One Year Down

April 28, 2014... in this house, that is known as the day our world flipped upside down. After a few months of deliberating on whether to test Kambree for Cystic Fibrosis, the decision was made that we needed to rule it out... you know so we could put the whole scare behind us....and get on with our lives!

Here Kambree is, innocently watching a cartoon on her iPad.... hooked up to the machine, that was SUPPOSED to tell us, she was completely normal--no disease present.... just like her brother. It was supposed to produce results that would once again teach me, that I worried and stressed about something....for nothing.

 

But it didn't. Instead, it revealed to us a secret about our daughter, we hadn't know for the first 7 years of her life. It informed us that her cough we'd listened to night after night since ... wasn't allergies. That her excessive sweating, was in fact a cause for concern. It revealed to us, that our daughter has a disease..... attacking her body.... producing extra thick and sticky mucus, that coats her airways, making it difficult to breathe....and we learned that the same sticky mucus, likes to hold on to infections and bacteria, that most "normal" bodies can kick on their own.

 

It revealed more than that though. That test, showed us, that we were stronger than we ever knew we were. It showed us, that our faith in God, was not just strong in the good times... but it was strong enough to get us through the darkest valleys as well.

 

It revealed to us, that even though we were sure there was NO way, we could add 3 hours a day of treatments to our already busy life....that when push comes to shove...you find a way to make it all fit.

 

Quick math and approximations, reveals that 45 entire days (24 hour periods) of the past 365 have been spent doing treatments..... and that doesn't include the sterilizing of all the equipment, the endless hours of phone calls with insurance companies, hospitals, pharmacies. This diagnosis....has felt like a new part time job. 

 

When we were going through the scare with Kenton, and I had been reading up on what to expect... I remember thinking there was no way I could ever keep up with all of the necessary things that come with a CF diagnosis..... early on in Kambree's diagnosis...I remember feeling as though I was drowning.... but you know... it gets easier... instead of looking at the entire mountain, you just take one step at a time.... and before you know it, you're at the top.

 

I've had to apply that same principal to the emotional side of this situation too. Here I am... one year later.... still trying to figure out how to truly enjoy the moment I am in...trying to not let my whole life be defined by this disease. Honestly, I've had this new friend following me around since the moment I received the devastating call with the news...... this "friend" would better be known as a "dark cloud". Some days it's pretty heavy, and hard to see through.... but most of the time, it just lingers in the background.... of a pretty awesome life... and whenever I start to get too happy, or carefree... it snaps me back to reality. This same dark cloud likes to get me thinking down the road too far.... pondering on when this thing takes a bad turn.... and what the future for my daughter looks like.... and this dark cloud makes it REALLY hard to see bright things..... happy endings.

 

Honestly, it may not ever go away.... I don't know...but this new friend of mine, doesn't have control of me. I choose to fight the cloud....and not let it take over my thoughts... not let it steal my joy. It's not easy... but it's possible. I pray that as time continues to pass, it will become more and more distant.

 

Tomorrow morning.... ironically, I'll be waiting for another phone call.... much like last year. This one, will be giving us an update on her infection status... pray with me, that despite the decrease in lung function at her appointment last week, and increase in symptoms...that by some miracle, the infection is gone....  we really need it to be gone!

 

In other news......

 

In honor of one year down on this "new life", we thought it would be a pretty appropriate time to take the family on a vacation.... so we wrote Kambree a poem, and surprised her a few weeks ago... her reaction was priceless... I'll post it on FB once I get it trimmed short enough. So.....Saturday, after the CF Great Strides Walk..... we are loading up and heading on a cruise! I can not WAIT to have my babies on a vacation they will remember forever....

 

So that's it.... one year down.. and we're still trucking along.....heads above water. Ready to tackle another year of this disease....and to come out stronger in the end.

 

I can't thank you all enough for the amazing support...and encouragement...and prayers..... you've helped us carry this load... no doubt about it!

 

Those of you who are local, and would like to join us....Chic-fi-la is doing a fundraiser on Kambree's behalf.... Thursday night...

