Tag Archive | children

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 🙂

 

Expectations of the modern mum

The 50's housewife

The 50’s housewife

While browsing one of my parenting forums recently, I came across a post from a mother who felt overwhelmed by the pressure of being a “do-it-all” working mum. It inspired a blog post and I thought I would share my words of wisdom.

As mothers, we are our own worst enemies. We expect way to much of ourselves, because we feel that is what “society” demands from us. The bar is set so high, that we often set up ourselves for disappointment and stress.

We are to be the “50’s housewives” who prepare homemade, wholesome meals for our families, keep the house sparkling clean, cater to our husband’s/partner’s every need, keep our kids in full control all while looking immaculate.

We are now expected to be able to drag ourselves away from the arms of our children and contribute to the workforce and household finances.
Men being the sole bread-winner are a thing of the past, however, “society” expects us to fulfill the “50’s housewife” role as well.

Then there is the modern-day reality…

The modern "do-it-all" mum

The modern “do-it-all” mum

We are willing to throw a store-bought, pre-cooked meal in the oven for 40min before slapping it on plates in front of our family. Our homes have dust bunnies- waving at us in plain sight. Our husbands/partners are occasionally left hanging. Kids draw on walls and climb the curtains while running around the house like cowboys and indians in full battle-mode.
We are also often seen in tracksuits, spew and coffee-stained t-shirts while our hair has distant memories of a brush.

And you know what?? That is acceptable too!

I am proud to be the modern mum I described. My family is happy and thriving. That is the only thing that society really expects of us.

Don’t judge yourself, or others, on the stereotype of a bygone era.

 

A mother's reality- take some time out for yourself!

A mother’s reality- take some time out for yourself!

Sit down, grab a magazine, chuck in some earphones to drown out the noise of screaming kids, and smell the coffee! Your family…and your sanity…will thank you for it!

Bella 🙂

Open letter to my friends

To my friends (you know who you are!),

I am sorry that we don’t get to catch up very often. I honestly miss the moments we have together, whether they are coffee or wine infused! I had to write today though to express who much I love, respect, thank and even miss you!

Friends come and go. But the ones who stick with you during the hard periods, they are the special kind.

When I had my first child just as we hit our 20’s, you were the ones who realised that I couldn’t drop everything  and come to a last-minute party, or go to the pubs, anymore.
You still made the effort to include us in your lives.

Thank you for making the effort to catch up despite my hectic life!

Thank you for making the effort to catch up despite my hectic life!

When more children came along, and it was even harder for us to have a night out, you didn’t ignore us/drop us, you still invited us to barbeques, included my children, or said “So you have the kids at home today? We will come to your house then for coffee!”
You even visited when I was in hospital after giving birth. Outside of family, not many friends actually visited, I don’t think you realise how special that made me feel!

When our lives became more difficult due to the fact special needs cropped up, again, instead of walking away from our friendship, you said “What can I do to help?” or “How are things going at the moment?”

You take a genuine interest in our struggles and our lives. You want to help. I recognise that!

When we come to your house, you see that I am worried about my kids running riot and trashing your house. You make us feel welcome, accomodate us and tell me “It’s ok!” when my kids have made themselves at home and made a mess of your living room.

I know you don't mind too much, but I don't want to trash your houses!

I know you don’t mind too much, but I don’t want to trash your houses!

You make sure that my youngest son is allowed to have something to eat, before you hand it over, just because of his medical condition. You are aware of the need for this.

You drag me away from the kids if you see me hovering over them, and tell me I am supposed to be enjoying myself when I am at a party. You remind me that it is ok to release my control and anxieties.

You understand that it can be a long time between catch ups because I am busy with work and/or child responsibilities. You work around it, and you dont judge me for it, and you don’t forget about me.

