Tag Archive | family

CF Wonder Drug

There have been some amazing developments in treatment of cystic fibrosis over the last few years, changing the lives of those living with the condition.

kalydecocollA couple of years ago, the world exploded with the release of Kalydeco. It was a drug aimed at certain CF gene types (there are many types out there, so this drug wasn’t suitable for everyone) 

It is a little pill that treats the underlying cause of cystic fibrosis rather than just the symptoms. The results of the drug were ground-breaking and life changing. People taking the drug were showing lung function improvement of up to 65% and had a new lease on life.

The downfall of such an amazing drug was the price. The cost of Kalydeco was around $300,000 a year! It simply wasn’t affordable.

After much lobbying and petitions, the Australian government approved Kalydeco on to the Pharmaceutical Benefits Scheme (PBS) which caused a sigh of relief around the country as the drug became much more affordable.

orkamabiFast forward to 2016, and another drug has hit the market. This one is called Orkambi, which is aimed at another gene type. Our family is excited about this one as it is aimed at Cameron’s gene type! This drug is expected to help almost half the Australian CF population. It has similar effects as Kalydeco

Again, the downfall is the price. Orkambi is currently about $260,000 a year!!

There was a recent petition to have it placed on the PBS list to make it affordable for everyone. However in the “wisdom” of the Australian government, they REJECTED the bid, claiming it was not “cost-effective”.

I don’t understand how they could think this? It is improving quality of life. It is improving health, which means less of other medications, less treatments, less time in hospital. Surely that all adds up in the end?

price

How much? Too much!!

So the petitions are starting again. Click here to sign and help show your support.

This drug is important and needs to be made more affordable! Lives depend on it!

Bella 🙂

Our CF journey so far…

On the 16th May, it will be seven years since our family was completed. On the 12th June, it will be seven years since our family member’s lives were irreversibly changed by two little letters.

Cam funny

Cam- our little joker!

The last seven years has had its up’s and down’s. Cameron is a vivacious little boy who lives his life to the fullest. He doesn’t walk, he runs through life (literally and figuratively!) If there is a joke to be found…Cam will find it! His diagnosis has not dragged him down in the slightest.

But that doesn’t mean there haven’t been hard times.

In the last seven years, Cam has been admitted in to hospital four times. There was one when he was diagnosed, sick with double pneumonia and underweight due to malabsorption.

The second time was when he was two years old. A bronchoscopy at annual review that year showed he was growing the dreaded super-bug Pseudomonas in his lungs, which is an instant minimum two-week admission into hospital for intravenous antibiotics.

Cam sick

Hospital is never fun 😦

The third time was unrelated to his cystic fibrosis. He had severe tonsillitis and his throat closed over. It was a scary 24 hours! We were more worried about that than anything he had gone through with his CF by that point.

The fourth time, he was five years old, and another routine bronchoscopy showed Pseudomonas again, which resulted in a gruelling two weeks in hospital and another week of treatment at home. We were all exhausted by the end, and it was a rather traumatic experience for Cam which resulted in a slight fear of needles.

Over the years, he has also had a staph infection twice. The first time, we discovered he was allergic to one of the antibiotics they used to treat it.

Cam nebuliser

He hates nebulizer treatments

He currently has about 30-35 tablets a day to keep him healthy. This includes Creon tablets (which help him digest his food), salt tablets (as salt loss is massive with CF-ers), a multivitamin, Vitamin D tablets (to ward off osteoporosis, which is high risk in CF-ers) and antibiotics to prevent infections. This doesn’t include when he has a moist cough, where we treat him with two weeks of nebulizer antibiotics at home. If there is no improvement after that time, it requires a hospital admission for IV drugs.

Cam Pep

Cam using his PEP mask. He will try anything to get out of doing it

He has progressed from percussion physiotherapy to resistance breathing techniques using a PEP mask and “huffing” through a wide pipe to help move any mucous around in his lungs. He is now in charge of his own physiotherapy (of course, under close watch by us, as he is well-known for trying to worm his way out of it!)

His high fat, high salt diet is now easily maintained. It was a massive learning curve when he started solids, but now we just add the “goodies” to meals once separated from the rest of the family’s meal, or add a few extra high-calorie snacks to his lunch box, and extra helpings whenever he requests. Cam is a little on the shorter side, but in terms or weight and build…he is actually a little Buddha for a CF kid , who are generally notoriously lanky/skinny.