 

 Or if you'd like.... we are winding down our Great Strides Walk donations.... and would be so grateful for any amount!

 

Donations are HUGE for this disease.. they are literally what have taken the life expectancy from 10 years old.... to 37 years old..... so the theme of the walk... "adding tomorrows"....is literally doing just that!  Here's the link to  White'sWarriors  http://fightcf.cff.org/site/TR/GreatStrides/58_Heart_of_America_Kansas_City/1037735895?pg=team&fr_id=3311&team_id=31864

 

You can start your own campaign....or click on Kambree White's name and donate.



 

 

 



The Pill

There was an eruption in the White house tonight...
Not the usual, kind, that comes after a toy squabble, or a bath or bed time announcement.

One from a momma, who completely, 100%, lost it.

What the Facebook and Blog world don't know, is that Kambree's symptoms have all returned, full fledged. The same cough we were hearing for the 7 years prior to her diagnosis, is back. The constant hacking up of gunk, that was present during her initial treatments, but had virtually disappeared, has returned.

So what does this mean? It means MORE treatments. When possible, they'd like us to add another treatment. It means yet another medication, for 2 weeks, twice a day, and an additional trip back to Children's Mercy at the end of April, to see what's up.  It means more worry for a momma (& daddy). It means more frustration to be spending so much time of your life fighting this nasty disease... and then see a decline. It's struggling with the fact, that in moments like these, regardless of how "healthy" she seems.... and great she seems to be doing... you are smacked in the face with a reminder that your child has a life-shortening disease, that will progressively get worse.

So, back to this pill, that has been added to the routine. First, it's the size of a small dog...and tastes like something left by said dog. It  has been the source of many tears for the last week. No matter how we have sliced it, coated it, hidden it, etc.... two times a day, for the last week, we've had major meltdowns. It was like the official straw that broke the camel's back. Between treatments in one way or another, every 5 hours or so, this pesky pill was where Kambree apparently drew the line.

She's been such a trooper this past year.... had her fair share of objections to treatments, and some "why me" moments along the way... but all in all, she's adapted amazingly. This pill though... seemed to unleash all sorts of emotions. Her meltdowns leading up to taking it, have sucked the life out of me as well. I can't describe how painful it is listening to your daughter wail, begging you not to take it, and saying how much she hates CF.... how much she hates her life. It's been a knife through the heart.

Could it be 8 year old girl dramatics.... possibly... but my "mommy intuition" tells me otherwise.

Tonight.... the most amazing father (& husband) came to the rescue with an idea on "the pill" that I hadn't tried yet. And it worked. Like. A. Charm.  It still took a good 15 minutes of coaxing, but finally, she took that pill like a champ... cut in half.... and dipped in a little honey! It "slid right down" in her own words..... and she got the giggles about how "easy it was" and how "it tasted YUMMY"... and PROMISED me she'd take it from now on that way, without a fit.

And then.... she rushed to my phone, and called Aunt Nell to tell her the happy news. But Aunt Nell didn't answer... so Kambree left her a message. It was so sweet, so innocent, and ended with.... "thank you for believing in me!".... which is where I lost it.

Like totally, husband looking at me with the "who died" face, LOST IT.  I very rarely have let Kambree, see my emotion, and pray to God that I'm not ruining her in some way, by letting her see me that way... but tonight...I just couldn't control it.  I guess, the happy pill taking experience... followed by the sweetest call to my twin, was the straw that broke the camels back for ME... Kambree rushed to my lap....and sat there for a few minutes... asking me, why I was crying...and if they were happy tears, or sad tears... and I had to quickly decided if I was going to be honest, or go with the ol' "saw a sad commercial" trick..... when I could finally talk, I told her the truth. I told her my tears were both happy and sad.

