cysticfibrosismom

I'm just a regular mom, figuring out life with my daughter Sophia, who has cystic fibrosis.Take this journey with me.


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Watching Children Learn

My husband and I have always taken our cues from our kids. When Sophia wants to see how a caterpillar turns into a butterfly, we teach her about cocoons and show her a You-Tube video.  When Simon points at a spider and says ‘what’s that’, my husband teaches him about spiders. When they ask why the stars don’t fall out of the sky, then we look it up.

We’ve used the same tactic when it comes to questions about cystic fibrosis. For years Sophia had no questions. It wasn’t until she told me that the reason Simon doesn’t take enzymes is that ‘he’s not big enough’ that I realized we had some educating to do. I explained that his tummy works differently and that he already has those enzymes inside him. Sophia seemed pretty happy with that explanation. I’m still waiting for a question about why Simon doesn’t do chest therapy, even when he has a cold. I’m always telling Sophia that the reason we do it so often when she’s sick is so that it will help her get better sooner. I hope she hasn’t concluded that we’re not that concerned about how long Simon stays sick! I’ll keep an ear out for random comments to that effect…

It’s fascinating to watch little minds at work. When Sophia was learning about boundaries and rules, all we had to do was say ‘no’ once and she’d get it. Simon, on the other hand, likes to constantly experiment to see if the boundary has changed, or at least softened a little since his last exploration of it 5 minutes ago. The word ‘no’ elicits a pause in his activity, a couple of deep breaths, a casual glance around to see if I’m still there, and then a slow reach for the DVD player. As though the boundary is a physical line, and he’s just checking to see where exactly it lies. Fascinating. Frustrating at times, but fascinating.

Sophia loves numbers, likes to count, do simple addition and subtraction. Yesterday she asked for a fish sandwich… which is actually a bun stuffed with goldfish crackers. She requested 65 fish. My husband looked at her, surprised. She usually stays under 39, in her comfort zone. For those who haven’t heard it before, “65 roses” is what many small children called “cystic fibrosis” because it’s easier to say. Jason and I have recently talked about a 65 roses poster that we’re having framed for her room. I’m guessing this is how she got the idea to use the number. Now I’m curious to know if this number has any other meaning for her… i.e. does she think we say 65 roses every time we talk about cystic fibrosis? Her use of the number may just be a casual repetition of a word we’ve said. Or we may be on the verge of another discussion.

Either way, these little forays into a child’s mind keep my days interesting and my love for my children strong.


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How many strides make it great?

I take great joy in watching Sophia run– whether she’s playing ‘Monsters’ with Simon and running around the loop in our house, or racing her friends to the finish line. I’m often asked by medical professionals if Sophia can keep up with her peers. It would be fun (in an academic geeky kind of way) to hook Sophia and her friends up to O2 Sat machines and stick them on treadmills and see how long they could run. Maybe I could use candy dangling just out of reach as a motivator. And exercise-powered TVs in front of them playing Dora the Explorer.  I’m thinking I might have trouble getting this idea past the ethics board. So, using just my eyes as a judge, I’d have to say that ‘yes,’ Sophia can keep up with her peers.

Coming up at the end of May, our family and friends will be participating in the Great Strides™ walk for Cystic Fibrosis. This is a 5km Walk or Fun Run. I like this event because it’s all about gathering your loved ones together, and having fun in an outdoorsy exercising sort of way. While this may be a ‘walk in the park’ for many of us, taking 7576 steps can seem nearly impossible for those who struggle to breathe. When I think of it that way, keeping myself motivated to help find a cure is easy.

In the past 4 years team Zoom Zoom has raised nearly $100,000 to help fund research and clinical programs via Cystic Fibrosis Canada. Last year alone we raised a whopping $36,000 and I hope to surpass that this year. If you haven’t gathered from previous posts, I’m a wee bit competitive. What better way to channel my energy than through fundraising to help make my little girl’s life better?

Check out our new Video (Video 2013 at the top of this screen), and feel free to get into the spirit and donate (convenient link can also be found at the top). Every penny counts. Thank you!

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Growing Up

It always amazes me that in 9 short months (though for the pregnant woman it can seem like the longest 9 months ever), two cells divide into millions and a living, breathing human being is created. It amazes me in equal fashion that these beings remain dependent on their parents for almost 2 decades (longer in some cases, I’m told). But when you break it down into days, months, and years, there is constant progress. Every day I am thrilled that my 21-month old son has learned a new word (so far they’ve all been good ones… except maybe ‘MINE’ and ‘NO’). Yesterday my 4-year old Sophia aced several categories of Brain Age, and spelled both ‘Sophia’ and ‘Mommy’ perfectly without prompting.

