65 Roses Day, 2012

It’s been a busy day around Australia today. Being that it is the last Friday of May, it means that it is 65 Roses Day.

While May is Cystic Fibrosis Awareness Month, 65 Roses Day is the biggest day of the year to raise money and awareness for the most common recessive genetic condition in Australia, probably the world.

From things I have seen online, it looks like 2012 is going to be the most successful year for raising money, ever!

My eldest son in his “Red Dress” day for school.

While my own fundraiser doesn’t start until tomorrow, it has still be a busy day for me. I organised my children’s school to have a Red Dress day with a  gold coin donation. I don’t know how much they raised, but there was a massive sea of red when we arrived at the school gates this morning!

My eldest son and daughter certainly got into the spirit of things, with spray-dyed hair, red pants and a white shirt that I had painted red lungs on to (my daughter also wore a 1920′s style headband with a red feather) My son was pulled out of class to have a photo taken at the office. At this point, I am unsure if it was for the school newsletter or for the local paper. Either way, I am glad that they made such an effort to raise awareness (with pamphlets and an educational video making the rounds of the classes)

We are all organised for our sausage sizzle tomorrow, with my mum making all the effort tonight to cut the onions. At least she has a nifty little device to slice them to prevent tears!
Our raffle has already been underway for a week. We havent sold many tickets yet, but we are sure to get plenty of sales tomorrow. We also have a “Guess the lucky number” raffle going, along with merchandise sent to us from the CF Association.
The local support has been amazing, as we have had nearly $1,300 worth of products donated for our raffles! A lot of local businesses have organised sizeable donations as well.

While it’s great that money and awareness is being raised towards cystic fibrosis, it can also be an emotional day for those living with CF on a day-to-day basis. Another CF mum mentioned this morning that the day makes her feel a little sad. I didn’t agree at first, but by this evening, I am now inclined to agree.

I love the fact that money and awareness is being raised about something that has such a major impact in our lives. But with all the information that gets advertised on a day like today, it really brings reality of the situation home to us.

CF treatments and health effects are just daily life for us. You forget what the impact is. To watch videos, or read articles, it reminds you how bleak it could be. While the feelings aren’t as strong as at the time of diagnosis, you are reminded that this is something that shortens life expectancy, causes major drama, even pain. So many can’t wait for the bubble of ignorance to return.

Under the microscope for all to scrutinize

CF families are put under the microscope for everyone to see. It can be intimidating, even intrusive. I know I shouldnt complain, because in order to raise awareness, you have to raise your hand and say “Look at us! We are dealing with it!” , but when you want money for an organisation that does so much to help you, or even want a cure, you have to do these things.

I am very proud to be doing what I am doing. God knows I have probably bored (even pissed people off!) with my vocalisation, but you know what? This is who I am. I am not one to sit quietly in the corner and allow things to go unnoticed.

But in saying that, I will be glad when this weekend is over. I have been busting my little (ok, large!) backside for the last three months to get this fundraiser off the ground. I am over talking about cystic fibrosis for a while (is that sighs of relief I can hear out there!?!?!) I want to have time and energy to write on my blog again! So you will probably end up hearing about Global Development Delay (the other drama in our lives) or some other mindless dribble for a while.

I need rest. It’s going to be a loooooong day tomorrow!

Wish us luck (or better yet…donate online at http://www.everydayhero.com.au/belinda_giovanazzi !)

Bella

Camaraderie

Being as CF parents can be likened to the military. I know that sounds weird, but let me explain…

If there is a call to arms in the military, men and women everywhere drop what they are doing and rush to help. There is a certain type of friendship and understanding between them. They understand what another is feeling, can relate to their experiences, they trust each other totally. This is called “camaraderie”.

Being a parent to cystic fibrosis is no different. If someone calls out that they are having a bad day, or need help/advice, there are a mass of people who will drop what they are doing to offer their support. Whether it’s a virtual hug online, or a pat on the shoulder saying “There, there.” Everyone nods along when you relate your experiences. They know. They have been there. They have lived it.