I told her, they were happy because it has been such a hard week of battles at pill time.... and I was so overcome with joy, to have (seemingly, we'll see tomorrow) found a solution to the problem....and sad tears, because I hate how much of her childhood is consumed with Cystic Fibrosis. I told her how sorry I am that she has to do treatments every day and night, and now, some in the afternoon too.... and before I could say much more... she looked at me with her BIG brown eyes, and said, "Don't be sad for me, Mommy! We are going to find a cure! I'm not sad, because I know I'm not fighting alone. I have so many people that love me, and are helping us find a cure!"

BAM! She's right. We have so much to be thankful for. An amazing support system! New technology and treatments that are being developed every day, to improve her quality of life.  We can't wallow, or be sad... we don't have time. We have to stay strong, positive... and put our efforts in to things we can control about CF... like raising awareness, and raising funds... because ultimately, it's those two things ( or divine intervention) that hold the keys to that CURE she is counting on.

So that's what we'll do. Tomorrow (April 9th) is a new day. It's a day where a local restaurant, Jose Pepper's (east) has agreed to give 10% to our CF Walk Team, for any tabs that present our flyer. Wow. So awesome, and exciting-----this happens to be Kambree's FAVORITE place to eat... you have to hear her say Joooooo-seeeeeeeeee PEPPERS!!!!!!!

We also will be in awareness and funding mode for the next 3 weeks, as we have our CF Walk in Wichita on May 2. White's Warriors set a BIG goal this year.... we want to raise $15,000.... seems like a HUGE stretch....but you have to aim high, right!?!?

We are sooooo beyond grateful for so many of you who have already donated, and/or are walking with us, and raising support of your own. Seriously, can't thank you enough. If you would like to, but haven't yet... I'll include the link to Kambree's page where you can do so now....

http://fightcf.cff.org/site/TR/GreatStrides/58_Heart_of_America_Kansas_City?px=2302968&pg=personal&fr_id=3311

I sure never thought I'd be in a situation, to be asking others to contribute for a cause so dear to us... if I could fund it all myself, you can sure bet I would.... but here I am.... asking for any little amount. Even $10 can add up to a lot of HOPE for kids and adults, whose diseases are progressively worsening.... while we are waiting for a cure.  (see my previous blog to know, that truly, truly, a cure is possible in Kambree's lifetime) It's a chance to be a part of something HUGE for 30,000 Americans.... and all of the hundreds and thousands of people that love them!

Thank you all! For praying for us. For supporting us. For following this silly blog/aka my therapy!

The Whites pretty much just love ya!!!!

Different NOT Less

This boy. Oh, this boy.

He has my heart, in a big, BIG way.

He's in a blue shirt today, because today is Autism Awareness Day.....and that blue shirt has a Captain America logo on it... because, in many ways, he's like a Super Hero. Overcoming obstacles. Fighting hard. Winning!

Almost two years ago, we learned that our suspicions were correct.... and there was more at play in some of the delays we were seeing with our sweetie. We received an Autism diagnosis.

Autism looks different for everyone. Some will tell you it's a gift.... others feel it's more like a disease that needs a cure... as for us... we're somewhere in between.

I love my son. JUST as he is. I believe, with every part of me, that he is EXACTLY who he was created to be. God does not make mistakes, but I would be lying, if I didn't admit, that Autism has certainly brought its share of hardships to our family. I'd be lying if I didn't admit I often long to be able to have a completely normal conversation with my son. I watch other boys his age, and how they interact with their parents and peers, and it hurts, because we aren't there...yet.  I'd be lying if I didn't admit, I sometimes wish things were easier or different.... because life with Autism involved, is hard sometimes....a lot of times.

If I could say anything to bring awareness to the cause... it would be this. Of all the hard times that have been associated with Autism in our family, the ones that hurt the worst, are the interactions we have with others, who just don't "get it". They leave me wanting to defend my son, and to set the record straight... (or possibly throat punch some, who audibly yell at him, and suggest we put up a sign letting the restaurant know he has Autism---see former blog.).

The good news about this though... it's fixable! If awareness increases...it's fixable! If we learn to be more empathetic.... it's fixable.  If we get a lesson in giving someone the benefit of the doubt... it's fixable.

