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. 

Be a Good Friend

We get told some pretty scary things about CF from our kids doctors. Lots of it won't affect you. You don't have to worry about how to help our kids avoid diabetes or osteoporosis, you don't have to measure up the pros and cons of sending our kids to swimming lessons, you don't have to make sure that physio is done properly. And we don't expect you to worry about all of those things. That's our responsibility, our priveledge.


One of the scary things we are told about, is how a common cold, and other illnesses that are minor to most, can affect our child in the long term. What might be a day off school for your child, could very easily be a hospital admission for ours. A week of illness for your child could equal permanant lung damage for ours. Your child will feel better and be better. Our child may feel better, but all of these "little" illnesses shorten our childs life. That's just how it is.


Again, not your problem. Or is it? Being the mum of a CF child can be stressful and sometimes isolating. We don't want to lose friends, we need you more than ever. But we know more now, and our priorities may have changed slightly.


The good news is, it's easy for you to still be a good friend! There are just a few simple rules. These should help you out.

Accept that Cystic Fibrosis is serious.

One of the hardest things about CF is that our kids don't often look or act sick. And we don't really like reminding people. But the fact is, our kids have an incurable, life shortening, chronic illness that needs to be managed every single day. They are not the same as other children. We are not being cotton wool parents, we are keeping our children as healthy as we can for as long as we can.

Learn the basics.

We don't expect you to become an expert on the subject, but knowing the basics of the disease will help you understand why we are so anal about some things! In the smallest nutshell in the world: Cystic Fibrosis is a disease that causes the thickening of secretions in the bodies organs. This means that germs like to breed in the lungs, causing irreversible lung damage and eventually respiratory failure. If you would like to know more...ask! Your head won't get bitten off, I promise. Or you can check out the links at the bottom of the page. And no, they won't grow out of it.

Practice good hygeine.

Our kids don't need to be stuck in an antibacterial bubble. Practicing normal good hygeine will protect our kids. Wash your hands often, cover your mouth when you sneeze or cough. If you want to be a super good friend, let us know that you know that we want you to know! ie "oh give me a cuddle of your bubba! I can't wait to get my freshly washed hands on that gorgeous bundle of joy!" And of course...

Stay away if you are sick!

(or smell like smoke).

This is the most important point. Read the start of the page again. Your minor illness is our major fear. We won't get offended if you cancel a playdate, we won't hate you if you can't come to our dinner party. In fact, we will love you even more if you avoid us when you or your kids aren't well. This is the part where you can help us with managing our child's illness. Please please please let us know if your child has been sick. You don't have to decide if we should stay away or not, we will make the call. But we need to be able to make an informed choice. The smoking part is self explainatory and common sense.

Don't turn us into the bad one.

These rules will never change. Our child will always be sick, you will always need to practice good hygeine, we will always want to know if you or your kids are sick. Please don't make us bring it up all the time. We would really really really appreciate it if you remembered these points. It's no fun telling people over and over to wash their hands or cover their mouths. It's frustrating and sometimes embarrassing, but we will do it if we have to. We hope our friendship is worth the trouble.

Kiss and cuddle our kids!

I hope I haven't scared you off. The rules aren't too tricky, and our kids (like all kids) need all the love and good times that they can get. Big cuddles are awesome, tickle time is hilarious, holding hands is precious. If you are well and washed, please don't treat our kids differently.


That's pretty much it! Our lives changed dramatically when we got this diagnosis. We try to keep things as normal as possible, but it's not always possible. Our friends and family are so important to us, our childs health more so. We need you, please be there for us.

Cystic Fibrosis Australia

Oli & Nush A short cartoon about CF.

Erin & Hudson

Believe it or not, I'm not the only mum with a CF story to tell! Everyone has a different experience, here is Erin's.

