Thursday, March 28, 2013

The Fear of Infection

This week I took the boys shopping for wedding dresses for my best friend, Kristy. It was such a huge day and we visited several different bridal shops and watched Kristy try on a lot of different dresses in different styles. I tried on a few bridesmaid dresses as well to get an idea of style and colour. The boys were very well behaved: it was a long day for them and they were bored, but they still behaved very well. I was really proud of them. Our last stop was to a stationery store specializing in wedding paper and invitations. By this point they were both tired and fed up, and I don't blame them. It's not surprising that two little boys would not have the best time shopping for dresses.

However, when we got to the stationery store, there in the corner was a playpen full of toys. Genius! I could finally have somewhere to put them, they would get to actually play and be contained, and we could spend time looking at invitations and paper.

Holding Victor on my hip, I hesitated. I looked at the playpen. It looked clean enough, and I thought that surely it wouldn't be used all that frequently. There were no other children in the shop. But I also wondered how often the toys were cleaned? Probably never, would be my guess. I wondered how many children had put the toys in their mouths, how many had coughed and sneezed all over them, how many had grubby hands before playing with the toys? Probably all of them.

I know there is a limited time frame for how long germs can live on a hard surface like that, but for some viruses and bacteria it is long enough to pass to the next kids playing with those toys. And I have no idea when those toys were last played with: a week ago? A day ago? An hour ago?

It sucks, because I would never think twice about letting Felix play in there.

Victor was so desperate to get down and play. He had been carted around all day and barely had any time to play at all. So I put him in the playpen. I just had to trust there was nothing nasty in there. After all, he is still a kid, and he needed to play. He deserved to play.

I know I can't keep him in a bubble and I can't eliminate all health risks for him. We can do the obvious, such as hand washing and keeping him away from people who are unwell, but there are bugs everywhere and it's impossible to live in a sterile environment. I also know that he has to build up his immune system like everyone else, and limited exposure to germs can help with that. I also can't live life in fear of sickness. That is a one-way road to crazy town.

We are headed into winter so I will be stocking up on anti-bacterial wipes and hand sanitizer and being vigilant with it. I guess this is one of those situations where the phrase 'everything in moderation' works well as we try to strike a balance between reducing his exposure to germs but not destroying his childhood in the process.

Sunday, March 24, 2013

Making Healthy Choices

This week Felix was initiated into the confusing and contradictory world of making healthy food choices. It seems like every other year a 'bad' food is declared good or vice versa, so we kept our activity very simple and in line with the views of our family.

I think Felix has been going through a growth spurt lately because every ten minutes he's been complaining that he's hungry or saying that he wants something to eat. And when this happens right after a meal, it drives me a little bit crazy! So I set up this little activity so he can start to learn about making good nutritional choices, because at the moment I don't think he has a clue.

I gathered together some catalogues from grocery stores that we had in the house, and cut out pictures of various food items. I tried to limit it to food he's familiar with and would recognize, so I didn't include any pictures of meat: for some reason, all pictures of meat in catalogues are raw.

I got two pieces of cardstock; one green, one red. On the green card I wrote 'Healthy Choices' in the middle, and at the bottom there was the caption: 'These foods help us grow big and strong'. On the red card I wrote 'Treats' and the caption: 'These are foods to only have sometimes'.

Felix and I sat down with the cards and the pictures of food and we talked about each one and decided where it should go. He glued each one to the appropriate category. Then I stuck the finished cards on the pantry door for future reference! The 'healthy food' card is at Felix's eye level. I want it to be a reminder of all the things he could choose from, rather than constantly seeing things he shouldn't have. The 'treats' card is closer to my eye level; sometimes grown-ups need reminding too!

