Wonderfully Made

If you follow my sister on Facebook, this blog is probably coming as no surprise to you.

A quick recap....for those that aren't sure what I'm taking about.

Today, what should have been a fun lunch out after church with friends and family, took an abrupt turn, when my son got a little too loud for some fellow patrons in the restaurant.

It wasn't a meltdown. It was a loud, and awkward exclamation of excitement about an idea he had.... one that we were in the process of trying to control when a couple of adults, not with our party.... decided to yell, "That's enough!" and "Knock it off!" 

Since my husband was already on his way over to help my son get control, he stopped at their table, leaned in and quietly (I couldn't even hear what he said) told them, that our son has Autism and we are doing the best that we can.

Then he took, a now crying, Kenton out to the car.... neither finished their lunch. My sister, after some quiet negotiating with me, decided she wanted to make sure the table really understood, to hopefully prevent similar situations in the future (how blessed am I to have her?!)..... so she nicely went over, and said "I wanted to make sure that you understood what my brother-in-law was trying to tell you.  My nephew isn't unruly, he has parents that love him and are working very hard with him... but he has Autism, and from time to time, has outbursts like that."

His response.... "How were we supposed to know that? They should put up a sign or something... or alert the people sitting by them in restaurants."

Really? This still leaves me speechless. But more than speechless, it just makes me sad. Honest to goodness.... that was my emotion after today. Not angry. Not ready to go "Mama-Bear" (though other days that may have been the case---today's sermon was on self-control.... no coincidence).. today I was just sad.

This man, is probably a wonderful person... with grandchildren that he loves---and I betcha they love him a whole lot too. I will happily give him the benefit of the doubt that he is a whole-lotta good.... but made a bad decision... and then had too much pride to admit it. Honestly, I'm sure there have been times in my life, where I may have been wrong and too prideful to back down. I can't think of one.. haha, but surely it's happened! Perhaps Jason could help with a few examples...but he's asleep, so we'll move on! ;)

I wished that they would have had grace for my son, and given us the benefit of the doubt (my guess is moving forward they will).... but regardless, I am willing to give them grace.... and I am willing to give them the benefit of the doubt.

We can all use the reminder to extend grace to people. To not make assumptions when we really don't know the facts. When we see an "unruly" child, we can pray for the parents, maybe shoot them a smile, instead of a glare.... and give them the benefit of the doubt that they are doing the best that they can. If they aren't... I'm pretty sure a disapproving look, groan, or eye roll, won't change that anyway.
The folks involved today aren't the first (likely good people) to try to make a point with huffs and puffs...or outbursts of their own... and unfortunately, I know it won't be the last.

So why am I so sad?

I'm sad because when some people look at my son.. they see an unruly, disobedient child, not fit for public outings. What I see, is a little boy that gets so excited in some environments that he sometimes loses control. I see a child, who is easily over-stimulated.... and restaurants, stores, and certain environments bring out certain self-control issues.

I'm sad because when some people are around my son.... all they hear, is an annoying child, with an often times high pitched voice... that repeats himself frequently.
What I hear.... is amazing progress in his communication skills. I hear a little boy, trying to get his thoughts from his brain to his mouth.... and repeating himself until the next phrase comes to him. It's music to my ears....and I will patiently listen to him as long as I need to, soaking in the communication.

I'm sad because often times, children don't know what to make of my son. So he watches them play together, and he is by himself. When he tries to involve himself, it often doesn't go well...so his father and I have to be on constant standby, ready to intervene when needed. We literally take turns being "on duty". He has his own ideas about how things should be done... and in his world, this is very rigid. He is blessed with a handful of dear friends that "get him".... and those friends mean more to us than they will ever know.

