Tuesday, July 19, 2016

No vacation for CF

Oh Cystic Fibrosis...you won't let us forget about you, will you?

Summer is here and we are reminded of how quickly time flies when you are having fun!  Yet, we are also reminded that Cystic Fibrosis does not take a va-cay...like...ever.

How do you forget about Cystic Fibrosis and the lurking fear of how it can bring drastic changes to your kid's health at a moments notice?  My answer; you don't ever forget.  How can you forget that? Instead, choose to fill your days with silliness that may involve rolling down the car windows and screaming Justin Timberlake's latest catchy tune.  Create quiet moments together where you snuggle to read a book, watch a movie, color, or chat about your favorite moment you shared that day.  You keep everyone busy with field trips.  Did you know that grocery shopping counts as a field trip?  It can be more like trying to herd cats, but if you go to the Dekalb Farmer's Market it is a field trip for EVERYONE! My favorite distraction in life with Cystic Fibrosis is the search for ways to keep daily health care fun and exciting so compliance is at an all time high every moment of everyday...even summer days.

Our latest enhancement to Elena's daily routine has been fun for ALL OF US!  It involves her enzymes. Her enzyme pills must be taken anytime she eats to help replace the pancreatic enzymes that can not escape from her very sticky coated pancreas.  She takes 15 plus enzymes a day (not included her 15 plus various other pills).  Where do we store all these?  Pill bottles, you say? That wouldn't be much fun, but THIS is!

Elena had a CF doc appointment today.  We entered the office and we were celebrated by all of the staff. They give us kuddos for our parenting, cheers for each of our unique kiddos, and they put their ever-lovin'-giant-effort into the care of our child, Elena.  (And they also see Ev and Em for breathing issues and asthma). They are family! On top of that, they keep us entertained with their humor and joy of living this life. These people are amazing, and did I mention that Dr. Larry has dyed his hair teal?

Elena's lung function went down 1% to 81%.  Funny how time changes you.  That number use to make us sick to our stomach with fear.  Now we are happy it is no longer in the 70's.  She has had a cough and congestion that antibiotics won't get rid of.  She will try another antibiotic along with the one she is currently taking.  Elena will start back on Orkambi tonight after a several month break due to the effect it had on her kidneys.  She will take a drug to help counteract that kidney problem. She will add more to her already full plate of meds and treatments.  I know... she IS a rockstar.
Yes, Cystic Fibrosis. We know you are always there.  Reminders of how much you suck is not necessary, thank you very much. So, if you wouldn't mind giving my kid a break so we can continue to celebrate our crazy, exciting, Harry Potter themed camp creating, pool swimming, friend playing, Pokemon chasing, backyard shenanigan making, and overall pretty freakin' amazing summer...we would greatly appreciate it.

Me, the Mother of E's who doesn't have time for CF bullying my kid

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