Its quite hard for a mum to write about the happenings of their child coming into the world at the best of time, but I'll do my utmost to put it down without too much sop sop (not sure who I am kidding here)
On the 3-3-2011 we welcomed our Hudson Trevor Kingsley into the world. Fourth time was another 'blissful' labour, no complications and just as smooth and kind to me as the other 3 were. Hudson was tired pretty much from the time he was born til days after he was diagnosed. His body temperature was also quite cool and getting him to feed seemed impossible and he was almost 12 hours old before having a feed from me. But of course at this stage it was just put down to how hard of a job it was for the lil guy to come into the world.

I can actually recall quite a few times during my pregnancy that I had some inner feelings that all would not be as well with baby number four and even that it wouldn't be something we would pick up on right away. But of course I had him and those thoughts were forgotten until my best friend reminded me that I had those intuitive thoughts. A few days after being home the midwife came to do the routine heel prick test. I remember how lovely she was, complementing me on my lovely children and the great family I had made and even took a family photo for us just before she left. Before leaving her famous words were 'no doubt you will hear nothing from me but as per the other children, you only will if there is something wrong' Again another lil pang in my tummy that I was not as confident in hearing nothing like I was with my other babies. In days that thought was again gone and didn't think of it again. 

Hudson was a wonderful baby, he slept like I could not believe, only waking for a lil feed and for a change and really was never awake for long at all. Days past and this started making me feel like it was not OK that he like this, not to mention the frequent poo's he was having. No kidding I could change 1 nappy, not even get him back to the lounge and he would have gone again (number two's I mean) I can remember my cousin Donna being over for a visit and I expressed to her that this happened often and I didn't feel like it was normal. After not hearing from the local maternal health nurse to see when they would be doing his home visits and setting him up appointments, I took it upon myself to go there, knock on the door and insist they weighed him and spoke of his routine and frequent bowel movement but was told "don't complain, you're lucky, he is just a really good baby". That gave me no mind relief what so ever. Then she weighed Hudson and just as I had known, the lil guy was shrinking, it wasn't in my overtired (how could I be he slept all the time) mind. From there is was recommended I would need to wake him every 3 hours and give him a good feed and do whatever I needed to get him to wake up properly. I could strip him down to his nappy and he wouldn't stir but continued to do as recommended for the next almost 2 weeks and just began to enjoy him and try and not worry about why he was like that.

One gorgeous sunny morning (I know it sounds corny but it was, that kind of weather always makes me feel at my best) I had dropped Lachy off at school, came home and was in the lounge with my 2 girls and Hudson just admiring them loving him and enjoying him. I was texting Steve back and forth, just things like how much I love him and thank you for giving me another perfect child, how lucky we are and how happy I am while snapping away with the camera and Hudson and the girls. Within minutes of this unreal day that all mum's love to have and live for, after all its the reason we have them isn't it? My mood, life world had turned from the happiest to well, the worst I have ever felt in my life. The telephone rang but as I was in the head space of the moments I was sharing with Steve. I didn't really take note of where the lady who was on the other end said she was calling from. I snapped out of it when she asked how Hudson was, I assumed it was the health center nurse calling to let me know when I could bring him back in. So I was in my la la land saying, 'Oh he is fabulous, actually he is the perfect baby, he sleeps well feeds well and seems very content (god only knows how the lady on the other end must have been feeling, something like 'this poor girl is going on and on about how fantastic things are with her baby and I have to tell her this terrible news). Eventually I stopped bragging about my perfect baby and she said. "Erin I'm calling about Hudson's birth screen test."  (My heart was over pretty much at this point) One of the things we test for is Cystic Fibrosis and its come back that Hudson has tested positive. I'm crying beyond control at this point. The house starts closing in around me and my head feels the pressure like its been put in a vice and someone keeps tightening it. The lady is still talking saying something like 'call who you need to call, I'll give you an hour before I call back to let you know what you need to do". I don't recall hanging up the phone, I can remember that I was trying to call Steve but I could not work the phone, I must have got a text through to him and my father in law. Poppy had called me back and I was crying to him letting him know I needed them (him and nanny, Steve's parents) to come down to be with the girls cos something is wrong with my baby. Before I knew it Steve was inside the house home from work, that is how I know I must have managed a text. he himself was very confused what could be so so wrong when only minutes ago he was receiving texts from me about how happy I was and all of those good things and I told him, Our baby has Cystic Fibrosis and we cried and we cried. It's only as I write this I am now wondering how our girls must have been feeling [:(] )

