Random Ramblings

Going to the conference in the US was a god send for us, in so many ways. It gave us access to vital information that, now that we are back home and again lost in the depths of a thoroughly useless medical system, has proved to be a very very useful weapon to help get quality care for Nicola.

Unfortunately, the issues we deal with on a daily basis seem to be beyond the scope of anything our doctors have seen or dealt with… and because of this, we are often finding ourselves stuck in the ‘too hard to handle’ category and sent on our way, with a vague affirmation to return should the symptoms persist or should she deteriorate any further.

Today was yet another classic example of this.

For the past couple of weeks Nicola has slowly deteriorated into a pattern of excessive sleepiness. To the point that now, she will happily sleep for anything up to 20 hours a day. If she is forced to be awake, she will cry without consolation until finally she is back in her bed asleep again.

We spoke to our surgical consultant today who assured me that the problem is most definitely not a post surgical complication and in his expert opinion, it is another problem caused by the Chiari 1 Malformation that we know she has. He also advised that he felt it was best that we present to the local emergency department immediately for consultation with our paediatric team.

Before you read this next part, you need to understand how our medical system here works. We are at the state’s major children’s hospital, which is a teaching hospital. So the Consultant is the senior doctor. He is the one that all other paediatric doctors in the team defer to. Below him is the fellow. She is the one that has done all of her rotations and has an understanding of most of the workings of every department and has rotated back into general paediatrics to complete her specialty. Then below the Fellow is the Registrar. They are a semi qualified doctor able to make some basic day to day decisions, but still well and truly under qualified for anything even remotely unusual or different (and really, what part of ANY Costello Child is usual or mainstream?)… and then we have the Resident, fresh out of medical school, teaming with that whole megalomaniac ‘I am a doctor so I am elite’ sociopathy.

So dutifully I phone up our paediatricians. Our paediatric consultant is only in the hospital for 9 hours a week. Yes, that’s correct, it’s not a typo. 9. Nine. One more than eight, but one less than ten. Nine.

I end up with the Fellow who is rushing out the door on her way to an all important gathering (the Melbourne Cup is on today!) and so she just tells us to present to the emergency department for immediate assessment.

So we bundle the children into the car and traipse into the emergency department, and have to sit there and tell Nicola’s life story to the triage nurse. We finally get to see a doctor, and again, I have to tell Nicola’s entire life story, only to be told that they can’t find her medical records. They have somehow been lost between the outpatients clinic yesterday and the medical records department across the hall. But, never mind, they will just call our regular paediatric team in to assess her, after all, they know her best, right?

HAH!!

They bring in the registrar, who we have never met before today… So for the third time in as many hours, I find myself getting increasingly frustrated as I once again tell Nicola’s entire life story… only to be met with a blank stare… and then finally the resident, who looks like she is all of ten years old, pipes up and says “So what exactly are your concerns? Is it just that she’s sleeping and a bit cranky? Isn’t that what babies do?”

Seriously, this is about the point where one starts fantasizing about jumping up and just going completely postal. Visions of scenes from the movie John Q start flashing before one’s eyes…

So once again, I explain my concerns about her extreme irritability and excessive sleepiness… I explain to them that it is very much out of character for Nicola, and I am concerned about it. I have spoken to the senior surgical consultant and he has advised me that he believes that it’s neurological, stemming from her Chiari, and we need her to be assessed by the neurosurgeons that have been assigned to her.

Well, anyone would have thought I had asked them to go tap dancing on the moon given their reactions! The registrar tells me that that’s not how things are done and decides that she will have to do a complete assessment on Nicola.

So the first thing she does is get Nicola to lay down on the bed so she can have a look at her… then she turns to me and says “Are you sure she has Costello Syndrome?”

I explain that we’ve had the gene test and that it was confirmed and it was a conclusive test.

And she says “Are you sure? Only, she doesn’t have all the classic facial features?”

I felt like saying “No, I just feel like saying it, day after day, week after week, month after freakin month!”

She gets on with the assessment and asks a hundred questions and gets two hundred answers… and then she stands back and says “well, I think that’s it…”

“And the verdict is?”

“Oh, I don’t know, I’ll have to get the neurosurgeons to come and assess her… it’s most likely neurological.”

Well, you don’t’ say!!!

Long story short… 7 hours later, we finally leave DEM… we still haven’t seen the Neurosurgeons, and we’re still no closer to an answer. We have a vague assurance that some point in the future they will contact us to schedule another MRI to be done at some other point in the future, which will be reviewed by the neurosurgeons at… you guessed it… yet another point in the future!