I have met many wonderful people since my son’s diagnosis. There are some that I have physically met, and others who have only shared our experiences online, but there is a connection with these people that I struggle to have with people I have known my whole life.

These people are fellow war fighters.

From our experiences, no matter what our background is. We have a common ground that allows us to bond in a way that others cannot. I find myself being able to open up and talk to these people in ways never before. Instantly, I felt like I had known these people my whole life. They know my most inner self like their own best friend. Like being in the military, it can only take first-hand experience to be able to truly understand.

I am thankful for my comrades. Who knows where I would be today with out them. I hope they know exactly how special they are.

Bella

The “MacFarlane” family story- part 1

Here is another diagnosis story for you all.
I met Helen MacFarlane on Facebook little more than a week ago through Carly Mara. She has happily shared her own family’s diagnosis story as another guest blogger. Again, we are going to break it up in parts. Here is part one…

I hope you enjoy this powerful story as much as I have!

Bella

On every shooting star I use to wish for a child. And when I had my first-born, Christian……I felt that I only wanted one as I couldn’t possibly have enough love to love another….

And then as I reached my late 30’s, we decided that maybe we had room for one more. We both entered childhood with trepidation, both of us having incredible dysfunction of an abusive nature as children and not wanting to relive the pain of that again, by having our own. Pleasure and pain…….

Falling pregnant with the first child was slow, falling pregnant with my second was just as slow with a painful miscarriage in between. Again I wished on my stars that I would have a child, a little girl, a doll to dress up….I prayed and I wished and suddenly, amidst the familiar biliousness, I was holding up a stick with pee on it, exploding the words…”Im pregnant!!!!” to a surprised husband and a pleased, but slightly embarrassed neighbour.

My pregnancy this time was strange. Can I call it that?…..I tended to spend long periods of time in my pyjamas, I sulked and I was covered head to toe in a very nasty and raised, lumpy rash. I have never seen anything like it…it was angry and weepy and itched so bad, despite my attempts at an “organic” pregnancy, I was medicated to prevent scratching myself to death and bleeding in my sleep.

We decided with this pregnancy that we would also find out the sex of our child and also name the child early, so that “jelly bean” would have an identity. We soon discovered that we were having a girl and we decided to call her Asha Rose. Asha – because I love anything Indian and her name means “hope” in Sanskrit and “Rose” for my obsession with roses…little did we know how symbolic her name was to be…

My labour was intense and very quick. I discovered during the 1/2 hour drive through a very dark country road why the bar above your head in a 4WD is called a “Jesus Bar” I also learnt that just because you walk in reverse into a labour room, doesn’t mean you automatically get an epidural!!!

So….there I was….delivering a baby…drug free….with a husband who clearly stated earlier in the pregnancy…and I quote…”I do not want to go down south”…and I don’t mean, on holiday……we were already living “down South”!!!!

The beautiful baby, Asha

I recall afterwards feeling very empowered. I was crying, as you do, after the labour..lamenting to the midwife…that I had been known as “stupid” for so long, by my stepfather…and I couldn’t believe that I did THIS amazing thing and that no body could take that away from me…I cried because I did something right and I was very proud, of myself….my reward was Asha.

I recall as well sitting upwards, cross-legged on the hospital bed, with Asha on my lap and I was admiring how amazing she looked, that this baby had been gifted to us. I kissed her face a million times, almost to reassure myself that I wasnt having a dream and it was then that I noticed she tasted salty. I looked out to the window across at the beautiful rose garden and admired the roses…..and didnt give that a second thought. I was amazed that she was sweaty and it was 2 degrees outside!!.

When I handed her over to the Nurses for the Guthrie test, I didn’t give this a second thought either. I had the air of confidence of a second time Mum. “Just dont drop her on her head”I probably thought to myself as I was grateful for the cup of tea and Scotch finger biscuit left by the Orderly.

