Saturday, 1 September 2012

This "suits" us!

There are many views on what can be done to help kids and adults with Cerebral Palsy. The options vary widely, but everyone agrees on one thing.

There is no cure.

So while other parents of "sick" children look for ways to cure their conditions a parent of a CP child searches for ways to improve their abilities.

This is mostly achieved through physical therapies. Bree sees a number of people for therapy sessions including a Physiotherapist, Occupational Therapist and a Speech Therapist.

Every day we spend time doing some form of therapy with Bree. This is to help her learn to use her muscles properly. We attempt to correct her movements by teaching her brain a new way to do things.

It is a medical and scientific fact that the brain is "plastic". It is always developing. When a baby first learns to put their fist to their mouth it is by accident, however by attempting that same movement over and over (say a hundred times) the brain develops "pathways" which eventually allow them to do it with ease.

This is true in all cases of development and learning. The body has to do the exact same thing again and again for the brain to "remember" it. That seemingly simple movement your eyes are making right now as you read this is only possible because the brain developed a pathway early in your life to allow you to deliberately scan left to right.

In the case of a child with Cerebral Palsy the areas of the brain dedicated to "remembering" these movements are either absent or remarkably thin. It is for this reason that a person with CP has much, much more difficulty in controlling their movements. Through therapies children learn how to use their bodies. Through thousands of repetitive movements of the exact same nature their brain eventually develops new pathways to remember.

So you can see how a child with Severe Cerebral Palsy (that affects all of their muscle movement) achieving something as simple as deliberately reaching for a toy is such a HUGE deal.

We have long aspired to having Bree walk, we are a long way from seeing this become a reality, but we refuse to let anyone tell us it's not possible.
There is a lot involved in this dream! A lot of hard work! A lot of therapy! A lot of determination!


Bree has just been given the opportunity to attend a 4 week Intensive Physiotherapy Program which uses a specialised suit (soft dynamic proproceptive orthosis) called a TheraSuit. This suit will hold her body in the correct position to enable her to perform activities as they are meant to be done.
By wearing this suit for all of the therapy sessions she will be maintaining the exact same position every time.
This is a massive step forward in teaching her brain to remember and we are expecting great things from the program.
We will also be given the opportunity to purchase the suit and use it in our own therapy routines once we have completed the course. Which of course we will!

This is so exciting...
and so expensive...

The suit alone costs upwards of $2500.
A week of therapy is also $2500.

so 4 weeks of therapy plus the suit will set us back around $12 500 and that's without travel and accommodation costs!

But it is so worth it!!

If you could give your child the opportunity to gain control over their own body wouldn't you do it?

Wednesday, 22 August 2012

An Update...

I haven't written a post for quite a while. Partly because Bree also has a Facebook page ( for updates on her health and general goings on, but mostly because I haven't particularly felt the need to say very much.

Lately though everything has been playing on my mind and I feel if I don't share it I might not be able to handle the next thing that comes our way.

So this is what you may have missed

Bree started having blue episodes at the end of May, these lasted less than a minute, but were a concern as she wasn't breathing during this time and was visibly distressed, they started occurring quite frequently.
She also had been having recurrent chest infections and pneumonia for 14 months.

In early June, after some tests, scans and observations it was determined that the blue spells were caused by laryngospasms (the larynx was tightening) and the ongoing chest issues were due to aspiration (foreign objects such as food and saliva falling into the airways and lungs). The main reason behind this is Bree's poor swallow, however a change in medications helped solve both of these problems by reducing the amount of excess secretions which could accidentally enter the airways.

Due to the aspiration risk Bree is now Nil By Mouth, this means that she can only be fed via her PEG (tube straight to her stomach) and the long term prognosis is that she will never feed by mouth (we disagree, but time will tell).

An EEG (a scan used to detect and monitor epileptic activity) showed that Bree's Infantile Spasms (a form of Epilepsy which only affects children under the age of 2) were no longer present. This meant that her seizure medications could be changed and one was ceased immediately.

