Tag Archive | parenting

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 🙂

 

That day has arrived!

I have been dreaming about it for four and a half years!

Last week, my youngest son started pre-primary schooling!! All four kids are now in full-time school!!! In the same location!! At the same time (between 8:30am and 3:10pm!)
The idea of five days a week without having to hear “But Mu-u-u-m!!”, or “So-and-so took my toys” or “I’m hungry!” has felt like a distant dream…until last Monday.

IMG_0013

First day of school, 2014

While a massive part of me wanted to kick my heel together and skip out the school gates, there was a small bit of worry lurking in the depths of my stomach as well.

Cameron was at daycare for around two years. The staff all had training from the CF Association for his cystic fibrosis,. They worked very closely with me for his meals in regards to his special diet. They worked breathing exercises  into their daily programs so Cam could do his physio, without being obvious to other kids. I also wrote out medical forms every day to specify how many tablets he had to have, and when.

This was the cause of my worry about starting school.

(NOT Cam's lunchbox!) This is a representation of  a CF lunchbox. Seperated into meals. The round, blue containers contain the medication.

(NOT Cam’s lunchbox!)
This is a representation of a CF lunchbox. Separated into meals. The round, blue containers contain the medication.

The CF Association came to town a few days before school started and did a presentation to the school staff. I was present to make the information more personalised to Cameron’s needs. The staff seem to be switched on and are welcome to approach me with any questions (which they already have- just to clarify they are doing it correctly) Cameron takes his medication in his lunch box, and administers himself. I leave a note in different sections of his lunch box to let him (and the staff) know how many tablets to take for morning tea, lunch…etc..

Let me clarify right here….I am a control freak! This loss of control over knowing how many tablets he is taking…especially IF he is actually taking them just about has me starting the bad habit of nail-biting.

I trust Cam will take them. I trust that he will not start eating his meals without having his tablets. But there is still this niggling worry that something will go wrong somewhere.
At daycare, it was all written out for the staff. They stood over him and watched him have his tablets (he still administered himself, I believe). All staff in the building had CF training, whether they worked in his room or elsewhere….everyone KNEW Cam’s needs and their importance.
My biggest concern is that the teachers, aides (etc.)….but especially relief teachers…will miss the significance. The importance.

One part of my brain is trying to soothe me, saying “It will be ok. Other CF kids go to school!”….but another part of my brain is replying “But this is MY child!!! If they screw up…even just a little…it could mean pain!”

Cameron is absolutely LOVING school. In terms of medication at school….so far, so good!

He missed out on the last three days from the first week of school due to a medical check-up in Perth (another story in itself) but he is keen to return next week.

He is so eager to be a “big boy”. I’m eager to have “quiet child-free time”!! This is what is slowly calming my worries!

Everyone says “You wont know what to do with yourself now that they are all at school.”

Trust me…I know EXACTLY what I am going to be doing! I have a massive stack of books to read. I have a mound of paperwork I have been pushing aside due to lack of energy and concentration. I have friends who I have been neglecting. I have a giant pile of coffee pods to drink. I have many tv shows recorded.

I will be fine!

How was your first day of school?
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 🙂

Life gave you lemons? Make lemonade!

Owning a cleaning business means that I get to know my clients fairly well through their possessions. As an avid book reader, I always take an interest in books people are reading for literary inspiration.

Recently, while cleaning a house for someone whose son attended the same Early Intervention Program as my daughter, I came across a book on the coffee table titled “Parenting a child with Sensory Processing Disorder”. Since this is a bit of an issue in my household, I had a quick flick through and enjoyed what I saw. One excerpt caught my attention as it was highly relatable and explained parenting special needs quite well.

In the book, it is titled “Holland Schmolland”…I am going to  loosely quote it, but if you get your hands on the book, you can read the full story.

 

The book that generated this post

The book that generated this post

Imagine that you are planning a trip to Italy. You read all the latest travel books, you consult with friends about what to pack, and you develop an elaborate itinerary for your glorious trip. The day arrives.

You board the plane and settle in with your in-flight magazine, dreaming of trattorias, gondola rides, and gelato. However when the plane lands you discover, much to your surprise, you are not in Italy — you are in Holland. You are greatly dismayed at this abrupt and unexpected change in plans.

You rant and rave to the travel agency, but it does no good. You are stuck. After awhile, you tire of fighting and begin to look at what Holland has to offer. You notice the beautiful tulips, the kindly people in the wooden shoes, the french fries with mayonnaise, and you think, “This isn’t exactly what I had planned, but it’s not so bad. It’s just different.”

Reading this inspired a topic. The analogy is pretty much smack on perfect for parenting special needs.

While trying to conceive, and/or during pregnancy, you envision your child and how life is going to be. It is going to be textbook perfect, reaching milestones at the right ages, they are going to grow healthily and happily and life is going to be picturesque.

Then all of a sudden you get slammed with (in our case) milestones not being reached, resulting in hours of therapy, or serious health issues that require ongoing maintenance or care.

