EnviroAir™ Giveaway!

The expenses can add up very quickly when there is a chronic illness involved in your life. We are very grateful that Ruby's medications are covered on the PBS, and her hospital care and clinic visits are covered under our healthcare system. 

But that's not where the care we provide ends. And there are lots of little things to consider that end up making quite a dint in the budget. This includes things like petrol money to the hospital, paying for necessary meds not covered not the PBS like vitamins laxatives and probiotics, and the bigger food bill that comes with having to eat a high fat but healthy diet.

And then there are the "extras". The things that aren't really necessities, but things that we would like to be able to provide for Ruby, in the interest of her health. These can include things like buying organic food, using complementary medicines and treatments, going to salt rooms, using devices around the home to improve air quality…the options are endless.

Of course, we can't do everything. It's a matter of prioritising. Some families simply can't afford it. If it was a choice between a nebuliser and a salt pod, then of course the nebuliser will win.

One of the "contraptions" that I do have, is the EnviroAir "Breathe Easy" machine, by Nature Direct.   Nature Direct offer a unique range of non-toxic, eco-friendly cleaning solutions and disinfectants created by nature.
I bought it after hearing great reviews from quite a few friends. Sometimes personal experiences are the best kind of recommendation! This machine is like a bowl of water with a fancy water filter swisher thing on top that "washes" the air. It comes with an all natural concentrate, that is added to the water. It purifies the air in your home by reducing allergens (including mould spores), bacteria, pollutants and odours.
I use it every day if I can, especially on days where the air quality is low. I can tell you from personal experience, that on days where there is backburning in the area, and we wake up to smokey air that finds its way inside, our Breathe Easy machine gets rid of the smell very quickly. It is not a humidifier that releases extra moisture into the air, which is important to look out for when CF is involved.

Breathe Easy Machine

So…here's the exciting part…we have very kindly been gifted an EnviroAir Breathe Easy, by Nature Direct, to give away to someone with Cystic Fibrosis! Entry is open Australia wide and is very easy. All you have to do is make sure you "like" the Team Ruby Facebook page, as well as the Nature Direct Facebook page, by using the fancy entry thingy below!
This give-away is only for people affected by CF, so only CF patients or carers are able to enter. We may require confirmation of this.

OMG…the lovely Rachael from Nature Direct has also just told me that the winner will get "The Works" pack as well! Now I am a bit jealous of the winner! Chemical-free cleaning, here we come! Rachael has also very kindly offered to hand deliver the prize to the winner if they live near her in Melbourne, to help them get the most out of it. 

The Works 

So please share this around so the people who need it have a chance to enter! 

a Rafflecopter giveaway



Our competition has now ended and I have randomly drawn a winner using Rafflecopter. A big congratulation goes to Shannon Devorsine! Thank you Shannon for entering, I hope you love your prize as much as I love my Breathe Easy machine xx A BIG thank you to Rachael from Nature Direct  for making this possible without any cost or conditions for us, it was a really kind thing to do. Please contact Rachael if you are ever wanting to learn more about any Nature Direct product.
This was fun, I hopeTeam Ruby can do another giveaway soon to help a CF family! Maybe a salt pod next time??

Chest Rub for Respiratory

Ruby has got the whole smokers cough thing going on at the moment. Deep and chesty. The cough is a stand alone visitor. No runny nose, loss of appetite, fever, or anything else that would indicate a passing viral infection.

I was surprised that her sputum results were all clear. So the good news is, no nasty bugs making a home out of that mucus. The worrying part is, why is she coughing so much of this thick gunk? Why is she producing more than what her normal amount usually is, and what can I do to help her?

Apart form the normal treatments and physio she has, I could make an essential oils chest rub! Easy to do and much nicer than what you buy off the shelf, which normally contain chemicals such as petroleum.

I am making this rub using the essential oils blends, Thieves and RC

THIEVES
Thieves (also known as Oil of Thieves) has an interesting history. During the bubonic plague, spice merchants discovered a combination of spices that made them immune to the black death. The merchants use this knowledge, not to help people, but to help themselves. They made an oil from the spices, rubbed it on themselves, and then robbed the dying of their possessions.
Eventually they were caught, and traded the recipe for their lives. Doctors then used the oil in those strange looking beak masks as they treated the sick.