When Victor is old enough I will be doing a similar activity with him too, but his will be a little bit different. It's easy to adjust to various nutritional needs: just choose the foods that are healthiest for the child and put them in the 'healthy choices' category. This activity could be expanded as well. It could be turned into a complete 'food pyramid' or in the case of CF, the 'food rectangle'! You could create more categories and explore the nutrients present in each food and what those nutrients actually do for the body. You could choose a different focus and separate sugary foods from low-sugar choices and discuss what the effect is on dental health.

Now when Felix asks for a snack or says he's hungry, I point out our charts and he does actually take that into consideration. Because he made them himself he likes having them displayed in the kitchen and likes talking about it. As for my kitchen, well, it already looks like a playground wonderland in here so a little bit more child-centric decoration fits right in!

Monday, March 11, 2013

Keep Your Breastfeeding Judgement to Yourself

Today Phil, the kids and I went to Oz Comic Con, which had arrived in our city. It took place over the weekend. Phil went both days and was even lucky enough to meet and have a few drinks with William Shatner...yes, the real William Shatner.

So the kids and I tagged along on the second day. It was absolutely packed and lots of people had dressed up. Some people had gone to huge lengths to have absolutely amazing costumes and it was fantastic seeing them. Felix was especially impressed to see Batman, Princess Leia and a Stormtrooper, Spiderman and the Ghostbusters. Felix wore a Batman t-shirt with a cape and Victor wore his yellow Star Trek onesie...a perfect baby Captain Kirk.

Around 9am Phil went to watch a Klingon panel and I sat down with the boys in the café area. Felix got some chips and I nursed Victor, as I always do at around that time of day. The café area was fairly quiet with lots of empty tables so we sat at a table in the back corner. I chose this location so I could have some privacy and in the hope that Victor wouldn't be too distracted by anything to actually nurse.

A few minutes in, I noticed that the man sitting at the table diagonally in front of us was giving me a disapproving stare. To me, that look said "Seriously? You're going to do that?" I am almost certain that's exactly what he was thinking.

I just pretended I hadn't seen him, and occupied myself by talking to Felix and eating a few chips myself. I couldn't help but notice that the man had shot a few more frowns in my direction though.

He must have said something to his partner because she started shooting me dirty looks as well...and since she originally had her back to me, she had to completely turn around in her seat to do so. I started feeling really uncomfortable and self-conscious. She must have turned around no less than five times to get a good look at what I was doing and give me a very condescending stare. I wish they actually had the guts to just say something to me, because the passive-aggressive way they were trying to intimidate me was actually working. I was extremely tired and not in the most social mood that morning: I was happy to be there, but I didn't want to interact too much. I just wanted to wander around quietly and look at things. I was not feeling totally myself and the thought of confrontation or conflict made me feel nervous and shaky.

If they had simply come up and said whatever it was they were thinking (I can imagine), I could have politely yet firmly set them straight. I know there is nothing wrong with breastfeeding. I am very comfortable with the choice I have made to breastfeed. I also know that the law is supportive of me and that I am within my legal right to breastfeed wherever I want to and no one has the right to tell me to stop or move somewhere else. If I had the chance to just say that, I would have felt better. I would have been able to stand up for myself. But they never did say anything to me, and I was not going to start it myself. Perhaps on a different day I would have, but not this day.

After the woman swiveled around for about the fifth time to stare me down, I caught her eye and smiled. As is the case when you're caught staring, she was sufficiently embarrassed and turned back around in her seat and didn't turn back again. It was probably the best response given the situation.

Eventually they finished their coffee and moved away, and we did too. I saw them a few times whilst walking around the stalls, and for some reason the nervousness came back and I felt my heart beat faster again. I have no idea why they had such a hold over me, this isn't like me at all. I can only put this response down to a huge lack of sleep the night before; went to bed late and woke up very early, and then we were out the door before 8am.