Oh what I wouldn’t give for a crystal ball right about now so I could predict the future!

But all along, she kept questioning whether or not Nicola actually really has her diagnosis correct… after all, she doesn’t seem to fit neatly into the little box that someone somewhere has created just for people with Costello Syndrome.

Nicola doesn’t have an oral aversion. She loves foods, she loves tastes, she loves having things in her mouth and like most babies, everything that makes it into her hand goes straight into her mouth. Now that she has teeth she is getting very good at biting and chewing and can make a right mess of pieces of meat and biscuits and rusks etc, and she can devour a piece of chocolate like a monster in a frenzy… but she cannot swallow! She has the same issue when she tries to bottle feed. We know she has a weak and somewhat uncoordinated suck, but with a haberman feeder she used to do very very well and was on full oral feeds.

Apparently that is not normal for a Costello Child.

Nicola has Chiari 1 Malformation, which is allegedly supposed to be an asymptomatic adult condition… not a condition found in a baby of 14 months, and apparently she is ‘symptomatic’ of Chiari 2 instead… which, of course, as we all know, is totally impossible, because Chiari 1 never has the same symptoms as Chiari 2, especially not in the world of medical, tick the box and make it all fit, perfection. And of course, it’s entirely possible that Nicola doesn’t really have Chiari at all because Costello children “often” have enlarged ventricles and droopy brains just because! After all, how do they know that a “normal” Costello brain looks like?

So now, instead of having a medical team who ignore us and our needs… we have a consultant who is never available, and a registrar who thinks she knows everything because she’s read a few pages on the internet this morning.

But of course, none of this is really relevant anyway, because after all, it’s all in my head. We have an ideal medical system that never has any issues dealing with people, so I’m just a whinging, complaining, psychotic, neurotic mother.

Oh, and I’m also a bitch… but that’s a whole other story!

In love and madness!!!

The Sweetest Sound.

Today my precious little girl is 13 months old and we are now 4 weeks into this hospital admission with no end in sight.

Any parent who has been in the position we find ourselves in every day knows the pain and frustration of having a child in hospital. The pain and frustration of being in such an alien environment… and I think that being a mother makes the frustration about a hundred fold worse.

From conception, as her mother, it is my job to care for her… to nurture and nourish her… to care for her and to love her… and when that role is taken away from you, there is such a sense of loss. All of a sudden, a role that is as natural to us as it is primal and instinctive becomes ambiguous.

Things that were once so natural, are now a charted and documented process and gone is the freedom of being able to make decisions that you feel best meet her needs… and the care of someone so innocent and precious is being entrusted into the hands of a stranger, who changes every 12th hour.

This admission has been even more of a rollercoaster for us than most. There have been so many things that have gone wrong in the past 4 weeks, with straight forward surgery going horribly wrong. In the past 4 weeks, she has been into theatre 6 times, had two collapsed lungs, spent 16 days ventilated, 1 day on BiPAP, 3 days on CPAP, 8 days on supplemental oxygen, 2 blood transfusions, staph, strep, entracoccus, and pneumonia.

With everything that Nicola has been through in her short little life, I have never in my life been more afraid that I was going to lose her as I have been through the early weeks of this admission. Seeing her wheeled back from theatre with her little body painted in orange and her eyes taped closed, ventilated and bagged, with so many machines connected is a sight that will haunt me for many years to come.

Even now, I still wake in the middle of the night with the alarm of the ventilator sounding with an apnoea alert or a frequency alarm and the sight of the x-rays showing her lungs collapsed and her little chest full of infectious gunk is still something that I can clearly visualise, and probably always will.

But, as with everything else, she has pulled through.

Every step of the way she has proved again and again that she is stronger than they realise. Every time I fight for her to be given a chance, she proves to the doctors that she is capable of miracles. She has smiled through immeasurable pain, and tolerated indignities that no little baby should ever have to endure. She has been suctioned and sutured and swabbed… poked and prodded and pricked… and generally just tormented to tears on a daily basis.

But today… today she has proved yet again just how truly amazing she really is.

This afternoon she suffered through the indignity of a sponge bath on her bed, when all she really wanted was a shower. I dressed her in her little jammies, when all she really wanted was to stay nuddie. I rubbed moisturiser into her arms and legs and gave her a bit of a massage, which, come to think of it, she really didn’t complain about much at all… then, after all of that, I leaned in and smothered her with kisses…

And that’s when it happened…

I heard it…

The sweetest sound ever to be heard by anyone anywhere…

Despite all her pain and suffering…

In the face of so much adversity and against all the odds…

My precious little girl laughed, for the very first time.