Oil of thieves is a mixture of cloves, cinnamon, lemon, eucalyptus and rosemary. It has a lovely warm scent, kind of like chai tea! Thieves oil is highly anti-infectious, anti-viral, anti-bacterialand antiseptic.

It is very strong and can only be used diluted (which we will be doing). The recommendation is to not use it on children under 2 .

RC
The other oil I am using is a blend called RC. It does not have a colourful history like thieves, but is great for opening up the respiratory. It is a respiratory anti-inflammatory, is good for sinuses, asthma and allergies.  It oxygenates and expels mucus from the respiratory system. (It does not dry up the mucus.)
It contains different species of eucalyptus, peppermint, pine, lavender, cypress and marjoram. Not to be used in children under 18 months.

The only other ingredient needed is coconut oil! Organic, cold pressed is best, but not necessary.

METHOD

• Heat 100g of coconut oil so it is a clear liquid. I have a Thermomix so just put it in there on 60 degrees for 2.5 minutes.
• Carefully pour the oil into a small jar
• Allow to slightly cool, but not enough to solidify again
• Add 20 drops of RC oil and 7 drops of Thieves oil
• Put the lid on and shake well
• Let is solidify again

This is a mild blend because I am using it on a 3 year old. You could add more oil for an adult or bigger child.

HOW TO USE

Rub on the chest area and throat. Can also be rubbed on the soles of the feet. I put it on my kids feet before bed, and cover with socks. 

Don't use on children under 18 months. To keep the oils potent, make sure you store away from direct sunlight. 

So there you go! A history lesson and a chest rub that will help relieve a nasty cough while warding off infections.



If you would like to purchase the oils...
I have recently signed up as a distributor for Young Living Oils. I chose Young Living after researching how they make their oils, and because of the very high standard of production.
If you would like to purchase any oils, email me direct at danstaa@hotmail.com

Father's Day

It's Father's Day today!
What does fathers day signify for you? Personally, I think of how lucky my two girls are to have a loving, supportive, present dad in their life. To me, it's all about making memories that last a lifetime. Not necessarily particular events or holidays, but remembering feelings and emotions.
Memories of day-to-day activities fade as you get older, but how you feel about someone...that always stays with you.

I would like to share with you some things about my dad. All these little memories from childhood show me now just how lucky I am to have such an awesome man as a father.

I used to try and catch him but no matter how fast I ran, his long legs would always be just out of reach. He laughed as he ran which made me laugh, subsequently making it even harder to run

He read to me every night. Normally the same book over and over. He still uses the same reading voice when he reads to my children

He drove me everywhere. And I mean absolutely everywhere. For years. And he never once nagged about getting my licence.

He never swears. If he said "schwepps", you knew there was trouble.

I used to watch movies with him on the couch, using his tummy as a pillow. I remember the gurgle sounds.

At softball, his cheer cry was "Keep your eye on the pill, or you'll be the dill! (Yes, really)

One of my earliest memories of my dad was watching him mow the lawn out the front. We lived in Perth so I must have been no older than four. It was a really hot day and an old man who was walking past sat on our little fence for a rest. Dad went and got him a big glass of water and the man was obviously very appreciative.

Now, I may have remembered that story really wrong. But it doesn't matter. What matters is, how I saw my dad. He always was, and still is, a kind, genuine, gentle man with a good sense of humour, and has a great love for his family. I honestly can't remember many bad times (let's just ignore the teenage years), all I remember is love and laughter. And really, what better memories could there be?

Love you dad xx

You Have Mail

Received a letter today from clinic. It was a summary of Ruby's annual review. It didn't have anything in there that I didn't already know about the disease.

So why did it upset me so much?

Reading things on paper, in reports, in black and white can be so confronting.

I know that CF affects lungs, so why does it hurt to read words like "increase in hilar markings and interstitial markings in both lung fields".

I know that Ruby's fingers have changed shape and its not necessarily indicative of the severity of her disease. But it cuts deep to see the clubbing field marked as yes + .
And she loses points for these things! Yes, that's right, she receives a score in 4 different health categories. I've always hated tests. Especially when the results mean so much.