I really don't understand why anyone would react this way to someone breastfeeding their child. It's a natural, normal thing. Many studies have shown how beneficial it is for both the mother and baby, and the health benefits last until adulthood. But most importantly, it is no one else's business. How a mother feeds her child is really of no concern to anyone aside from the family and the baby's doctors, and certainly does not involve input from friends, extended family or strangers. When I was sitting in that corner quietly and discretely feeding Victor, I was not intruding upon anyone. I was not involving anyone. I was not hurting or inconveniencing anyone. I wasn't even speaking to anyone except Felix, and I doubt they could even hear that given the volume of the room we were in. A good option for these people would be to simply look in another direction. For this couple, that other direction could have been the direction they were actually facing to begin with.

It makes me sad for other mothers out there who are also facing judgement for something as simple as feeding their baby. Although I felt uncomfortable at the time, I am fine now and that incident certainly won't change my mind about breastfeeding, whether it occurs in public or private. But the same event happening to someone else could change their outlook entirely. It could cause someone to give up on breastfeeding. Nursing may be natural and normal, but it certainly isn't always easy, either physically or mentally. It could cause a new mother to question her choices and give up on breastfeeding against her better judgement.

I hope I never see those people or run into the same situation again, but at the same time I hope they do realise that what they were doing was bullying. It was immature, rude and just plain ignorant on their part. Here's a tip for people who find themselves awkwardly trapped by a rouge breastfeeding mother sitting in the back of a café: turn your neck and look the other way. And have a nice day.

Thursday, March 7, 2013

Dropping the CF Bomb

By now, cystic fibrosis is a part of our lives. It's starting to become more normal, less shocking. I am reminded every day of it when I have to give Victor enzymes before he eats, when we do his physio twice a day, when he gets his antibiotics and supplements and all the rest of it. So it's always quietly lurking there in my mind and over the months I think we have all become accustomed to it. I forget that other people are not at this point. Other people who don't know me or my family sometimes get a CF bomb dropped on them, completely inadvertently, and it's a bit of an awkward situation.

What is a CF Bomb? It's when I casually throw into conversation that Victor has cystic fibrosis. Sometimes I have to, to put a story into context, or sometimes it just happens because I forget that people don't know. The reaction is always the same: a swift contortion of the face into a look of concern. Their voice turns quieter, they say 'oh', and stutter for a bit because what do you say to that? I never mean to upset anyone but I can't think of a way to say it without eliciting that response, which is why I tend to just throw it out there and then quickly bury it in more conversation: a change of topic, or barging on ahead with what I was saying originally, anything.

A perfect example would be the electrician who came to my house a few weeks ago. We've had a dodgy situation with a light out the front of our house, so he came to have a look at it. He was a really nice man, very chatty and friendly. He had come to the house a few days previously but I was at a hospital appointment with Victor so my aunt was there instead. He mentioned this and said that he'd heard Victor wasn't feeling too well, and we had gone to the hospital? I was confused for a minute and then worked it out. "Oh no, he's fine," I said. "He just has cystic fibrosis so we go to PMH a fair bit for his appointments." And there was the expected reaction: his face fell, he said "well, he looks really good," and I think he said something to Victor and we moved on to talk about the light.

I felt guilty after this conversation: he was just trying to be nice, although he was the one who brought it up and I don't know what I'm supposed to say except the truth. I wondered if he knew what cystic fibrosis is; lots of people don't. Or if they do, they usually know only a little bit of outdated information which makes things seem much bleaker. But in general, once the CF Bomb is dropped, it tends to hang over us like a cloud until the conversation is over.

