The other day a friend made the comment that our dealing with diabetes seems like it has been harder than the adjustment to CF.  She was confused a bit as to why that was, and I couldn’t really explain it to her. But,  I have had A LOT OF TIME to reflect the last few days, andI have been able to articulate a few reasons why I think the adjustment to diabetes has thrown us a bit.  For one…we are in a time in life LIKE NO OTHER TIME any of us have ever experienced with the coronavirus and quarantine time.  That sounds strange, but having the weight of the world’s situation is ..read more

Well this has been an interesting couple of weeks to deal with the diabetes in the midst of a worldwide pandemic.  But, we are thankful and grateful for the gifts and love the Lord has bestowed upon us in so many ways. I just needed to write about the high’s and lows of the last few weeks for my own sanity saver. Crazy that Rachel currently has 20 MEDICATIONS a day that she takes after we added in the two types of insulin. PRAISE the Lord for medication. But our already full medicine cabinet just had an increase of insulin pens, alcohol wipes, ketone strips, boxes of lancets, boxes of ne ..read more

Well, I feel like it has again been way too long since I have updated this blog.  Life has been crazy busy keeping up with my five precious kids.  However, like the entire world, life came to a quick “Pause” as my six year old put it.  Everything has slowed to a grinding halt since the virus. We have been self-quarantining for several weeks now (20 days to be exact).  Except for Rachel’s CF appointment several weeks ago (where they specifically asked us to come in the day before the appointment only to tell us the morning of the appointment that the CFF has not said to cancel all appointments ..read more

Well yesterday was officially 4 weeks on the new medication.  All I can say is: GOD IS GOOD!!! While Rachel still struggles with side effects (I will write about in a minute).  SHE HAS DONE AMAZING!! The girls have been playing basketball for about a month now (she started the same week she started the new med).  On Tuesday night we were doing some conditioning at the end of the practice and the entire team was struggling with exhaustion.  Rachel was tired, but had a smile on her face.  When we got in the car, she made a comment that BLESSED my socks off.  She said, “Mom I was watching everyon ..read more

So, Rachel has now been on Trikafta one full week.  It feels a bit surreal in several ways. We are beyond thankful for this beautiful gift from the Lord!  Daily we are in wonder and amazement that something this wonderful has come to help us combat Cystic Fibrosis. There have been so many incredible emotions throughout this week.  Wonder, gratitude, lots of tears thinking about how things are going to be different from this moment…and a little fear in the unknown.  I am grateful that there have been some amazing warriors that have gone before to pave the way and give us a bit of comfort as we ..read more

I don’t even know what to say other than WOW!!  This has been an amazing week around our house. Two days ago we heard news that the FDA approved the much longed for, and awaited new medication, Trikaftor!  This is the first to actually treat the underlying cause of Cystic Fibrosis in 90%!!  We are beyond excited.  OVERWHELMED! TEARS OF JOY!!! This is something that we have worked for, prayed for, and yearned for now for over 14 years.  While it is not a cure, it is the closest thing that we have ever had to a medication to CHANGE the direction of cf.  This medication, should it work in our Rac ..read more

Rachel had her quarterly check up today.  It was a pretty decent one. Not great, but not terrible…which makes it just okay.  Her weight was down 5 lbs., and her lung percentage was down 6%.  But other than that, her X-ray’s looked normal…HUGE PRAISE, and she sounded good (although that never makes me feel better as our favorite dr. said you can’t necessarily hear when things are bad until they are REALLY bad.  Also need to follow up with endocrine for some strange hormone issues. But…we are definitely thankful for the “not too bad” day at the hospital. And a bonus, we were only there for 3 hou ..read more

Thankful for the many that were there for the picture. There were about 20+ people that didn’t get in the picture, BUT KNOW we KNOW and love each one of you!! The walk was over a full week ago.  Crazy how fast time goes sometimes in this life.  Days are full, busy, and just don’t stop! Thankful for that, but it is amazing some times to look back on a day, or a week, or even a year and realize how very fast it goes when reflecting. Anyway, last Saturday COULD NOT have been more perfect. The day before the weather forecast was threatening to rain the ENTIRE DAY! However we woke up with rain pon ..read more

WE ARE SO EXCITED TO WALK TOMORROW!!! May is always a busy month for everyone with a  thousand graduations and weddings, and activities galore.  Every year I am amazed and overwhelmed that people would take the time to come spend a couple of hours with us walking to raise awareness and help us FIGHT for our girl’s life and FUTURE!!! INCREDIBLE!!! It is suppose to be rainy, but hopefully warm this year.  In the thirteen years we have walked, we have now had one day where it was nice weather.  JUST ONE!!  All of the other ones have been rainy, most FREEZING COLD with the rain, and one where it w ..read more

I swear I have so many blog posts that I write…only they are all in my head.  It is such a challenge to get these thoughts to my computer. =( I was talking with my kids this week and told them of how I LOVED to write and how helpful it is to stop my heart and mind and ponder and reflect on this life and the beauty that it beholds.  And yet, HOW CRAZY busy life seems these days with five beautiful children-going five different places most times.  Writing and blogging just falls to the back of the priority list.  HOWEVER, this morning I woke up with a charge to write.  In our homeschooling journ ..read more