We do all the things we do to slow the progression of an unstoppable disease. Although we have our ups and downs, on the whole she is happy and active. The CF part of her is often invisible, it is an extension of her. Not necessarily in a negative way. It just is what it is.
As Ruby says when we call her nicknames, "I'm not (insert cute nickname here), I'm just Ruby Monster Superhero".

So emotionally, reading the facts and figures of Ruby's health, covering topics from nutrition to gut health, was a real kick in the guts. I'm not a medical professional, I'm a mother. And as a mother, it is hard reading about the issues your child faces.

On the other hand, I am so grateful that they sent us this report. It gives me more to look over, more to study, more information to digest. And although some of the results were less than perfect, it would be wrong of me to not feel grateful for all of the positives. Her weight was great, we got good feedback about the wholesome diet we have. Her CF overall is classified as "mild". We are going a good job! So many others have it so much worse.

I may sound over sensitive, but what I really am is scared. It scares the living crap out of me that this is a progressive disease. It scares the hell out of me that at only 3 years old, she is already declining in the one thing that is practically irreversible - lung health. It scares me that our next annual report could be very different. And then the one after that, then the one after that.


But we will keep fighting. We will never let our guard down. We will never give up or slow down.

A is for Awareness

Our 65k 4 65 Roses walk finished just a few weeks ago and I have already gotten involved in another awareness activity for Cystic Fibrosis. People are going to start thinking that promoting CF is a favourite past time of mine! Well, believe me, it's not. So why dod I do it? Well, the obvious answer is because my youngest daughter has this disease. But that in itself is not the reason. There are a few other reasons why I pour my energy in making my community more CF aware.

One reason is, CF is a common disease that is not very well known. There are no major ad campaigns, no posters in shopping centres. It is not very well marketed. That sounds quite callous, I know. But the sad truth is, if you want to raise money and awareness for a cause, you have to sell it. I don't believe that this happens with CF. And why not? One baby every 4 days will be born with this disease. It has no cure. It is terminal. It is ruthless. It is everywhere.

The other reason is, awareness can lead to fundraising. The reason that most people with CF are now reaching adulthood is because of medical breakthroughs. Research into physio, medication, diet etc etc. But this doesn't come cheap. We are competing for your fundraising dollars and we want to show you exactly what you are buying us.

In Australia, Cystic Fibrosis is symbolised by a red rose.
www.cysticfibrosisaustralia.org.au

Which leads to my next reason. Awareness is a sign of hope. A cure for CF is a future possibility. Fingers, toes and everything else crossed! We are not a lost cause! We are a cause with a light at the end of the tunnel, we want you to join us on this journey, and help us reach that goal, and share in the joy of curing this disease.

And finally, for me, a burden shared is a burden halved. Well, maybe not halved, but I do find it therapeutic. And, at this stage of our lives, I have the ability to share, and blog, and Facebook nd the rest of it. I'm sure a time will come where I don't want to write anything about CF, or Ruby doesn't want me to. There will come a time where I simply don't have time, or the mental energy. But for now, I can so I will. And when I can't I'm confident there will be someone else affected by CF doing it instead. We all take our turn.

So for the next 25 days, we will be bringing you The A-Z of Cystic Fibrosis. Today, for the letter A I have chosen AWARENESS so I'm going to leave you with some awareness campaigns from around the world. Because all over the world, we need a cure.

Eva's story is one of love and hope. Her journey of sickness and transplant was filmed and documented. You can learn more about Eva at www.65redroses.com

Cystic Fibrosis is also known as 65 Roses, due to young children not being able to pronounce it properly. The Wolverines have a famous song "65 Roses". It's very touching and explains a lot about having someone in the family with 65 roses.

TV Commercial for Cystic Fibrosis NZ, filmed entirely underwater - no computer tricks - all real, using NZ champion free divers. 