Cam eating

This kid LOVES his food!

He is pretty good about dealing with his condition. About two years ago, he had a little breakdown. He suddenly didn’t want to do his physio. He didn’t want to have his medication. He didn’t want needles. He didn’t want to see doctors. He didn’t want to have cystic fibrosis anymore. There was a bit of focus on him at school as he was in pre-primary, and the other kids were taking notice that he was a bit different. In the past, his outlook was “I am different, and that makes me AWESOME!”…suddenly, it was “I’m different, and I don’t know if I like it anymore…”

We decided to just pull back a bit and allow him to work through it on his own. We didn’t push him in to anything he didn’t want to do (with the exception of physio and medication…sorry buddy…no escaping that!) We let him talk things out. I spoke to his teacher, and they tried to make things as discreet as possible at school (ie. having medication away from the rest of class)

I have to admit, I was a bit surprised at how young he was when his “breakdown” came. I am sure that many more are expected over the coming years, but I’m sure we can work through it.

We don’t stop Cam from doing anything. We want him to experience everything he can. He recently started sword fighting classes, which he loves considering he loves pirates and ninjas! He has a great circle of friends who understand his condition, but don’t see him as his condition. He plays pranks on his family, much to our chagrin sometimes. He also gives the best cuddles (but not in front of anyone….of course!)

Silly Cam

Nothing is going to stop this kid!

Life certainly isn’t easy when you live with cystic fibrosis, but it certainly isn’t as bad as what I envisioned it would be when he was first diagnosed. I’m not making light of the condition….CF sucks…it truly, truly sucks. But we have been lucky with our experience so far….a lot of other families haven’t.

May is CF Awareness Month. 65 Roses Day is on the 27th May this year. All I ask is that you take a moment to familiarize yourself with the condition. I’m not going to push for donations (though it would be awesome if you could) but the whole focus is awareness.

I just hope that sharing our experiences, it sheds a little light.

 

Bella 🙂

 

Constructive advice

I attend a special group every Wednesday morning (well…as often as I can). I wont call it a mother’s group, as men are welcome, and quite often get grandmothers and other care givers attending. This group is a support group of parents and carers of children with special needs, both mental and physical. A vast majority of the ladies who attend have children with autism or Global Development Delay. However, there are a few (including myself) who have those with physical conditions (like cystic fibrosis)

Half the time, we have guest speakers, or certain topics to talk about (the rest is just sitting around having a chat over a cup of coffee). Last week’s topic was “Dealing with people’s reactions to you child’s disability”

I kinda hogged the talking (hey, four kids of disabilities and reactions worth here!!)

But, what do you hate hearing from people in regards to your child’s diagnosis/disability? I recently posed this question on my Facebook fan page, and have had a good response so far. A lot of I can personally relate to.

I can't *wait* to hear how you can do things better, or how you have it harder!

I can’t *wait* to hear how you can do things better, or how you have it harder!

I ask you to add your own pet peeves. Check out the blog post by another mum who attends my support group, who recently wrote about the same thing (and I don’t feel I can write it any better than she has!)

My biggest pet peeve is the “God gave only as much as you can handle”.
I am not a terribly religious person. I class myself as ‘spiritual’. But God has nothing to do with what my family is going through and how we live our day-to-day life. I quite often wonder if He made a misjudgment in my abilities as a mother and just maybe, gave me ‘too much’. My next statement will be controversial, but I struggle to put my faith in something/someone who has apparently made my life very difficult.
Despite the big story I can write behind this comment, I find this statement very unhelpful. Am I just meant to say “Thank you”?
I tend to find myself just smiling and changing conversation.

After we all took turns of what we hated hearing, our support group coordinator then asked “What do you want to hear, then?”

The silence was awkward.

No one could think of anything for a moment. There are so many hurtful and unhelpful comments that get our backs up, but what can you possibly say to a special needs parent that is actually helpful?

One thing we all agreed on, it’s not the “You should do *this*”, it is a simple “Well, what can I do to help?”

