Tuesday, November 15, 2011

Genetic Testing

I took you in to have your blood drawn today to be tested for the specific two mutations that caused your Cystic Fibrosis.  We were told by the doctor yesterday that they almost always find both mutations but not always.  Because your Dad and I both carried a healthy gene and a mutated gene and because you got both bad genes, you have two mutations.  They may be the same or could be two different ones. We will find out in about a month which type you have.  At this point it doesn't really matter. But, there are some promising drugs on the horizon for some small percentages of people with CF that look to treat the cause of CF instead of the symptoms.  Up until this point the progress of science research has been able to identify triggers and problems related to this disease and take a proactive stance against lung damage and digestive issues.  For you this means twice daily Albuterol treatments and digestive enzymes every time you eat.  You have had no respiratory issues at all yet so the Albuterol is just on board for the "if and when."  The enzymes are clearly needed, and your dose was increased slightly yesterday because of your increase in weight (yay!) and stooling patterns.  It was clear to me in the last 10 days that something needed to be adjusted.  All the while you smile, coo and talk.  You are so full of peace and joy! 

I am anxious to know which CF group to put you in, figuratively.  We know that 70% of people with CF have the Delta F508 mutation as their primary mutation so we are expecting that as at least one of the them.  Here's a basic rundown of the majority of people with CF:

At this point, there is no fear involved.  The denial of this disease in our lives has passed.  It has settled in for the long haul.  Today is the only thing I can manage so I'll let God take care of the rest.  I'm so happy I don't know the whole story, but he does.  We're just so very thankful for you, sweet Kate.

Monday, November 14, 2011

Oh his goodness!

Sweet baby,

Today was a good day.  I feel so much peace in my soul tonight, and I'm thankful.  We went to OHSU today, and I had prepared myself for whatever might come our way.  I wasn't sure of a few things, knew of a few, and waited for anything.  Instead, your weight is amazing, and your weight to length ratio is now at the 65th percentile!!!  You were 12#6.8 ounces today.  Those sweet rolls on your thighs, at your wrists, the dimples in your fingers just make me ooze sappiness.  You make me so happy, Kate!  You talked, talked, talked to everything in the room while we waited and then you had quite a conversation with the medical assistant.  She thought you were pretty amazing, too.  :)  Because you are doing so well we get to skip our December appointment and don't have to go back until the end of January!  Yippee!  The doctor did another airway culture to see if the bacteria pseudomonas is present in your airway.  He said he would be surprised if it was present because it is usually eradicated in your age group.  I am hopeful, but if it's there we will start TOBI again.  Even that just doesn't scare me.  Victory!

I so enjoyed this trip.  Coffee on the way out of town, four hours of being with your Dad in the car (always my favorite!), Trader Joe's, a great, quick appointment for you and another four hours driving home visiting with your Dad.  The rest of the monkeys met us at the door when we got home, and we went from blissful quiet in the car with you talking and us listening to Mark Driscoll to the busyness that is our very real life.  It's a happy life, Kate, even with health issues, broken arms and broken legs. We are so fun, right?  Thanks, Lord, that any good in my life is because of your goodness and grace.  I'm so thankful to call you my Savior because when it rains I will praise you, and when life just feels peaceful I'm so happy to say that it's not to me, but to your name be the glory.  Thank you for your kindness today, Jesus. 

May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.  Romans 15:13

Friday, November 4, 2011

Big Girl Panties

Sweet baby,

As irony would have it, you are still in diapers for a couple more years, but I want to share a bit of wisdom with you for down the road.  Here it is: when life is hard, when it feels all roller-coastery or like the Tower of Terror (which you will never hear I have been on because I will never go on it...) you will have to put on your big girl panties and be bigger than you want to be.  You may have to be nicer than you want, more brave than you want, more gracious than you want to be, but you'll have to do it.  You'll have to tell yourself, "Self, life is hard.  A lot.  Continuously at times.  But gosh darn it, get on with it!"  During one day my life can feel joyful, happy, peaceful, and then with one bit of life it can get all cattywampus in my head.  Yes, I choose to laugh, pray, drink coffee, etc. but there is often a battle raging within me to be a big girl when I'd really rather go to bed, cry, still drink coffee and say curse words in my head to the people who bug me.  I digress.  Life is sticky, Kate.  The good stuff sticks and so does the bad, but you have to learn what to keep and what to wash off.  Keep these things:

Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable--if anything is excellent or praiseworthy--think about such things.  Philippians 4:8

Whether it's Cystic Fibrosis that bugs you, or maybe people or just rotten circumstances, I will be there to cheer you on and encourage you.  I pray that the Lord will give you friends that I've had in the past and that God is putting in my life now who encourage and pray and love.  They're the ones who will be there for you no matter what.  And when that day comes when it all feels hard, they'll tell you to put on your big girl panties, and you will, and you'll get on with it. 