Bree turned 2!!

The seizure drug that had been ceased in June was a med that also works as a muscle relaxant. Without it in her system she started showing huge improvements physically including improved head and trunk control (essential to sitting, standing and well... everything). However her temperament was not so good. Was it pain, discomfort, irritability, anxiety or did she just want hugs? Regardless of what had caused it we had to assume that it was a reaction from coming off the medication. We also had to trial a new seizure med as even though Bree should have outgrown her original form of Epilepsy this doesn't leave her in the clear and often a harder to treat, different presentation of seizures can develop.

That brings us to...

A week after trialing a new seizure med we decided that the side effects far outweighed any benefits, Bree was not sleeping for days at a time, not even a catnap. She was even more irritable than before.
As she was on a small dose of this new drug and it did not appear to be needed it was ceased (on doctor's orders) immediately.
Two nights later we were actually discussing that perhaps Bree had outgrown her Epilepsy, it is rare, but possible with her condition. We were talking about how good things were going and how if we could make her less grisly that life was pretty good...

Three hours later I watched her little body twitching as she chewed her lip and stared at me blankly.

Bree had a seizure which went to status (needs a special medication (called a recovery drug) to make it end). After an hour it was finally stopped, but the drug that was used is a heavy muscle relaxant and one of the risks associated with it's use is that it can cause respiratory failure. Bree responded to the recovery drug straight away and lost consciousness (that's an expected result), but her breathing which had already been quite laboured during the seizure (she was on oxygen to help) slowed to 2 breaths a minute and then stopped. She had to be "bagged" which is a nice way of saying that her lungs had to be inflated manually (the same as the breathing part of CPR).

A little bit more happened during that time, but some things are better left unsaid and suffice it to say that if it wasn't for some wonderful and competent staff at our local hospital we would have lost our little girl.

Bree made a full recovery though and we took her home 4 days later much to the surprise of the medical team involved in the whole scary ordeal.

A week later (last week) we went back to hospital again, luckily it wasn't a seizure this time, but we didn't tell many people what was really going on because personally I am sick of Bree's life being a constant drama. We kept our Facebook statuses vague and I would have kept it out of public knowledge altogether if I hadn't slipped up by mentioning the emergency waiting room in one of my random whinges! Because I want to stay true to my word about sharing our experiences and being honest (dammit) I've decided to share it after all. I apologise to those friends and family who I was not completely honest to.

Bree had started bleeding from her PEG on the Sunday and as that could mean so many different things (it's a direct entrance to her stomach) she had to be admitted to hospital and have countless tests.
She also had a temperature that would not go below 38.3 degrees.
It turned out that she had a virus (RSV) which she had picked up in her previous stay and in trying to control her temperature we had aggravated her stomach with the Nurofen (which it would seem she cannot use).
Her stomach had to remain completely empty for 3 days to allow the stomach and bowel lining to grow back so she was kept on IV fluids for that time.
During the same admission she was also classed as Failure To Thrive (again). This means that her weight compared with others of the same age is too low on the charts and has dropped dramatically from her previous reading. Rightly so as she now weighs exactly 10kgs. At a length/ height of 86cm that is quite light.

Although the particular virus Bree had is harmless to a regular, healthy child, it made her incredibly unwell and she had to be placed into isolation to remove risk of further infection. There was a lot of concern about how long she would be in hospital due to her health and there was increasing concern about her prolonged high temperature readings. Of course the main concern was centered on her weight. It is not ideal to remain on a drip for any length of time as your only form of nutrition and it is definitely not advised in underweight children.

In true Bree style though just as we thought things could only get worse she picked up the next day and 24 hours later on the Wednesday was headed home.

