It's Time to F.R.O.G.

We've made it past the one month mark. The longest month of my life. The month consisted of approximately 60--- 1 hour 15 minute treatments. Some done willingly....others not so willingly. Two trips to KC. Endless hours on the phone trying to get prescriptions. Some crappy news. Some good news. Lots of ups and downs.... but we survived to tell about it.

                                     (bless her heart, she couldn't stay awake for this treatment)

When we went through the scare with Kenton and I had done my research, the reoccurring theme I read about CF was that it was a very time consuming disease.. and a costly one. We've learned, oh so quickly how true it is.

Two days after my last blog, we did get Kambree's high dollar medicine (Tobi)....and by the grace of God, we didn't have to pay a dime for it. They agreed to a temporary supply---28 days, for free. Fast forward to today... I got a call this morning that her infections they swabbed for last week were GONE! No sign of them...... can I get an AMEN?!!? Really?? That was after only having been on that prescription for 1 week. Soooooo, for now, we continue to use it.... we go back on June 23rd... and they will re-test. If it's gone.... we will no longer need the Tobi for now...and we will get to.go down to ONCE A DAY treatments. (Can I get a LOUDER AMEN?!? :)) I mean... I can't express how much that would truly help our crazy world. By my math, it would gift us back about 35 hours a month. Obviously, you guys are some amazing prayer warriors....would you continue to pray specifically that the infection is still gone??

At that appointment, there was more good news! Her lung function test improved drastically. The respiratory therapist was giggling when she told me, so blown away by the improvement. She walked us back to the room where the doctor was....and he had the same reaction. Her score went from 65 (pretty much failing miserably) to 105 (average range). We were so very relieved by this... it was so good to know that the course of action we are taking, is working!

So you want some more, GREAT news? At that appointment, it was decided it was time for "The Vest". This is a vest that she will wear for up to an hour a day, and it basically shakes her so much it loosens mucus---it is part of the necessary airway clearance.  Price tag on this vest is $15,000.... we buckled in for what expected to be another drawn out battle.... but we were pleasantly surprised. Our insurance company covered $13,200 of it.... and the company that makes the vest wrote the rest off for us.... because of our prescription situation. How incredible is that?? The vest was delivered at 4:30 today.... and we will have someone out in the next few days to train us on it! It was quick...and painless...and completely covered by our insurance....it feels so good to know that we have the right equipment in place to take great care of our sweetie!

This string of positives was just what I needed. It rejuvenated my hope. We have been so lifted up and encouraged by friends and family....every one of you that has brought us a meal, sent us  sweet cards.... gift cards, mowed our yard while we were in KC, consistently prayed for us.... you all inspire me to want to be a better person... to have even more empathy.... to love bigger.... to pray more boldly.

I was really struggling last week.... before the good news started rolling in. I could feel the stress taking a toll on my body, my mood..... the fact that the treatments are never ending was haunting me.... not just for me... but for my sweet Kambree. Jason and I can take turns giving them... when we get to escape town for a few days, we get a break... she never gets a break....and my heart was very burdened by that for my child. 

We started to feel that Kambree senses the severity of her disease, though she has never really asked us too many questions.  On the way home from her appointment, she said.... "Mom and Dad.... what happens if I die before you do. When I get to heaven, will I know anyone? Will I be lonely? Who will take care of me?" I was very thankful to be in the front seat where she couldn't see the tears streaming down my face... and more thankful for a strong husband, who told her none of us know when we will go to heaven... but we do know that heaven is an amazing place....there are no tears of sadness...so she would surely not be sad or lonely. He also reminded her that she has a Grandpa Kent, and many Great Grandparents that would certainly be looking out for her.

I will never forget that moment for as long as I live. No parent should ever have to bury their child....but so many do. I can't even comprehend the anguish.

While I still have never wrestled with anger towards God.... I will admit, I was wrestling with the feelings that maybe God was mad at me.  I know this goes against everything I KNOW to be true about our heavenly father...but I couldn't get the thought of my mind. Why us? Why MY babies? Why are two of my children going to have to work so hard in life?

And then I went to the mailbox.... and got the most amazing gift. A gift from a friend I haven't seen in years.... and have had very little contact with since they relocated to California. Facebook has kept us in contact to some degree... still, she took time to encourage me....and it was JUST what I needed.
In the card she reminded me that in every situation, no matter how hard it is.... We are to "Fully Rely On God"! "FROG".  She sent me this glow in the dark frog to hang by my nightstand, so that when the middle of the night worrying took over... I'd have a visual reminder to Fully Rely On God!

 

The part that really blew me away, is that she wrote that God had laid a verse on her heart, and at the time she wasn't sure why.... now she thinks it was to share with me. The verse was....

John 9:3  Jesus said, "Neither his mother, nor his father had sinned. This happened so that the work of God could be seen in him."

That verse, mailed to me in a card from California, was EXACTLY the reminder that I needed. God was speaking to me, through an old friend. God is not angry with me. We haven't done anything to bring this on..... but he uses hard circumstances to show his glory in mighty ways...and in our situation, we've already seen that to be true. We will see the hand of God played out in this situation.... no matter how many ups and downs we go through in the coming years. We will praise him in ALL of his GLORY. We continue to pray boldly that he heal her....and we will stay faithful to him as his works unfold...however they unfold.

Thank you all so very much for following along in our journey!
XOXO

Deanna