We, as humans, tend to assume we know what's at play in any situation. We assume, a child crying in the supermarket, is upset because he didn't get his way, or he is spoiled. We assume a mother ignoring certain behaviors, is inattentive.... a lousy mom. We think if a child looks "normal", then he should act "normal". And often, when we make those assumptions, we let our body language reveal how we feel. We give dirty looks. We sigh. We huff and puff.  And some of us, who are REALLY bold, make comments.

We don't stop to realize that the crying child, may just be over-stimulated. Unable to communicate his needs. And that "ignoring mom", may just be trying to get through a dreaded shopping trip without a comment or glare, so she can get back to the privacy of her home, and deal with the same behaviors, day in and day out, but without an audience. That mom is tired. She's doing the best she can.

In our case, that "normal" looking boy, has to work so hard for everything he accomplishes in life. He spends his mornings in various therapies, to learn skills that most just learn as they age. He spends a lot of time watching other kids play, and wishing he'd be invited in to the mix. Sometimes, when he is, he scares them off, because he is so excitable. He shouts "HEY" before the majority of things he says... and kids generally aren't sure what to make of him. Sometimes, he has so much he wants to say , that it's a struggle to get it out....and so it come out in mumbles, or it takes 2 or 3 attempts to get it out. When he gets excited.... REALLY excited... he does the most adorable dance, because he can't control his body, AND be excited at the same time. He moves in one speed for the most part... and that's slow motion.... making even the simplest of tasks, time consuming.

Our situation, pales in comparison to many who are affected by this condition. Some mom's would do anything, to just get to hear their child's voice, to get an "I love you" or a bedtime snuggle. They have to learn "holds" in order to keep their child from hurting themselves or others. I think of those families, and those individuals, and my heart breaks.

Families affected by Autism....don't need our gawks, judgment, opinions, glares, sighs, or comments. They need forgiveness for disruptions. They need prayers. They need encouragement.  They need people willing to teach their children to be accepting of differences, and to seek out people that need a friend... but not to just teach their children those things... to live these things out in their own lives.

This doesn't just go for children.  We all encounter adults that seem different. What do we do when an adult who doesn't seem "normal" engages us in conversation? Do we cut it short? Seem annoyed. Run the other way? Or do we take the time to bring light to their day? To hear what they have to say. To ask them how they are? To smile.

I have learned so much from my son. My eyes have been opened to things I was oblivious to 6 years ago.... and so I write. Not to judge or condemn... but try my best, to bring awareness. To urge us all, myself included, to not be so quick to make assumptions on situations... and to love all. Accept all.

I believe that our son is perfect. I believe that he is going to continue to soar. He will learn to communicate effectively, and build meaningful relationships. Although nothing is easy, and his path always seem to involve a lot of guesswork... in my heart, I believe God has big plans for him.  No, I KNOW God has big plans for him. He's already using him in big, big ways.

So in honor of my boy, on this special day.... let's try to remember... they may be different, but they are not less. They are just trying to make sense of a world, that operates differently than their mind does....and if we take the time to get to know them, we may just learn something from them!

Love you all... and as always.... thanks for following, the WHOLE WHITE WORLD!

Someone I love Is Waiting....

We need a cure...because someone I love....is waiting.

That someone is my beautiful daughter, Kambree.

She spends her days wishing she was still "normal", because for the first 7 years of her life, we were unaware that she had Cystic Fibrosis. We had concerns about her excessive sweating, and her constant cough that nothing seemed to remedy, but they were just mild concerns. Those years, she didn't have to spend hours every day hooked up to medical equipment. She didn't live her life in 4 hour increments, waiting to do her next round of meds. She didn't have to swallow pills every day. She could go to a sleepover, without figuring out how she was going to get her treatment. She could eat dinner, and wrestle with her daddy, until it was time for her bath and bedtime....without figuring out how to fit an hour and a half treatment in to the evening.

She misses those days.

I miss those days.

But those days are gone. Gone forever... UNLESS we get a cure.

