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.

The drug routine

We've got plenty of drugs

We’ve got plenty of drugs

Several people have offered me pot lately. But they’re not trying to sell it to me – as much as I may look like I need to relax. It’s for Lil Z, because medical marijuana has had great results controlling seizures in some kids. How times have changed…

We aren’t at the point where I think we need to consider medical marijuana… yet. We have a pretty strict drug routine here at home for Lil Z. Although she has been on one combination or another of anti-epileptics since she was 7 months old, we seem to have stepped up the pace and complexity of our meds routine lately. So, I thought I’d share with you the routine which takes place every morning and every night (with a few drugs also administered during the day).

The first step is gathering all the meds and paraphernalia on the kitchen counter. This includes the meds, pill cutters and crushers, a mortar and pestle, clean syringes and room temperature water.

Is that all?

Is that all?

I usually start with the seizure meds, since they are the most important. Lil Z is currently on four of them, although we’re weaning off one. You can’t just stop and start anti-epileptics, it will take us 6 weeks to gradually take her off the med we are phasing out. Right now (week 5), she’s only on 1ml of Trileptal, which means as of next week, she will be off it completely.

Trileptal

Trileptal

She is also on Keppra – which I suspect is one of the most effective of her anti-seizure medications. She gets 5ml of that twice daily – which is the maximum dose she’s allowed.

Keppra

Keppra

She has been on Epilim for what seems like forever. I’m always suspicious of it because of its bright pink colour, but her Neurologist assures me that it is one of the best drugs for Lil Z’s type of generalised seizures. She gets 9ml of Epilim.

Epilim

Epilim

I should also note here that preparing Lil Z’s seizure meds is made amazingly easier by the clever little tops that pop into the bottle and allow you to put the syringe in, turn the bottle upside down, draw out the amount needed, and then flip the bottle right side up again and put the cap on it. Some of the medications come with these nifty little tops, but some don’t. It took me ages to get my hands on some and it was a huge struggle before I had them (tilting the bottle and trying to draw the liquid out with a syringe is near impossible, pouring it out into a cup to draw it up wastes lots of the medication. There is no other good solution – trust me, I’ve tried everything). Why pharmacies don’t sell or hand out these little tops I’ll never know… Since they don’t, I hoard them in fear that one day Keppra will stop including the tops with their bottle of medication.

Our new anti-epileptic is Topiramate. Unfortunately, this one only comes in tablets or sprinkles, neither of which Lil Z can take because it she doesn’t take any food or liquid orally. There are apparently only two pharmacies in the whole of Brisbane who will compound Topiramate into a liquid – and neither is located anywhere near us. Plus, any compounded drugs are not covered by Medicare or our private insurance (if someone can explain to me WHY this is the case, I’d love to know as it seems like an utterly ridiculous cop-out to me). So, I compound it myself – following strict instructions from the hospital pharmacy. I crush two Topiramate tablets and dissolve them in 10ml of water and then give Lil Z 8ml of the resulting solution.

Topiramate

Topiramate in the pill crusher

After the anti-epileptics comes the reflux medication, Omeprazole. We had the same compounding issue with that – although it was easier to find a chemist who could compound it for us since Omeprazole is quite commonly given to babies with reflux. But there was still the problem of compounded drugs not being covered. So, we cut, crush and dissolve this one, too. She gets half a tablet once a day.

Omeprazole in the pill cutter

Omeprazole in the pill cutter

She is also on Domperidone, which is intended to increase her gut motility – effectively pushing the food out of her stomach and into her intestines quicker. This helps because she vomits a lot, so it prevents her from bringing up too much of her feed. She gets a half tablet before every feed, but can’t have the Domperidone and Omeprazole at the same time. I cut, crush and dissolve this one, too.

Domperidone - in another of our seemingly endless line of pill cutter/crushers

Domperidone – in another of our seemingly endless line of pill cutter/crushers

Lil Z also takes a Vitamin D and Calcium supplement because these can be lowered by long-term use of anti-epileptics, which will weaken her bones. With her latest fracture, I suspect the doctors are going to consider other ways to strengthen her bones, but this is what we use for now. It is a tricky one because the pill is huge, so needs to be crushed with a mortar and pestle. It also doesn’t dissolve well, so I put it in a container and shake it vigorously and then suck it up into a syringe before the solution settles.

Grinding up the Vit D and Calcium

Grinding up the Vit D and Calcium

And finally, Lil Z gets 20-30ml of water before and after her meds. This keeps her hydrated and also helps to flush the drugs through her mickey tube.

Getting out the air bubbles

Getting out the air bubbles

All the syringes go in a handy take-away container, the pots and containers get washed up, ready to use next time.

Drying rack full of Z's accessories

Drying rack full of Z’s accessories

Now all that is left is to give them to Lil Z and hope she doesn’t vomit them straight back up.

And breathe.

No need to go through that all again for another 12 hours…

Note: I’m not the only one who does her meds – our very capable au pair usually does them in the morning during the week. QB does sometimes too, although he claims he’s out of the loop with how to do the Topiramate. Personally, I think it’s just his way of being able to go to bed earlier than me!