She came home wrapped in a beautiful purple wrap. She was given the appropriate attention that a newborn expects, food, warmth, shelter and bundles of love. I was casual and confident this time. I breastfed her whilst I checked the mail, watered the plants, answering the phone….I was marvelling at how easy she was…and I remember bragging to someone that this baby being second WAS easy….but I was very wary…..this was too perfect, something doesn’t feel right. I even voiced my concerns to a close girlfriend. She reassured me that I was worrying with no concern and to enjoy this special time. I continued on, with this gut feeling.

Then Asha developed a wheeze that wouldn’t go away and would scream at 2pm every afternoon and lift her legs to her chest. After she filled her nappy, the pain seemed to subside. I did mention to my clinic nurse who made notes in the “yellow book” and then she talked about colic and wind pain. The wheeze? Perhaps a cold?

Then we got the phone call. Asha was 5 weeks old. Our Doctor in Bridgetown rang us at home and I answered. He was using words like ..disease….no cure….Cystic Fibrosis…PMH….team of specialists….bed waiting……physiotherapy….normal lives….management. And then, at that exact moment….I actually felt my heart break……I felt “let go” by God and I felt like I was floating…in a bad dream. I was crying…..uncontrollably…..wet…..heaving…cannot breathe….oh my God…….Why?…wanting to vomit…..wanting to scream…needing…my Mum….vomit…..no breath….And..Im doing this, in front of my 4-year-old and my husband. Very very private feelings and emotions…..in public view. Once I had composed myself and comforted my husband, we silently went through the motions of heading up to Perth the next day. My son, Christian came over to me as I had my head buried in my arms, he touched me on the shoulder and sang the Good Night Song that GWN play every night. Fat Cat jumps into a bed and a song is played, poxy one…to the tunes of a keyboard… He sang this song like an angel….and then gently said to me…”I sang this song to you, to cheer you up….I love you”……It was his way of providing me with a safe place to hide…..I hid in his flannelette arms and cried some more….

We drove 5 hours to Perth the very next day and once settled into our room at PMH , the onslaught of specialists attacked our very private lives and opened the guitar case of emotions and plucked at every string. We were sitting on the bed dumbstruck at a new vocabulary with words such as enzymes….physio…percussion….malabsorption. I should have been listening but instead I’m looking at them blankly thinking “Why me? Why us?…….I ate the right foods…..I did good deeds……Ive already suffered at the hands of others……why are we being punished???” I met nurses Liz and Charlotte and cried in front of them…..Dr Wilson and cried solidly in front of him too. My emotions were raw and I felt incredibly vulnerable.

To be continued…

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

65 Roses Day, 2012

25th May, 2012

It’s approaching that time of year again.

65 Roses Day will be on the 25th May, 2012. This year, we are aiming for bigger and better!’

Last year’s efforts raised around $1,100. This year I am aiming for around $2,000-$2,500.

We are going to hold a barbecue at Woolworths (ok, once I actually book it, that is!) which hopefully go better than our previous effort of a sausage sizzle. Thank goodness we had the raffle running as well, as that is where 95% of our donations came in! Woolworths have said that they will set everything up for us at no cost (including gloves and hairnets) then sell all the produce to us at cost price.

We are going to hold the raffle again, with many donations already lined up. I am hoping to have given businesses a lot more notice this year, hopefully more local businesses will be able to donate. So we should be able to make that bigger and better as well.

I will keep you updated with our organising process. But for now, you can already help out. I have started a webpage where you can donate online. Every penny will help a CF family living with the disease. Follow this link to donate:

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

 

Please dig deep!

Bella xx

The “Mara” family’s story- part 1

Some time ago, I put the call out into cyber space, for any parents of children with special needs to share their stories.

It wasn’t only limited to Cystic Fibrosis or Global Development Delay. Anyone who wanted to share their experiences as a way to vent, or hopefully help someone in a similar situation, were (and still are) invited to tell their stories.

The wonderful Carly Mara accepted the challenge

Her daughter, Ava, not only has CF, but was also born with a cleft lip, and was also dealing with hip dysplasia. While all this was going on, Carly’s father had a stroke.

Her story has touched me. I can relate to so much of it (well, the CF side of it anyway!) I found myself nodding along as she describes her emotions. She has explained them so much better than I could!