Operation Fatten Up

Maintaining a healthy weight can be a struggle for people with CF for a combination of reasons. Most people with CF are pancreatic insufficient, which means their body does not break down fats and protein. These people need to take digestive enzymes every time they eat. A high calorie diet is needed to counteract this mal-absorption. It's also needed as people with CF are working harder to breath than you or I. Simply living, burns more calories than average. And during periods of sickness, weight is easily lost., when it is needed the most.
There is a direct link between having a high BMI and being healthier overall. It wasn't until people with CF were told to have a high calorie diet, in conjunction with enzymes being used, that the a age life expectancy increased past teenage years.
All of this information puts stress on parents feeding their kids with CF. Suddenly "healthy" takes in a new meaning. In the early days, your baby is monitored, charted, weighed, measured so closely, you feel like you are raising a prize turkey.
During our visits with our dietician, I was interrogated with hundreds of questions. How much of this? How much salt? How much do you add to this? How much milk? How many poos? What colour/consistency? How long do you spend eating?"
If the dot on the graph drops below a certain point, then there are things to try. Polyjoule, pediasure, formula, appetite stimulants, Ensure, feeding tube. It's like a big black cloud hanging over you, waiting to rain at any time.

And then like everything else on my CF journey so far, I stop listening enough to do my own research and start thinking for myself. There is a whole world of good food out there. Why can't I use it? To be fair, our dieticians have always told us that a CF diet is not a free pass to junk food. But in my experience, healthy alternatives have not been widely suggested.

So the whole point of this entry is to share the following link with you. I started to post it on Team Ruby but waffled on do much, it passed "status length". The post is written by Jo at Quirky Cooking and is a wealth of knowledge about gaining weight in a healthy way. Because, to be brutally honest (as I always am), people with CF never used to have to worry about their health in old age. Getting to old age was beating the odds in itself. Now, people with CF are living past their 30's and overall health is so so important. That's hard to achieve if a high fat diet is a result of empty calories from McDs and KFC.
So if you want to get a bit if an idea on what "real" food is out there, read through this link:
Nourishing & Strengthening Foods . . . for those who are Underweight or Recovering from Illnesses

Oh, and did I mention I'm getting a Thermomix? It's my new weapon in my war against CF!

What's Your Story?

I chose the 3 vacant seats on the train that were closest to the vestibule as it was the most convenient spot, travelling with 2 young children and a pram. I decided to ignore the un-welcoming looks coming from the lady we were sharing the 4 seat set with.
We had just as much right to be there.
The girls were well behaved and the lady stopped looking so cranky. In fact, it didn't take her long to start smiling at them and to respond to Ruby's incessant "hello lady!"
The lady had a giggle when Ruby thought the train was going to go in the water, and gave me a sympathetic smile when they were arguing about who can look out of whose window. Eventually my crazy kids antics had her smiling and happy.

As we approached her station, she said to me "thank you for sitting near me. My 7 year old grand-daughter has been diagnosed with leukaemia and I'm on my way to Westmead to visit her. I really needed cheering up, and your girls really made me smile".

Then the train pulled into the station and I didn't really know what to say in the next 3 seconds, but Eliza filled in for me and yelled at the top of her lungs; "it must be your lucky day, meeting us!"

The lady left the train in peels of laughter.

You just never know what the person next to you is going through.

Outrunning the Train

The following is written by Ruby's dad. There are times in our life where it becomes evident that Ruby's CF plays on his mind, putting it mildly. After reading this piece, you may be able to feel what it is like, loving someone with a progressive chronic illness.

Picture a railway tunnel. You know the old style brick/sandstone ones with soot on the walls and  moss around the entrance. It is seen entering through the side of a mountain, just a dark opening. If you stood on the outside of this tunnel, it would stretch far off into the distance, with no visible end, with no light at the end of it, just a never-ending darkness with numerous dangers and obstacles.  This is the tunnel we entered as a family when Ruby was diagnosed with Cystic Fibrosis. She was 3 days old and at the time I didn’t even realise this was the path we had embarked on.

Now picture a big old steam train, huffing and puffing, smoke pouring from its stack, wheels screeching and carriages rattling, steam whistle blasting. This train has entered the tunnel behind us and the only way out is to make it to the end before this train bears down on us. In my mind, that train represents Ruby’s Cystic Fibrosis. It is coming through that tunnel, I can hear it, I can feel it but I’m not sure how close it is. I still can’t see its ominous light, I can only feel the wind it is pushing through the tunnel.  I am trying to drag us through to safety, we are running blindly. Every now and then a small light is on the tunnel wall, this is where we learn some of the dangers in the tunnel, we begin to understand the realities of negotiating this tunnel but so many obstacle still remain hidden.