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The selection process (part 2)

After our first visit to the breeder, we started to get excited (and a bit nervous) about a puppy finally arriving. This whole assistance dog thing has been in the planning stage for so long that it was slightly scary to think we were finally putting our plans in action!

During the week, the breeder contacted me, saying that she was worried that we had ruled out the female puppies too quickly – and she wondered if I was really 100% on board with choosing a boy. I really just wanted the best puppy for Lil Z, but I had been a bit surprised that our trainer had ruled out all the girls so quickly, after QB expressed his preference for a boy.

To be honest, at that point, QB and I already had soft spots for the light blue puppy that had responded so well to Lil Z during our visit. But because this exercise isn’t about what we wanted (but what was best for Lil Z), we agreed to see all the puppies when we visited again the following week.

The drive to the breeder was slightly tense. Both QB and I were a bit worried that neither of the two puppies we had singled out last time would show any interest in Lil Z this visit, which would mean we’d have to start the selection all over again. And although the breeder had been incredibly patient and understanding – letting us go through a selection process first, before she assigned any of the puppies to their new owners – she couldn’t hold off forever. The other puppy buyers were desperate to find out  which puppy she’d chosen for them.

It was amazing how much the puppies had changed in a week. Their curly coats had started to come in and they were much more boisterous and less scared than on our previous visit.

Again, I sat with Lil Z and waited to see which puppies would pay attention to her. Unlike last time, they all came to investigate. However, the two boys who didn’t pay any attention last time were too rough with Lil Z – putting their paws up on her back and jumping around – and it was obvious she didn’t like it at all.

Others were better behaved. Lil Z enjoyed having her fingers licked and petting their soft fur. However, many of them lost interest and wandered off to play with Vegemite or with each other. A few others hung around, or kept going back to Lil Z. Like on our previous visit, we slowly narrowed the field to two puppies. The light blue boy was still showing interest and the yellow girl was as well.

Although a late entrant, the yellow girl was lovely. She obviously enjoyed being cuddled and was calm but very affectionate with Lil Z. It was a difficult choice. But after a chat with the breeder, we decided that she was probably not as intelligent as the light blue boy. She was more of a cuddler than a doer. If we were choosing a pet, we would have gone for the yellow girl. But choosing a future assistance dog, we went for the light blue boy.

Decision made. At last.

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First day of school

Several months ago, Lil Z and I were at playgroup at Red Hill Special School. I was chatting with one of the administrators. We were reflecting on how far Lil Z had come. When she started playgroup at around 1 1/2 years old, she screamed through it. She was by far the youngest – and the most disabled. The only session that she enjoyed during that first year was when we went swimming – and even then she only enjoyed it until the other children got in the pool.

Her second year in playgroup, she started off screaming, but a very calm teacher and a much smaller class worked in her favour. She still didn’t enjoy it, but for the most part she tolerated it. The school physio arranged for her to spend more time in the pool – which she loved, even when there were other children in the pool. She didn’t like the sensory room but she reluctantly started to enjoy music therapy. One of my proudest moments was the last playgroup session of the year, when Lil Z sat on my lap and was very obviously engaged and enjoyed the music.

January 2014 marked the start of her third year in playgroup. She was now the oldest in the group. She was no longer overwhelmed by the other children. She enjoyed music and bouncing on the trampoline. The school physio and our au pair fitted her in a walker and helped her to inch around the playground. Lil Z’s tolerance of playgroup is a rare example of her development and I cherish it.

But then the administrator surprised me. She told me that in the July term, Lil Z would be old enough to start Pre-Prep (in Australia, this is the equivalent of preschool and usually takes place the year before a child starts school. It’s not mandatory, but most children do two or three days a week to prepare them for school).

What?! Nooooo, I think you’re mistaken, I said, she’s just turned three. But the administrator said that at the special school, they start children at 3 1/2 years. Yes, Lil Z wouldn’t be quite 3 1/2 in July, but she thought Lil Z could handle it. And they had a great Pre-Prep class for her, with just two other children (both with multiple disabilities) in it.

I resisted the idea – I just didn’t think it would work. But when I told QB about it that night, he thought it was a brilliant idea. WHAT?! But she’s my baby…

I realised that I didn’t actually know what Pre-Prep meant for Lil Z. Sure, I knew what Vegemite had done in her Pre-Prep class, but how did that translate to a special school? Or for a girl with such limited communication abilities. So, QB and I set up a meeting with the school.

By that point, I’d compiled a mental list of all the reasons it was a bad idea. As I went through the list with the school officers, I realised that in their experience Lil Z is hardly unique. She needs at least one or two naps during the day, I pointed out. But of course, so do many of their students, and they’re used to them grabbing naps throughout the day. She has seizures, I declared. Of course, so do many of their students, and all the teachers are trained to deal with seizures and the school has a nurse for emergencies. Halfway through my list I realised that I really only had one objection: Lil Z is my baby. She was ready to go to school – I was the one who wasn’t ready.

So, over the course of the next two months, I shifted my mindset. This was a good thing for Lil Z and I was going to be positive about it… even if it killed me.