Thank you so much, Carly, for sharing your family’s experience (and providing pics)

Follow her story. We will be publishing it in installments.

Bella

 Here is part one of Carly’s story….

 

Meet baby Ava. Isn't she adorable???

The 14th September 2010 was just like any other day.

We had a 3 week old baby girl who was born with a Cleft Lip and was also in a froggy brace for Hip dysplasia. Her cleft was discovered at my 20-week anatomy scan(another day I will never forget!)

 I was devastated. I just couldn’t believe this had happened to our baby girl’s face! It was hard enough getting her here to begin with, being that she is our IVF miracle I was sure that was the biggest hurdle we were going to have to overcome! So once I got those two little lines, and the confirmed blood test, I thought “WOW. We did it!”

Little did I know there were three things waiting for us around the corner, the biggest blow coming to us last.

I remember the midwife coming to check on Ava. and also to do the Guthrie Test. It’s funny. you know, cos when I think back, the midwife handed me a pamphlet explaining the Guthrie Test, how it was done and what it screened. I had a really quick look at it and placed it on the table. My mother-in-law said “Have you read through it?” I said “Yeah” quickly, then the midwife said I should sit down and have a read.

Once again, I just flicked through it thinking to myself “Nah it’s all good. We’ve got the cleft lip and the brace (which was fitted at three days old)…there couldn’t possibly be anything else.”  So the whole thing just left my head. Test was done, Ava was looking well and doing everything a newborn should be doing so all was great. I never gave that Guthrie test another thought.

We knew Ava’s Cleft would be repaired at 3-months-old, so we were concentrating mostly on that, trying to prepare ourselves mentally and emotionally. So the morning of the 14th September, I was sitting on my bed, Ava was asleep and my hubby was out in the kitchen. The phone rang, he answered it. I could hear him talking for a while but couldn’t hear what was being said. Didnt really think much of it. Then he hung up walked in and said to me ” That was a lady from Princess Margaret Hospital. She said Ava has tested positive for Cystic Fibrosis”

I just looked up at him and said “What?”

Ava in her brace for hip dysplasia

I was dumbfounded! Mostly cos I wasnt too familair with CF. I knew it existed along with a million other diseases. I knew it wasnt a nice one, cos I remember a conversation with my mum years ago talking about her nursing years. She said that from things she saw she never wanted to have a baby with four particular diseases, one of which was CF.

I asked hubby to tell me the whole conversation, so he repeated what he just told me. I demanded more information, but I think he was stuck too, not knowing exactly what had just happened. But luckily he wrote down a phone number, so I called and got Liz on the phone. She explained that the Guthrie test had come back positive for Cystic Fibrosis. She gave me a rough run down of what it was. I just kept asking her if they were sure, like, really, really sure. Is it possible they’ve made a mistake? Are there any other tests Ava has to do to further confirm it?

Liz told me about the Sweat Test. I think I was on the phone to her for about twenty minutes, going around in circles pretty much, trying to comprehend what was being said, and at the same time flat-out rejecting it. I wanted to scream and cry. I also felt totally numb and angry and confused.

I think about a week or two later we had to go to PMH for CF Education, woah! What a head spin that was! So many people, soo much information. All so scary, confusing and overwhelming. I think it was even harder for me at the time, because the same day as Ava’s diagnosis, my dad had his second stroke, so we were between Sir Charles Gardiner Hospital & PMH for quite some time.

Thank God we were given so much literature, cos there is no way in hell I could have retained much information. Everyone time someone walked into our little room to talk to us about their part in CF treatment, I felt defensive and a little stand-offish, like it was their fault we were there. I felt some kind of resentment towards Liz for calling us that day too. Every time we would get a phone call or appointment letter I would feel angry because I just wanted us to be left alone. I had waited sooo long to finally have my little baby, and I was having to share her with all these people.

Being shown all the physio positions and all the medication Ava would be on was very overwhelming. Where physio was concerned, for a few months, it wasnt at the top our priority list because Ava had to be in the froggy brace for 23 hours a day (it could only come off at bath time). Our physio understood, so that was one less thing taking up space in my head.