I'm sad, because I truly feel sorry for people that don't take the time to get know him. I've said it before...and I'll say it again, and again. This boy, melts my heart.... literally. I'd squeeze him all day long if I could. He has the BIGGEST heart. He is always thinking of his sisters before himself. If he gets to pick a lollipop after the doctors office, or after getting a haircut, he always requests 3....and tells them all about his sisters. If Jason wants to take him for some daddy/son time... we have to make sure he knows the girls will be having fun too.... or he will insist they come along. He is so very smart. He may struggle expressing all that he knows, but if you spend time with him, working with him, you see quickly, just how smart he is!  He may struggle to look in your eyes when you talk to him.... but in those moments when he does.... you see just how sweet and innocent he is. He has a sense of humor that we are seeing more and more glimpses of! He is witty. He's clever. He gives the best hugs. He loves his FAMILY. He squeals with delight when we tell him he will be seeing his cousins, aunts/uncles, or grandparents. He is connecting with people....and those that connect back... know exactly what I mean... he steals your heart!

No way around it, it just plain stinks to watch your child have to work so hard in life....to overcome so many things, not the least of which are people that don't understand him.... but here is what I keep coming back to.

Psalm 139:13-14
For You formed my inward parts; You wove me in my mother's womb. I will give thanks to You, for I am fearfully and WONDERFULLY MADE; Wonderful are Your works.

(secret's out, not really a blonde)

This is true for everyone on this planet.
It's certainly true for my son. He is exactly the child he was created to be...and it was my womb he was grown in..... and I consider myself the LUCKIEST momma in the world to call him mine.

It's a lot of work. There are many hard days. There are shopping trips that leave me pulling out my hair.... there are reports from school that rip my heart out. Things that should be simple tasks can take hours. There are unwanted glares and stares, and huffs and puffs..... but when it's all said and done... it's THEM that I feel sorry for..... not me, not my son! He is wonderfully made. He is a blessing. He is a gift. He is going to keep on making progress. He is going to thrive in life. He's going to make some lucky lady an amazing husband someday.... and end up being a father that will do anything for his kids.

He's taught me so much about life, in just the short 5 years that I've been his mommy.... and I look forward to many, many more lessons from him!

This is what wonderfully made looks like!

This is what a blessed mama looks like!

This is just one captured squeeze of many, that take place every single day!

 

 

(For those hoping for an update on Kambree....she is doing well. She has had many struggles emotionally, but we are sorting through them. There is no happy update on our prescription issues.... and we are more than eager for the enrollment period to open, so we can get her additional insurance coverage. Pray for her spirits! Pray that she can live in the  now... and not let her mind wander to the laters....pray that her mommy can do that too!)

 

Thank you for following The Whole White World!

XOXO

 

 



  

Big Numbers & Pink Stains

Has it really been a month since I've blogged? I've started to several times.... but my mind has been such a whirlwind of ups and downs, I've kind of been lost as to where to even start!

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

New Perspective

One year ago, we went out to dinner to celebrate my mother-in-laws birthday. At that dinner, she had me read aloud a poem..... the poem was an invitation for us all to join her in the Bahamas for her following year's birthday. (she's pretty awesome)

It's amazing how quickly time can fly. When we first learned of our trip that night... we had no autism diagnosis for my son.... his asthma/CF worries had not yet begun..... and we would have told you our then 6 year old, was the healthiest child on the planet. That's a lot of changes... in ONE year.

It's been a whirlwind, to say the least..... but the week away was perfectly timed. We had some concerns about whether or not we would be able to go, but once the word came that Kambree's infections had cleared, and our family back home didn't bat an eye at taking over all of her care while we were away (they're pretty darn awesome too).... we decided we could really use the week away.

It was pretty wonderful. Waking up to this view.

Being silly on the beaches together.

 

And soaking in some of God's most amazing handiwork.

 





I got some very good advice from an old friend shortly after her diagnosis....he warned us of how stressful a child's illness can be on a marriage....and urged us to really guard our marriage.....take time for each other.... don't let this disease define your lives...don't let it destroy other parts of your life.

We have certainly seen the time constraint.... and the pull in different directions. We laugh about our tag team efforts... but really, staying connected takes a lot of work. Making sure we aren't just two ships passing... who are meeting all of our children's needs.... all the while losing who we are as a couple. We are very mindful of this... and are as in love today as the day we said "I do", regardless of all life has thrown at us.... and for that, I am truly thankful!