The hospital called back and we were told we needed to take Hudson in right away, I don't remember the trip to the hospital at all. First we met the genetic counsellor who explained how it came about how Hudson has CF and a little bit about what it actually is. I will say right now, we too were not at all familiar with what it was and I had actually mistaken it for CP (Cerebral Palsy) because when they called I remember taking him out of his bouncer and making him move his limbs around and looking at his head and screaming no he doesn't have it he is normal he is completely normal! I honestly thought we would get to the hospital and they would soon learn they had given us someone elses test results and mixed them up under Hudson's name. But it wasn't true. We were taken across to the hospital to meet what would and has now become, our CF team, our CF Monash family. we were taken to a room and introduced to more people than I can remember, I didn't really look at anyone, just their feet, there were so many different pairs of shoes. I held Hudson, he clung to me like a lil koala bear and he slept, as he always did. I can remember thinking. Who are all you people? You have no right to bring us in hear and turn my families world inside out and upside down with one phone call. T he sound of them all rusting through papers and taking notes was so so loud I wanted to scream at them, and for the lady that just constantly spoke and spoke and kept giving us all this information about how we would have to manage our lives I just wanted her to stop talking, I wanted her to shut up, in my mind I swore to god if another person walked in those doors and said, you will now meet so so and an they will be your such and such I was going to storm out of there with my baby and never go back. But I knew I couldn't, I was now at the mental point of knowing that the information all of these people had meant life and death for my son, these people would be the people who will forever help us keep him alive. These people were not to blame, they kept telling us 'its not your fault, there is no way you could have known' and that was just my problem. No one stuffed up majorly while I was pregnant, no midwife stuffed up while I was in labour, and we didn't stuff up after taking him home. There was no one available to point the finger at and yell and scream at to get my hurt and anger out on. No one. Because Hudson having CF, is no ones fault. Its a genetic disease that Steve and I had no idea we were carriers of to know that it was a possibility that one day we may have a child that had 1 in 4 chances of having CF. So our dear Team Hudson supporters, that is how Team Hudson started. After much sorrow and sadness (there still is and no doubt always will be) we knew our energy had to be used for the great of good and top make change for our dear lil Hudson and all lil CF sufferers out there. I told Steve, there is a reason Hudson has CF and as vain as this sounds, I believe with my whole heart its in his journey to have it, because he is so loved and instantly liked by all that cross his path that people wont be able to resist want to help fight the CF fight with and for him. because of how loved he is I know that he will make so much change for the greater good for this horrible disease that til this day, still takes way to many precious children from their loved ones. Because of Hudson I believe so much good will be done. Even if its just awareness of the disease, I cant ask for more than that, cos as I already admitted, until Hudson was diagnosed, we had no idea what CF was. It is the mission of Team Hudson to spread awareness of CF to anyone and everyone we can. Cos lets be honest, no one put money into something they are not educated on so I know that education will equal much more funds being raised and that will lead to our CFers having a longer easier managed life that what they do as it stands. I'm his Mummy, I'm his voice and that people, is not my job but my dream and my goal. Thank you all for helping us achieve it.

Bless you all [♥] Hudson's Mummy Erin. ~BREATHE~

2nd May - THE FIRST YEAR, THE WORST YEAR

Well we are still in the first year, so I can't really say it is the worst year! It definitely has bad times, but there are so many wonderful moments as well. 


Compared to others experiences, I would say our first year so far has been quite uneventful. We've had a bit of everything but nothing too serious. It's been like an orientation period. A period of learning and unlearning. All the experience we thought we had as parents to a 3 year old? Out the window! Everything had changed. The way we fed Ruby, the physio, the medication...
She has never even spent the night in our room. She was an independent one alright. Didn't like lying in peoples arms, wouldn't go to sleep if you were holding her, total opposite of Eliza!