I have CF Bombed someone intentionally once. I felt kind of weird about it at first, guilty even; but then I figured so what? I never told a lie. And even with the amazing medical advancements, it still really sucks. It really does. And this kid needs to catch a break. We all need to catch a break. So recently I was on the phone to QANTAS requesting a bassinet seat for Victor. Luckily, I got the nicest lady on the planet on the phone. She chatted to me while she looked up my ticket; I wanted to make sure my ticket was connected to Phil's and Felix's tickets (they were booked separately). We discussed the bassinet seat, which is usually reserved for small babies. Victor will be 12 months at the time of the flight and it's a first in, best dressed kind of situation when it comes to bassinet allocation. She explained the weight limit (11kg). I said that won't be a problem as Victor is quite small at only 7kg (I don't think he'll be putting on 4kg by May). Then I sort of slipped in that Victor is small because he has cystic fibrosis. "Oh, the poor little thing," she said. "Look, I'll write a note on his ticket about that so when they do the seat allocation they will see it there and it might help you get a bassinet over someone else." Hey, this seat allocation is a ruthless game. Did I feel guilty about using his illness to potentially score a good seat? A little, but now I don't. Ideally there will be enough bassinets for all the babies flying; if there isn't, then perhaps it will make the difference between us getting the last bassinet over a similarly-aged baby. Maybe it won't make any difference at all. But I would love to have somewhere for him to sleep for at least part of the 23 hours we'll be flying.

Obviously we don't run around town announcing Victor has CF with a loudspeaker but sometimes it does come up in conversation: it's inevitable. Hopefully I will figure out better ways to say it and won't live my life leaving a wake of shocked people in my path.

Has anyone else ever dropped a CF Bomb? Is there a more graceful way of going about it?

Saturday, March 2, 2013


I had another 'psychological study' last week as part of the AREST CF program. AREST CF represents Australian Respiratory Early Surveillance Team for Cystic Fibrosis. It's a program only being used in Perth and Melbourne so far, but we have hopes of expanding it to include all of Australia and then internationally.

It's because of our involvement with AREST CF that Victor has had chest CT scan, bronchoscopies and lung function tests. Yes, some of these are invasive procedures and because of his age, must all be done under sedation or anesthetic. That carries risk. But, ultimately, I believe it's worth it. 

Using these tools, his doctors can discover early changes to the structure of the lung, early areas of damage occuring, and can accurately test for any infections that may be starting to colonize his lungs before symptoms appear. Catching these things early means we have a much better chance of eradicating the germs or preventing further damage.

The researcher came to my house around noon, and we sat in the kitchen while the boys had their lunch and she recorded our conversation. She asked me a lot about how I felt in the days leading up to the procedures, and how I felt while they were happening. It happened over five months ago so my memory of it is starting to fade, but I do remember feeling anxious in the lead up and while it was happening. I think it would be impossible not to feel anxious: your child is being put under anesthetic and they are having cameras and tubes inserted into their lungs. Plus the results could come back and say that they have a nasty disease sprouting in the lungs or damage occurring.

I told her that while Victor was having his CT scan and bronchoscopy a researcher spoke to us about the study and that kept me occupied for pretty much the entire time he was away from me. I don't think it was intended that way, but it worked out really well. 

I also told her that the procedure was similar to vaccination. You don't want to hurt your child with a needle, and you know they will probably get a fever afterwards and not feel all that great, but the end result is worth it. I think it's the same with the AREST CF program: you don't want your child to have to undergo this procedure, but the result is so worth it.

The researcher told me that some parents don't want to know if their child has damage to their lungs or is picking up an infection. To each their own, but this does seem slightly crazy to me. I get it: sometimes I wish that if I could just bury my head in the sand, all my problems would go away and fix themselves, but unfortunately this is real life and that doesn't happen. I think it's far better to get a good look, find out exactly what is going on, catch any changes early and remedy the problem while it's still just a small problem. Catch the disease before it starts destroying your child's lungs.

The point of all these questions was so they could inform prospective parents exactly what it's like, from a parent's perspective. They have seen such good results with this program that they want to get as many young CF patients on it as possible. 

We will have another procedure like this one coming up when Victor is around a year old. I wrote about his previous results, which were excellent: his lungs are perfect and healthy, exactly what I was hoping to hear. If the results this time aren't so great, then at least we will be in the best place to treat him and we will be able to start battling those germs before they even start causing symptoms. If you are wondering whether to start this program with your child, the answer is YES! I hope to see AREST CF spread all over the world because all children with CF need access to this wonderful program.
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