Friday, January 29, 2016

Quick Clinic Update

I am so grateful for your outpouring of love and concern for Caleb and our family this week. Here's a quick update from yesterday's clinic appointment.

Overall, the news was good. Caleb grew a little taller, but his weight stayed the same. After several unsuccessful attempts, he finally did well on his pulmonary function test (a test that requires some serious technique!) Blood work was traumatic as usual, but over quickly thanks to the expertise and impressive focus of the nurse. Results of his liver function test and throat culture will be ready sometime next week. We're praying for good results on both!

Because Caleb is now six, he will begin taking the adult dose of Kalydeco (twice the dose he has been taking). We will continue to monitor his liver function with the increase, although we are not expecting any problems. He will also add Prevacid daily to address what appears to be mild reflux (and may be contributing to his periodic cough).

We are thrilled with the results of his chest CT. Lack of bronchiectasis is wonderful at his age. His cough has completely cleared and we have ten days left on Augmentin. If he develops another cough within the next two to three months, we will most likely proceed with the planned admission to determine what, if anything, is growing in his lungs that might be causing the cough. We are prayerful this will not be necessary, but we know that with CF, a hospital stay of this sort is inevitable. We were hoping Caleb would be older before his first admission, but ultimately want him to have the very best of care. We trust our doctors to guide us in the right direction.

Thank you for your prayers, support, love and encouragement. You have no idea how much we appreciate you! Ephesians 3:20-21

Wednesday, January 27, 2016

The Mountain Moved!

"I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, 'Move from here to there' and it will move." (Matthew 17:20)

I can hardly wrap my mind around the events of the past 48 hours. On Monday night, I requested focused intercession from family and friends on Caleb's behalf. Over the course of the next day, I received messages from countless people, telling me they would be praying with us at 8:30 on Tuesday night. I heard from family and friends across the globe. My post on Facebook was shared almost two hundred times (maybe more). I heard reports of complete strangers sharing our request among their friends and family, one woman contacting Bible study members in 61 different countries! My cousin Andy sent a video from India of his 45 no-longer-orphans praying for Caleb in their native tongue. Powerful!

I have also heard from friends for whom this request deepened and strengthened their own prayer life. It certainly had a profound impact on Darrell and I as we prayed together. This outpouring of love and support from brothers and sisters in Christ all over the world has been one of the most humbling and awe-inspiring moments of my life. What a blessing! What a privilege!

And our mountain moved.

Results came a full day earlier than we expected. Praise the Lord, our time of waiting was cut in half! Our doctor called with results this afternoon and they were better than we expected. So good, in fact, the CT tech marked the results "normal." To the trained CF practitioner's eye, Caleb has only mild peri-bronchial thickening, which is unchanged from last year's x-rays. This in itself is amazing, but it gets better. Caleb's CT scan shows no evidence of bronchiectasis, the permanent scarring of the airways that is part of the natural progression of CF lungs. His doctor said that at age six, it is extremely good to see no signs that this process has begun. She doesn't know if it's the result of his milder CF genotype or last year's addition of Kalydeco, but she is very encouraged by what she didn't see on his scan. No progression! No permanent damage! No hospital! Praise Jesus!!

We prayed for God's miraculous healing and praise the Lord, that's exactly what we got. These results are phenomenal! We stood firmly on His promises, raised our voices as one, and asked the Lord to go before us in this battle. Today we have seen His deliverance and I am overwhelmed and humbled by it.

This experience has left a permanent mark on me. I will never cease to be grateful for your generosity in sharing our request and joining us in prayer. Prayer is powerful, especially when we are leaning in to God's perfect will for our lives. I believe with all my heart that He touched Caleb's lungs last night. Thank you for being part of our miracle. My cup is running over with joy and gratitude tonight!

Wednesday, January 20, 2016

Just like that

Forty-eight hours ago Caleb seemed perfectly fine. No cough. No congestion. Today we are beginning antibiotics for the third time in as many months, a CT scan of his chest has been ordered by his doctor, and depending on the results of that scan, we may be looking at a two week hospital stay in the very near future. Our CF community optimistically refers to these "planned admissions" as "tune ups" but I have only ever seen them as something to avoid at all cost.

Today is Caleb's birthday. Instead of a party and balloons and presents and family and friends he will be doing extra treatments, taking extra medicine, and going to bed extra early. He will miss at least two, maybe three days of school this week - a fact that he is extra ticked off about because Friday is the one hundredth day of school and if you've spent any time around kindergartners, you know that's a VERY big deal.

This is what it means to be a CF mom. Life turns on a dime. Just when you take a breath and forget to worry, the rug is pulled out from under you yet again. You look around, dazed, wondering how you could have been so careless. You let your guard down, relaxed your vigilance, and now you're paying for it. You wonder if you can patch the holes in the boat one more time or if this is the time you finally sink beneath the waves.

I refuse to live my life always bracing for the next setback. I refuse to give in to the constant fear that gnaws at me every waking moment. I will not be shaken. I will stand firm and I will wait on the Lord.

I cannot do it alone. I count on the support of every one of you. Your love, your prayers, and your words of encouragement fill my cup and form my shield on days like today - days when I feel my resolve and my hope slipping through my fingers like sand.

Please pray for my sweet boy. Pray for his total and complete healing. Pray the CT scan looks better than they expect. Pray we don't have to "check in" for an extended stay at Hotel Germifornia. Pray for a calm and courageous heart, that through it all, I can still be the mom BOTH of my boys need me to be.

Thursday, January 14, 2016

Happy Birthday, Caleb!

I can't believe Caleb will be six years old next week. What a gift he is! Funny and full of life, he loves people. He draws them in with his big blue eyes and deep dimples. His world is expanding at an incredible rate as he encounters new ideas and experiences. His hardships are "just another day in the life" for him and he bears it all (mostly) with an acceptance that belies his age.

Caleb's birth opened our eyes to a world we did not know, a world where every moment counts and each day is lived with intention. We have the privilege of truly understanding what matters most to us and we try not to take anything for granted. It's hard to remember what life was like before Caleb arrived on the scene. It is sometimes messy and often chaotic, but our home is full of LIFE and I wouldn't have it any other way.

Little did we know, we gained an entire family the day Caleb was diagnosed with CF, a community of strangers who instantly became forever-friends. The CF Foundation is more than just an organization of faceless names working toward an objective goal. These people are family. Their mission is our lifeline. It's personal. Their tireless commitment to a cure for CF fuels our hope and it is a privilege to help in their efforts, no matter how great our small our contributions.

We can't wait for Great Strides this year! Our team website is already up and we are recruiting walkers (register here)!! Please join us if you can - May 21 at Georgia Tech. There is no registration fee and no minimum donation. If you can't walk with us but would still like to support Caleb's Caped Crusaders, you can make a donation using this link.

Our team t-shirts are ADORABLE this year and we will once again be selling them as a fundraiser. Let me know if you want one. Team members get theirs for FREE!

What better way to celebrate Caleb's life than to support the organization that is working so hard to save it? He asked me last week if he would live to be as old as grandfather (who lived to be 88). Because of the work of the CF Foundation, because of the commitment of countless scientists and medical professionals, and because of the generosity of private donors like you, I could honestly answer, "It's absolutely possible."

Check out this video staring Caleb!

CF Sucks

Gunnar Esiason posted a blog on the topic of social media privacy last year and it has me rethinking the level of detail I include in ...