Eliza and Ruby meet for the first time

I found it hard learning about the limitations she will have. Being told things like, no indoor pools, no sandpits, no bath toys, no eating dirt, no jumping in puddles, use antibacterial products at all times, avoiding childcare. All said in the same breath as "but you can't stop her from being a kid".


The first year is hard because these are babies we are talking about. Babies who should be at home with their families in a safe environment. Not poked and prodded and detached from their family. 

Ruby's first breath of fresh air EVER! 15 days old.

The first year (so far) has also been so wonderful! Ruby is a great sleeper, that is all I ever wanted! We have seen her little cheeky character come out. She is a determined little thing with a beautiful nature. She wins people over by smiling at them, from the day she learned to smile. She loves watching her sister and I love watching them together. Just like a family without CF, the first year is a special year full of discoveries and special moments. Despite the start that we have had, I am loving this year so far!

 

Our first family photo! Ruby was 15 days old and finally cord free and able to leave the ward

31 Days of May - The Cystic Fibrosis Way!

This is a great idea that a fellow CF mum had to raise real awareness as to what goes on in a month of a CF family. We have chosen the month of May as it is international awareness month.

Everyday I am going to post something about Cystic Fibrosis  

Everyday you will find out something new about CF and how it affects our family and my child's life

Some topics won't be relevant to us...yet

We are one of many families who go through this, I will also be sharing their experiences with you

love and kisses to you all!

65 Roses Day

You have heard me go on before about what I believe is the lack of awareness about CF in Australia. It sometimes keeps me awake at night, probably more than it should.

Well, good timing for me, May is the official Cystic Fibrosis awareness month! Fri 27th May is 65 Roses Day 

My plan is to purge all of my awareness urges. I will focus on putting it out there for all to see. Hopefully once May is over, I can feel good about educating people about this disease, and I will be able to sleep better at night. 


And I am starting with you, my blog readers

So here are some things you can do

 Learn about this genetic disease and how it affects its sufferers. You can do this by checking out these links:

 Informative blog entries

Cystic Fibrosis Australia

If you have any questions at all about how CF affects our family, please leave a comment and I will tell you the answer, guts and all.

Use Facebook! Join Team Ruby so you can see what is going on and learn about CF and how it affects just one of its sufferers. 

Change your profile picture to a CF awareness picture (these can be found on the Team Ruby page). Write a status update as to why you are doing it. This may seem like a bit of a token effort, but it has been proven to be a very effective awareness tool. You will be helping spread the word.

Invite your friends to join Team Ruby

You could sell 65 ROSES DAY MERCHANDISE. See if your employer will buy one for your place of work. Hint that it would be a great tax deduction! Volunteer to sell them at train stations. Check out the 65 Roses website for more info.

Share Share Share

Share links, pictures, CF pages. 

Sharing is caring, and I know that you all care!

I am sitting here surfing the net (instead of cleaning the saucepan cupboard) looking at CF stuff. The fundraising and awareness part of CF I mean. And I am getting angrier and angrier and ANGRIER.

It's pretty poor really, the CF website is out of date by about a year, the links in it are also out of date (ie Great Strides info) and really, there doesn't seem to be much going on.

CF families, are we living in a CF bubble where only our friend know about this disease? This is not some weird quirky thing that only some people get!!! It seems that if you don't know someone with CF, then it doesn't exist!

I have only been in this CF bubble for 8 months. I had no idea about it a day before that. Why not? I should have. Every one should!

Everyone should know that one in 25 people is a CARRIER for this DISEASE. Everyone should know that one baby every 4 DAYS will be BORN with this DISEASE. Everyone should know that TRANSPLANT and DEATH before turning 37 is not a possibility, but is practically a STATISTIC! 

Excuse me, but where are that ads on TV? Anyone ever remember seeing one? There is a beautiful one for MS out at the moment. It breaks my heart, I want to give them my money. The autism one also gets me every time. Kids cancer awareness...well we all know how successful they are.

CF kids look healthy, BUT THEY ARE NOT!

65k 4  65 roses raised a LOT of money. I thought it was a starting point but it looks like the high point.