Amongst all of the stuff this month Bree is progressively getting more and more irritable. I've come to the conclusion that it is pain due to her muscles being overly stiff. That is the nature of her type of Cerebral Palsy. Her muscles cannot relax like a regular person's. We physically have to help her when she stiffens up and there is only so much we can do for her. Even when she is "relaxed" her muscles are still tight.
Tight muscles lead to muscle contractures and muscle contractures lead to weak bones. Weak bones lead to Osteoperosis and that leads to fractures. This is the "hidden" side of this condition. When you see a person with CP holding themselves in strange positions you don't consider the pain it must be causing to their little bodies, but if you think about how your muscles feel after a good gym workout then you can relate a little to their pain and discomfort. If you've ever broken a bone then you can relate a little more.

So that's our medical stuff up to date from the last post...
If you think it's a bit to take in just reading it, you should try living it...

I suppose reading over this it is understandable that we feel like it's all a bit much lately. It makes sense that our energy levels would be low, especially since Bree still won't sleep more than 3 hours at a time. But the honest truth? The real reason we can't deal with anything else right now...

We feel so alone in this journey...

We have many people in our lives, wonderful friends who care, wonderful family who love us and help where they can, but we don't have anyone that lives our life and knows what a regular day for us consists of.
No one is walking our path with us and even we aren't walking the same path as each other.

I write this blog in the hope that I can share our story with others sharing the same ride. I hope someone comes along one day and goes "Oh wow, that's exactly how I feel". I hope that by being honest and open I can help someone else who is struggling along.

So in keeping with my promise I have to tell it how it is

Being a parent of a complex child is hard. It is isolating and it is overwhelming. It is something that you will never relate to if you don't experience it yourself.


For all the inspirational quotes in the world you will still not find one person who is happy that their child has to suffer like this.

Thursday, 24 May 2012

Realistic Expectations

Sitting here with a pen and piece paper I'm trying to write a list of realistic expectations for Bree's development. The things that we would like to see her do in the upcoming months and years.

As part of Bree's induction into Cerebral Palsy League we have been asked to list our long term goals for her. It's supposed to be a way to work out what we want to achieve and what we need to do to get her there. But for us it feels like a hard slap in the face, a bucket of icy water thrown over you on an already freezing cold day. For us it's a harsh reminder that Bree won't be able to do so many things we all take for granted.

What do we want for our little girl? 
We want her to lead a normal life. We want her to walk and talk and run and play. We want her to be an average, normal kid that plays sports and does dancing, learns to swim and rides a bike. We want her to grow into a cheeky child, a typical teenager and a lovely lady. We want her to do well at school, have a successful career, meet a wonderful guy, succeed in every aspect of life. We want her to enjoy her life and have every opportunity available to her. We want what any parent wants for their child, we want her to be happy.

But, we don't get that and neither does she. We don't get the excitement of those first steps, that first sports carnival, her first dance lesson or the first wobbly bike ride.

We have to sit down and make a realistic list of expectations...

We don't even know what is considered realistic anymore. We want her to walk, that's not realistic. We want her to sit upright, that's not realistic. We want her to maintain head control. Guess what? That's not realistic either.

So what are we supposed to expect of her then? 

Realistically we would expect her to be able to eat, it's a simple thing, right? It's a realistic expectation, right?
No, apparently it is not. 
To eat means being able to adequately control all of those 20+ muscles required to chew, suck and swallow.
Bree can't. 
Practice makes perfect, so if we work on it hopefully she can make progress, right?
No, apparently not.
To be allowed to try to eat now Bree has to pass a swallow test to make sure she is not actually putting the food straight on her lungs, we are almost 100% sure she actually is.

So if something that is such a basic requirement isn't realistic where does that leave us?

It leaves us here. Where we always seem to be. 
It leaves us dealing with the medical so we can try to make headway with the physical. 
It leaves us wondering what would be if only things had happened differently. 
It leaves us feeling gutted and heart-broken. 

It leaves us with a blank page.

Wednesday, 1 February 2012

Some Special Friends

On our way to Townsville for yet another batch of appointments yesterday it all suddenly hit me, this is our normal, this is what we do every week (sometimes we can stretch it to fortnightly trips, but not often). This is NOT what the majority of people I know do.