If you know someone who has a child with special needs, take a legitimate interest in their struggles, take their lead on how you can help in a constructive way. It may just be the occasional ear for them to vent to. It may be the opportunity to go out for coffee once in a while. It may be a hand with babysitting.

As a young mum, my large circle of friends became smaller once I had a baby. At the age of 19yrs, I was at home looking after a baby. I couldn’t go out to parties as often anymore. Once more children came along, I went out even less. It became full battle strategy mode to go to the shops, let alone out to a friend’s house. The invitations stopped rolling in…

Screw the coffee....bring over a bottle of wine!!!

Screw the coffee….bring over a bottle of wine!!!

Later on, once we realised we had some special needs, that circle of friends got even smaller again. The friends that I have left I am exceptionally grateful for! If they read this, I LOVE YOU GUYS!! They understand that it is hard for me to get out, and if I do go out with kids in tow, it is hard to enjoy myself as I am stressing out, making sure that they aren’t trashing my friend’s house, running riot in the cafe, or playing with something that can make them sick.
These friends take an active interest in my family’s struggles. The biggest help they give me is by saying “Ok, so your kids are home today? I will come to your house for coffee then, instead of going out.” or they actually listen to my kids when they have something to say, and acting like it was the most interesting thing they have ever heard. They treat my kids like actual people.

So leave out the advice of what you think a parent should, or shouldn’t do with their children. Don’t make judgements. Just accept, and ask them what you can do to help.

Bella 🙂

More about me…

I have been struggling to think of topics to write about, but came across this questionnaire called the “ABC’s of ME” on Love, Laughter and Lipstick’s blog page. A family member who reads my blog said I should write more about myself, thought that I would also give this a go.

A – Available or Married?

Very much married. It will be our second wedding anniversary in a couple of weeks, but we will have been together for ten years this October.

B – Book?

I love romances. Give me a Mills and Boon and it will be finished in a couple of hours. My favourite author is Julie Garwood, she does both historical romances and modern-day crime romances.
I also like series such as Hunger Games, House of Night, Vampire Academy etc (oh, and you should all  give the Divergent trilogy a try before it gets made into a movie!)

C – Cake or Pie?

Cake- but it is a hard choice between a triple chocolate cake, or a chocolate honeycomb cheesecake.

mmmm....cheesecake!!!

mmmm….cheesecake!!!

D – Drink of Choice

Coffee. I have pure caffeine running through my veins some days!! Oh, and wine….of course!!! 😉

E – Essential Item?

I can not leave home without my purse, phone and (obviously) keys. I will have an anxiety attack if I lose just one of these three!

F – Favorite Color?

Deep emerald green

G – Game to Play or Watch?

I really enjoy Crash Bandicoot games on our Xbox (I am currently playing “Mind over Mutant”) “Scene It?” is also pretty good too.

H – Hometown?

Albany, Western Australia

I – Indulgence?

Clothes-and probably more often than I should!

J – Job?

Domestic slave to four kids! I also help out hubby with his cleaning business occasionally.

K – Kids?

Yes. It may be time to introduce the kids on my blog. Aaron is almost 8yrs, Eva is 6.5yrs, Ethan is 5.5yrs and Cameron is almost 4yrs.
Aaron and Eva are the two that have Global Development Delay, and Cameron has cystic fibrosis. Ethan is my little sanity-saver!

Ethan (left), Eva (back), Cameron (front) and Aaron (left)

Ethan (left), Eva (back), Cameron (front) and Aaron (right)

L – Life is incomplete without?

My family

M – Music group or singer?

Both. It’s hard to pick my favourite of each, but I really like Nickleback, and my kids and I love all of Bruno Mars’ songs (although, I am addicted to Guy Sebastian at the moment too!)

N – Number of siblings?

Three younger half brothers

O – Oranges or Apples?

Strawberries actually….but probably oranges, I prefer soft and juicy fruits over crunchy.

P – Phobias / Fears?

I’m scared of the dark, there always has to be a little bit of light on, especially when I am home alone at night. I’m also scared of deep water. My biggest fear would have to be being trapped inside something under water (like a car, or boat cabin) You will never ever catch me in a shark cage (not that I am that scared of sharks…but I don’t really want to be anywhere near one! Just being in the cage though would be enough to just about have me screaming!) I don’t even want to go on a cruise ship in case it goes down and we can’t see land (ok, I know even if we could still see land, we would still be miles from shore, but I would die trying my hardest to get there, instead of not seeing land and wondering if you were even swimming in the right direction!)

