I'm generally a very positive person, so when those feelings that aren't so positive start creeping in, I don't like the me I see. Those moments when I hear other people's problems, and find myself longing for my life to return to a time, when my problems were similarly insignificant. Those fleeting moments when I let myself feel sorry for myself for what my daily grind looks like--and how much of our family time, is eaten up with treatments. Let me be specific. In the last 77 days, we've spent approximately 154 hours doing treatments. That is over 6 complete days of my daughter's life, that have been spent hooked up to machines---I don't even want to think about what this will equate to after a year, or 5 or 10. Ugh! Now I'm wallowing. Double Ugh!
The positive news.... no, the GREAT news... is that those treatments are working! Since I've last blogged, we had a return visit to Children's Mercy, and once again, they were thrilled with her progress. Her lung infections have continued to stay away, and her pulmonary function test was even higher! This was such great news..... and further confirmation to us, that our sweet baby is a strong girl, and in many ways, a healthy girl. Things could be much worse. Much, much worse. And so despite, the frustrations of adapting to our new routine, the rushed mornings, and evening fun cut short... we really are thankful for the treatments. They are something tangible we can do, twice a day, to fight this nasty disease. How can we not be thankful for that? We do our best to make the most of the time she is doing treatments.... sit and snuggle with a show...sometimes even with Papa D.
We make rainbow loom bracelets for friends and family. We've played some pretty mean games of tic tac toe.... and worked a few puzzles also. So MAYBE, the better outlook on these treatments is that they have helped us to chisel out time in our busy lives.... to love on her... to give her special attention...and to make memories! THAT outlook feels much better!
More happy news in our world. My son has made INCREDIBLE progress this summer! He is truly amazing us daily. Things we've watched him struggle to do for years now, are starting to come along. He is asking me to "do school" with him daily.... and he is soaking up so much! He is such a joy! All boy... a lot of work.... but such a joy!
Our 3 year old, Kreslee, hasn't gotten much love on here, but let me tell you... she is a HOOT! Keeps us laughing every single day....and you pretty much haven't lived if you have heard her say, "Dat's Wei-wd". From the second she wakes up, til the time she crashes, she is the life of the party. A big, big presence in this family. This pic pretty much sums her personality up! She'd wear those red boots 24/7 if she had her way!
Really....we are truly, truly blessed. Our children bring us such joy.....and it is our prayer and desire as we raise them, that they will bring joy to other people all throughout their lives. That they will be respectful. Think of others first....and most of all LOVE others.... as Christ loves us--despite all of our imperfections!
This blog I'm going to talk about some big numbers.....the first one.. is 25,000. That's the number of views this blog has had. Mind blowing really. If even just a portion of those views, have come with prayers lifted up on our behalf, it comes as no surprise to me that Kambree's progress has been so remarkable thus far! With that....here I am again... asking for help with a BIG prayer need....involving some BIG NUMBERS. :/
As I've said before, at this time, we have no prescription coverage for Kambree. Great medical coverage otherwise (our insurance paid 100% of her $15,000 vest--praise GOD)..... just nothing for prescriptions. The costs for her needed prescriptions are over $3200.00 each month. If she ends up needing the TOBI again, our month total will be over $10,000.00. I have spent hours and hours on the phone with different "patient assistance" programs.... tried every number I can find or have been given, but the outcome is always the same. We make too much money for assistance. They have a flat dollar amount drawn, that you can't exceed.... and I have yet to find anyone that will make an exception, and factor in the COST of the prescription in to the equation. I received a call last week that left me very hopeful..... a gal who said it was her job to handle all of this for me.... and she was so sorry for the hoops I've been having to jump through to secure medicine for my daughter. I finally thought we were getting somewhere (could have kissed her through the phone), only to be greeted with an email the next day...that she was no longer legally able to help me, due to our income. She sent me a long list of links to try on my own, and unfortunately, all of them are the same. They are there to help low income families.... and since we are not classified as that.... they can't help. I can honestly say, I've never felt more defeated in my life. Frustrated. Sometimes angry. There's nothing "fair" about it.... but it is what it is. I have a few more leads, and am waiting on some return calls from several patient assistance programs. Will you pray for a miracle with me? My hope in myself being able to beg or plea our way in to some price reduction is dwindling.... BUT my hope in the ONE I know can fix this is as strong as ever. I have a true peace that Kambree will continue to have the medicine she needs each month, that God will continue to provide as he has so far.... and I'm literally counting down the days for the enrollment period to open on an additional insurance plan, so we can put the financial stresses of this disease behind us!
The Lord continues to drop little doses of perspective in our lives. :) The day after we received Kambree's diagnosis... our kids got in to some HOT PINK acrylic paint.... and spilled it on the carpet near our entry way, you know in a perfectly discreet place! ;) I had been running errands, and came home to the mess. I was quite surprised to find my husband, as cool as a cucumber... and he said... "It's carpet!" We actually stood there and chuckled for a moment. Our problems were far larger than any material things...how quickly our perspectives can change. That pink stain is still there. I'm sure there is some Pinterest trick out there, or an amazing carpet cleaning business in town that could remove it for us, but for now, it is serving as a great reminder to us about what the important things are in life. The important things aren't things..... certainly not carpet. It's the PEOPLE in our lives.... and we are filled with many amazing and supportive friends and family who reach out to us daily! It's the MOMENTS in our lives..... and we have many that are spent laughing, and loving, and making memories. It's the FAITH and HOPE in our lives, that helps us keep on going, keep on loving, keep on living. It's our HEAVENLY FATHER reminding us that he loves her more. That his plans are to prosper her.... and to give her a bright future....and it's the HOLY SPIRIT, living inside us, stirring up scripture I memorized as a child....to bring me comfort, many, many years later.
Trust in the Lord with all your heart, and lean not on your own understanding. In all your ways acknowledge him, and he will direct your path. Proverbs 3:5-6
I'm trusting... He's directing! :)
My sweet husband surprised me with a slideshow he put together. I'm a sucker for pictures....and pictures set to music.... is just kind of the ultimate! ;) If you have a few minutes.... check out "77 Days in 3 Minutes."
https://www.youtube.com/watch?v=bjYRroCBKcA
As always...thank you for following The Whole White World!
XOXO