So why do I feel like our regular trips are nothing and that we are so damn lucky to only have to see a physiotherapist, occupational therapist, dietitian, pediatrician, speech therapist and pediatrics outreach and that we only visit the hospital pharmacy and medical supplies guy once a fortnight (or once a month if I'm organised)?

It all comes down to the friendships I have made since the beginning of our terrifyingly amazing journey.

In the real world our life is anything but normal. Our friends spend their days going to work, cleaning the house, playing with the kids. Regular, everyday things. So do we, but we also spend days in hospital, days travelling to and from appointments and days (and nights) doing everything we can to keep Bree from requiring medical intervention. In the real world we don't quite fit in. We are accepted by our friends and family, but they don't quite understand. We have fun, but we can't quite relax. We live a normal life, but it's not quite typical.

However in the Special Needs World we don't stand out, we fit right in. In the SN World we are actually one of the lucky ones.

When Bree was first diagnosed I started looking for information to help me understand. Through my search I found something even better, I found support, in the form of other parents who were already living my life.
Over the past year I have met some incredible people. A lot of these people I have never met face to face, but they are as real to me as any of my other friends, some more so. We sit for hours talking about our kids, our lives, all the stuff no one else quite gets. When things seem insurmountable I turn to them for advice. When everything gets too much they are there and they understand because they go through the same things.

I have met some amazing people off the computer too. When your life is full of specialist appointments, therapy sessions and hospital stays you are bound to meet people from the SN World. You can tell them without even looking at their kids. They're the ones that look like they haven't slept properly in years (because they haven't), they have a look of steely resolve set on their faces and they are telling the doctors what to do because they know their kids better than any professional ever could.

There was a time when I would look at the parents of a child with additional needs and think "I don't know how they do it". Now I look at them as my peers and I know exactly how they do it, by struggling and fighting people and opinions every step of the way. I don't look at them with disgust or pity I look and know "that's a very strong person pushing that wheelchair, dragging that screaming child, explaining for the fiftieth time today what is wrong".

It's because I am now so fully immersed in the world of special needs that I appreciate how "easy" we have things. People often comment on Bree's condition, how it must be so hard and upsetting for us... and it is. But we don't have it half as bad as some of the people I now know.

I have a friend whose daughter was born without a pancreas, that means she not only has Type 1 Diabetes, but a whole host of other issues resulting from this very rare medical condition. I have a friend whose sons have autism, both of them. I have a friend whose daughter has a condition that doesn't even have a name, actually I have quite a few friends with children like that. I have friends that have children that weren't supposed to survive and some that may not. I have friends whose kids require regular surgery and friends whose children barely leave the hospital. I have formed a very strong friendship with one mum in particular that deals with more than most of those mums put together.

So when I drive the hour and a half to Townsville for an appointment, instead of feeling sorry for myself I actually think how lucky we are. I forget that this isn't normal for everyone because for the majority of my friends our life is simple.

Thursday, 8 December 2011

Facing Reality

Recently we have been dealt two big blows in regards to Bree.

First we were advised that Bree's Infantile Spasms ( a form of Epilepsy) have most likely progressed to Lennox Gastaut Syndrome (LGS), a rare and very serious form of Epilepsy. This involves multiple seizures on a daily basis that cannot be completely controlled by medication. A very common occurrence with LGS is developmental delay, it is not unusual for a seizure to essentially "delete" learnt information from the brain.

Our second blow is that Bree has been assessed on the Gross Motor Function Classification System, or GMFCS for short. This is a scale used to predict how a child with Cerebral Palsy will progress through their childhood. On a grading of 1 to 5, with 1 being the best outcome for a CP child, Bree is a clear cut 5.
Her Cerebral Palsy is classified as "severe" and the prediction for her mobility and muscle control is "all areas of motor function are limited. Functional limitations in sitting and standing are not fully compensated for through the use of adaptive equipment and assistive technology". In basic terms it means that even with all the special equipment we use, Bree will never be able to perform everyday activities like other people.