Our children NEED us to be in love. The security that brings a child.... the peace of mind that brings a child...is priceless. When times are rushed and chaotic.... and we feel inclined to be barky.... or snarky...we have to remember that how we interact with each other, as parents, says so much to those little eyes and ears who are always watching and listening. We see them beam and giggle when we flirt with each other--or sneak a quick kiss (they're smiling through the ewwwwws).... and I know, our tense interactions with each other, crushes their spirits and adds stress on them as well. This parenting thing ain't easy... but few things that are great are!!

I didn't intend to go into all of that.... guess it was on my mind. I needed the reminder...maybe some of you did to?

So now, 6 weeks in to this journey.... I've got a lot on my mind...you're shocked, right? At this point, I feel like the nature of Cystic Fibrosis, has exasperated several qualities in me that I've never liked.

First.... my lack of organization. Mentally I do a great job of keeping myself organized... I don't miss appointments or lose things... BUT my life, in general lacks organization. CF is going to force me to be more organized. All of the equipment for therapies needed a "home"---and I am happy to report I have a cleaned out cabinet that is our CF hub. We are not tripping on chords, or living with counters covered in medicine. It gets put away twice a day...... except for the vest. That is so large, we have yet to determine exactly what we will do with that. For now, it's hanging out in the kitchen by the table.

Time management! Never been a strong point of mine.... and this has rocked our worlds in the biggest way. Since we replaced the "pickle" for airway clearance method, with the vest.... the treatments are taking right at an hour each morning.....and each night. I realize that may not sound like much.... but we STILL do not have this down. Mornings are crazy getting Kenton to therapies....or other various things.... so stopping for an hour to get her treatment done has made things interesting to say the least. Her second treatments are going late in to the night many nights....because dinner, down time with daddy, and baths will usually run us to 9:00.... and then we still have an hour long treatment to get in. If we have plans of any sort, it gets late very quickly. The fun doesn't stop there though... we need to wash the equipment after each use....and sterilize it each night. There is a constant "to-do" list running through my head.

So my FAITH isn't the only thing that will be improved through this journey. We will no doubt grow personally and improve our weaknesses. I'm sure someday soon, this will become completely second nature to us.... we will find routines that work....and hopefully see other areas in our lives improved as well.

So here's the BIGGIE that it has exposed. My incessant worrying. I'm the girl that can figure out any bizarre scenario of how life COULD go wrong... and then worry about it. I'm the girl that checks to see if her alarm clock is set for AM instead of PM-- 2 or 3 times.... A NIGHT. I'm the girl that won't let her 7 year old play in the front yard, unless I am standing outside with her. I know it's wrong. I know we are to worry about nothing, and pray about everything. I've tried to stop... and I think, over time, that this diagnosis is going to teach me to live in the moment.....because worry will destroy me if I don't control it.... I will be overtaken with fear if I allow myself to worry about how all of this ends. I will learn to focus on the present and relish our happy times...if I don't.... I will miss out on the happy times---her healthiest times. I will learn to live in the moment because I have a beautiful daughter that is going to HAVE to live life one day at a time.... one breath at a time. I absolutely dread the day, that she realizes that this disease will likely take her life--and that Cystic Fibrosis doesn't just mean she has "special lungs". I dread the day her questions progress from, "Will I always have Cystic Fibrosis?" to "Will I die from Cystic Fibrosis?"----worse yet, "How do you die from Cystic Fibrosis?" These are questions I WISH I didn't know the answer to. I am already praying now for the right words to come in those moments...and praying for her sweet spirit to have an amazing inner strength and a will to defy the odds..... and the sweetest appreciation for every day of life that she is granted. Shouldn't we all live that way?!

 I want her to live life to the fullest and never be hindered by fear or worry. I want her to dream about being a teacher or recording artist.... a wife and some day a mommy.... without the black cloud of "what ifs" covering it all up.

We've been served quite a few lemons here lately... but darn it.... we are going to make lemonade...and it's going to taste as good a Mama D's!!