As the time since her diagnosis ticks on, I am seeing more and more emotional wear on her. She will burst in to tears over little things.... like when I surprised her with mother/daughter CF shirts.  When we had a "Purple Day" and friends and family all over the country wore purple for CF awareness.... tears streamed down her face as we showed her the pictures. I think the tears are just a good release of emotions she is bottling up... so even sometimes happy things, give her a nice excuse to let it out. She cries on a weekly basis now... missing her old life.... and all I can do is pray for a cure.... and cry with her.

The emotional toll it's taken on her has been tough.... but the reality is, Cystic Fibrosis to her... right now.... is just an inconvenience to her carefree childhood. It's a thorn in her side. It's something that makes her different than her friends. For now, she has no clue what having Cystic Fibrosis truly means. She has no clue that this disease is life-shortening, and that every second she spends hooked up to the vest, shaking away.... is a second spent trying to prolong her life. Every puff she takes on her breathing machine, is in attempt to preserve her quality of life.  It's all done in effort to fight a disease that is vicious, and does not like to grant people life on this Earth beyond their 30's. A disease that slowly clogs it's victim's airways and literally leaves them gasping just to breathe, until eventually, they can't. I don't mean to be graphic, or morbid...believe me...I wish I could "unknow" much of what I do.... but I can't. Someday, I fear sooner than later, Kambree is going to put the pieces together. She is going to ask the big questions, and we'll have to give her the full story.... it's a moment I dread. That knowledge is something I want to spare her from as long as possible. It's a cross I don't want her to bear.

But there's HOPE!  I truly, truly believe that there is hope! Over the next 6 weeks, we are going to be putting our efforts into ADDING TOMORROWS for those with Cystic Fibrosis. We see so many different causes... and diseases needing cures....that I think we become hardened to the fact that it's possible. With Cystic Fibrosis.... I TRULY believe it's possible... I HAVE to hang on to that belief. Unlike many other diseases.. they've pinpointed the exact cause. Because of this, there are so many advances being made every single day, that are dramatically improving life (quality and expectancy) for those with CF---and ALL of this is possible because of funds raised! Check out some of these fast facts (from cff.org)!

1962--- Median survival age for someone with Cystic Fibrosis... was 10 years old
1989--- A team of Foundation-supported scientists discovers the defective CF gene and its protein  
             product (CFTR), opening the door to understanding the disease at its most basic level.
1993--- Pulmozyme is approved by the FDA... this is a drug that Kambree gets daily, that's job is to
             thin the mucus, making it easier to get out
1997--- TOBI, the first aerosolized antibiotic, is released (this is one drug we've been trying to use
             to eradicate her Pseudomonas)
2002---A Foundation-supported study shows azithromycin improves CF lung health. (another drug
            she is regularly using)
2004---Foundation-supported studies in Australia and at the University of North Carolina show that
            hypertonic saline helps clear CF mucus. It is proven to improve lung function and reduce
            hospital stays, and becomes a therapeutic option.  (she inhales this, twice daily)

Now, things start getting REALLY exciting....

2006---an oral drug in development by Vertex Pharmaceuticals Inc., with support from the
            Foundation, enters clinical trials. VX-770 is one of the first compounds to attack the root
            cause of CF, and works at the cellular level to open chloride channels that do not function
            correctly in people with the disease.
2007--- Vertex selects a second potential drug, VX-809, for development. Like VX-770, VX-809
             addresses the underlying cause of CF, but it works by helping the defective CF protein move
             to its proper place in the cell.
2010---The FDA approves a new inhaled antibiotic, Cayston^® (aztreonam for inhalation solution), to
            treat CF lung infections. Developed by Gilead Sciences Inc., Cayston offers a much-needed
            antibiotic alternative for CF patients who battle recurrent infections and develop resistance to
            existing antibiotics. (this is the new drug Kambree is currently on 3x daily)

In the most recent of years, there is huge excitement and progress continuing to be made in the drug referenced above in 2006-7. It is already helping so many people, and currently they are working to approve it for more people.... it takes time.... and money....but I'm hopeful, that someday... this drug will be approved for Kambree. This drug is the first that is actually addressing the underlying cause of Cystic Fibrosis. It has brought so much hope, that maybe, just maybe, we will find a cure in this lifetime!