And then there are milestones unique to some children. I remember clearly the first time Sophia held her own nebulizer for chest therapy. I finally had a few minutes of freedom to clean up the breakfast dishes or drink my coffee. I remember when she finally let me use nasal spray, without having it squirt into her eyes and hair with last-minutes dodges. Yesterday Sophia swallowed her first pill, using just a drink to wash it down. This is a momentous occasion. I don’t have to bring applesauce and a spoon everywhere I go! For the life of me I haven’t been able to find a small container that doesn’t leak sticky applesauce juice into my purse. During these moments I am as excited as I am with all of her other achievements- going to the potty by herself, her first word, the first time she caught the ball I threw at her (there were a lot of sore noses leading up to that one).

I’m still waiting for some other milestones to be reached… like the first time she doesn’t scream during her throat swab, and when she sits still for bloodwork… and I can’t wait for her to share and play with her brother, stand up on skates alone for the first time, ride her bike without training wheels.

Such is life, and it’s a beautiful thing to behold. The ebb and flow of achievements and setbacks, but always progressing forward. Being a parent is a wonderful thing.

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Community

As I gear up for the 2nd Annual Charity Ultimate tournament, with all proceeds going to Cystic Fibrosis Canada, I feel very thankful to be part of such a great community.

We started this tournament last year… it was called the 1st Annual Charity Ultimate Tournament then. There were only 4 teams, it took place in the middle of the night (indoors, there were lights, we’re not THAT crazy), but somehow we managed to raise almost $4000. There were so many awesome people who, although they were not all daft enough to want to play Ultimate at night, still supported us by donating to Cystic Fibrosis Canada. This was a true community at work.

We live in a world pushed along at lightning speed by smart phones, Twitter, Facebook, and so on. We can be so disconnected from real-life interactions that we spend hours texting others, reading the latest tweets, keeping on top of our email, all while visiting friends- people actually sitting next to us. And this is deemed socially acceptable. Given this frantic state of affairs, I was humbled to see that this type of community still exists. A group of like-minded sporty types all rallying behind a fellow player and her family. Taking a break from their virtual worlds and helping out a friend.

This year we are aiming even higher, and running an all-day 4 on 4 ultimate tournament, with Mens, Womens, and Mixed divisions. Instead of 40 people playing, we are aiming for 400!

Thank you TJ for lighting the fire. Your enthousiasm is contagious. I am really excited about this event! If you’re in or near Ontario and want to enter a team or as an individual, please email me: FavoursForCysticFibrosis@gmail.com.

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The Secret Culture of Cystic Fibrosis

When you enter the medical community- whether as a student, a professional, or a patient- a new language opens up in front of you. You are bombarded with acronyms, short-forms, cute nicknames for scary places (“my baby’s in the ‘nick-u’ sounds so adorable until you realize that it’s short for Neonatal Intensive Care Unit), diseases and tests named after their founders (a nice ‘thanks for the discovery’ shout-out, but really not very informative), and way more Latin than you ever knew had made it into the English language. You quickly fall into this medical-ese and find yourself telling the neighbours about the ‘incredible new neb cups for alpha dornase that the RT told you about in the NICU.’ It’s not until you notice the glazed look and the longing glances they’re giving their front door that you realize how you must sound.

At first I was so proud of myself when I could easily follow the mutterings of the doctors as they did their rounds. Then it slowly dawned on me that this knowledge is also terrifying. I would love to never know what burkholderia cepacia is, or what perihilar thickening on an x-ray means. If I never heard the words ‘MRSA positive’ again, I would be ecstatic.  This medical language filled my mental world, and also shed new light on the physical world. Pseudomonas aeruginosa sounds like an action hero until it shows up in your plumbing, in your flower garden, in the bog next to your campsite. Then you realize what a villain it truly is. MRSA (methicillin-resistant staphylococcus aureus) is just a bunch of letters until you start finding it on the hospital bedside table, in the droplets from the coughing patient next to you, on the hands of your nurse. In a world full of threats to your daughter’s respiratory health, you can start to get a little anxious.

