs and two-car garage, let alone the built-in wardrobes, laundry room (with closet), and other spaces. But we have. Mostly with Miss Z’s stuff.

It occurred to me today just how much storage space Miss Z requires when her nappy delivery arrived.

The Queensland government funds “continence aids” for children 5-years and older. A huge thank you to them for doing this – especially since once your child outgrows Huggies, the costs rise significantly. So well done them. Except, that the system for receiving continence aids means that you receive a bulk delivery of nappies every six months. That is a lot of nappies to arrive on your doorstep all at once. It looks like this:

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Incongruous juxtaposition: Michelangelo and a 6-month supply of continence aids

We also have to order Miss Z’s formula from a supplier. Fortunately, we can choose to order whether we want a one or two months supply. Since we don’t have the space for 16 boxes of formula plus a box of giving sets plus a box of bottles to give her water, I can only order one month at a time, which isn’t the end of the world, but does make me feel like I’m forever on the phone ordering more…

We also receive Miss Z’s mic-key tube extensions, syringes and suction machine supplies once every two months. I’m responsible for organising this order, so at least that gives me a bit of control about what and when we receive them.

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Formula, medical supplies… and cat food.

The formula and the medical supplies, along with the nappies, are stashed in the space under the stairs. They pretty much take up the whole cupboard and much of the storage space.

Since Miss Z spends most of her time upstairs, we keep smaller amounts of all these supplies upstairs, rather than running up and down stairs every time we need new formula or a syringe. They are stashed upstairs with her medications, the spare bottles of medication (because missing a dose of a seizure medication isn’t an option), the emergency seizure medication kit, the supplies for the G-J tube, Z’s diary, and other bits and pieces (because there are always lots of extra bits and pieces).

And that is just the medical supplies (well, most of them)! As she grows, Miss Z needs an increasing amount of equipment, too.

Some of it is small and follows her around every day – such as the suction machine and the feed pump. I recently picked up a new suction machine from the hospital. They proudly informed me that the new machines came with their own carrying bag. And then they presented me with a large, black bag that resembled a voluptuous old-school laptop bag. While it is well-intentioned, and I’m sure someone, somewhere will find a carrying bag useful, I’m never going to take the time to disassemble and pack the machine into its bag for transport. We might need it en route after all, and it is a lot easier to have it sitting beside her than trying to open a bag and attach the relevant bits when you’re trying to suction her in a car on the side of the road. Plus, the bag needs to be returned when I swap machines next year for servicing, which means I need to find a place to stash it – and where I’ll remember where it is a year from now.

Not all of Miss Z’s equipment is small, however. We have needed to start using a hoist to lift and transfer her in the playroom, where she spends most of her time (although truthfully, QB and I still just lift her ourselves most of the time, but at least we no longer have to worry about damaging the backs of Z’s support workers). The hoist is helpful, but it is huge. And there is nowhere to put it. At the moment, it also serves as a drying rack for laundry and if I forget to take off the sling, the cat uses it as a hammock.

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Just so long as you don’t want to sit in the blue chair, it’s fine…

We are also starting the process of modifying our upstairs bathroom to be accessible for Miss Z. For the past year, we’ve used a raised bathtub to bathe her, but that is becoming increasingly difficult as she gets bigger. An extra bathtub obviously takes up a bit of space. It’s a good thing it is on wheels, so it can be pushed back and forth, depending on if  you need access to the bedroom door, sink or toilet…

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A two-tub bathroom…

The other big piece of equipment, Miss Z’s new wheelchair, lives in the new elevator. Handy how that works out! And so far, we’ve managed to avoid a standing frame or walker at home – instead arranging for her to use one at school, which we can borrow on the school holidays. However, if her progress with the walker continues, I suspect one of those will be on the list soon.

And I won’t even mention the garage. I have rather a lot of stuff stashed there – both current equipment and things we no longer use. QB is constantly after me to “do something” with it all. I’m currently in denial. Or hiding.

The point of this all is that Miss Z needs an awful lot of stuff to meet her daily needs. And that stuff takes up an awful lot of room.

So the next time you wonder what you can do for that parent of a child with special needs? Offer them closet space. Really, it’s what we need.

Preparation

img_0382.jpgAfter several months of uncontrolled seizures, today we have a big multi-disciplinary meeting at the hospital. It was organised at the request of Miss Z’s neurologist, who I suspect may be running low on ideas about how to get Miss Z back to a better level of seizure control.

She requested that Miss Z’s palliative care doctor attend the meeting as well. Intellectually, I know that palliative care has a different meaning for children and that she probably wants him there to be part of the conversation on quality of life versus seizure control – but I couldn’t help but feel a bit unsettled.

Miss Z’s paediatrician will also attend, as she is responsible for managing Z’s overall medical care. And probably also someone from the nursing team that helps me manage Miss Z’s care, appointments, medications and resources at the hospital.

It isn’t often that you get more than one of Z’s doctors in a room at the same time, so I’m taking this meeting seriously. I spent the morning on data entry – putting all of Z’s most recent seizures into my seizure log spreadsheet. Since the raw data is a bit overwhelming to look at, I’ve also created several graphs and charts to help illustrate how things have been going.

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I have to admit being proud of this one, mostly because it looks good, even if it might not make a lot of sense!

I’ve printed out several copies, so that I’ll have enough to provide hand-outs at the meeting.

I have also written a list of questions I want to ask and topics I’d like to raise.

I’m also taking videos of several of Miss Z’s seizures, because it is much easier to show than describe what they look like.

Oh, and I have confirmed the room where the meeting is taking place and texted QB the location, so that we’ll all arrive at the right place.

Of course, things never go as smoothly as they should. Our car suddenly needed an emergency service, so I’m going to have to collect Miss Z from school, travel to the hospital and then home again using Uber and wheelchair accessible taxis. In the rain.

Preparation is everything.