Anger Abound...

Nicola has spent the largest part of her life as an inpatient at the hospital. It has been something that my family has struggled with from the onset.

We moved to Brisbane while I was pregnant with the intention of my husband going back to his former employer, which was a good, family friendly work place... a must given that we were about to have our third child in under as many years.

He lost his job in February this year after having too much time off work to care for our older children while I've been in the hospital with Nicola's repeated admissions...

But trying to make the medical staff understand the impact that this has on our lives has been nigh on impossible, to the point that we've just given up and put all our energy into the fight for her health care, a battle that was constantly being waged anyway.

After we were given her diagnosis, at our first paediatric consultation several weeks later, we had an extended meeting with the new paediatric consultant, as our original consultant was on maternity leave.

This was shortly after I wrote an extremely lengthy email to several high up persons to express my concern and unhappiness at the quality of the care she has received.

When we started this consultation, my husband and I sat down and took our time to explain our concerns... how we felt that our last paediatrician didn't listen to us and that our concerns were never considered, and that Nicola's care had been so far substandard that we didn't consider it to rate on the scale at all... and also the fact that they had REALLY dropped the ball with her diagnosis... that we were so angry and hurt by the way we had been informed of her condition and the fact that we were left on our own with no information, no support and nothing...

Of course, then and there, she said all the right things and made all the right gestures and promises...

Two weeks later she refused to sign the paperwork for us to travel. She told us that the risk of 'contracting seasonal respiratory viruses' was too high so she would not sign our medical clearance.

We dealt with that, we sorted that out... then today we've got a copy of Nicola's medical file to take to the conference with us.

Right in the front is a letter that this 'woman' has written and cc'd to every other department involved in Nicola's care as well as the local GP that *I* see and in it, amongst other anger intensifying comments, she states that we are 'hostile' and that our anger at the botched care our daughter has received is simply a 'severe grief reaction misdirected at medical and nursing staff'.

How the hell can she say that our anger over their screw up's is misdirected grief?

We've been angry since before the diagnosis, this is just the first time we've actually been able to get someone to listen to our concerns!

Gah!

I've sent an email tonight to the director of the hospital asking to have a new paediatric consultant assigned to Nicola's care. I need a doctor that I can trust dealing with my daughter, not a self righteous megalomaniac with a holier than thou superiority complex!

But still... soooooo angry I could cry!

For Better Or Worse...

I received an email recently that quite upset me... it was talking about Costello Syndrome, and what it means to the particular person who wrote the email, who is a mother of a grown Costello person. Her feelings, when reflecting on the question "How does it affect my life" was quite simply that 'it doesn't'.

I read it, and my first response was to feel like I am some how inferior or something because to me it does affect me, it affects my whole family to an unimaginable degree.

To be honest, when we were first given Nicola’s diagnosis, if someone had told me that Costello Syndrome had no impact on day to day life, or that it meant nothing, I probably would have slapped them.

When the diagnosis was given to me, even though I learned the news in a truly horrible way that I honestly hope no one else in the world ever has to deal with, I truly felt like my world had ended. In those first moments, and in the days and even weeks that followed, I felt like something phenomenal had been taken away from me… and I had to grieve for what I had lost before I could realise what I had gained.

I still haven’t embraced her diagnosis, but I have started to accept it… and that in and of it self is the first step in moving forward.

Even though I have started to accept her diagnosis, to be told that it has no impact on day to day life is not something that I wanted to hear then, and it’s not something I like to hear now… because to us, it DOES impact on day to day life.

It impacts on our lives every time I have to feed her via the stupid tube because she can’t feed from a bottle, let alone breastfeed.

It impacts on our lives every time she gets upset and her cardiac conditions cause cyanotic episodes.

It impacts on our lives every time we have to go through yet another appointment or yet another review.

It impacts on our lives every time we have to leave the house… a quick trip to the store is a thing of the past.

It impacts on our lives when I’m waking up to her up to a dozen times a night, (last night was 11) because she has pain from some mysterious source that I can’t comprehend.

It impacted our lives again last week when her routine abdominal scan revealed a ‘mass’ behind her bladder and now we’ve been told to wait a month before we know if maybe this could be a tumour or not because this condition leaves her predisposed to all kinds of nasties.