You have no idea how much I love and respect you for the support you constantly give me and my family. My love and respect grow every time you interact with my special needs children. When my children show you something, you act like it is the coolest thing you have ever seen! You don’t ignore them and fob them off. My middle son, Ethan, has a hard time opening up to adults, yet I have memories where I watched in amazement, where he would sit in your laps, open up, and not want to leave your sides. You made him feel loved and secure. I don’t think you realise how much of a rare event this is, or what you did for him in that moment!

There are bad experiences online, but I am lucky enough to find great friends online

There are bad experiences online, but I am lucky enough to find great friends online

To my online friends- although we have never officially met in person, I hope to one day. Some of you I have known for almost eight years. We have laughed together, cried together, shared tips and advice. When my children with born, you rejoiced- sending me messages and gift of congratulations. The horrible period when my youngest, Cameron, was diagnosed with cystic fibrosis, it was the first time that any of us had been diagnosed with a serious condition. I contacted some of you to spread the news. Little did I know, you all rallied together, chipped in some cash, and sent Cam and I a care package of flowers, a teddy and much need chocolate to the hospital. I cried when it arrived. I felt loved and thought of. While I am no longer in contact with some of you, I still respect you for the friendship you extended to me.
One day, I will meet you, but in the meantime, you know that you can contact me, good or bad, about anything. Despite not officially meeting, I still consider you some of my best friends. I hope you feel the same way about me!

To my husband’s friends- I love and respect you for when you call and my husband isn’t available, and you will spend at least half an hour just chatting with me, asking about me (or Mark) and how our kids are, how life is travelling (instead of just saying that you will call back later.) Or when we are actually managed to catch up, you will actually sit next to me and chat.
I have immense respect for the fact that you seem to actually like me for who I am ( not just as your mate’s partner) and take a genuine interest in our children and our lives. Both Mark and I express our regrets that we can’t catch up nearly enough! 😦
I feel like a terrible friend because we don’t catch up often enough, and I can’t possibly return the sentiments that you give. I can only try! I honestly don’t feel like I have articulated well enough how I am really feeling, but I hope you are starting to get
I don’t tell you often enough, and I can’t express enough, but thank you, and I love you!

Bella 🙂
xxxx

Never ending- an update

I have been a little quiet lately. My poor husband has injured his shoulder quite badly, which means I have been helping out by covering his work in our cleaning business. It is going to take a while for him to recover, so if you don’t hear much from me over the next few weeks, that is the reason why.

I wish to thank everyone who gave advice about the constipation issue we have been having with my middle son (both on the blog post and on the Facebook fan page.)

Our GP has the series of these books displayed in his office since his name is Toby!

Our GP has the series of these books displayed in his office since his name is Toby!

We have started seeing our GP (general practitioner) doctor for the issue. This guy is awesome. He managed my pregnancies and tried to deliver my babies (if he made it there in time!) He also broke the news of my youngest son’s cystic fibrosis diagnosis, which affected him greatly, as it was apparently the first time he had to break “BIG bad news” like that, and he knew our family quite well. He apparently admitted to my mum the night of diagnosis while I went home to pack bags to be flown to the next hospital that he was somewhat glad that it was me that he had to give this heartbreaking news to. It’s absolutely not because he didn’t like us and wished us hardship…it was because he knew we could cope with the diagnosis, and that I was able to hold myself together while he broke the news (I guess in comparison to other patients, who probably would have fallen to pieces.)
He has since managed Cameron’s CF as best he can under the guidance of the CF team in Perth (since we are country patients), the team love him for his support and the fact that he follows their directions…apparently something not all doctors do in their experience.

I trust my doctor completely. I know that he will not stop until we have answers, and he is willing to go above and beyond for his patients. He also knows that if I come to him with an issue, it is a legitimate worry, I’m not just arriving in his office for a sniffle or a meagre problem.

Mutual respect is essential with your doctors!