So I am angry. And I will continue to be angry until there is more done for our kids. I will do it myself if I fucking have to.

Now I'm pressing publish before I calm down. 

 

5th April
OK, so I have calmed down now and thought I should clear some things up before I get myself booted out of the CF community!   And also to correct my spelling mistakes. I just get frustrated and although Ruby is healthy at them moment, I have a real sense of urgency to get more support. I get frustrated when things aren't up to date eg I wanted info on buying an Entertainment Book as I know that is a good fundraiser for CFA. The webpage has not been updated since 2009, even though they are selling books for 10/11. This is just one fussy example. There are lots of others. 
There are many successful fundraisers that are organised by the CFA, I will do a separate blog entry on what is coming up.
And then there are the amazing parents and community members who organise their own fundraisers. People organising events in their own time to raise thousands and thousands of dollars.  65k for 65 Roses is a great example, raising around $140,000. I honestly though that this was the norm, but it is not.

So I'm sorry if I offended anyone. I know for a fact that the CF community is a strong, loving, supporting community who want what's best for the people and families living with CF in Australia. I know that the people working for CF Australia work really hard and are 100% committed. I know I sound like a new comer who doesn't know what she is on about. I just want more.

I want to help. 

Team Ruby

Well our day has been and gone. I'm sure everyone by now has heard me rave on about how touched and blown way I was with the amount of support and love that we received, so I won't write about the day. Instead, I have made a montage! Don't worry, it's not too emotional and not too long. But a picture tells a thousand words, so here you are...




Our fundraising so far is $14250 with more on it's way. Half the money goes to our CF clinic at Westmead hospital, the other half to CF NSW. It's not too late to donate if you haven't already!

DONATE TO TEAM RUBY


***if you have more pics, send them to me! There are team members I am missing***

Photo Friday

This is EVA MARKVOORT

A loud advocate for awareness of Cystic Fibrosis, research in the field, and organ donation

Despite a double-lung transplant, Eva’s body could not last.

She passed away on the morning of March 27, 2010.

 

 

 

 

Eva's page : http://65redroses.livejournal.com/

Bee in my Bonnett

Yes, I officially have a bee in my bonnett.

As a family, we have entered our first CF fundraiser/awareness event. We have entered a team in the 65k 4 65 Roses Walkathon. We are Team Ruby.

On the 5th of March Craig and other team members will be walking 65k in one day to raise money for the CF Clinic at Westmead Hospital and for CFNSW 

I feel like I am doing something. I have a goal, a purpose. I'm raising money to save my daughters life. I know that sounds melodramatic, but lets look at the facts. Let's look past her happy personality and beautiful smile and see whats inside. You would see a set of lungs full of mucus, ready to hold onto and breed bacteria, turning it into an infection, resulting in scar tissue. You would see a pancreas that doesn't work as it is too clogged up of that same mucus. You would see a re-sectioned bowel. You would see that same mucus again in the ovaries, stopping the release of eggs, leading to infertility.

Sometimes it's hard to compredend what is going on inside, when outside she is just so perfect.

But I'm getting off track here. Back to my bee. I've been buzzing around like mad, promoting our team and organising fundraising. This is so important to me that I sometimes have to take a step back and remember that not everyone has a child with CF. Not everyone feels as strongly about this as me. I have this sense of urgency about me and I don't really understand it. All I know is that money will cure Ruby's disease. I wish it wasn't like that but it is. The CF gene has been identified and has been cloned and "cured", but not permanently. They are so close to finding a cure , money pays for results, as simple as that.