It impacts on my life every time I see my nephew who is only a couple of months older than Nicola, or any other child her age… and he’s walking and running and talking and interacting with the world… and my daughter can barely hold her head up.

Perhaps the difference is the fact that my child is still just a baby and we are still trapped in the worst of this condition… perhaps the difference is the fact that I am still new to this world, I’m not yet a battle weary veteran… or perhaps the difference is just in my own mind…

So, I guess, after several days of thinking, contemplating and reflecting, this is my long winded way of saying that I disagree.

I have a daughter named Nicola who has Costello Syndrome… and whether I like it or not, it has changed our lives, for better or for worse.

Confronting The Truth

T’Was a Tuesday When The World Ended…

Have you ever experienced that one moment where the whole world just stops? If you have, you know what I’m talking about… the moment where everything in the background kind of blurs away. You feel like your heart has stopped beating, but you know it is because it’s beating so loudly it’s drowning out the rest of the noise in the vicinity. You can feel sweat pricking on your body, but your insides have just turned cold. You have no strength, no will, no desire, no ability to focus, think or comprehend more than just one or two words…

For me, those words were ‘Costello Syndrome’.

This is the name of the great big evil horrible thing that is affecting me beautiful precious baby girl.

It still seems so hard to comprehend. I fell like I’m in an emotional train wreck.

Really, how does a person come to terms with the fact that their child, their precious, sweet, innocent baby, has this horrible syndrome, that is not only life threatening, it is also incredibly rare, so no one really knows anything about it!

When you have a child, your heart gets filled with all these hopes and dreams… you hope that your child grows up and does well in life… that they get a good education and a good job and meet a good person and have a good relationship and God willing, they start the cycle again so they get blessed with their own precious children, and they get to experience all the joy that they have brought to your life.

With those few little worlds, it felt like all my dreams for Nicola had been snatched away. Instead of dreaming that my child grows up to have a happy and prosperous life, I found myself dreaming that she will just grow up… that she will be one of the lucky ones who doesn’t have to deal with the neuroblastoma or rhabdomyosarcoma or any of the other cancers that plague these poor children in childhood and adolescence, that she won’t live a life of pain and suffering, that she won’t suffer in some horrible way.

All of a sudden, I’m playing a new and different game… the problem is, no one has told me the rules.

Most days I truly feel like Alice after she went through the looking glass. I look back on the life that I used to have, and I can’t help but think about how much easier that life was… how much less stressful…

But then I look at Nicola, and she gives me that beautiful little smile of hers… and I know in my heart that I wouldn’t change anything. She is here, she is ours and we will do everything that is humanly possible and then some to give her the best possible life we can… the life that she deserves to be living!

After all, the rules don’t matter. Rules are made to be broken.

___________________________

That was the (slightly modified) entry I made in my blog a few days after we received the diagnosis of Costello Syndrome for Nicola.

My wounds were raw… something that Colin could probably attest to. He called me the night we found out and there were a great many times I had to just stop talking because I was on the verge of breaking down again.

I felt like everything I had ever known about my daughter had been snatched away from me and smashed into pieces, and in her place was this tiny creature that really I knew nothing about.

I can’t recall how many hours I spent just sitting on the end of my bed, watching her sleeping in her cot, asking myself what I had done wrong…

Was it that one slice of pepperoni pizza I had the night the girls Godfather bought them Pizza? Was it the soft serve I ate in the city in a moment of weakness?

Did I not take the prenatal vitamins early enough? Did I miss something else?

What did I do that could do this to my precious child?

I still lapse into those thoughts from time to time… I find myself wondering…

But oddly enough, now, only 6 weeks later, I can’t imagine my life without her being just the way she is. She is a whole new level of perfection, and already she has taught me so much, and I don’t mean just the medical skills.

Nicola has taught me patience and tolerance. She has taught me a whole new level of acceptance and understanding.

Nicola has taught me how to love in a way that is more fierce than anything I ever thought was possible… and she has taught me how to fight, not just for her, but for everyone else that is just like her… and already we have achieved miraculous things that we never thought would be possible.

Recently I received an email from someone who shared with me the story of their own precious Costello Angel who has grown their wings… a story that reduced me to tears and kept me there for the rest of the day.

It was with that story that I realised that the confrontation for this condition hasn’t ended.

There are so many beginnings and so many endings… there are so many chapters in this story…

Some days I dare not turn the page for fear of what the new chapter may bring.

