Monday, September 12, 2011


My sweet Kate,

We headed north this morning for another visit at Doernbecher's CF clinic.  Your sister came with us and sat in the front (big special treat) with Dad while I sat next to you in the back.  This trip was not so daunting, but there is a heaviness within me from some external circumstances that clouded everything about today.  Trying to separate all the fragments within my head left me feeling physically sick.  Sweet Kate, I only write any of what I write to show you my weaknesses, my hurts, my extreme joy that you are my daughter and my hope in my Savior who is my treasure.

We listened to music much of the trip there, and Natalie Grant's Held came on P*andora at one point.  I feel that the Lord continues to speak to me so much about his very real presence with us.  His faithfulness. We are being held in this day and through it.  A few of the lyrics...

This is what it means to be held...
This is what it is to be loved and to know
That the promise was that when everything fell
We'd be held
If hope is born of suffering
If this is only the beginning
Can we not wait, for one hour
Watching for our Savior... 

 (emphasis mine)
1 Peter 5:10 says, "And after you have suffered a little while, the God of all grace, who has called you to his eternal glory in Christ, will himself restore, confirm, strengthen, and establish you."  Kate, we all shy away from suffering.  It's really a bad word in most circles.  We want to avoid pain at all cost.  But look at what he promises us:  restoration, confirmation, strength and establishment.  He's called us to himself, and I want to be found faithful.  I hope to only ever point you to the one who is writing your story.

There were so many things that were better this time around in Portland.  One, we knew a few restaurants close by so we chose one near OHSU instead of driving downtown.  Two, we allowed extra time and arrived at OHSU with plenty of time to spare.  Three, we located the Doernbecher parking lot instead of trekking across the sky bridge and walking a. long. way.  Four, and this is the great news, we saw that your weight continues to climb quickly!  Never have I been so excited about numbers climbing on a scale than watching you grow at an above average pace now!  I had taken you in last Wednesday to our local pediatrician's office and you weighed 7 pounds 14 ounces.  Today you weighed 8 pounds 6.6 ounces just five days later.  You were at the 3rd percentile for growth last Wednesday and today you are at the 10th percentile!  Yippee!!  Kate, we prayed for your growth.  People asked how they could pray and we asked that they pray for quick, steady growth.  Thank you for answering our prayers, Lord!!  Your overall average weight gain since your first visit at OHSU is 44 grams a day.   The average for babies your age is 30 grams a day.  Above average, my sweet girl!  The doctor was pleased, and the dietitian told us that already your weight to length ratio is above the range needed to keep you in the "safe" zone for long term good prognosis.  The better you grow, the more likely you are to do well long term.

Our appointment was supposed to take about an hour today.  Instead, because of your good growth and because a couple of the CF docs will head south in October to see patients in our area, we bundled more things into our visit today so we won't have to go back to Portland until November!  Thankful.  So, you got a baseline throat culture to see what type of bacteria is in your airway.  All CF patients grow bacteria in the lungs and airway.  Period.  The sticky mucous that will build in your lungs and airway over time is a breeding ground for bacteria.  Nothing to worry about right now, we are told.  Next up we learned about Albuterol treatments that you'll most likely need for the rest of your life.  *sigh.  Those will start tomorrow after we pick up your prescription and we'll be doing that twice a day.  After those 2x daily treatments we'll do CPT (chest physical therapy.)  This will involve cupping and clapping on various points on your back and chest to get into the routine of daily loosening mucous.  Right now there is no medical need for it, but it is a proactive measure. This will take 20-30 minutes each time and the Respiratory Therapist said a minimum of twice a day but three times a day is preferable.  Um, Lord, I homeschool.  I clean my own home.  I have laundry to do.  I must cook meals and feed snacks to ravenous, growing children. Any parent knows the list is long. A little overwhelming, but we will do it!  After a crash course in percussion techniques we waited for the lab.  They drew blood to check vitamin levels, particularly the fat soluble vitamins A, D, E and K which your body has a harder time assimilating.  They will also check your sodium level.  We have to give you extra salt daily because your body doesn't process sodium correctly so we will see where that is at as well.

All those above details only serve as a way to record details.  Typing the words and seeing so many strung together that I never dreamed I would one day type saddens me.  I really have forgotten normal.  This is not a complaint; it is a reminder to me not to hang on too much to this life.  I refuse to be a Christ follower who goes to meet the Creator of the universe and have him ask me why I didn't trust him through the trial.  I do not want him to ask me why I lost faith.  Why I lost hope.  Why I didn't wait for him with expectancy. Why I didn't believe he would bring restoration, confirmation, strength and establishment.  No, I refuse to fall apart during this or future trials, and I imagine this trial is in its infancy, just as you are Kate.  I want to declare and be known as a faithful, held daughter of Christ who walked through fire and came out safely, not because there wasn't pain and suffering in the process, but because I was held through it.  I never have to do this on my own.  Neither do you, sweet daughter. We have an awesome family, Kate.  You have the most amazing Daddy on the planet. He would do anything for you.  We have friends who have surrounded us near and far in prayer and encouragement.  We have wonderful, smart doctors, nurses and other staff giving you great care and giving us great help.  More than any of that, we know the One who fashioned you, Kate.  He is writing your story, and it's so beautiful so far.

1 comment:

  1. Kelly, your faith and love for Lord, paint beautiful colors throughout your love letters to Kate. I am rejoicing with you over the answered prayers for Kate's weight gain and I am so thankful for the privilege of praying for you all ♥
    Sleep well tonight, my sweet friend!