A personal example that echoes the analogy is my son’s cystic diagnosis. It was earth shattering when we got our diagnosis. I was in shock. I was upset. I was thinking “What on earth did I do to deserve this?” The night of his diagnosis is a bit hazy after the doctor said the words “Yes, he has tested positive for cystic fibrosis.” but I am pretty sure I said those exact words to my mum when she rocked up to the hospital that night.
Almost four years on, I am impressed at how well he has been! I was expecting to constantly be in and out of hospital with his CF. So far, we have only racked up two CF-related hospital admissions since diagnosis (then, also one overnight admission for acute tonsillitis) While CF is very prevalent in our lives, it is easy to forget how much it has impacted your life. I talk about CF all the time (probably too much on some people’s eyes!) so we never forget about it,  but we have had it pretty easy so far!

You can pretty much use this analogy for all things in terms of pregnancy and planning your life. The little munchkins have their own plans and will never follow what you envision.  There is no point running around like a headless chook, it doesn’t change the situation.
Best thing to do is to just roll with it as best you can!

A quote I recently saw on Facebook made me giggle, but is fairly true is: “If life gives you lemons,  make them into a chocolate cake and leave everyone wondering how the F@#K you did it!”

Bella 🙂

The Green-Eyed Monster

Green with Envy

EVERY special needs parent will go through this stage at some point.

A conversation that regularly pops up between by CF parenting friends, or development delay parent friends, parents of autism (ok, you get my drift here..)  is that we occasionally get jealous of other friends and acquaintances who have happy, healthy, “normal” (as normal as normal gets!) children.

The worst place for experiencing this is Facebook. You see all these pictures of happy smiling kids, and read statuses about the milestones other people’s children are reaching that your own haven’t reached yet (or reached at a much later age) and you think “Why cant that be us? Just for once!”

Facebook: great for socialising…and bring out the worst in everyone!

It generally doesn’t last long, and we hold no resentment to the individual person, but there is a bit of resentment at life itself.

It quite often crossed my mind of “Why cant I be one of these mum’s that can sit back and watch their children grow up?”Instead, I am pushing, pulling and dragging my kids uphill through life with weights on my feet, dragging me back to square one at every opportunity.

I recently went through a dark stage where I actually had to deactivate my Facebook account because it was bringing me down to see all these smiling, happy families. (Not saying that we aren’t a happy family, of course, but we have certainly had a rough patch lately…anyhoo, that’s another story!)

After a few days I realised that I had only isolated myself from certain groups of people who actually care and want to support me, and Facebook is my main source of communication for these gorgeous people. Those few days were all I needed to be able to get my head together, and was back in the thick of again.

Don’t sit there, reading this, and think “What a whinger!!” When you have gone through hours of  therapy appointments for your children, constantly been at a hospital bedside, have been constantly physically abused by your children (just because you said “No” or change their usual routine) or dealt with 4 kids of different ages, all in nappies at the same time, or have developed reflexes that rival Spiderman to prevent your kids from running away in public places, or had a string of medical professionals say “We don’t know what is wrong with your child and we are giving up!”…..you will feel entitled to “whinge” every now and then!

Which brings me to my next point, and a lot of special needs parents agree with this too, but we hate parents who really do “whinge” over how hard parenting is…..seriously??? You are going to whine about your healthy, developing normal child…..to ME?? Don’t tell me how hard it is until you have spent a week….no…a DAY….in my household!

Then you can tell me how hard parenting is.

 
Feel free to share your opinions or experiences on my topic tonight, but this is an aspect of special needs parenting that I have been wanting to share for a while. It’s an aspect so many of us experience but feel it’s taboo to talk about. But I want people to know….it’s normal!!

Bella 🙂

 

 

CF Folklore Story

 The term “65 Roses” came about when a young boy couldn’t pronounce cystic fibrosis. You can find the full story behind it here.

This exact scenario happened to me today.

I was driving along in the car, with my eldest son (almost 7yrs) and my daughter (5.5yrs) who both have Global Development Delay in the backseat.

We passed an ambulance racing off to an emergency, sirens blasting and lights blazing. The kids were very excited. My son turned around and said “My mummy has been in an ambulance!”

“That’s right, buddy! When your little brother was a baby and he was very sick.”

“The ambulance took you to the airport.”

“That’s right. We went on a special doctor’s aeroplane to hospital in Perth. He is still a little bit sick. Can you remember what he has that makes him sick?” (I am slowly trying to get them to understand that my youngest son has cystic fibrosis, and that is why he has medicine daily and has special exercises)

“Sixty-five roses!” he replied.

I just about cried! The folklore story of 65 Roses Day came to my mind instantly. It makes our upcoming 65 Roses Day all the more special now. (25th May…just thought I would remind you all! lol) He said it without hesitation and without prompting. I was so proud of him!

Dont forget that you can donate online to our 65 Roses Day fundraiser at the link below:

http://www.everydayhero.com.au/belinda_giovanazzi

I just had share this little story. It was one of those moments that melted my heart!

Bella 🙂

 

Parenting blog

I recently received at letter from one of my followers asking if I would please spread the word of her own blog.

I don’t mind doing this, especially if I think it has something significant to say about the causes I believe in, or if it’s a great read. Suzanne’s blog is both!

This post is called 10 Bad Eating Habits Parents Often Teach Their Children. I have to admit that even though I am very strict on my children’s diet, I am guilty of some of these traits.

Which ones are you guilty of?

Have a look around at the site. There are some great articles on there!

Bella 🙂