 Our first lung function test was a whole lot of drama for nothing. Very stressful the first time around. The sedative didnt do its job. Ava was screaming and crying, which was upsetting me. I hated seeing her have to go through all this stuff. At one point, hubby was holding Ava in one arm and vacuuming the main desk in Respiratory Department, trying to get Ava to sleep (she was a white noise baby for quite a few months. I spent many hours with the blow dryer going or the vacuum putting her to sleep, even at 3am!) But unfortunately this day at PMH it just didn’t work. So after an hour or so, we decided it was time to go home, thank God! Once home, Ava slept soundly -of course!

Our first Bronchoscopy was an experience too!

Fasting a baby is horrible. Being in the waiting room with other parents and their children, waiting to be called in, while your walking the floors with a screaming baby is no fun at all! Plus being a bag of nerves knowing what is going to happen, your mind going over what they might find in those little lungs, it was really starting to do my head in! Then finally we were called in. The walk down the corridor felt so long, cuddling Ava soo tight and giving her the biggest kisses as I hand her to my husband, Chris, so he could be with her when she goes to sleep.

I just felt sooo helpless and guilty, and wishing I could take it all away from her, or that I could go through it all for her. We waited in the Friendship Room. I finally sucked my tears up and it was all over. Into recovery and there she was, my tiny baby, sound asleep. So the tears started again. The results from the bronchoscopy came back fine.Yipeeee!

 One bronc down, Cleft lip repair to go!

To be CONTINUED……Keep an eye out!!!

 

 

***Extra Notes***

 The nurse mentioned in this installment, Liz, will be known by West Australian CF families. To those who don’t know her, she is a clinic nurse on the Princess Margaret Hospital CF team. She is the “guru” CF nurse.

The” Friendship Room” mentioned, will also be known to families who have been at PMH. It is a waiting area for parents to sit in while their children are in surgery. It is run by hospital volunteers who serve tea/coffee, provide plenty of magazines and conversation. They receive the call when your child is out of theatre, and escort you down the passages to where your child is in Recovery.

Little white lie

All parents will agree that they have used “little white lies” to get their kids to do something (eg. “If you keep pulling that face, the wind will change and your face will stay that way forever!”) Any parents who says they have never done this, is telling a little white lie!

But I have come up with the best thing EVER to keep my kids in bed at night…well actually, they came up with it, and I just ran with it.

While going through the usual motions of tucking the kids into bed for the night, my eldest son and daughter (who share a room) pointed to a star outside the window, saying it was the “Second star to the right, and straight through to morning. That’s where Neverland is, Mum!”

This could work.....

 

A light bulb light up in my head.

Totally exasperated with our night-time rituals, I decided to embellish on their favourite story of Peter Pan.

“That’s right. If you are really, really good, and stay in bed, and don’t jump around on your bed, Peter Pan will come to your window to take you to Neverland! Tinkerbell has special fairy dust to help you fly. BUT…they only come to good kids.”

 

Their little eyes lit up…but my heart sank. I hadn’t thought this one through very well. What would happen in the morning when they wake up and realise that Peter Pan didn’t come to their window the night before??

“But remember guys, he is really busy. There are a lot of kids he needs to take to Neverland, or he might be fighting Captain Hook, so he may not come” (Nice one, Bella…you got out of that one nicely!)

They were really understanding, Peter Pan is a very busy boy after all, on all his swashbuckling adventures!

But the best thing of all….it worked!! I have not heard a peep out of them all night, and I have four children passed out cold in their beds right now, without any dramas. I honestly cannot remember the last time this happened!

I am storing this little idea in my back pocket for the next night they are driving me up the wall with their antics. You are welcome to poach the idea yourself!

Night all

Bella

Latest health update

Hi all!

We have been home from our latest check-up visit in Perth for a week now, but I have only just now had a chance to give an update.