Each time we trip or stumble that train gets a little closer, the noise a little louder, the rumble of its approach can be felt that bit more. We hope that we will see the daylight shining that signals the end of this tunnel. We are confident that one day the tunnel will end and Ruby will be free from this race. That train will have run out of steam or, a medical breakthrough will derail it for good. For now we can savour the moments of light and hope they increase, we can escape to another place at times and enjoy the good moments and joy her life is bringing to us but each and everyday we must re-enter that tunnel and keep on running and carrying our Ruby as far from that train as possible. There is no day off from this fight, there no cure to stop this train, only the reality that some day it will bear down on her and take her away, just like it has to so many before her.  All we can do is keep her medications, treatments and physio happening each and every day, in the hope we slow the train down.

For now our job is to carry her as far as we can, then the inevitable will come and she will need to run and take up the journey herself. All the lessons we can learn about the tunnel and where all the lights are, need to be passed on and taught to her. What obstacles she will encounter, what happens if she stumbles and how we can try and stay ahead of that train will need to be imparted.

Soon she will be old enough to ask ‘why she is in this tunnel and why is she running’. I dread that day, the day she will hear the train and feel  its rumble, its wind pushing behind her, the understanding of why we do all we do each and every day for her. The realities of what the train means.

Thankfully we have a great support from family, friends and her medical team at Westmead Children’s Hospital. The journey would be so much harder without these shoulders to lean on, without the good advice, without knowing people who care so much.

We need that cure to throw this train off its tracks.

Salt Therapy

I'm not ashamed to admit, I've been struggling in the last week. I have felt like I haven't been the mum I should be or the mum I can be. But what's been even worse, I have felt like my kids feel the same way.

Late this afternoon, our day was taking the same path as it has been doing lately. Kids getting cranky at each other, me getting cranky at them, setting ourselves up for a night of tears from all parties involved. It was nearly time to start dinner but I decided to take an impromptu trip to the beach. I wanted to get out of the house. I decided I should take the kids with me. (joking, joking, I was always going to take them).

10 minutes later we were down at the beach. Eliza headed to the water straight away to jump waves. Ruby, in true little sister style, followed straight after her. But she wouldn't let the water touch her feet, she was too scared.

So I went in to where the waves were mid-calf and she ran after me. Facing out to sea, she stood behind me and wrapped her arms tight around my legs. Every time a wave rolled in, she clung tighter, pressed her head against me and squealed with laughter. For 15 minutes she clung there. Her grip never faltered the sand swallowed her feet and the small but powerful waves rushed past her. She made me feel strong and happy. I was her rock, she trusted me 100% to keep her safe. It was exactly what I needed to remind me of what I mean to my kids. And what I need to be for them.

Eliza's need was totally different. She spent her time running in the water, jumping waves and chasing imaginary fish. She was content to play on her own, without any interruptions, periodically looking over her shoulder at me to make sure I was watching out for her. Which I was. I will never stop watching out for her.

We came home happy and salty.

Amanda

Utterly emotionally drained after saying farewell to a beautiful soul today. I cried for my friend, who lost her sister. I cried for her mum whom I share a common bond with. I cried for myself. The sadness in the chapel was tangible. No-one wanted to leave. No-one wanted it to be final.
Amanda was well loved. Her friends grief and tributes left me wishing I knew her better. She was an amazing person and I look forward to hearing more stories about her life, when her sister is ready to share them with me. A life so full of love and living that it's hard to understand how such a progressive illness eventually takes over.
The drumming tribute calmed and grounded me. What a beautiful parting gift her friends gave her. Observed by a lone girl, dressed in colour, shrouded in sadness. A woman who has lost her best friend. What can you say to ease the pain?
Amanda did not let Cystic Fibrosis get her down. Anything I say about her will sound like a cliche. Her life was about kindness and nature and for standing up for what you believe in. In 28 years, she did more, felt more, helped more than others do in 80 years.
I know I am now going to live every day better, for having known Amanda.
Today was a sad day, my friends and I held each other and cried. Friendship is a beautiful thing.

Closer

My skin is getting thinner instead of thicker. My bubble is popping. Reality is setting in. I don't like it, it shakes my soul. I have started this journey backwards.