Q – Favorite Quote?

“Life is not about how many breaths you take, but how many moments take your breath away”

R – Reason to smile?

My family (even though they are also the reason for my early grey hairs!)

S – Season?

I prefer the cooler weather because it is easier to warm yourself up than it is to cool yourself down. Autumn is probably my favourite as it’s not too cold. The leaves are a  pretty colour then too.

T – Tattoos?

No, but I do have a small design in mind. I’m using it as a reward for my weight loss (when I eventually get there)

The logo is the design I want for a tattoo, then I am thinking the words "Just breathe" underneath it.

The logo is the design I want for a tattoo, then I am thinking the words “Just breathe” written underneath it.

U – Unknown fact about me?

I cant wink! If I try, I look like I’m having some sort of facial spasm!

V – Vegetable you love?

Technically, tomato is a fruit…so probably…gherkins at the moment

W – Worst habit?

My husband could probably rattle off a few, but I hate hanging out washing. I don’t mind putting it in the machine and pushing a button, and I don’t mind folding it….it is the crucial step in the middle that I tend to put off. Too many times loads have had to be rewashed because they have been sitting in the machine too long.

X – X rays you have had?

Mostly on my lungs for quite a few chest infections. About 9yrs ago I got my thumb stuck in the car door and turned it into a painful “S” shape…luckily I have fat thumbs, so the bones weren’t effected. Pretty sure I have had one on my ankle before from a netball injury too.

Y – your favorite food?

I am addicted to Panzanella at the moment. I posted up the recipe a while ago. Since then, I have added crumbled feta cheese, avocado cubes and finely chopped spinach leaves to it, and I am eating by the tub full!

Z – Zodiac?

I am a Libran

Let us know what your “ABC’s” are, publish the link in the comments below so that we can all get to know you too!

Bella 🙂

GIANT decisions

Howdy readers,

Tonight’s subject is a bit of a touchy one. I have been wanting to write about this for a little while, and after a couple of glasses of wine, inhibition have flown out the window, allowing me to write about a bit of a taboo subject.

I am constantly asked one of two questions. “Are you going to have more kids?” or “You aren’t having anymore kids…are you??

My answer is always the same: While I feel like my body has the ability to have one more child (and I would love to have another child, especially another little girl) My husband and I have enough factors against us to not have any more.

The movie the inticed my husband and I to have a large family

The movie the enticed my husband and I to have a large family

My husband and I had always decided to have a big family. Hollywood effected us a bit in this department due to the movie Cheaper by the Dozen. While we knew that no way in hell were we going to have twelve kids, we agreed (for a while) that seven was going to our magic number. This was taking into account “whoops” babies, and the high possibility of twins.

Our first child was planned, although he came along a lot faster than we intended. We were expecting to by trying to conceive for a while….it only took about two months of some-what trying (not exactly trying, but not exactly stopping it either) A few false negative home pregnancy tests left us shocked at our first ultrasound when I was seven week further along in pregnancy than we thought. Though, we were excited. We had recently bought our first home together and were ready to start a family.

But then I fell pregnant again six months later (whilst I was on the pill)….then amazingly, I fell pregnant within seven weeks of giving birth to my daughter! Just a year after giving birth to my middle son, I fell pregnant again (and again, while on the pill!)

Four single births in four years is a damn good effort!! But this is not the reason why my husband and I have decided not to continue on to our goal of seven children.

As you all know, my eldest two have significant development delay. It is something that seems to run in my family, with other family members that have had development issues as well. But most significantly, our youngest son has cystic fibrosis. If you have listened to me ramble on enough, you would know it is a genetic condition that has to come from both parents. This is the main (and its a very big one!) reason why we aren’t having any more children.
We have had such a good run with my youngest son.After he was diagnosed,  I was expecting to be constantly in and out of hospital. We have been incredibly lucky to have only had two CF related hospitalizations (one other was due to a bad case of tonsillitis)

What if we aren’t so lucky with the next child? What if that child is very sickly and has a lower quality of life? Since two CF people aren’t meant to be in close proximity of each other due to a high risk of cross-contamination….what if the new baby (if it had CF) makes my youngest son even more sick. Since we have already had run-in’s with CF-super bugs, Pseudomonas, what if my youngest son makes the new baby very sick?
Development delay is so predominant in our little herd, what if the next baby has issues as well? That would be another strain on the family. To be constantly one step forward, two steps back. It’s hard enough already!