Sweat test device

We took our middle son, who is four and a half years old, with us for his sweat test to see if he has cystic fibrosis as well. He was one of our kids that we put a question mark over when we found out our youngest had CF. However, due to the long process we went through with our daughter’s diagnosis (or lack thereof) he was put on the back burner. However, I am very pleased to announce that his sweat test came back within normal levels. He does not have CF

We do not know yet if he is a carrier. He has to make the decision to be tested for that when he is older. Trust me when I say that we will be strongly advising him (along with our eldest son, whose sweat test also came back negative) to undergo that test!

Back to my CF son….

The respiratory doctors were basically “Thanks for travelling 450km. Everything is fine, we will see you in three months!” I guess you can say that is annoying, due to the travel, but its the best outcome you can hope for!

The dietician would like us to write a diary of his food intake for about a week before we return for the next visit so they can see how we can tweak his diet to boost his iron intake (as he is slightly iron deficient) I’m not sure how else we can do this without medication as he is an absolute carnivore! We try leafy green vegetables, but good luck getting those sort of foods into a two-year old! But they want to retest his iron levels in three months.

My son's daily dose of medications

The gastroenterologist was concerned that my son was at his maximum amount of enzyme tablets (pills to help digest food) a day, yet was still pooping too much. So he has been prescribed another medication, Losec, to help the enzymes break down. They will see how he is going at the next clinic.

We found an instant result with the new tablets. They almost work too well. But we can reassess later on. But for now, at least my house doesn’t stink as bad! But the poor little blighter is now on six different medications a day (that’s just when he isn’t sick!)

Overall, it was a successful trip for my youngest son. But, the biggest thing that had me walking out of the hospital smiling, was the fact that the doctors have taken me very seriously in regards to my daughter’s eating habits. They have agreed that we aren’t very well supported back home, so they going to class her as “CF” so that we can see their child psychologists on their team. Since she is coming with us again on our next visit, they are setting up an endocrinology appointment to rule out anything physical, since no psychologist will ever take us seriously without having ruled that out first. I just about kissed the doctor when I realised he was taking my concerns seriously, and was just as concerned as we are. A weight got lifted off my shoulders when I mentioned to him that it had been suggested to me in the past that she may have Prader Willi Syndrome, and he said it was one of his first thoughts of possibilities, but we have to do the endocrinology first.

It was the first time ever that I walked out of the hospital happy and relieved!

There will be more news on my son at the next visit in three months time when he has a heap of blood work done to test all his levels. So I will update you all again then!

Bella

Insatiable

From a very young age, my daughter has had an insatiable appetite. I’m not talking about the ability to eat large meals. All of my children are big eaters.

No, my daughter takes it to the next level.

It started when she was about ten months old. She would crawl up to our pantry, open the door and eat whatever she could reach. At that stage she was only tall enough to grab from the bottom two shelves, which is where all my baking supplies are kept. So she was happy enough to sit and eat fistfuls of flour!

Lock #1

So being the conscientious parents we are, we put a child lock on the door, up the top. One of those little lever-types that you push down once it’s opened a fraction before you can open it fully.

Time went on, more children were born, earth-shattering diagnoses were made (CF and GDD) and the problem went ignored.

When she got to the age of about four years old, my youngest was crawling around, causing havoc with all cupboards he could find. Our house became Fort Knox, locks on absolutely everything (something we never had to do with the other children)

It was during this time that we realised exactly how big of a problem we had on our hands.

Our daughter would eat anything that was edible…even those that weren’t! I have caught her eating rotten food out of the bin. We had a George Foreman Health Grill (which has now been disposed of) and she would eat the grease out of the grease trap, and I’m not talking just a little bit, no…I am talking about three-quarters of a full container gone! Every day we would walk past where it permanently sat on our kitchen bench to find most of the contents of the grease trap missing.

Then there was the shopping trips. I would have to frisk my daughter before we left the store, often finding Chuppa Chups or small lolly bags in her pockets. The cashiers would giggle, not knowing how much of an issue it really was. I wasnt able to go into the fresh food section of grocery stores for a long time because my daughter considered it an open smorgasboard. It was difficult at times to find time to be able to go shopping “kid-free” to buy fruit and vege.