We had already come to terms with the fact that our beautiful girl would likely never walk without assistance and specialised equipment, however we weren't aware that she would also never sit upright on her own, crawl or even roll around. It actually goes a lot further than that. It is not only her head and trunk control that is affected, but smaller movements such as arms and legs, chewing, swallowing and even breathing.

No one plans to have a disabled child, actually it's one of the things most new parents dread. When we discovered Bree had Cerebral Palsy we took some time to deal with it. We knew things were going to be different for us from that moment on. A multitude of therapies, new ways of feeding, new ways of doing almost everything. Through the entire year since her diagnosis in January we have kept ourselves going, trying to keep positive, by comforting ourselves with the fact that the brain is an amazing organ and that we could teach Bree to overcome her disabilities, to a degree.

I guess we were kidding ourselves just how much she could improve, but we didn't know any different. We know one little girl who has CP and they told her she would never walk, now she runs!
So, naively, we thought Bree could achieve the same.
As time progressed we realised this little girl has a completely different type of Cerebral Palsy and that Bree would require a lot of extra help, but we still didn't see just how big the gap would be.
In the last few months we started to accept that Bree's CP affects her whole body and that she will most likely need a wheelchair to get around.

Still with all these realisations and acceptances we didn't understand that Bree's head and trunk control, while it may improve, will never be at the level needed to maintain a seating position.

Although she has apparently always been a level 5 we weren't made aware of it and so we haven't been completely prepared for the changes that are to come.

So now comes the planning of our new life ahead of us, definitely not what we were expecting this time a year ago. A year ago we were getting ready to have Christmas with Bree for the first time. We bought toys she could use in the coming months, seats and playgyms, big cuddly toys she could wrap her arms around and play with as she started crawling.

This year we are organising more specialised, adaptive equipment so she can continue to participate in daily life. The toys we are buying are the same as parents are buying for their new babies. Her big gift I've asked the families for is a new mobile to go above her cot. The grandparents are struggling to find the "right" present for her and I feel guilty that they can't spoil her like they want to.

In the coming years we have to modify our house. Now we will need an all abilities access bathroom because our shower over the little square bath won't cut it for much longer. We will have to put in ramps because it's split level and I won't be able to carry her up the stairs as she gets older and heavier. The doorways will need to be large enough to fit a wheelchair.

Eventually we will need a new car that accommodates a wheelchair, it will probably need a hoist.

Slowly, but surely Bree's beautiful little girl's bedroom will look more like a store room for all of the medical supplies and adaptive devices she will require.

Does Bree's latest diagnoses change how we feel about her?
NO, we love our little girl just as much as always.

Will we stop doing her physical therapies even though there doesn't appear to be any benefit?
No, of course not, who are we to say they don't help.

Do we want more sympathy from everyone?
No, we don't want anyone feeling sorry for us in the first place.

Does it hurt to know how hard our beautiful baby's life is going to be?
YES, it hurts a lot.

Wednesday, 16 November 2011

Why Doesn't She Eat?!

People often ask "Why doesn't your baby eat?", "Why don't you try harder to get her to eat something?" I get questioned why I feed her with a syringe or pump and a tube and I get a lot of questions about how it all works. Here's my answer!

Cerebral Palsy affects muscle tone and the ability to control muscle movements. In Bree's case she has what is referred to as Spastic Quadriplegia Cerebral Palsy. This simply means her muscles are always tight and it affects her entire body

Did you know something as simple as eating uses 20 different facial muscles? Add in the ones engaged to sit upright including the head and trunk and all of a sudden feed time is a huge workout!

Unfortunately so much of a person's development is directly related to their ability to feed.

Feeding skills first start to form in utero when the baby makes sucking motions and sometimes even finds a thumb to put in their mouth. When bub is born they further develop as they feed, through the sucking and drawing movements they use to take milk. As a baby reaches the 4-6 month milestones they use their oral skills to mash food with their gums and drink from a sippy cup. Later this turns to chewing and sucking from a non spill cup and before you know it you have a toddler that eats and drinks anything!