Most people who have had a baby diagnosed with a chronic illness start off on shaky ground. They are worried, fearful. Who can blame them for thinking the worst? Their whole world has been turned upside down, and not for the better. After time, they start to find normality. No sorry, normality is the wrong word. Nothing about this is normal. They learn to live, and see the positives through the shit. They find hope in medical advances, feel purpose in being proactive. Like most things in life, I seem to have gone about it the wrong way. I started off full of confidence and purpose. I hit the ground running. Don't get me wrong, it didn't take me long to find out what CF was about. I made sure I knew as much about it as early as possible. And to me, this was (and still is, always so much more to learn) a way of coping and preparing. Much like you explain to young children what is going to happen in a check-up so they know what to expect be less fearful, I have tried to prepare myself for whatever challenges may come. Osteoporosis, diabetes, IV antibiotics, more hospital stays, lung function decrease, nasty bug, transplant list. Can't shock me CF, I know it all. And I won't let you scare me enough to fear life itself.


But now, Cystic Fibrosis has taken on a form for me. It's dark and fluid, and just out of the corner of my eye. It watches me give treatments to Ruby, it follows me around. CF isn't scared of me anymore, it's just loitering around us. Nothing has changed with Ruby health wise. In fact, she is clinically doing quite well at the moment. But it's still there, waiting.


Cystic Fibrosis claims lives all the time. You just have to be part of any CF group online to see how often. It hurts when we lose a member of our community.

 Then someone you know personally dies of CF. Someone I knew as a real-life person, separate to the CF world where we are joined by the same disease. Someone I got to know before I had Ruby and even knew what CF was. And it rips my heart out. It's the pin that pops the bubble. Her death leaves me wide open to questions I usually I would not tolerate. To the fact that this journey will not end well. No matter what I do. But most of all, I feel sadness for my friend who has lost her sister. I hope with all my heart that Eliza and Ruby will have the same kind of relationship that J & A did.

What difference does time make? If you know you are going to watch your child die, why should that hurt any less now, compared to when it is actually happening? Is the knowledge just as bad as the event? I'm guessing not. There is always more room for pain.

There are older people with CF out there. They teach us that there is the chance that my daughter can live to past her 30s. I should take comfort in this. But instead I get a bit sad that these people have something special about them, and that special something is their age. An age that is midlife to the rest of the world. Greedy me, I want Ruby to grow old and wrinkly.

I don't really know where I am emotionally at the moment, but I am happy to just drift along and see where I land. What will be, will be.


Dum Spiro Spero

Annual Review 2012

Ruby's second annual review was today. Sort of like a birthday, but a celebration we would rather not be having. All 4 of us took the trip down to Westmead today. I was very organised and packed a bag full of food and entertainment for the kids.

We got there at 9.30 and started with the normal weigh-in and height measurement. Ruby was very compliant and did exactly as she was told. In fact, she was like that most of the day. It takes a lot to upset her.

Eliza lending some weight to Ruby

Her sweat test wasn't until 10.30 so we started off with the normal nurse checkup. Much to our amusement, Ruby and Eliza burst into squeals of excitement when the suction machine was wheeled in, as it has a huge tin of lollies on it. Ruby had her sputum suction and fir the first time ever didn't cry. It will take a few days to get the results back.  Both kids received a specimen jar full of jellybeans!

Physio checkup was all good too. We discussed different blowing exercises and will be starting off with blowing bubbles in the back with a piece of tubing.  We also discussed getting a vest again. Lot's to think about there especially as a long term study has been completed where it was shown that PEP therapy is more efficient than the vest. 

Then we were off to the sweat test. Electrodes were attached to Ruby's skin to stimulate the sweat glands, then some filter paper was placed onto her skin to collect the sweat for analysis. She left this on for half an hour, but unfortunately not enough sweat was produced and we will have to try again another day. All through the process, Ruby just watched intently what was going on and never got upset. Until it was time to pull the tape off, and then it really hurt her and she had a good cry. 

The electrodes that stimulates the sweat cells to test the level of chloride

Then a consultation with the gastro dr who felt her belly for any enlarged organs and hard parts of the bowel but all was good and squishy. We then chatted to the dietitian which is always painful as I can never actually remember all the things I feed Ruby and I get asked questions like "how much cream do you add" or "how much water does she drink" and my answers of 3 splashes, or showing an amount with my fingers aren't good enough. But dieto is happy with the amount she is eating and the amount of Creon that I am giving her, and no changes need to be made, or supplements added.