The reason I’m sharing all of this now is because today has been one of ‘those’ days…

One of those days where everything is just all too hard. I don’t want to deal with the truth, I don’t want to deal with the doctors, I don’t want to deal with the medical stuff… I just want one moment of normalcy in my life…

Tonight when I was doing Nicola’s speech therapy and giving her a bottle I discovered that she has cut her first tooth.

And that was it…

In the midst of all of the frustration and the confrontation…

As if she knew that tonight I needed it the most… my beautiful little girl had given me the one moment of normalcy I wanted.

Now, my wounds are still raw… I will still go to bed tonight questioning how I will get through tomorrow, or next week, or next month (especially travelling internationally with a high needs infant!)…

My heart will still break when she cries in pain… and I will still question the fairness of life when I see my older children taping nasogastric tubes to the faces of their cabbage patch dolls and listening to their tummies with stethescopes…

I will still battle with the medical system tomorrow for her care, and I will still seek out new ways to make her life better… I will still fight for her, and for every other person out there like her…

But now I can look forward to being surprised by silly little normal things as well.

Looking Forward, Looking Back.

Looking back on the entry I made in my blog a few days after we received the diagnosis of Costello Syndrome for Nicola.

My wounds were raw... something that Colin could probably attest to. He called me the night we found out and there were a great many times I had to just stop talking because I was on the verge of breaking down again.

I felt like everything I had ever known about my daughter had been snatched away from me and smashed into pieces, and in her place was this tiny creature that really I knew nothing about.

I can't recall how many hours I spent just sitting on the end of my bed, watching her sleeping in her cot, asking myself what I had done wrong...

Was it that one slice of pepperoni pizza I had the night the girls Godfather bought them Pizza? Was it the soft serve I ate in the city in a moment of weakness?

Did I not take the prenatal vitamins early enough? Did I miss something else?

What did I do that could do this to my precious child?

I still lapse into those thoughts from time to time... I find myself wondering...

But oddly enough, now, only 6 weeks later, I can't imagine my life without her being just the way she is. She is a whole new level of perfection, and already she has taught me so much, and I don't mean just the medical skills.

Nicola has taught me patience and tolerance. She has taught me a whole new level of acceptance and understanding.

Nicola has taught me how to love in a way that is more fierce than anything I ever thought was possible... and she has taught me how to fight, not just for her, but for everyone else that is just like her... and already we have achieved miraculous things that we never thought would be possible.

Recently I received an email from someone who shared with me the story of their own precious Costello Angel who has grown their wings... a story that reduced me to tears and kept me there for the rest of the day.

It was with that story that I realised that the confrontation for this condition hasn't ended.

There are so many beginnings and so many endings... there are so many chapters in this story...

Some days I dare not turn the page for fear of what the new chapter may bring.

The reason I'm sharing all of this now is because today has been one of 'those' days...

One of those days where everything is just all too hard. I don't want to deal with the truth, I don't want to deal with the doctors, I don't want to deal with the medical stuff... I just want one moment of normalcy in my life...

Tonight when I was doing Nicola's speech therapy and giving her a bottle I discovered that she has cut her first tooth.

And that was it...

In the midst of all of the frustration and the confrontation...

As if she knew that tonight I needed it the most... my beautiful little girl had given me the one moment of normalcy I wanted.

Now, my wounds are still raw... I will still go to bed tonight questioning how I will get through tomorrow, or next week, or next month (especially travelling internationally with a high needs infant!)...

My heart will still break when she cries in pain... and I will still question the fairness of life when I see my older children taping nasogastric tubes to the faces of their cabbage patch dolls and listening to their tummies with stethescopes...

I will still battle with the medical system tomorrow for her care, and I will still seek out new ways to make her life better... I will still fight for her, and for every other person out there like her...

But now I can look forward to being surprised by silly little normal things as well.

And So... It Begins...

It has been 4 weeks since the hospital received Nicola's test results. In that time, they haven't bothered to contact us at all, not even to give us the diagnosis.

So how did we find out about this horrible monster invading our precious little one's life?

Nicola was admitted to a different hospital for a scheduled heart procedure. She needed a cardiac catheter and a balloon catheter for her pulmonary stenosis. It was a bit of a hair raising procedure, but when we were sitting in the critical care unit, hours after she had come out of the operating theater, a doctor I had met for all of 5 minutes handed me a piece of paper and told me that my daughter had Costello Syndrome.