These are all very important factors my husband and I have discussed about a lot since my youngest was diagnosed. Please do not judge us, but we have decided that should I fall pregnant again (since contraception quite obviously doesn’t agree with me) we would undergo an amniocentesis( or whatever test they do for this sort of thing) and if test results come back positive for CF, we would terminate. I know it would be an exceptionally hard decision for my to make, and will create a lot of emotional turmoil….but it would be the best thing for our family in the long run.

However, we have been blessed with four children already. It was easy for us to be able to say “NO MORE” (even if my biological clock is still ticking for one more…I know it isn’t the right thing to do for us) It was our fourth child that was diagnosed with a chronic medical condition.

But what if it was your first child, or even your second…and you wanted more? Or if you met a new partner, who was also a carrier, and you wanted to have more children with that person? These are the people I feel for as they have so many emotional, and moral, questions to ask themselves.

To quote someone who I spoke with about this issue a while ago….the following questions are the sort of thing that come to mind (and I am just using CF as an example here. Any medical condition can be placed here):

Do you or don't you?

Do you or don’t you?

*What are the issues of having more children with CF? (eg. financially, mentally/emotionally, physically) especially when there is a 1 in 4 chance. (Or if you have CF yourself, and your partner is a carrier, you have a 75% chance of having a CF child)

*Do you have kids knowingly that you risk creating a child that will suffer all its life?

*Do you conceive, then terminate if it is discovered it will have CF? Then does that diminish the value of life for those who already have CF?

* If you go through IVF and discard the embryos that have CF, does that make it any different to an abortion?

* If you already have CF and your partner is a carrier, will you be able to care for the child when you are sick? Do you take the chance knowing it will be a huge toll on your body (as a female with CF)? Do you have children knowing the risk that there is a chance you may die young?

There is no right or wrong answer to any of these questions. The love for family can overcome all of these issues, but then again, it might be too much than you can deal with. Don’t ever feel pressured into such a big decision. It all comes down to what is best for YOUR family!!

I hope I have given you some food for thought.

Bella 🙂

****EXTRA NOTES****

This post is not about trying to stop people from having children, but more to bring attention to the thought process that plagues some people about extending their family when they know a medical condition is possible.

I know this is a bit of a controversial subject, as it touches on pregnancy terminations, so while comments are encouraged, I will delete any nasty ones!

A Grand Adventure

What would you do if you were given $1,000 and told to spend it all within 24 hrs? (It doesn’t matter what you spend it on, just so long as you don’t bring any money home!)

Most females reading this will be rubbing their palms together, and salivating, while mentally screaming “SHOPPING SPREE!!!!!” (I admit, it was the first thing that went through my head!)

The conservatives reading this will say “Bills and/or mortgage”.

But what if you didn’t have to worry about work, or life, for a day, and you had all this cash to blow….what would you do?

After some serious thought, I have planned an entire day of fun for the family (with some health benefits thrown in there for good measure)

mmmm....cappacino

mmmm….cappuccino

First off, I would fill the fuel tank in my car. With today’s fuel prices, a good chunk of money will already be spent to completely fill my Mazda MPV, as there is a lot of driving ahead of us.

All six of us (hubby, the four kids and myself) would go out for breakfast. Dome cafe is probably the best option. My kids just about eat me out of house and home on a normal day, I can only imagine how much they will eat if they have an option of bacon, eggs, sausages etc.

I’m just drooling over the thought of all that coffee!! (*insert Homer Simpson style drooling and finger twiddling here!*)

After we have gorged ourselves on breakfast, I will drop hubby and my younger two sons to a play centre called Tumble jam to let the boys burn off some energy. I have no idea if hubby will be sitting back watching….but he will more than likely be chasing them around the equipment like a massive kid himself!