I had a revelation right before we left town....a nice positive dose of perspective---that I will be clinging to in every high-stress, hectic moment. Our daughter has a nasty disease. A nasty, time-consuming disease. A nasty, time-consuming, and costly disease.... BUT...she has a disease that comes with a plan of attack! Every expensive prescription, and hour long treatment, is improving her quality of life--it's helping to fight off sticky mucous that wants to destroy the organs in her body...we got a heartbreaking diagnosis.... but we get to FIGHT it. There are many, many, many diseases out there, that DON'T come with a plan of attack. There is no path to fight it....or delay it.... and you sit by and helplessly watch your loved ones suffer.

So tonight... I am thankful for never-ending treatments.... and monthly prescriptions that cost the same as a nice used car. I'm thankful for the hope that they bring to her future... to our family's future. I'm thankful for the opportunity to be a voice for Cystic Fibrosis...and to raise awareness for the cause. I'm thankful for the opportunity to raise funds to help find a cure....and mostly thankful to serve a God who hears our prayers......and he'll be getting many from me.... asking him to wow this world....and unveil a cure.

Pretty sure that Kambree has a Grandpa Kent and four Great-Grandparents up in heaven---whispering in Jesus' ear... petitioning for the same!

As always.... love you ALL! Thank you for following our journey.

(Tic Tac Toe with mom, makes treatments so much better!)

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

Celebrating the Good, In the Midst of the Bad

This little girl is strong! She captured our hearts from the second we saw those two pink lines.... and she continues to every single day. She's hilarious... a HUGE personality.... and she's going to do something BIG in the world.... no doubt about it!

 

 

I find it crazy that I draw strength from her strength.... and I find positivity in our new life of never-ending treatments, in HER positivity about these treatments....and even though every time I look in those big brown eyes.... I have to force myself to keep it together.... I do it (mostly).... for her! She needs a strong mommy right now...so that's what she'll get!

 

It is still definitely sinking in....that these treatments are a permanent fixture for us....and for her. Typically with illness, your treatments are a few weeks, months maybe.... it really is hard to grasp the reality that we are in.

 

We are encouraged by the progress we have seen in her cough and other symptoms.... but I am very burdened and disappointed to report that the $7000 "super drug" is so entangled in red tape... that my sweetie, now two weeks later, has not received it. Every day it's a new hoop to jump through....and it's left me feeling more helpless than I have ever felt before. I've always been of the mindset that "nice wins"....and each day that I've called, I've tried to kill them with kindness, thinking somehow this might move things along and help us get her this drug... unfortunately, after two weeks....today I had to let my desperation be known (in the most polite way I knew how) and I THINK (fingers crossed... toes too!) that I may have gotten somewhere!

 

Please, please, please pray with me that we get this medicine WEDNESDAY! They are projecting that as the date! I'm not sure how much longer we can wait otherwise!

 

If I could turn back the hands of time, I would a million times! I thought long and hard about getting her another primary insurance policy (with prescription coverage) at the same time we did Kenton in December.... but ultimately decided, I was over-reacting... letting my worry creep in too much.... and since we really did not think we would be living this nightmare.... we decided to just get it for Kenton. A big mistake I now know... and one I will get the pleasure of reliving over and over until we can get her the right insurance coverage in place. I'm afraid it will be a very long 8 months.

 

We have had some pretty exciting things to celebrate the last week or so! We participated in our first Cystic Fibrosis Great Strides walk... and had over 60 of our family and friends come to show their support... many that traveled several hours to join us. I never remember a time where I have felt more loved. It truly lifted our spirits and reminded us of the amazing support that God has placed in our lives!!





We raised about $7500 for the cause in just the short few days we had before the walk! Fundraising is so very important.... many believe that we could possibly see more "miracle drugs" for CF victims in this lifetime....possibly even a cure....and I am ready to do my part to raise awareness in any way I can! It's our best attempt at turning our lemons in to lemonade!