Finally, we see Ruby's main dr who checks her lungs (all clear) and we talk about new drugs coming and her general health. We decide to start her on Pulmozyme which is a drug that changes the DNA of mucous, making it shorter, therefore thinner and easier to cough up. This drug is used in many countries as a preventative and works really well. It is try expensive ($25,000 a year) and can only be covered by the PBS if you meet a certain criteria. Which Ruby does, based on her age and recent fight with pseudo. As the doctor said, "we are trying to preserve Ruby's lungs until there is a drug available that will manage all of CF" (referring to the new miracle dug being trialed with different gene types, Kalydeco).

So I feel very lucky that we don't have to push our clinic to try these things, and that we have a health care system that makes this affordable to us. I also appreciate that these things can seem inconsistent between clinics. As Ruby is too young to have the lung function tests, she does not have to show lung improvement to stay on this drug. 

New toys from clinic for being a good girl

So then we pick up a huge bag of meds from the CF pharmacy, pickup the bits and pieces that we have gained (including 2 cute dr teddy bears), make a date to come back in 2 months and treat ourselves to lunch at the hospital cafe.  Oh yeah, then walk to Parramatta Park where we had to park.

A busy day, but both kids did well. Eliza looked out for Ruby and Ruby was charming to the staff as always. 

CF never stops. We are always learning something new, can't rest for  second. 

Past Thoughts

A memory came to me the other day. Just popped into my brain with such clarity that it was hard to believe that I had forgotten about it in the first place.

I was heavily pregnant with Ruby and having a restless night. Tired but unable to sleep. I drifted off into that world between wake and sleep. My thoughts were crystal clear but rambling along with no guidance by me. I was going with the flow. I imagined what it would be like to hold my new baby. I wondered if all other mums imagine the same things. I wondered how mums of sick babies coped. I was only going to stay in hospital for the mandatory 4 hours and then bring my baby home. Hospitals are for sick people. Then I really started wondering what it would be like to have an ill child. Imagine if your baby had to go to that special ward with all those high tech looking cribs. Those poor mums. I wanted to empathise with them. I tried my hardest to image what it would feel like. The stress, the raw fear. And suddenly it was like looking at those 3D pics where you finally see the image pop out. I was suddenly one of those mums. Lying in my warm bed with my baby snuggled safely in my womb, I was transported to a world of emotions that weren't mine but felt so real. I felt the coldness of being scared. The confusion of not understanding what was going on. The desperateness of wanting to hear the words "everything is ok".
I must have finally fallen asleep. In the morning I was thankful that I wouldn't have to worry about anything like that.


Maybe people are right. Maybe I am the right person for this "job". Because I have held myself together. Whether that is healthy or not, I don't know. Probably not healthy, but hey, what can I do about it?

So go ahead CF, throw it all at me. Because you will not crack me. Whatever you put in my daughters way, I will fight. Whatever new twists you turn, I will counteract. I will research, I will evolve, I will advocate and I will keep my daughter as healthy as she can be. You picked the wrong person. I went through all the emotions in the comfort of my own bed, in the safety of it being all in my mind. I can focus all my energy on not making you the focus of all my energy. My family will enjoy life. You are but a nuisance. Ruby may have Cystic Fibrosis but Cystic Fibrosis does not have my Ruby.

Amber

I bought Ruby an amber teething necklace when she was 4 months old to as I had heard from a few friends how it help their kiddos with teething pains. 
Ruby was on an 18 *month* course of antibiotics, she was having liquid vitamins and we were also learning about other medications she would need. We had just given in to using formula as well as another synthetic substance called PolyJoule to help with her weight gain. I made a promise to her that I would limit the amount of chemicals her body receives as much as I could. So that was my main decision in buying the necklace as opposed to using the teething gels available. 


So in regards to teething, did it work? Well let's say I didn't even notice Ruby had teeth until one day I heard the metal spoon hit them. I had a good look inside her mouth, and there were about 4 pearly whites shining at me! To me, that shows the analgesic qualities in amber help bubbas with teething pains.