When I arrived two weeks ago with Ethan in tow, and told him of the serious issues we were having with the chronic constipation, which has caused us to make three visits to the emergency room since the start of the year, numerous amounts of medication (laxatives, suppositories, enemas….tried it all), and the issues the fecal overflow/accidents in the underpants was causing both at school and at home…he immediately took action. We are currently giving high doses of different laxatives to clear out Ethan’s intestines. He is on Movicol twice daily, Actilax twice daily, and Parachoc twice daily. Basically, we wanted him to get to the point of diarrhea to flush out his system before we take the next steps. In no way was he allowed to get even remotely constipated in the next two weeks, or basically, we would have had to start all over again

It took about a week for all the laxatives to take effect. After two weeks of all this medication, we went back to our GP for another assessment (this happened only yesterday.) The doctor was very happy at how much better his stomach felt…nice and soft, rather than lumpy and hard in places. He was also very happy to hear that Ethan isn’t having as many accidents in his undies. It used to happen about six times a day. It now happens only a couple of days. Still a drama, but definitely an improvement!

We are to continue the laxatives for another two weeks, but this time, add Benefibre to his drinks daily, which will absorb some of the extra fluid in his tract, and make his stools a bit more solid. We return in two weeks for another assessment to figure out where to go from there.

We also saw a dietician, as part of a feeding team, to assess his food aversion. This woman told me that Ethan’s diet isn’t too bad. I really don’t agree with that (neither does my GP), but I have taken steps to change that. We have increased his water intake, and I have started making muffins/cakes to put in lunch boxes or to eat as snacks at home, which is loaded with fruit and veggies (recipe at the bottom). We are going to try different types of milk when he has finished his medications, just to test a theory that there might be a bit of an intolerance causing the constipation. Ethan’s main “homework” is that he has promised to try at least one new food before we see the dietician again. He has agreed to try chicken…not chicken nuggets, but real chicken (we haven’t tried it yet.) He has also had a bit of a nibble on a carrot, after our babysitter (who he has a bit of a crush on) enticed him with a promise of a hug and kiss if he would at least try it. Since he is very much a Casanova, the ploy worked!

Basically this is going to be a long, ongoing battle, but I will keep you all updated.

Bella 🙂

***Here is my cake recipe. It’s a bit of a “thrown-together” recipe, as I just add whatever I have in the cupboard until it looks about right, but feel free to make your own tweaks:

Bella's fruit and veggie cake

Bella’s Fruit and Veggie Cake

1 carrot, grated
1/2 small zucchini, grated

Large handful baby spinach, finely chopped

2 apples, grated

1 pear, grated

2 eggs

40 ml oil

1.5 cup Self raising flour

60 ml milk

1) Combine all grated fruit and vegetables in a large bowl. Add eggs, combine thoroughly.
2.) Add milk and oil to bowl, mix thoroughly. Slowly sift flour through mixture in parts.

3) Add more flour or milk to reach desired consistency
4.) Pour mix into a large, grease cake tin, or separate into muffin tins.

5.) Bake at about 160 degrees celsius until golden and cooked through.

Angels in disguise

All parents, especially mothers, have a few fears when their children start school. Will they be able to make new friends? Will they be able to handle the school work? Will they cope?
All these fears are heightened when you have a child with special needs.

It has been four years since my eldest son, Aaron, first walked through the school room doors.

My eldest son, Aaron, who is now almost 8y/o, This photo was taken at Christmas, 2012

My eldest son, Aaron, who is now almost 8y/o, This photo was taken at Christmas, 2012

Actually, it was the second time. The previous year, we had tried to enroll him in kindergarten at private school. But after one half day, they pointed out all his development issues (I was trying to bury my head in the sand at the time, hoping he would just “catch up” once he was around kids his own age) He spent the entire morning in a violent meltdown, which was extreme and common at that time. When I went to pick him up, the teacher told me, quite abruptly, that we needed to see a speech therapist, an occupational therapist and we needed to see our doctor to get a referral to see a pediatrician, and that they could no longer take him in until he was fully toilet trained, which beforehand, they told me wouldn’t be a problem. (We later pulled him from that school completely)
I drove home that day crying my eyes out. That was when I realised how big of an issue we had on our hands. That is when our battles began (but that is another long story)

I was advised that public schooling was the best option for us, as they get more funding for children with special needs than private schools do.