As the oral skills used for feeding develop so do the ones for speech. If you think about a baby's vocal skills you can see the direct relation. When a baby is first born they make noises from their throat, we know this as crying. As they develop their skills they start to make gooing and gaaing noises, this turns to simple words such as "dada" and "mama". From here the first words will form and an understanding of language develops as well.

Although these seem like simple progressions the processes involved are great. There is a lot of mouth and tongue control needed to mash pureed food between your gums and push it down the back of your throat. These are the same muscles you use to form those first simple words.

Ideally we want to encourage speech and oral feeding so we work on Bree's oral skills every day. We call it speech therapy and she has a specialist she sees regularly for this. It really means that we give her small feeds throughout the day so she can practice using those tongue and mouth muscles. We also do tongue "exercises" and place pressure under her chin so she is more aware of the muscles she needs to use.

We are having success with this, slowly, but surely! Bree can make a lot of noises from the back of her throat and also says some simple words "daddy", "mum", "hey" and "no". She doesn't say them a lot, but she can form them at times.

Unfortunately there is absolutely no way that Bree can eat enough in a day to maintain her weight. So while we spend a lot of time and I do mean a lot feeding Bree orally each day this is not actually how she receives her daily requirements.

To ensure she receives enough nutrition throughout the day Bree has a feeding tube. Originally this was a Naso Gastric Tube which went through her nostril, down the back of the throat and into her stomach. This is a short term method and is quite often used in premature babies at birth. As we are looking at tube feeding being a long term solution we now use a slightly different method that works in much the same way.

Bree now has a Gastronomy Tube, or G-Tube for short, this is a one way valve that goes directly into her stomach. A hole has been made, much like when an ear is pierced and a "button" has been placed externally. It is hidden under her shirt most of the time and when she needs a feed we simply open the valve and "plug in" a tube, we use a syringe to push her milk through. We also have a pump which we can use to give a set amount over a set period. It did all seem a little bizarre and overwhelming to start with, but this is our normal now.

So why doesn't my daughter eat and why don't we try harder to get her to feed?

It's not a case of Bree not eating, she spends a lot of time eating. She simply can't control her muscles enough to eat the amount she needs to.

Simple, right?!!

Wednesday, 9 November 2011

To Sue Or Not To Sue, That Is The Question

I was having a conversation with friends today about children with disabilities and how often it's the hospital's fault that these babies had complications.
All too many times the staff are to blame for birth related injuries and Bree's case is no different. Although no one in the medical profession will admit that her PVL is a direct result of Bree's traumatic entry into this world we are all too well aware of how the damage occurred.

The question this always poses is why haven't we sued the hospital. We know they are at fault, we know Bree suffers everyday because of their mistakes and we know we have every right to do it.

While it is true that a cesarean could have prevented Bree's injuries I have some issues with the whole concept of suing.

Firstly I hold the firm belief that without the staff on that day we wouldn't have Bree with us today. They saved her life. When the nurse realised that our baby was in distress every effort was made to get her out quickly. When Bree was born and wasn't breathing the NICU team resuscitated her on the spot. Yes, there had been errors with the labour, but there wasn't a single slip up when she was born.

Secondly, I don't believe that one person should get the funds that are meant to benefit everyone. That goes for any business, organisation or individual. If we were to successfully sue the hospital what would that mean for other families in the future? Without funding hospital based programs can't run, wards close down and people are refused care. Doctors start raising their fees to cover higher insurance premiums and the costs for an average family spiral out of control. How would we feel if we were one of those families?

Thirdly, we use that hospital. We use it a lot. On average we have an appointment once a week. It's our regional base and when Bree gets sick our local hospital transfers us there. If we need scans or tests performed they are carried out at that hospital. If we were to sue, it wouldn't exactly be right to continue to use those services, would it?

Lastly, I know the money would help and god knows we could use it to pay for all the extra things we now need as a result of Bree's physical limitations, but it won't change anything. Our daughter still has Cerebral Palsy. It won't disappear because our bank account has increased and no amount of money will change what has already happened.