Sophia originally picked up MRSA in the NICU shortly after she was born. She carried the bacteria for over 2 years. After many attempts to break up the colony, we finally sent them packing 20 months ago. It was so liberating to give those little ‘bug-gers’ a swift kick in the behind and be done with them. We enjoyed the luxury of earlier appointment times, and shorter hospital visits. My mind wasn’t wrought with worry about what sort of damage they might be doing to Sophia’s lungs. Yesterday I got a call from our respirologist (the cystic fibrosis doctor), informing us that they were back. And so the battle begins again. When I imagine my daughter being cultured, I like to have ‘sophisticated’ in mind. Will the 0.6 micrometre bacteria survive the onslaught of mupirocin, chlorhexidine, and sulfamethoxazole/trimethoprim that we’re attacking with this time? Let’s hope not. I’m hoping to (at least temporarily) re-enter a world without cute acronyms and Latin very soon. Cross your fingers for us!


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Follow-up to Plane Trips and Cystic Fibrosis

Well, we are back home safe and sound from our great holiday adventure. We woke up at the crack of dawn on Christmas day, bleary-eyed, and frizzy-haired. We gathered up the kids, the luggage, the plane tickets, and headed to the airport with dreams of Tim Horton’s coffee on the other side of security. The kids, free of caffeine addiction, faired surprisingly well. There was a 20-foot Christmas tree near our departure gate. While the adults woke up more with each gulp of coffee, the children skipped around the Christmas tree. It was lovely in a 6am sort of way.

After struggling to position the carseats in the plane, and Clorox-ing every reachable surface, we were ready for take-off. Based on a good tip from a fellow parent of a child with cystic fibrosis, we also turned the air vents off above our heads. No need for recycled air and coughs from nearby passengers to be shared with us. Sophia enjoyed a constant stream of snacks and television. Jason struggled to know how to manage her enzymes with her constant grazing… and eventually settled with “one every 15 minutes.” Simon practiced the word “out,” annunciating very loudly and clearly for an hour, before giving up and eating some grapes. All in all, it was a good flight.

We arrived at our destination still early in the morning, thanks to the time change, and were able to complete Sophia’s chest therapy at the usual time. We had a truly enjoyable visit with family, and managed to stay infection-free the entire time… a small miracle. On the way home the adult to child ratio was decreased (2:1 on the way there, only 1:1 on the way home), but we still managed to organize ourselves moments before becoming airborne. We’ve been home for 4 days now, and still no infections have reared their ugly heads. I think our strategies were successful this time. Thank you to everyone who offered suggestions on how to make this trip a healthy one!


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Who likes my blog? (2012 Annual Report)

The WordPress.com stats helper monkeys prepared a 2012 annual report for this blog.

Here’s an excerpt:

600 people reached the top of Mt. Everest in 2012. This blog got about 3,700 views in 2012. If every person who reached the top of Mt. Everest viewed this blog, it would have taken 6 years to get that many views.

Click here to see the complete report.


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Happy Holidays

Recently my aunt went through a dramatic medical event. She experienced a “thunder clap” headache (just by the term you can imagine how that must feel), and immediately went to the ER. After a scary few hours, during which time she was sent home with Tylenol, went back to ER, was sent via ambulance to another ER 1.5 hours away, and then airlifted to a major city, she was finally diagnosed with a brain aneurysm. The neuro surgery team took her immediately into the operating room, and 6 hours later had managed to crack her head open, slow the bleeding and staple her head back together. Being no neuro surgeon myself, that’s how I imagine it all went down. I can’t even fathom how much skill and knowledge is required to perform a surgery like that.

Being from a small family, we are aware of the importance of staying together. As soon as my aunt called my mom from the ER, she had booked a flight and was on her way across the country to meet my aunt. My brother, an ER physician himself, was on the next plane to meet up with my aunt and help act as interpreter and advocate. I also managed to find childcare (thank you Jason, Elsie, Nathan, and Katie) and was on my way within a couple of days. My aunt is an incredibly strong woman, and an incredibly lucky one too. Even after getting the run-around in her home town, she still went into surgery neurologically intact. She came out of it the same way too. Nevertheless I was worried and spent my flight across the country hoping for the best. I was definitely met with the best- a smile and hug from my aunt as soon as I got to the hospital.