                 

Many of you that know me well, know that God brought the most unexpected of business opportunities in to my life about one year before my life got really crazy.....and 28 days before our world was rocked with this diagnosis for our sweetie... my twin sister and I became Executives with this company. Little did I know that the weight loss and energy these products have brought to my life, would become secondary to what the business would do for my family. My husband has an amazing job....and is a wonderful provider for our family.... I never want to take anything away from that....but his income was used for all of our EXPECTEDS..... the financial blows that the UNEXPECTEDS have brought in to our lives, could have been devastating without my income as well. But God had our story written long before we did. He knew what we needed before we did....and he provided for us....in the most unconventional of ways..... as he ALWAYS does.

This company has brought the most amazing people in to our lives..... people who pray for us, organize meal trains, donate products that my daughter desperately needs for her immunity, and it continues to just amaze me.

Today, I was snuggled on the couch with Kambree doing a treatment.... and we were covered in a blanket with my company's logo on it....and she said, "Mommy, are you so glad that you are an "X" girl?" (something she has called me since I started)...and it brought me to instant tears... because I am.... sooooo very, very, very glad.... that God brought this into my life....at just the right time. I was snuggled with my new blanket.... almost like a child with their "security blanket".... and it struck me...our true security, of course, lies with our trust in God, but I could not help but think how much earthly security this company has brought in to our lives.

Without it, our lives would be so much different. I'd likely be eating myself into a severe depression.....and then I'd be sleeping to avoid the reality that I'm in. I wouldn't have nearly the number of friends and support that I have now... friends that are truly more like family.... lifting me up every single day. Sending me encouraging scriptures through text.... organizing prayer luncheons, singing praise songs to me over the phone, reminding me just how awesome our God is.  I shudder to think how much debt we could have accumulated with all of our medical expenses.

Initially it felt weird, and I had to stretch myself... but I said YES... and this company has changed my life in so many incredible ways. It's going to allow us to provide for our children in ways we may have struggled before. This company is going to allow us to GIVE in ways I could never have imagined previously. I've got a running list of ways I want to bless people---and as soon as we can get our kids squared away, I can't wait to see how God will use this and me next! He has expanded our circle of influence a hundred times over....and we have so many people we can now lead....and love....and serve.... and there is really no job more gratifying that that.

This blog is about the WHOLE White World....and I don't for one second want to let Cystic Fibrosis define our entire lives! It's a sad part of it....a heart breaking part of it... and one that has left a lump in my throat for about 3 weeks now (who's counting?)....BUT there are a lot of WONDERFUL things in our lives too..... and we will most certainly celebrate the good, while we are dealing with the bad!

Danielle and I got the privilege of presenting at our convention this past weekend....and we created a video to show how much our lives have changed since we began our Xyngular journey in April of 2012..... our husbands and kids even participated in the fun with some messages we included.

Watch it....and cry HAPPY tears with me for a change.... because I think you will be able to tell from the video.... that this is a HUGE source of happiness in my life! Our stories have all been written.... we just have to live them out... and this part of my story, has been a pretty amazing one to live!

Changed Lives

Love you all... that's it for now..... I'll keep you posted on the arrival of the meds!

XOXO
Deanna :)

One Week Down

Today marks one week from our hospital visit. This week has had it's share of happy times....and not so happy times.

Kambree is adjusting fabulously to her "new routine"....although it started out a little rough.

There was lots of negotiating and begging.... "Just let me have my cough". It was very hard to convey to her, just how important the treatments were, without scaring her....but the last few days, she seems to have settled in. The treatments are taking around an hour twice a day.... which may not seem like much.... but man, it is!

 

 

This weekend we got to watch her "Rock Around the Clock" at her first dance recital.... and it was about the sweetest thing ever. I watched her smiling so big, front and center....and just kept asking myself how it can be, that such a vibrant, seemingly healthy little girl, could be so sick.

What could be better than that??? One thing, for sure. Seeing her get baptized. A few months back, Kambree prayed to ask Jesus to live in her heart, it was beautiful..... and truly the definition of JOY for me. She was asking a lot of questions about baptism, and decided it was time to show the world, that she was " a NEW girl". Jason got the privelege of baptizing her, and it was perfect! A perfectly timed, perfect event, to remind us where our ultimate peace and hope from.