Once we got home with shopping, so many times while putting the groceries away, I would think “I’m sure I bought some biscuits (for example) for the school lunch boxes. Oh well, I obviously didn’t pull them off the shelf!”, only to find a few days later that the product in question was hidden in those little pouch compartments on the back of seats in the car, the biscuits eaten of course! This prompted a change around in our car of where kids sat so that she didn’t have anywhere to hide food wherever she sat. She is not allowed to sit next to shopping bags on the way home now.

Once the temptation to steal was removed from the car rides, she upped her cause at home. We started finding that she was stealing and hoarding food around the house. I would have to check her numerous hiding places several times a day. Under beds, in toy boxes, behind television units, in her wardrobe, even hiding in highly visible places like in amongst my husband’s numerous baseball trophies! The situation was becoming out of control!

Child lock #2

 

We realised, that although we had that lock on our pantry, her hand was still small enough to fit into the small gap before you push down the lock up top. The time had now come for a second lock on the pantry. This time, one that wraps around the door so she couldn’t get that gap open.

This helped stop the hoarding considerably. It still happens occasionally.

But if anything is left on the kitchen bench, you can guarantee that she will be into it. Nothing gets left on the kitchen benches anymore. I have just discovered in the last couple of days that I am not going to be able to leave my sugar/tea/coffee canisters on the bench anymore, as its beginning to look like she is hooking in to them as well.

If there is a spill on the kitchen bench that I havent wiped up straight away, she will be right there when my back is turned, using her fingers to lick it up. You just hope to God that it is an edible liquid, not chemicals!

My daughter is by no means overweight. She is well in proportion for her age, but if we let her eat the way she wants to eat, she would definitely be.

A lot of people thought we were over-exaggerating the issue, until they experienced it themselves. My mother was one who kinda felt this way, until she found a hoarding hiding spot at her business. Her school didn’t realise it was an issue until I brought it up towards the end of the year. After a couple of incidents there, it made them wonder how many times she may have had an opporunity throughout the year that they missed.

The balanced diet

When we found out that she had tested equivocal on her CF sweat test, there were a few of us who thought that there was a possibility that her eating habits were CF related. However, doctors were relatively confident that it was not CF related, that is was behavioural/psychological (this has recently been confirmed by the CF team, that she definitely does not have cystic fibrosis) About eighteen months ago, we saw a local dietician. We gave her a list of my daughter’s eating habits over a couple of days (well…the food that we knew about) who said she has a very balanced diet. But when she heard that my youngest son has CF and that my daughter was testing as a “maybe” at that stage, she got a bit excited, and told me that we needed to boost her meals with fats like we do with my son who does have the diagnosis. I walked away from the appointment very dubious, so I called our CF team, who were shocked and said under no certain circumstances are we to feed her the CF diet as we will make her sick! This is exactly what we were thinking, so it was a sigh of relief to hear it from the experts. The CF team said that they will deal with her diet until a diagnosis (good or bad) is reached.

We have been stuck in between a rock and hard place with this. Since the equivocal result, the CF team were saying “Not CF related, not to do with us” (even though they are helping us out now) and local psychologists have been saying “Well, it could be CF related, so we can’t deal with her yet.” But since the doctors have said no CF, but still has respiratory issues, they are working out referrals for us to see child psychologists locally. So I will let you know how that goes.

It has been suggested by a few people (non medical) that she may have the eating disorder, Prader-Willi Syndrome. I brought it up to our pediatrician (have I mentioned that I don’t like her??) who said, off-handedly, that she doesn’t show enough criteria for it. I don’t even know what the criteria is, except the overwhelming desire to eat…and eat…and eat.

I’m hoping to get in to see a child psychologist soon and get some answers. I’m worried about when she starts pre-primary in a few weeks. I don’t want her stealing other children’s lunches, nor do I want her to be this notorious child who is rummaging through bins while everyone else is in the playground. Thankfully, she will have the same teacher that my eldest son had when he was in pre-primary. She is a “no-nonsense” teacher, who will take my concerns seriously and will keep an eye out for us.

I will let you know how we go, but I would be interested to hear from anyone out there who is going through a similar situation!

Bella