I look at all the research that has been done, and I'm so thankful. Thankful because I see the timeline, and the gains that have been made, and I know that this disease looks very different for my daughter, than it did for those diagnosed many decades ago. I'm thankful for every family, who was effected by this nasty disease, long before we were... for every dollar they raised, in efforts to find a cure... because as you can see in the specifics above, that money raised as dramatically changed things for those suffering with this disease. Without that... take us back to 1962... and where might things be for Kambree right now.  

This disease only effects 30,000 people in the USA.... and at this time, gets no government funding...so that means every dime needed for research, is raised. Raised by friends and family of people that are effected by this horrible disease... and I know sometimes it's hard to believe that even little amounts, make a difference.... but they sure do! It's funds raised and put towards research that have taken the life expectancy from 10.... to 37. That's INCREDIBLE.... but not enough! I'm 36 right now.... and that's a haunting perspective.

Kambree turns 8 tomorrow.... and I'm afraid, birthdays will never look the same for us... they are now the true definition of bittersweet. Bitter....because we know with progressive diseases, time takes it's toll on a body.... and birthdays are certainly an indicator of passing time. Sweet, because the Lord has blessed her with yet another beautiful year on this Earth... and boy, it's been a great one!

In honor of her birthday.... Kambree set a goal to raise "a thousand hundred dollars" for Cystic Fibrosis....which I am going to paraphrase to mean.... $1100.  It's quite a goal, but I know is possible, if some of you who have followed our story, would be willing to help.  It's never fun asking for donations.....but if you could spare, even $5 or $10 towards the cause.... it would be appreciated more than I can even put in to words!

Donating is super simple...
1. you go to this link....White's Warriors
2. Click on Donate to a Team Member
3. Find Kambree White's name
4. Click on Donate
5. Give whatever you can.

And know... that one day.... when CF no longer stands for Cystic Fibrosis, but instead.... CURE FOUND.... you will have not only have made an 8 year old girls birthday wish come true..... but you will have added to her, and many others tomorrows!!!

We need a cure.... because someone I love.... is waiting!  (and many, many others.)

The Scoop (and a Pity Party)

Yesterday was just a CRAPPY Cystic Fibrosis day.. that's all there is to it.

The phone rang about 10:00.. and it was a prescription manufacturer, letting me know they'd explored our new insurance policy and we'd need to pay $5500 (which would equate to 1.5 months of this particular drug) before our price on the drug would drop to $48. Whaaaaaaaaaaaaaaaat?!?

De ja vu... here we go again! I told them there was some mistake, as I had specifically checked on coverage for every drug she could need PRIOR to selecting the policy... and luckily... I was right! After about a 4 hour rat chase of calls to insurance companies, the doctor, and the script company.. it was agreed, that they were mistakenly trying to send it to an out of network pharmacy....and so we SHOULD be receiving this drug soon.... which is good, because she needs it!

Literally..as I was winding down the conversation with our insurance company, and the knot in my stomach was subsiding... Children's Mercy was beeping in... so I clicked over expecting to fill the pharmacist in on what BCBS had just told me.... instead, they were calling with Kambree's results from last week's culture.

They weren't good. Despite being on a very strong inhaled antibiotic, twice daily since November... she is still culturing pseudomonas. So since April, when we first learned that she had Cysitc Fibrosis, we've only had one culture that didn't show it.... and that's just pretty darn discouraging.

The doctor said they don't believe it's colonized or in mucoid form.... so that is good. I've googled enough to know that we definitely don't want it to do either of those things...  and so, we desperately need to kick this. But how???

Apparently endless hours of treatments and thousands upon thousands of dollars in prescriptions, isn't cutting it....and that's pretty frustrating.