 

 

An all around beautiful Sunday, was followed by a pretty darn awful Monday. I was sitting in Martial Arts class with my kiddos...when I got a call from a now-familiar Kansas City number. It was Kambree's doctor, calling to let us know that they got the results back from her culture, and that Kambree has two different lung infections. She said, we were now in "rescue mode" as these infections would slowly destroy her lungs. She added 3 more prescriptions to aggressively treat the infection..... 2 in pill from (she has finally learned to swallow them, and is shopping for a new Barbie with Daddy as I type this, as a bribe....errrr, reward! ;)) The non pill antibiotic, has caused us some major panic.... unfortunately, until December 1, when the national health care program opens up their enrollment, Kambree is without prescription coverage. Up until the need for this inhaled drug arose, our script costs had been minimal.... the cost for the new drug..... wait for it......

 

$7,000.00 a month.  A MONTH!

 

 

When we had the scare with Kenton, we got him another primary  policy set up, for this very reason. We were informed that prescriptions for CF could be thousands and thousands a month, so we were proactive.... secured him another policy, and now, my son is sitting pretty.

 

BUT, as it turns out, BIG SIS is the one that desperately needs the additional policy... and we missed the open enrollment period by a month..... open enrollment closed on March 31.... we got her diagnosis on April 28th. I've called... I've begged, I've pleaded for an exception... they do exist for some, and there is a qualification process.... unfortunately, her new diagnosis doesn't qualify her. If she were to get married, we'd be golden..... but receive an earth shattering diagnosis..... no go.  (I'll remove my snark now.) If we were to drop her from our family coverage (which is quite awesome coverage, with the exception of the lack prescription coverage), we MIGHT qualify.... but there is no way we can drop her, on the governments word that they MIGHT agree to an exception if that occurred.

 

So here's the good news... I've made you sweat long enough. Due to our situation, there is a very good chance that the company who makes this LIQUID GOLD LACED WITH DIAMONDS prescription... has agreed to gifting us the first two months. We still don't have it in our hands, and are going through the process, but after another conversation with our CF team at CM... they are VERY confident, it's taken care of. Will you pray with us, that this comes to pass....and SOON. Kambree desperately needs this medication.... and no dollar amount in the world will stop us from getting it for her!

 

 

It is possible that after 2 months on this medication, she won't need as a daily part of her routine..... some do, some don't..... so for now, we are taking it one step at a time. We do know there are other resources, grants, etc.... to help folks like us in these nightmare-ish situations..... and we are very encouraged by the fact that we know we can get her another policy, with amazing benefits, in 8 months..... lucky for us, they are not allowed to take pre-existing conditions in to account.... so the rate they offer us, will be based of her age and gender alone. Whew!

 

We are in a deep valley right now...no doubt. I've seen other moms walk similar roads....admired their strength from afar, read their blogs, and had often wondered, how I would hold up in a situation like this.  Would I be angry? Feel forsaken?

 

I'm neither. I just can't be mad at God. When I look back at my life, he has blessed me with FAR more happy, overjoyed, cup spilling over moments, than heartbreaking ones.... and I know, without a shadow of a doubt, that God has a plan for each of us. He knows how this ends. He hears my desperate pleas to take this all away. He's heard me begging him to breathe new life into my little girls lungs....and I know he has the power to do it....but that doesn't mean he will.  

 

 He is the giver of life..... he is the taker of life. The road in front of us is very steep, and I know will have a lot of heartache along the way... but He has surrounded us with so many friends and family to help carry the burden, and He himself is with us, living in us, and now living in her!  

 

Please continue to pray for us:

1. Pray that we will get this new medicine.... QUICKLY.... and affordably!

2. Pray that it works like a charm.... and rids her of all infections!

3. Pray for my family! Kambree is not just a daughter to Jason and I... she is a granddaughter, a niece, a cousin, and a friend to many. While they all feel the need to be strong for us... I know they are hurting deeply.