The next few days were spent at the hospital with my aunt and my mom. We chatted, played games, sat quietly. My aunt had good moments and not-so-good moments during that time. It’s always hard to see someone you love suffering, but we all knew that she was on the mend. I think we’ll even look back on those days with a smile… from dealing with noisy roommates (that’s putting it mildly) to dealing the cards, we were together as a family and that’s what mattered most. My aunt’s partner drove 15 hours to pick her up. He visited each day, and was ready to drive her back as soon as he got the green light from the doctors. They’ll have to take their time going home, and my aunt will need to take it easy for several weeks. Really, Auntie Janet, if you wanted to hang out with us and take a break from housework, you just had to ask!

While this might not have been the way I envisioned ‘spending the holidays with family,’ I am so happy to have had the chance to see my aunt.

Merry Christmas everyone- may you enjoy and cherish the time you spend with your families!


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Perspective

Plodding along, making the motions to get through the hours,

End of day coming none too soon. Blissful sleep and then

Repeat.

Seeking help from loved ones, getting a much-needed break.

Proper rest makes the new day brighter.

Enabling me to restart my engine and

Cherish each moment.

Thank-you family for

Inviting my kids to sleep over last night.

Very

Exciting.


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Plane Trips and Cystic Fibrosis

Our family is getting ready for another trip. This time we are flying, instead of camping (see Camping and cystic fibrosis for fun facts about that trip). While this makes life easier in some ways… i.e. we don’t have to sink Sophia’s medications to the bottom of the lake, it comes with new challenges as well.

As many of you know, airlines are notorious for ‘losing luggage.’ Seriously, where does it go? Is there an underground network of escapee suitcases, scurrying through tunnels under the airport, vying for the chance at a better life on the other side? Maybe it’s like the socks that escape from my dryer. I know they’re hanging on for dear life, praying I don’t see them tucked behind the rim, so that as soon as I turn my back they can hop to freedom. I didn’t understand how the airport staff could confuse Toronto with Calgary (even my 3-year old can tell the difference between those words) until I saw the space-saving short forms for the airports. YYZ vs YYC. What brilliant mind thought of making short forms that all look the same at a quick glance? But, I digress.

Now, losing a pair of underwear or a hairbrush is certainly annoying, but by no means catastrophic. Losing the compressor needed for life-sustaining chest therapy, or the enzymes that allow food to be digested can be a lot more serious. Therefore, traveling with someone who has cystic fibrosis means a LOT of carry-on. A quick list of what needs to be carried into the cabin with us: compressor, tubing, nebulizers, percussor, salbutamol, saline, syringes, pulmozyme (packed carefully on ice packs), enzymes, vitamins, you get the idea. This can really impact the number of novels I can carry (for anyone who’s travelled with small children on the plane, I can see your smirks). Seriously though, it’s a lot to think about, and it does impact how many children’s toys and books we can bring. And you need to leave a lot of time to go through security, because you can bet they’ll be swabbing every item in your bag (most of it’s on the ‘do not bring’ list- they make an exception for medical reasons, but they’ll still take their time ensuring you’re not a terrorist).

Another aspect of plane travel with a child who has cystic fibrosis is exposure to germs. Although we would all love to imagine that after we disembark from the plane, a crew enters wearing HAZMAT gear and sprays down every seat cushion and television, we know that doesn’t happen. Last year when I took the kids on the plane, I sanitized their hands repeatedly, but they still ended up sick. This year, I am forming a new plan that includes Clorox wipes, hand sanitizer, and forcible confinement in a carseat.

I feel like I could go on forever on this subject, but will end with one more consideration. Traveling any distance on the plane requires you to be at the airport 2 hours before flight time, you spend say 4 hours in the air, and then 1 hour getting your bags and finding your ride, and an hour on either end for travel to/from the airport. All in all it can take about 9 hours to get anywhere close. So, when do we do chest therapy? I’ve tried various combinations. One time I plugged in Sophia’s compressor while in the waiting area and did her therapy there. I got a few strange looks, but I didn’t care. Unfortunately, as Sophia gets older and is more aware of her surroundings, she may care. Another time I did it on the plane. There were definitely some worried people that time. Some passengers mistook the mist that escapes from the nebulizer as smoke. The flight attendants had their work cut out for them that day. This time I am trying something different. We will be on the earliest flight of the day, and will spend most of the time traveling when Sophia should still be sleeping. We will arrive at our destination in the morning, and so I will do her first round of therapy when we get there. No scenario is ideal. I’m sure I will learn some more tricks along the way.

Even with all that in mind, I am super-excited to go on a trip. I know Sophia is too. She keeps asking when we’re going on the plane. All I can tell her is that “it’s not close enough to start counting down ‘sleeps’ yet.”