I really don't know what all of this means for her long term health. I know I cling to phrases that the doctor says, like.... "every day spent with pseudomonas, is a day that lung disease is worsening...", and they resonate over and over again in my mind...  but in some ways, I'm too scared to ask the big questions. What does this REALLY mean for my daughter?  What if we CAN'T get rid of it? What if the 7 years of her life that she was untreated, has left us unable to get control of this bacteria?

And maybe there aren't answers anyway. Maybe it's such a case by case scenario, that you just face the facts you have each day... and don't spend time dwelling on the "what ifs".  Ahhhh, if it were only that easy!

So for now... we finish the current  round of antibiotics she is on...we are adding in another inhaled step to her evening treatment... making that one now, about 2 hours (ugh)... then we head back to Children's Mercy on the 11th of Feb. At that time, they will x-ray her lungs, see if there is any cause for further concern... compare it to last April's x-ray... and see where we go from here.

Luckily, yesterday, as I was having a wallowing kind of day... .Kambree was with a dear friend all day... having the time of her life. It was so nice to know she was out doing normal kid stuff, and to not have to mask how I was feeling.... the younger two are pretty well oblivious.

I wasn't sure whether or not we should tell her that it's still not gone... but ultimately decided that we should.... and then as soon as we did, I wished we hadn't. She was heartbroken... and cried, and cried, and cried.... throughout the majority of her treatment.

We had talked at her appointment last week, about trading out a few things morning/night as it pertains to her treatment... and it was going to decrease the length of time of her evening treatment... which she was so excited about... instead.... it is now getting any longer.

I am thankful that we have medications and treatments to slow this disease... I'll start by saying that... but if you'd allow me to have a pity party... just for a few lines of this blog... I think I'd like to throw one.... and at the risk of sounding negative... I'm going to be brutally honest.

Every single morning... and every single night... those treatments affect our lives... nothing is simple any more.... you can't be spontaneous..... your mind is constantly analyzing when it's time to do the next one.  Most of us can't even find the time to commit to daily exercise... or a daily quiet time... those are 30-45 minute activities you are trying to fit into an already busy life.... and these treatments are more than 3 hours a day now. Can you even imagine?

Dad gets home from work.... we eat... they wrestle... and the entire time... I'm watching the clock... thinking... it's 8... if we start RIGHT NOW... she'll be done around 9:45-10---but wait... she hasn't taken her bath yet... now it's 10:30... and just like that, our night is gone. Add any other normal evening activity for a family, and again... imagine where that 2 hour treatment leaves you.

I hate it. I absolutely hate it. I hate how much of her childhood is spent wearing that pink vest... I hate how many times I have to interrupt whatever normal childhood activity she is doing.. and tell her it's time for a treatment. I hate it when she asks me questions about her future... and she tries to wrap her head around the fact... that this is FOREVER... unless a cure is found... this is her life.... these are the cards she was dealt. 

Ok. Done. Felt good while I was typing it to get it out... and as soon as I post, I'll probably regret tipping my cards and letting everyone know how I really feel.... or maybe just how I feel at this moment... because the worst part of feeling that way... is that the very thing that is so time consuming and frustrating.... is the very thing that is prolonging her life.... so how can I hate it??? So maybe it's more of a love/hate.

Either which way... it's our new reality. I guess I thought we'd be used to it by now.. and unphased, but it seems like it's the opposite.... as time goes on... I'm realizing that this is not going away.

I need to move on with my evening... so I'll just ask for prayers.

Prayers for VANISHING pseudomonas on Feb. 11!
Prayers for the most beautiful set of lungs ever seen on a 7 year old when they take a peek!
Pray for Kambree's spirits... she is going through a lot of the emotional side of this... and sometimes we find ourselves at a loss for what to say!

Thanks for following us! We are so blessed by the support system our AMAZING GOD has blessed us with. As always, we NEVER doubt that he will carry us through the valleys, just as he's led us through many peaks! Our circumstances, do not change who HE is.... we will praise him in the good... and we will praise him in the bad!

Much love to you all!