Wednesday, November 2, 2011


Well, these last two weeks have been comical (??) and we're going to stick with that perspective!  On Thursday afternoon, October 20, your brother Ben broke his arm while playing on an extra mattress with your brothers.  It's one of those moments that I knew was coming.  Doesn't every mother want to be the fun mom?  I do.  It's just a mattress; they just want to play and have fun.  It's unfortunate that I had been telling them all day that I.DO.NOT.WANT.TO.GO.TO.THE.HOSPITAL.TODAY.  I'm pretty sure I talked in all caps each time I said it.  I even walked out of the room after warning them yet again to be careful and said out loud to myself:  "famous last words."  Yep.  I sealed the deal right there.  Must have been less than two hours later I was having a complete hysterical melt down as I saw Ben's arm and screamed at everyone to get in the car because his.arm.is.BROKEN.  It's not a moment where I passed any kind of spiritual test or became a nominee for mother-of-the-year.  Nope.  Lost every marble in that moment of seeing Ben's deformed arm.  I couldn't get ahold of your Dad.  I was feeling frantic. 

We drove like mad people down our road.  I say this as if anyone was driving but me.  We went to the Peds office.  One look at the arm and we were sent to Radiology with xray orders.  Ben handled the xrays like a champ and we were back at the Peds office with confirmation that not one but both of his forearm bones were broken.  Awwww.  Good times.  We were told to go to the ER where one of the Ortho staff was already fixing someone else and we would be seen by them.  Ben would be sedated, arm would be reset and casted.  At this point friends had swooped in to pick up children, and we had even run into friends *by chance* in the Peds parking lot.  They hugged and prayed for us right then and there.  The Lord's providence just astounds me at every turn.  Off we went to the ER where Ben amazed me with his complete calm demeanor through every part.  Thanking Apple for the ability for Ben to watch Dora or Diego on Daddy's phone.  It saved the day and provided the perfect distraction while we were waiting.  All the staff was assembled, everything was explained, sedation was gone over, and then we began.  Ben looked at Shane while Shane held his face from seeing the IV go in.  Ben watched Shane, got big crocodile tears at one point but never let out a sound.  I'm in awe of this boy.  The sedation took effect, I was sent out of the room with you while they used a mobile xray machine as they reset the angulated radius (the ulna was also broken) and then began casting.  It all happened so fast, and then Ben was left to come out of sedation.  He was looped out of his mind and so funny to watch.  He went off for another xray with the cast on, all looked good, we waited for another 1/2 hour to 45 minutes for the sedation to wear off completely and home we went to pick up children from various friends' houses.  He has done so well and the cast has not stopped him from doing everything he always does.

Fast forward eight days.  Sarah was at a birthday party at a rollerskating rink.  I was having my hair done in a blissful two hours of quiet and adult conversation.  I got a call from Shane just as I was paying and getting ready to leave.  "Sarah fell and thinks she broke her leg."  I just started laughing. "Really?"  That was about all I could get out.  The battle in my mind was between "no way" and "well, everything else keeps turning out differently than I thought, so..."  Off we went to the Peds office again and ended up following Shane into the Peds parking lot.  Sarah was in the back of a van that belongs to the grandma of the boy whose party the kids were at with Shane holding her leg up and trying to console her.  Not to be that night.  Our favorite pediatrician came out to see her in the van, gave us xray orders and we headed back over to the hospital.  Deja vu?  Yep.  Of the most surreal kind.  Our pediatrician told me to call the back line as soon as Sarah's xray was done.  As soon as I called I got the "well..."  I'm really not a fan of conversations that start that way... "...she has a nasty spiral fracture of her tibia."  "Really?"  That was about all I could get out again.  In the meantime, Sarah was in extreme pain and Shane had to keep her leg elevated at all times.  He now has a hunchback...I digress.  We ended up back at the Peds office where our pediatrician splinted her leg (Friday) and told us she had to be seen at Ortho on Monday for a cast.  It couldn't be casted right away due to swelling that is normal for this type of fracture.  Shane went to the nearest pharmacy to pick up pain medication, Ryan and I assisted Dr. S. with splinting Sarah's leg while you laid on a blanket on the ground. 

We somehow made it home through lots of tears and agony on Sarah's part while she was as flat as possible in the backseat with pillows propping her leg up.  That night was so long.  None of us got to bed until midnight and then we were up every 1/2 hour to an hour trying to help Sarah.  The narcotic for her pain wasn't working at all.  We ended up getting a different medication on Saturday and started augmenting with Motrin and at least her pain was mostly tolerable by Saturday afternoon.  Word got around and friends started bringing meals, presents for Sarah, and as always, lots of love.  We got Sarah into a long leg purple cast Monday afternoon at the Ortho office, and each minute is an improvement.  We still haven't had a decent night's sleep due to pain and needing to change positions, but her pain is under control at least.  Really, that's about all that's under control!  I have laughed in my mind so much at how out of control life feels right now, and yet I have so.much.peace.  How is that possible?  I know because I am known.  The Lord continues to stretch us, and it has not felt good, but now we are laughing at the absurdness of thinking we ever have any control over anything anyway! 

So, we now have two kids in casts along with trying to continue with homeschooling and daily treatments for you, Kate, and life in general.  Lord, let us keep laughing.  We will keep trusting you.  You have never failed us!  No more, Lord, thank you!  Plate's full for now.