In the end, it didn’t kill me.

Lil Z looked so grown up in her school uniform and matching bow in her hair. She was miserable and cried all the way to school, but calmed down once we arrived. We went down to her classroom and she sat and watched the other little girl in her class play in the sandpit while her teacher and I had a long discussion on medications, emergency procedures, feeding protocols, and who they should call first – the ambulance or me. Not your typical ‘first day of school’ conversation, but obviously nothing new for Lil Z’s teacher.

The school physio, the deputy-head, the principal of the school, and her playgroup teacher all came to welcome Lil Z and celebrate her first day of school. A plan was even formed that if she became inconsolable, they’d call the physio (Lil Z  adores him) to give her cuddles. And the teacher assured me that if Lil Z was unhappy or not coping or unwell, she’d call me immediately.

During all the excitement and discussion, Lil Z fell asleep. She was relaxed and happy, so I gave her a kiss and left. Brave face for the school, but a few deep breaths when I got in the car.

I kept my phone close all day, but the school never called.

QB and I went to pick Lil Z up early – we’d arranged with the teacher to collect her about an hour and a half early since it was her first day and we weren’t sure if she’d cope with a full day. When we sneaked downstairs to her classroom, she was a bit grumpy. She was finishing off her lunch and was obviously ready for a nap. The teacher reported she’d had two cat-naps during the day, but had spent most of the day awake and happy. She’d enjoyed music and playing outdoors. In short, she’d coped better than I expected.

Best of all, Lil Z was so happy when she got home. She had obviously had a good day – and was happy to be home. She slept well that night, too!

So, the first day of school went better than I expected. Lil Z might be my baby, but she’s also ready to cope with one day a week at school.

I miss my baby, but I couldn’t be prouder.

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The selection process (part 1)

We now have a beautiful little puppy settling into life with us, but choosing that puppy was serious business. And it wasn’t a choice we made lightly. Or quickly.

Shortly after the puppies were born, I found the dog trainer we decided to use on our DIY assistance dog journey. I’d spoken with several trainers and they all claimed that they could help us. However, this guy actually had the experience and reputation to back it up. He could tell us exactly how he’d approach the job and what we would need to do.

We met with him one evening and he brought Woody, a labradoodle he is training to be an assistance dog for another little girl. He wanted to see how Lil Z interacted with a dog. I was a bit nervous (especially since it was nearly Z’s bedtime, so there was a risk of it all going wrong). But in the end, Woody flopped down on her feet and they both fell asleep.

The trainer had fairly clear views about selection. He said that it was impossible to know which puppy would be the best assistance dog. A lot of puppies are selected for guide dog and assistance dog training every year and are later rejected for all sorts of reasons that simply aren’t apparent when they are babies. So, we were not going to look for the dog with the most potential, but the dog who would bond best with Lil Z.

This, however, may not be as easy as it sounds. Lil Z is not a child that a puppy would naturally gravitate towards. She can’t run and frolic with a puppy or throw a ball or stick. She can’t even pat a puppy without assistance. And she makes unpredictable jerky movements with her arms and legs that cans startle you if you’re not expecting it. And she coughs – a lot. And swings her arms – hitting anything within reach. And kicks her legs – kicking anything within reach (and if she finds something with her feet, she loves to keep on kicking it). In fact, the only thing going for Lil Z in a puppy’s mind is that she smells interesting – nappy, feeding tube, dribble, vomit and a bit of Nutrini formula are a fascinating fragrance to a dog.

So, I was skeptical that there was going to be much bonding, but off we went, with the trainer, to see the breeder and the puppies, who were 6 weeks old by then. We all gathered in a small, enclosed area outside and the breeder let out the eight puppies. Vegemite was in heaven. She was swarmed by the cutest puppies you could imagine. The trainer was watching them all intently, in order to pick out the most dominant or most submissive of the litter, who wouldn’t make prime candidates. Even the skeptical QB was in puppy love.

Lil Z sat on my lap and we waited quietly to see who would pay attention to us. Only the puppies’ mother came to say hello. I was worried. What if NONE of them acknowledged Lil Z?

But eventually they came. Some just had a sniff and wandered off. Others hung around a bit more. Lil Z coughed several times and scared off several of the curious puppies.

During an earlier conversation with the trainer, we had suggested that we were leaning towards a boy (although we wanted the best one for Lil Z, regardless of gender). Why a boy? Well, the trainer believes they are easier to housetrain (the breeder disagreed) and QB wasn’t enthusiastic about having yet another female around the house (feeling outnumbered with 4 of us already). So, the trainer put all the girls back in their crate and we just mingled with the four boys, who were distinguished by the colour of their collars.

Two of them – green and purple – didn’t pay any attention to Lil Z. However, light and dark blue hung around, came back for a second and third look at her, and generally showed a bit of interest. In fact, light blue was so interested in all of us that when all his brothers and sisters fell asleep, he was still awake and interacting with us.

By the end of the night, the field had narrowed to the two blue boys. We decided to return the following week to see if they were both still interested in Lil Z and to make a final decision.

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