4. Pray with us for a CURE. This is a horrible disease, and they have made significant gains on life expectancy due to funding raised by the loved ones affected. They have new medications that are supposed to be "miracle workers"... they are learning so much, but this all takes money. We are participating in the Cystic Fibrosis Great Strides walk this Saturday---in Kambree's honor.... as White's Warriors. We would be honored if any of you wanted to contribute $5 or $10 to finding a cure!  Ultimately, that is what Kambree will need....without that, all of our attempts are truly just to improve the quality of life and prolong it as best we can!  Here is the link: http://fightcf.cff.org/site/TR/GreatStrides/58_Heart_of_America_Kansas_City?team_id=26177&pg=team&fr_id=2101

5. My sweet, sweet grandma passed away Monday night... making a bad day, 100x worse. She hadn't been in her usual amazing health for several months, but this still came as a big blow to the family. She is going to be greatly missed. Kambree took the news very hard! We will lay her to rest on Friday.

 

 

Thank you all, so very much for your support. Two tired and weary parents, are lifted up by your sweet comments, cards, food, and so much more!

 

XOXO

Deanna :)



 

 

 

 







It's Sinking In...

Unfortunately, I haven't woken up from this bad dream, so each day, I seem to be accepting it more... not liking it any more.... but settling in to the situation. We have so much to learn. We are no doubt overwhelmed, but we are blessed beyond measure with amazing friends and family who have showered us with support, prayers, meals, phone calls, cards, and flowers----and we have a Savior, who whispers in our ears daily, that He loves her. He loves us. He is with us. This is news to us, but not to him. He knit her together in my womb. We are in a valley now, but we've been on many mountain tops.... and we will continue to praise him in BOTH.

Shortly after my blog on Tuesday, I got the call with details on our next step. We had an appointment at Children's Mercy yesterday. They encouraged us to bring support people, and my parents were able to arrange to join us. We hadn't told Kambree much more than that we were going to the hospital where we take bubba, and going to have to figure out how to help her with her cough. She was pretty disappointed to not be hanging out with cousins like bub and sis got to, but a trip to the movie store with daddy for some traveling entertainment, and a sweet goodie bag from her cousins perked her right up.

The appointment went something like this....

Doctor comes in... introduces herself, Kambree introduces all of us.

Doctor sits down. Says, "We all know why we're here, right? Does she (Kambree), know why we're here?" 

I say something about a cough, honestly, not sure what came out, and she proceeds.

"Cystic Fibrosis is a life-shortening disease..."

and I am scrambling for my iPad for some quick distraction for Kambree.

She goes on to describe the disease, says we need to assess her current condition, and figure out how we can best treat her to give her the best quality of life.... to prolong her life.

So as it turns out, all my time googling "false positives on sweat chloride tests" was surely wasted. There was no discussion of alternate possibilities. No discussion of IF. Just the facts. Our daughter has Cystic Fibrosis. 

It is so surreal still at this point. All of the anguish, praying, blogging..... I did about the fears of my son.... and then BAM! A quick test at St. Francis on Monday morning.... and definitive answers that will forever change our lives just hours later. If this was to be the outcome, I will say, I am grateful it didn't turn in to month's of waiting and wondering. We did the test....and got the shocking news.

Back to the appointment.

Initially, the doctor thought we would start with one treatment, and gradually add on things to allow us and her time to adapt to the new routines. After assessing her further, she decided we needed to be more aggressive, and so for now, we have 3 different treatments to do twice daily.

Over the course of the appointment, they taught us each "treatment" and instantly it started working--by working, I mean loosening the mucous, to where she could get it out. The coughing became almost constant and (pardon the tmi) they taught her how to get it out.... and she spent the entire 3.5 hours we were there, coughing up, horrible mucous and spitting it out. (this continued in the car ride home, in the middle of the night, and is still going!)

That was honestly the worst part of the day.... watching her coughing and spitting, over and over again. The doctor was a little alarmed by some of the stuff we saw coming out of her sweet little body....but was proud of her for catching on so quickly on how to get it out. Some of the mucous is being sent for testing for a certain bacteria that we are praying is not found. If it is found, another treatment will be added to our daily routine.

With all of the mucous she has been carrying around, it is really amazing that she has not been getting infections. The mucous can trap bacteria, lead to infections, etc... and my sweet girl hasn't been on a prescription for illness for well over a year, when we added a "shot of super juice" to her daily routine, and I have no doubt in my mind, the immunity support and anti-inflammatory benefits from that product, has kept her healthy. When we told her today, she could have as many shots of "super juice" and Xypstix as she pleased, she was downright giddy!