I have had a few tears leak out during Team Rubys existance. The faith that I had lost in the universe (without really realising) is coming back. I have amazing friends. Hell, I even have amazing aquaintances! The amount of people that have helped us is just heart warming, it really is. Here are some amazing things that are happening for us:

My yoga teacher is donating a whole mornings takings to Team Ruby
My friend Shirley is donating 10% of her Avon sales to Team Ruby
My Tupperware lady is donating 20% of sales to Team Ruby
Our family friend Mel is walking the walk, but is also helping in a million and one other other ways, even though she is a mum and works full time
My friend Laura is giving away 3 remedial massages for us
My mothers group let me use them as an outlet, they are my best friends and I love them all
My cousin Michelle donated a manicure for us to use as a prize
My friend Caz is donating a family photography sitting to one lucky donor
My friend Anita has asked that no presents be bought for her sons birthday, just donations to Team Ruby

So, please help us out if you can! You can donate here:
www.mycause.com.au/teamruby 

And join our Facebook page here:
www.facebook.com/teamruby 

This will be our one major fundraising effort for the year

Thankyou.

Photo Friday

Isn't this a powerful photo? I love everything about it. I love the pose, the colour, her expression. I love that it is a real photo, documenting someones real story. The girl in the picture is Miranda Hutson. She is 22 years old and received a double lung transplant due to her Cystic Fibrosis in Jan 2010.  The hospital tags are hers, the oxygen tank was a part of her life before the transplant. I don't see the picture as being morbid or negative. I don't know why, but I just really love this photo.   Photographer: Curtis Almeter, who was also in hospital with Miranda.

So What If I Have Cystic Fibrosis, I'm Unstoppable!  is a Facebook page that Miranda has created. I love how the majority of the members are teenagers, and I sometimes stalk the page, watching them interact, and just be typical teenagers! It gives me great hope for Ruby.

Cute CF Cartoon

Well, maybe I should have just posted this instead of CF in a Nutshell!

Makes perfect sense and is great for kids and adults!

On and on...

I am a mum, I do mum things for my kids. Cook, clean, nurture, teach, play, raise...the list goes on. We all know how much is involved with being a parent, I am not alone in this!

But I am not a scientist, a researcher, a doctor or a health professional. I don't know how to cure Cystic Fibrosis, I don't even really understand the biological, genetic or technical side of it. I do know that the medical community is confident that a cure is close (and not in a "miracle cure" found on A Current Affair type shows way) and I have faith in that.

So, what can I do to help? I can spread awareness. I can let people know what CF is and how it affects us. I can hound you with raffle tickets, research links and status updates. I can share photos, stories and experiences.

So sorry if my blog posts and Facebook page seem a bit CF obsessive, but it's the only way I know how to contribute towards the best possible outcome.


 


Here is an interview with Dr Michael Boyle about the basic defect in CF and how the two drugs, VX-770 and VX-809, aim to help fix the underlying problems, but in different ways. Good news for CFers, even though it's not very exciting viewing!

Clinic

Clinic is where Ruby sees a team of specialists to help manage her Cystic Fibrosis. She normally sees  her respiratory specialist, CF nurse, nutritionist and physiotherapist. The team also includes a gastroenterologist and social worker. The clinic is at Westmead Children's Hospital. As a newborn, we were there at least every second week, now that she is a bit older, and more importantly, heavier, we only need to go down once a month. If she stays healthy, the visits will be spaced out to every three months.

Here is a photo journal of our clinic visit today:

 As soon as we arrive, Ruby is weighed and measured. She has put on weight and grown well! Infact she is growing longer so quickly that her weight is just keeping in proportion with her length.

  The staff at clinic always take the time to come and say hello. Ruby gets alot of attention as she always smiles at everyone.

This is the most unpleasant part of our visits. a sputum sample is taken to make sure there is no bacteria growing in her throat. The sample is taken by a suction tube being shoved down the back of her throat. Doesn't take very long to do. 

 This is the snack box in the nutritionists room where the kids are encouraged to help themselves! 

 There is always something going on at a childrens hospital! Today we got a visit from some fairies and superheroes. Eliza was very lucky and was given a bag full of treats! Textas, colouring books, stickers, jewellery, a magnetic "learn chinese" kit(?!)...

 Ruby with her respiritory doctor who is her primary medical carer. He is listening to her lungs to make sure they are all clear, which they are.

We saw the gastroenterologist today who checked out her surgery scar and asked lots of questions about poo!

We picked up some of Ruby's medication for the next few months. We always leave with more than what we came with.