When he started pre-primary, at a new school, we were armed with the Global Development Delay diagnosis, which made him eligible for an aide until he turned seven years old. There was only enough funding for an aide for one full day, and three half days. His aide, to say the least, was an ANGEL who was good at hiding her wings! She basically toilet trained him (which just was NOT happening at home), set up all the tools to help him settle in and learn, and dealt with his frequent and extreme meltdowns with a level head. She was amazing!

But she is not the inspiration behind this post (though she does deserve a gushing one of her own!) 

No, this post is dedicated to the other students that were in his class that year. They accepted Aaron for who he was, and the dramas that surrounded him, with open arms. They helped to guide him to make correct decisions in social aspects. They would whisper hints to help him with his school work (which was heavily simplified for him due to his learning ability) They would encourage him to join in their lunch-time games, despite the fact he rarely did.
The best thing they did, was that they accepted, without judgement and ridicule.

I know a lot of this happened because the teachers would tell me about it. Unfortunately, because I had three younger children still at home, was working hard to get our cleaning business off the ground (which, really, is unimportant to this story), plus still living in a “bubble world” in terms of my youngest son’s cystic fibrosis diagnosis…I was unable to volunteer as a parent helper in the classroom to witness this more personally.

But there came a day when I did witness this beautiful wonder of these amazingly accepting and helpful children.

Despite not being able to help out in the class room, I still made it to every “Parent Day” and carnival. This particular day, the children were doing an Obstacle-a-thon, which was three laps around an obstacle course in the pre-primary area. The children fundraised through their laps, to raise money for the pre-primary area funds.

Aaron during his Obstacle-a-thon in 2010

Aaron during his Obstacle-a-thon in 2010

I brought along my daughter, Eva (who was four years old at the time, and we were beginning to realise at that time she also had Global Development Delay) and my youngest son, Cameron, who slept in the pram almost the entire time…(Ethan, my middle son was sick at home with my husband that day.)

My daughter joined in on the fun with the other students. After the laps were completed, there was a picnic lunch for parents and students. As we sat, my children had a packed lunchbox ready to devour.
As I dealt with Cameron, who had awoken and wanted a bottle, I looked over and saw that Eva was struggling to open her yoghurt and other sealed goodies. She was becoming a little upset (a reminder, this was around the age that her food compulsion was at its highest peak.) I was just about to put Cameron down and move over to help her, when one of the boys in Aaron’s class, leant over and opened all the food for her. When one of the other student asked something about (the exact words asked escape me now), this particular child replied “It’s ok! It’s Aaron’s sister, and she is just like Aaron!”

“Oh….ok then!” (continues to eat his own lunch)

There were no stares at her behaviour. No sniggers. No rude comments.

Just kind, helpful natures, and an awareness beyond their years.

These boys…no…ALL the children in this class were accepting and willing to bend over backwards to help a fellow student/child to develop and grow in their own way.

I sat back in shock and amazement. I drove home in tears again…happy ones this time…at how lucky my son was to be around such awesome kids. My fears of my special needs son not ever being able to make friends flew out the window! Later on in life, I hope realises how special these friends are/were.

I wish I could say that the rest of his schooling years have been as smooth and accepting as this. Aaron has had his fair share of bullying since starting primary school (and things went downhill, fast, once the funding ran out for his aid…however, that’s another story for another day) However, he has always had a few of the students from his pre-primary year in his classrooms. These students have continued to protect, encourage and nourish Aaron over the last two and a bit years.

To these students, you will probably never know how much love I have for you for being so amazing to my son. You have helped model him into who he is today, whether he will ever realise it or not, and I don’t think you will ever realise what you did for him.

From the bottom of my heart, THANK YOU!! You are truly amazing kids. You will make your parents proud and I am positive you will grow into fine young men and women. Keep up the amazing work!