Her lung function test was "disappointing" she said (although we felt as though she may have been a little embarrassed and not really showing what she was capable of..time will tell). We are really hoping for some improvement here next month.

Based off of the coughing and lung function test, we were all a little concerned about what the x-ray of her lungs would show.... but I am so very happy to report.... the doctor said she was "pleasantly surprised". She did see some minimal damage, that she explained is permanent, but based off of her observations from the rest of the appointment, she was afraid it would have been much worse. I asked if her lungs looked "typical" of a 7 year old with CF considering her lack of treatments thus far, and she said she'd put her in the middle. She's seen better, she has seen worse.

So we will celebrate that they weren't worse! That was a huge weight lifted. We will also celebrate the fact that CF is currently not affecting Kambree's growth. Many (90%) with CF suffer from malnutrition and have to take enzymes with every meal. She seems to be thriving in that regard. We are awaiting results from a nutrition standpoint to confirm this, but assuming they don't show anything of concern, Kambree will not have to go on any enzymes or adjust her diet at all at this time. Praise the Lord!

We finished up the appointment by drawing blood (daddy got to take her for that :( ) and it (and the stool sample and mucous) have been sent off to test for a variety of things. The results from all of this will trickle in over the next few weeks....and will tell us more. (the specific mutations she has, whether she has any nutritional deficiencies, whether her pancreas is functioning properly, whether there is bacteria in her mucous, etc.)

We met so many people yesterday... a whole team of CF experts ready to help us with every aspect of this journey.... and for that, we are so thankful.

Please pray with us about the following things.

1. We've been told that sweet little Kreslee needs to have her sweat test ASAP. I can't even bring myself to make the call to get this scheduled, because I am just beside myself with fear. I don't see any symptoms in her, but until that phone rings with happy news a few hours later, I will be a wreck.

2. Pray that there is no bacteria in her mucous. This would mean adding another treatment to our new daily regimen.

3. Pray that her pancreas is functioning properly, and that dietary changes won't be necessary at this time.

4. I feel that my weeks are already a blur with Kenton's therapies, and adding more to my plate is hard for me to comprehend at this point. Her treatments will take 30 minutes to an hour (today was just under) to complete.... twice daily. Then the cleaning and sterilizing of the equipment will take time too. I know we will adjust, and it will all get done... it has to....but pray that our transition in to this life altering condition is as smooth as possible.

5. At her appointment next month, we will be discussing the need for the "vest". This is a common piece of medical equipment for CF patients.. you wear it a certain time period during the day, and it helps to loosen the mucous, etc..  sometimes insurance companies can be uncooperative in assisting with this.... and the vests are around $15,000. I've spoken with our insurance company about our policy, and the lady felt it was promising that it would be partially covered at least.... so pray that if and when this is necessary for Kambree, that it is not a struggle to get it covered.

6. We have several upcoming appointments for both Kenton and Kambree..... enough to make your head spin..... just pray with us that these go well, and there are no more hidden surprises for the White crew. (Kenton--May 6, gastrointestinal dr in Wichita, Kambree--May 28, CF follow up, Kenton--June 17, pediatric neurologist at CM, Kenton-- July 21, asthma follow up at CM... and I'm sure Kambree will have more appointments as well)

7. Pray for my husband. It's hard work having to be "the tough one".... and I know watching his little princess struggle....and worrying about me, takes a toll on him.

It is so hard to watch your child suffer. It is so hard to feel like there is a "secret" we are keeping from her. It is so hard to know that you have passed a "life-shortening" disease on to your child. It is so hard to focus on TODAY and not let your mind wander about how this ends... but we have to.
We have to be strong... put on our "brave faces" like we tell our children to do...and put one foot in front of the next, over and over again.

I can't thank you enough for your support. Thank you especially if you made it all the way through this one... it was long I know... but what can I say... I have a lot on my mind.

Love to you all from The Whites!