That was when he walked away and left me.

It seems that HE had access to the information that I had specifically requested to only be available to my husband and I until we had had some time to work through it emotionally.

I can't even begin to express on how many different levels this toys with my emotions.

I feel hurt that my daughters privacy was violated in this way, especially after we made specific requests as to how the results were to be handled.

I feel frustration that to all outward appearances, the medical staff we have been dealing with for the past 8 months are no more inclined to help now than they have been for the past 8 months...

And I feel anger.

I am angry that we got this diagnosis.

I am angry that they didn't tell me.

I am angry at the way they told me.

I am angry that they have made no effort at all as to her medical care.

In late March they told us that they would schedule Nicola in for a PEG within 4 weeks. We still haven't been given a date.

Two weeks ago I was told that Nicola would be scheduled for a gastro review within two weeks. I rang them today to chase it up again. Apparently it was forgotten.

Our pediatrician advised the staff at the Mater last week that they would schedule an appointment for us for this week.

We have heard nothing.

It seems as though the only way that we get any assistance from them at all is from me fighting and yelling and shouting and threatening and making a scene.

Don't get me wrong, I will continue to do so as long as it is necessary... but I just wish that she could get the proper medical care that she needs, without me having to fight so damn hard for it.

Unfortunately, there is no other hospital around better suited to our needs.

It makes me so sad, it really does.

Nicola is only 8 months old, she is a precious little baby... she shouldn't be going through all of this.

We made the decision today that we want to go to the Costello Conference in San Francisco in July. We think it's something important for us to do. Given that we are the ones that have to fight for Nicola's care, we need to know what to fight for, and that is going to be the best way to find out.

Hopefully this will be the start to making a HUGE difference in her little life!

T'was a Tuesday When The World Ended

Have you ever experienced that one moment where the whole world just stops? If you have, you know what I'm talking about... the moment where everything in the background kind of blurs away. You feel like your heart has stopped beating, but you know it is because it's beating so loudly it's drowning out the rest of the noise in the vicinity. You can feel sweat pricking on your body, but your insides have just turned cold. You have no strength, no will, no desire, no ability to focus, think or comprehend more than just one or two words...

For me, those words were 'Costello Syndrome'.

This is the name of the great big evil horrible thing that is affecting me beautiful precious baby girl.

It still seems so hard to comprehend. I fell like I'm in an emotional train wreck.

Really, how does a person come to terms with the fact that their child, their precious, sweet, innocent baby, has this horrible syndrome, that is not only life threatening, it is also incredibly rare, so no one really knows anything about it!

When you have a child, your heart gets filled with all these hopes and dreams... you hope that your child grows up and does well in life... that they get a good education and a good job and meet a good person and have a good relationship and God willing, they start the cycle again so they get blessed with their own precious children, and they get to experience all the joy that they have brought to your life.

With those few little worlds, it felt like all my dreams for Nicola had been snatched away. Instead of dreaming that my child grows up to have a happy and prosperous life, I found myself dreaming that she will just grow up... that she will be one of the lucky ones who doesn't have to deal with the neuroblastoma or rhabdomyosarcoma or any of the other cancers that plague these poor children in childhood and adolescence.

All of a sudden, I'm playing a new and different game... the problem is, no one has told me the rules.

Our world is filled with medications and specialists and trips to the hospital... something as simple as running to the shop for a loaf of bread has become a mission that must be planned so precisely so as to ensure minimum imact on her life that it's generally easier to just not bother and give the other girls crackers instead!

'Normal' families have a linen closet that is filled with linen! Ours is packed with entereal feeding pump bags, syringes, tapes, papers, specialist prescription formula, and all manner of medical supplies.

Recently my parents were visting with us for Mother's Day, and my Mum was the lucky one who got to do the CECU (Clinical Equipmenent & Consumables Unit) and Pharmacy run with me to get Nicola's monthly supplies and she was absolutely astounded at how much stuff I take home every month... and even then, I generally end up ordering more from a third party supplier because we generally don't end up with enough to get us through.

Most days I truly feel like Alice after she went through the looking glass. I look back on the life that I used to have, and I can't help but think about how much easier that life was... how much less stressful...

But then I look at Nicola, and she gives me that beautiful little smile of hers... and I know in my heart that I wouldn't change anything. She is here, she is ours and we will do everything that is humanly possible and then some to give her the best possible life we can... the life that she deserves to be living!

After all, the rules don't matter. Rules are made to be broken.