Bella 🙂

In desperate need of advice!

To all my readers, please help!

My middle son, who is five and half years old, has a massive problem at the moment. I will start with a long story to lead up to my question (and I apologise in advance for the information overload!)

Just EAT dang nammit!

Just EAT, dang nammit!

For the last few years, he has been an exceptionally picky eater. This kid doesn’t eat meat, fresh chicken (but will eat chicken nuggets), vegetables, pasta, rice and most fruit! For as long as I can remember, he has been living on bread, cheese, yoghurt, bananas, pears, chicken nuggets, hash browns and polony (only recently branching out to cereal and eggs)
Basically, the more processed it is, the better!
Of course, I realise this is a terrible diet, but the kid has to eat something! I tried to be tough on him, and that if he didn’t eat what was put in front of him, then he would not get dessert, and went to bed hungry. But he is just as stubborn as I am, and would happily go off to bed with his stomach empty. After a couple of days of not eating his evening meals, I would cave and give him cheese on toast, so he would at least have something in his belly!

It’s weird. If the other kids are having pizza, he isn’t interested, but would have cheese, ham and sauce on toast (go figure!?) He did recently try pizza for the first time at my Mum’s house, so hopefully I can convince him to eat it at home now!
At Christmas, we realised how much he loves eggs too, as he devoured about 7 boiled eggs! So now, he will happily eat quiche (but in our house, we have to call them “Eggy cakes” for him to eat them) I have tried to start hiding veggies in them, with zucchini making it down the hatch without any question. However, if I try putting carrot in them, he wont touch it! He wont even eat carrot cake because of 1.) the name, and 2.) because it has carrot in it!

A few months ago, my concerns for a balanced diet reached an all time high, as he was showing signs of malnourishment. He looked like an Ethiopian orphan…skinny arms and legs, spine visible, with a distended belly. So I started giving him a glass of fruit and veggie juice at least once a day. I made him pick out a special bottle and it became known as “Ethan’s special juice” (In no way was I going to tell him what was actually in it…but at least he was excited to drink it!)
About three months ago, I was talking with an occupational therapist, who was a guest speaker at my special needs support group, who recommended that we put in a referral to see a feeding team to get him to eat properly. This is a team of dieticians, speech therapists and occupational therapists.

A psychologist is being considered, as he will start making excuses as to why he cant eat if  he finds out earlier in the day that dinner is something he doesn’t like (ie. Im too tired to eat…etc) If he has the plate in front of him, he will actually start shaking as the food approaches his mouth. If (say, for example, a tiny piece of chicken breast) manages to make it into his mouth, he will gag on it, but hide it under his tongue and will say he swallowed it.

I jumped on board and got the paperwork started. We are still waiting for our first appointment.

We were so happy and proud when we didnt have to use these anymore.Do we need them again? :S

We were so happy and proud when we didnt have to use these anymore.
Do we need them again? :S

For at least a year, he would make a mess in his pants, but not know he had done it. If you asked if he had a “stinky bum” (code in our house for having done poos…sorry for the “too much information”) he would reply with an innocent “No!”
He would have a smear in his pants, but it would stink out the house with a distinctive and unmistakable smell. The problem was that he had no idea that he had done it. Doing wees on the toilet wasn’t an issue, however I couldn’t trust him to wear undies, so he was constantly in nappies or pull-ups.
I tried to give laxatives every now and then, thinking constipation was probably the issue. I thought it worked, but it would just happen all over again a few days later.

The crunch came around New Year’s, where one night he couldn’t eat anymore, not even his beloved toast, and was complaining of a sore belly. I poked around his belly, with possible appendicitis in mind, to find that his belly felt rock hard. I sent him to bed and decided to see what he was like overnight.