Mt. Romance gong session

Mt. Romance gong session

In the meantime, I will take my older two children to a place out-of-town called Mount Romance for one of their gonging sessions. I LOVE the gongs! You lie in a cone-shaped room, sniffing a silk handkerchief that is doused in sandalwood oil and look at purple lights (that look like little stars) on the ceiling, while a lady banging on a gong (ok, there is more of a technique to it than simply whacking a gong!) walks around the room. The vibrations feel awesome…especially when they hold the gong directly over your body. You can feel it in every inch of your soul! There are times when you don’t know if you are awake or asleep….if you snore, you will get a quick tug on the big toe so you don’t disturb the experience for others.

I think the relaxation therapy will be good for my older two kids…who need to just “WOOOOSAAAH!!!” once in a while.

Since it is recommended that you don’t drive for up to half an hour afterwards, it gives me a chance to do a bit of retail therapy in the store and buy a few products to take home.

On the way back to town, I will pick hubby and the boys up, where they have hopefully worked up an appetite. We will make our way to one of my favourite restaurants, The Venice. The food, service and atmosphere there is fantastic, and it is a family friendly restaurant (always a plus!)

The salt cave at Saltacious

The salt cave at Saltacious

After lunch, I will drop hubby and my older two kids at the ten-pin bowling rink, while I take my two younger boys to a place called Saltacious. You sit in a room, while salty air is pumped though. Salt therapy is very important with cystic fibrosis. My son takes all of his salt orally, so this is a different approach to help him. It helps a range of conditions from respiratory illnesses to skin disorders (which my middle son suffers from).
I have always wanted to try a session and see how much it improves our health.

After our salt therapy, we would join hubby and my older children at the ten-pin bowling rink and play arcade games until we start to wear out.

A quick duck into the shopping plaza to get a new outfit for me and maybe a new dvd for the kids before we head home (yeah, I guess hubby can buy something too!)

One of the rooms at Hideaway Haven. I don't think I will want to leave that bed in the morning!

One of the rooms at Hideaway Haven. I don’t think I will want to leave that bed in the morning!

We head home and have a bit of a rest before the babysitter arrives to look after the four kids overnight, so that hubby and I can check into our room at  Hideaway Haven. This is a 5-star, award-winning bed and breakfast. I have been dying to stay here. It is run by two lovely ladies who put the needs of their guests at top priority. I have seen photos of their cooked gourmet breakfasts on Facebook and I drool! The rooms look incredibly comfy. Kids can not be accommodated here, so it is an absolute parent’s retreat!

Hubby and I would take off for a while, and have dinner at another favourite restaurant,  a pizza bar called The Mean Fiddler. They make the best chilli prawns I have ever had!

We would then go to the cinemas and catch a movie together.

Hideaway Haven's outdoor jacuzzi ;)

Hideaway Haven’s outdoor jacuzzi 😉

No doubt, we will be absolutely exhausted, so we will head back to our B&B room. Before we retire for the night, we will have to take the opportunity to experience Hideaway Haven’s jacuzzi under the stars.

No doubt that will top off a long day, and we will fall asleep (wait….I mean PASS OUT!) really quickly.

So there you have it. That is how I would spend $1,000 in a day. A family day of therapeutic fun which is capped off with some child-free romance

Share what you would do if you had that opportunity.

Bella 🙂

***This is my entry for “A Grand Adventure” competition. If you would also like to enter follow this link :
http://www.moneysupermarket.com/a-grand-adventure/****

We’re All in this Together: Blending in Special Medical Needs

I found this blog post by “Close Families”.
I think it deserves a read!
Bella 🙂

Close Families

When one person in the family has an illness, it can sometimes be difficult not to single that person out. We say all the time that we don’t define our son by his disease, but at the same time, there are certain precautions that we do need to take in order to give him the healthy life that he deserves. But how do you do this without singling out the person with the illness? Here are some tips that work for our family, and although our needs are catered to our little guy’s cystic fibrosis, many of these ideas can be helpful for other families who have a loved one with special medical needs.

  • We try to be as matter-of-fact about any changes or special needs as possible. We do our best not to place emotions with our son’s needs in order to prevent him from getting unnecessary sympathy…

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