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Back to School with CFBack to School with CF – A Parent’s Advice

When our son, Beckett, was diagnosed with Cystic Fibrosis 12 days after birth our world turned upside down.  We cried, we prayed, we yelled, we begged, we researched like crazy…but most importantly we rose up.  Much of what causes fear in life is the unknown.  Cystic Fibrosis couldn’t have been more foreign to us; we came from healthy families and had another son gliding through his toddler years.  We decided to face this disease head on and fight the fight by not letting CF define our family, but rather Beckett defining CF.

Trust me, I realize the anxiety that comes with being a parent of a child with CF; every cough, runny nose, throat clearing can set you off and make you jump to horrifying conclusions.  But let’s put the anxiety aside for a minute.  Be an advocate for your child.  Be confident that you are doing all that needs to be done on a daily basis.  Our crazy-skateboarding-soccer playing-jog-a-thon winning 6 year old boy doesn’t know a day without treatment but he also doesn’t know any different.

We trust in our healthcare provider, team and stick to our routine.  When you do this, your child will be as strong as possible and ready to fight what needs to be fought with proper care.  I’m not saying it’s easy; there will be battles, long days, bronchoscopies, doctor visits, more treatments… but what I am saying is to be confident in those things you can control.  Don’t settle for a life attached to a machine.  We all know this disease can rear a mind of its own at times, but there is also much of Cystic Fibrosis we can have more control over than you might realize.  Cliché I know, but knowledge is power.  Become a student of this disease rather than just a parent of a patient.

Going back to school causes a whole bunch of emotions that CF parents deal with.  Granted, I have them too.  But, I also feel they have dissipated with my experience and knowledge.  And, after 2 years of preschool – let’s face it…we are both ready for Kindergarten!

A few little tricks I have found successful are:

– Saline Spray… give a little spray up each nostril right before you give your last minute hugs and the old lunchbox hand off.  Ask your child’s teacher to do the same right after lunch (usually half way through the day).  Keeping the sinus moist and full of Saline makes bacteria difficult to manifest.

– Can’t say enough about Pocket-Sized Sanitizers.  They are a must.  Even though sanitizer is my third arm, it’s more important to have thorough hand washing with warm water and soap for 30 seconds (we usually sing the ABCs but considering he told me recently that’s a “baby” song… I’m in search of another catchy jam – if you got one post it here)!

– Sinus Rinses!!  …it really is the best way to wipe those sticky, gooby, dirty germs out after a day of finger painting, sandbox throwing and most likely nose picking (you can’t control everything!!).  Since most kids with CF have sinus challenges, I suggest buying in bulk.  Another tip: instead of 1 packet, try using 2 to create a more concentrated saline needed for most CFers.

– Pocket Sized Disposable Pill Bags. These puppies are awesome.  We get ours at CVS but you can get them anywhere (including AmazonSmile).  Considering I don’t always trust that others are washing their hands as thoroughly as I might have (wink wink), this is the best way to skip that added stressor.  They simply open up the bag and use it to directly take the enzymes.  No touching; no worries.  I can pack a week’s worth of snack and lunch labeled baggies in less than 2 minutes.  You can either drop off with the nurse or teacher depending on your school’s regulations.  Some allow the child to just put it in their lunch box daily.  And oh yes, remember to have a few extras stashed with the school nurse, teacher, lunch lady, janitor… you get the point.

– Neosporin.  What doesn’t this magic do?  It’s wonderful at preventing and fighting infection.  I use a little dab on the end of a Q-tip and wipe the inside of each nostril.  I do this a few times a week (more often if I know of an event, bus ride, field trip, flight, etc.) to help combat things I don’t like living in his sinuses.

– Confidence is vital!  I don’t know about you, but when I am confident in something it silences fear.  There is an amazing book called Who I Am.  I have been reading Beckett this book for 3 years.  He LOVES it.  So much so that he brings it with him the first day of school.  He asks the teacher to read it to the class – I have also prompted the teacher this will be happening…  It makes him feel comfortable (and I think kinda cool) that a book is about him.  It clears up questions young kids might have when he is taking enzymes or nose spray or even when he wore a mask on their Farm Field trip last year.  Proven as much, not one kid said anything to him.  It was just what Beckett does, no big deal.  Check it out, read it, get it: http://issuu.com/brentrg/docs/pulmozyme_story_book

In closing, I think the best thing to remember when going back to school is this: The child is excited.  The first day of school is like winning the lottery to them!  They aren’t thinking of all the extras CF is hurling their way.  They probably don’t even know you have most likely met with their teachers, PE instructors, principal, teacher’s aides, or even that you are reading this entry… They just know they have a really cool new lunch box and a parent that loves them dearly.  Be excited for them, too!  I promise, you’ll make it – and they will thank you for it!

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