By morning, I could actually see his large intestine bulging through his stomach. I knew that there was a serious problem. I took him up to the emergency room at the hospital, where they performed an xray on his stomach. It showed chronic constipation, with a lump the size of a fist in his pelvis, and enough poop backed up the intestine to hypothetically fill a football! He was in some serious trouble! The small amount of mess in his pants daily was because of fecal overflow, where poop was leaking around the blockages. The reason he didn’t know it was happening was because the anal muscles were that stretched, they had lost the ability to tell that there was poop there.

The hospital staff gave him oral laxative, and an enema (which of course he didn’t enjoy) We were sent on our way with a warning that we had about 20min to get home before things started happening.
Unfortunately, I had to take off to work straight after, leaving him in the care of my husband…and Ethan screaming on the toilet over his ordeal. When I came home, my husband said that it seemed to do the trick. He was able to eat again, but we were still getting the smears 😦

About 5 weeks ago (around 2-3 weeks before he was due to start pre-primary) I woke up to a massive mess. I have never seen that much poop before…but it was obviously what he needed, because after that, he was consistently using the toilet, no accidents. We were jumping for joy that he was able to start wearing undies again.
By the skin of his teeth, he was in undies when he started school. A massive load came off my shoulders…until about a week and half ago…

He has started messing his pants again. Despite the advances in what he is eating, he is obviously “bunged up” again 😦

This is becoming an issue at school. We don’t want him becoming notorious for smelling and messing his pants. It can’t be comfortable for him, and it is a bit of a health hazard for the other children. It is happening daily.

His teacher has pulled me aside a few times to discuss the issue. She is an awesome teacher who knows all the dramas in our family (and feels so sorry for me because of this extra stress) She is going to speak with the school nurse for advice in the meantime.

I obviously need to put him back on laxatives for a while. I will also be booking an appointment with our GP. I am desperate for advice from parents who may have gone through a similar situation, as I am honestly lost as to what to do!

I am pleading...I am desperate for advice!

I am pleading…I am desperate for advice!

If anyone out there had any advice, whatsoever….please, please share! (Bare in mind, I have taken the steps to get professional medical advice.)

Bella 🙂

CF fundraisers

There are a few of people doing things to raise money for cystic fibrosis at the moment, so I thought I would share their efforts in the hopes that they will get closer to their goal.

team_cropGavin Pearce is a 49-year-old father of three who lives with cystic fibrosis and has twice been the recipient of a double lung transplant. On Saturday 23rd February Gavin and three teammates – Rob Pearce, Leanne Bodley & Phoebe Robinson – will form the Lung Distance Swimmers and take on the epic challenge that is the Rottnest Channel Swim. They aim to raise $25,000 for Cystic Fibrosis WA as they battle the wind and the waves.
You can donate go to the Lung Distance Swimmers page to keep updated and donate. You can also listen to an interview via podcast here

 
Spinner_logo_finalSix every day office blokes have decided to trade in their comfortable spinning office chairs for spinning bike wheels as they set off on the 2013 Gibb Challenge from the 19th – 23rd of May. This expedition will take them 700km in a team relay across some of Australia’s toughest outback terrain as they work hard to raise their target of $50,000 for Cystic Fibrosis WA. Give them a helping hand to reach their goal by visiting their online fundraising page

 

 

 

Baker's DelightThis next one isn’t exactly fundraising for cystic fibrosis (but does have CF kid as a spokesman!) W.A. Baker’s Delight are holding a Bundraiser for PMH (Princess Margaret Hospital for Children) on the 16th March, 2013.
Other states are fundraising for these major hospitals across the country:
Royal Children’s Hospital (VIC)
Royal Children’s Hospital Foundation (QLD)
Sydney Children’s Hospital (NSW)
John Hunter Children’s Hospital (Newcastle, NSW)
Canberra Hospital (ACT)
Women & Children’s Hospital Foundation (SA)
Royal Hobart Hospital (TAS)
$1 from every 6 pack or hot cross buns sold at Baker’s Delight stores state-wide will be donated to the PMH Foundation

If I come across any other fundraisers, I will let you know. Feel free to share any links to fundraising pages in the comments below.

Bella 🙂