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5 days till we’ll get to share the whole album with you! But for today here’s a preview of ‘Fight On, Fighter..’ a love song to my wife, @moriahsmallbone.... and to every strong woman around the world who knows your worth and who pushes onward in the face of hardship and uncertainty. (Pre-order link in bio)
After another long, frustrating four weeks, Faith is free from the hospital once again!! Even though we still have to remain in Chapel Hill for a little bit, we're hoping and praying that getting some real rest at night in her own bed, along with real activity during the day not trapped in a small hospital room, will be just what is needed to ramp up the healing process and quickly allow her to wean off the oxygen. .
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These next few weeks will be critical in determining how effective the treatment was that killed off the T cells attacking her lungs and how much healing her lungs will be able to do as a result. .
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Please continue praying her miracle into existence. No matter what the doctors say is possible, my God can do the IMpossible and the unexpected! And no matter what her tomorrow brings, God has already been there preparing the way. #PrayingForAMiracle #IKnowWhoHoldsTomorrow .
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Gofundme.com/lungs4faith .
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#lungs4faith #CFWarrior #FightOnFighter #thefightisthevictory #GodOnlyKnows #strongerthanthestruggle #cfdancer #cfawareness #cysticfibrosis #65Roses #fivefeetapart #cfsucks #organdonation #newlungs #breathofhope #justbreathe #OurHopefulLungsCanBreatheAgain #SiSePuede
‘Fight On, Fighter’.... one of the most personal songs on the record for me.. it was originally called “Moriah” written about my wife.. marriage affords you many insights about your partner, and to watch the way she has battled and faced fear and the unknown over the last few years has been inspiring.. such a courageous woman. and now we leave it as a charge for you....to see the fight you have within come alive! Fight On, Fighter | The Journey.. full episode on @youtube (link in bio) -j
* THE WAITING GAME * With completion of the treatments administered to try and turn things back around, we've now been simply waiting to see if the hoped-for benefit is achieved. We do know the process successfully halted Faith's system from attacking the new lungs. What we don't know is how much improvement she'll have and the amount of lung function she'll be able to regain. .
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She has shown improvement over this last week, and they feel she's stabilized enough to at least play the waiting game out of the hospital. So they plan on discharging her hopefully tomorrow to our Chapel Hill apartment where we'll be required to stay for 2-4 weeks while waiting to see if her lung function continues to improve. .
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She remains on oxygen full time, which we hope to see decrease then be eliminated over these next few weeks. We are also trying to get her set up with pulmonary rehab (pending insurance approval) to exercise her lungs and recondition her muscles. .
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Throughout these few weeks, if there's no improvement, or small improvement but it plateaus, we'll begin talks about listing her again for re-transplant and whether or not that's a route she even wants to take. Depending on how long the anticipated wait for new lungs might be, they would hope to send her home to Charlotte to wait for the call. And, if she shows improvement that is definitively trending upward, they would release her back to Charlotte to move forward with life's plans and simply monitor her progress with frequent clinic visits to Chapel Hill. .
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We are obviously praying for an awesome miracle from the Great Physician and ask again for you to join us in our pleas. Also as you can imagine, this whole situation has taken a very heavy toll on us in all aspects .. physically, emotionally, financially, spiritually .. so please pray for healing, strength, peace, support and wisdom in all areas, that we may press on firmly supported by the love and grace of Christ. #PrayingForAMiracle .
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Gofundme.com/lungs4faith .
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#lungs4faith #CFWarrior #FightOnFighter #thefightisthevictory #GodOnlyKnows #strongerthanthestruggle #cfdancer #cfawareness #65Roses #fivefeetapart #organdonation #SiSePuede
Here is Alexis’ baby daughter’s powerful story.. Fight on dear Raelynn! - “One of our premature twin daughters wound up back in the hospital due to what would be a cold to us. It got bad quickly and she ended up going on ECMO, which was their last line of support. She’s now back on a regular ventilator and no longer having to be a paralyzed after 3+ weeks. She opened her eyes for the first time today in 2 and a half weeks. After hearing #fightonfighter, I thought it was perfect for Raelynn’s story... “
The last time I saw this scene, it was December 19, 2018, as they transferred Faith from Levine Children's Hospital to UNC Chapel Hill for transplant evaluation. Now, two days shy of her six-month Lungaversary (received her new lungs January 14, 2019), she is again being transported from Charlotte to UNC Chapel Hill. We are counting on this hospital stay being MUCH shorter than the one that began in December, and praying the issues can be resolved quickly and effectively so this girl can get on with living!!! We have senior year, cheer tryouts and her final year of competition dance to make sure she gets to!! Please, please, please join me in praying these .. along with many other goals and dreams .. come to fruition! .
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Gofundme.com/lungs4faith .
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#lungs4faith #CFWarrior #FightOnFighter #thefightisthevictory #GodOnlyKnows #strongerthanthestruggle #cfdancer #cfawareness #cysticfibrosis #65Roses #fivefeetapart #cfsucks #organdonation #newlungs #breathofhope #justbreathe #SiSePuede
2018: The words that first come to mind: intense, tested, emotional, anger, frustration, bliss, love, soulful, thankful, miracles.
2018 was one of the toughest years of my life. It started off with an experience I hope no one ever faces (which I will share more about at a later time), to relentlessly fighting to bring my husband home. Next, I was tested & tried, but God had a plan and Jon came home. But, the greatest gift of all came in the form of @dr.kyledaigle .
As many can attest to, sometimes you have to hit rock bottom before climbing higher. That was definitely how I would describe 2018.
There came a time this past year that no one could or would try to handle Jon but me. I reflect back and know without a doubt God gave me the strength & courage to go all in. And when I say no one, I truly mean no one would go near Jon. It was dangerous. It was scary. It was unpredictable, but I knew this wasn’t the time to give up. In these deep, dark days it was my purpose to continue forward and to trust that God wouldn’t let me fall. You might think because I am Jon’s wife he would let me care for him. To be honest, it didn’t matter who came near him, it was all the same.
It was in those times of despair that all I could do was to turn closer to God & surrender. Surrender the uncertainties, surrender the struggles and surrender the pain of life at that moment. In those times of surrender peace filled me as God reminded me that it would happen in His time and to stay focused on the now. It was clear that my purpose was to focus trust in the Lord and that He would use me as an instrument in Jon’s healing. I had to learn to stay open to all possibilities and learn when to say No and when to say Yes. It was in that peace of trusting, believing and surrendering that God had a chance to step in and start the real healing process.
2018 was the year of miracles.
2019 will be the year of transformation.
Thank you to each and everyone of you reading this. I can’t thank you enough for the love, support, encouragement, and prayers. They play such a huge role in this journey. Thank you.
#FightOnFighter @forkingandcountry
#staystrongjonnygrant