Ruby at 7 months wearing her Amber necklace 

And then I started researching it a bit further (as I do). Amber is fossilised resin, which warms against the skin, releasing its therapeutic properties safely and naturally. It’s believed to help and treat the throat, stomach, spleen, kidneys, bladder, liver, and gallbladder, alleviates joint problems, and strengthens the mucus membranes. The words mucus membranes jumped out at me. This is the first area to be hit with parasites and microbes. Not nice for anyone, even worse for someone with Cystic Fibrosis.  

The claims get bigger and better. It draws disease out of the body, aids digestion, and absorbs pain and negative energy. Now I haven't gone and checked all the sources or looked for medical trials. But I did borrow Ruby's necklace once when I had a killer toothache and held it against my cheek. The pain halved immediately. Only drawback was, as soon as I removed the amber, the pain increased again. So I ended up shoving the necklace in my mouth where the sore tooth was. If you have ever had a toothache, you understand that you will do anything to make it better! And that reinforced my belief that amber is not an old wives tale.

I'm not naive enough to believe that Ruby's disease will be cured or fully treated by non-invasive options such as wearing an amber necklace. But I am not going to pass up the opportunity to help my child feel as comfortable as possible without the use of even more drugs. I have since got a necklace for Eliza and one for myself. It is also supposed to help concentration and memory, so maybe I should wear ten!


EarthyMamma has very kindly given us an amber necklace to give away to a reader! Read below on how to enter.

GIVEAWAY
to enter this giveaway please do the following steps

1. Comment on this blog and tell me what benefit of amber appeals to you the most and why
2. Go to www.facebookcom/earthymamma and like their page (they have heaps of great items!)
3. Make sure you are a liker of our Facebook page also (www.facebook.com/teamruby)

Terms and Conditions 

• 1 x amber necklace will be awarded worth $24
• giveaway closes on Thurs 7th June 2012 8.30pm
• Entry is only available to Australian residents only 
• Winner to be chosen by me

Disclosure: I was not paid for this review or giveaway to take place. The opinions expressed on this blog are my own unless otherwise stated.

Clinic Visit May 2012

All 4 of us made the trip to Westmead today. I swear the hospital shrinks every time we go there. It used to be a huge imposing city within a building, now it doesn't seem so big, and only slightly less daunting.

As soon as we get there, Ruby gets weighed and measured. Her weight had dropped ever so slightly but that is to be expected after the 3 months of fighting pseudo. Now that the pseudo is gone, Operation Fat is number one priority again. You would think that keeping your child a healthy weight is easy, but actually it is quite hard. It requires planning, calculating, coaxing and buying extra high fat food. And you can't relax about it, it is never ending. Then you have to factor on the enzymes. No point working hard to serve healthy, high fat meals if you are not giving enough Creon (pancreatic enzymes) to cover it. 

Her lungs sound good, her fingers show no signs of clubbing. Although they were embarrassingly dirty! Eliza took the opportunity to ask the dr if people with Cystic Fibrosis were allowed rabbits, and was very pleased when the answer was yes! With precautions of course with cleanliness. 

Dr Eliza!

Ruby had another sputum sample collected. She has finally worked out that a jar of jellybeans follow the procedure, so no fighting occurred. 

Our CF nurse suctioning for a sputum sample

We took in our new Aeroneb Go nebuliser, and our CF nurse and physiotherapist had lots of questions about it. They were all happy with how it worked, even though Ruby didn't want to wear it for them. They have been recommending to to patients but haven't had many personal reviews on it, so we were happy to provide one. They were amazed at how quick it nebulised 4 mls of hypertonic saline. 

Speaking of saline, the concentration that Ruby has been having was increased. So she was on 3% (which is the same as sea water) and now she is on 6%. Hopefully this will produce a more productive cough.

A while back, Ruby's Vitamin A & E levels were very low so we doubled the dosage of liquid vitamins that she was on. So today she had to have blood tests to check the levels again. And my little warrior didn't even flinch. She just watched the needle go in and then showed off her pretty bandaid. That's the first time we have had no tears xx

Showing off her pretty bandaid (and yet another specimen jar of jellybeans!)

We have booked in to go back for a sweat test. This is one of the ways to diagnose CF. It measures the amount of sodium in sweat. A high reading indicates CF. Although we don't need to confirm Ruby's diagnosis, it is good to have a reading to use as a baseline, especially if she is chosen for any clinical trials.

We also booked in for our next visit which will be her annual checkup. My baby will be 2 years old soon, sob!