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Climbing In God’s Grace and Power

My poor, poor blog. =) I feel bad for the lack of attention that I have paid to it lately.  Not because it has any emotions or feelings, but rather, because it is the way I express and process life which says something.  Probably a strong indicator of just how crazy life has been for us lately.  Fall turned into Thanksgiving, and then Christmas and despite wanting to write and having a THOUSAND things TO write…time has escaped me EVERY SINGLE DAY!! =) Alas, today, I will write.  I will post. I will take a moment to do something that I love to do.  I will reflect on our journey and the goodness of God throughout this crazy life.

So what has kept us so busy…

LIFE!!

Five Beautiful Kiddos!!!

Hope!

Thankful for every part of it, but it has been an extremely busy season for us.

 

My last post was in October.  Funny enough the same time Rachel’s clinical trial began.  I think the trial hit us in a way that we were not ready for.  I am not sure we could have prepared or known the emotional and physical stress that it would create on our entire family.  So silly, we were simply adding two doses of medications daily (for a child that has only known taking medications her whole life).  However, between the doctors appointments, figuring out the fat/eating component and watching monitoring her, it was REALLY A TOUGH couple of weeks/month!!  Then the holidays, our regular at home education and activities, not to mention just keeping up with five kiddos…this has without doubt been the most busy season of our life thus far.  It has also been one of the most amazing times of our lives seeing God’s wonder and provision for our family!!  We are so thankful for the Lord’s grace and mercy upon us these last few months.  At some point when the trial is finished, I hope to be able to write up a detailed reflection of the many, many ways that we have been protected, encouraged, and supported through the Lord’s goodness shared with us by others.

Getting hooked up for the first of 6 ECG's (or EKG's as we more commonly know them as).  Again, she picked one of favorite shirts that her cousin sent her last spring.  It is amazing how these little things bring her so much joy!  Praise the Lord for the thoughtfulness of others.

Getting hooked up for the first of 6 ECG’s (or EKG’s as we more commonly know them as).  She did this every appointment for the first few.  

In the beginning we told Rachel that while there was much that she did not have control over during these appointments, she could choose her attitude much like she chose what to wear.  Kind of funny this particular appointment she chose one of her favorite shirts that our cousin sent her.  It made her smile.  Thank you Jennie!! We praise the Lord for the little things like a shirt to remind her/us of being clothed with the Lord’s strength and power!

9mdM8

Ms. Rachel with her “crazy eye” face to me. Silly girl. Gowned and masked and ready for the next set of tests. Some days have been as long as 10 hours. SUCH LONG days. But we are so thankful that we are not stuck inpatient like so many of our cf friends due to illness.

5nS7G

Sweat test. Rachel has needed to have one of these nearly every appointment. 

Rachel was the most concerned for this test at the start of the trial.  Actually just the mention of a sweat test initially brought her to tears!  However, God’s goodness and grace continue to amaze me.  She does this test at nearly every appointment.  While she still would prefer to SKIP this every time, she grits her teeth, taps her foot and tries to allow herself to be distracted.  Bless her heart!!  I have felt this test and while it is not terribly painful, it is uncomfortable.  The researcher said that it is often different for each person.  Some people are not affected at all, but those that have more sensitive skin it tends to be a bit more uncomfortable for.  She and I must be in that category. =) One of the testing pads (under that blue band) leaves a circle mark on her skin for more than 24 hours each time. Crazy.  The older study patients did not have to do this test, however there is some hope that the sodium chloride levels have a chance of decreasing with the addition of this study drug.  Her numbers started out at 115 (anything over 60 likely delineates cf).  So it will be interesting to see if this number moves across the board for the study.  The drug, Kalydeco (the drug that is likened to a working medication/cure for the G1551D mutation of cf and is one part of the combination study we are in) was able to reduce the sweat chloride levels for those cf patients with that mutation.  It was not successful in the adults, but it will be interesting to see if it will have any impact in the younger patients with less damage??  We can hope and pray!

SO THANKFUL for the best daddy ever!!  He is a cheerleader and encourager.  God has blessed Rachel and our whole family with this amazing man!  BTW Rachel usually blows better pft's with her daddy near.

SO THANKFUL for the best daddy ever!! He is a cheerleader and encourager. God has blessed Rachel and our whole family with this amazing man! BTW Rachel usually blows better pft’s with her daddy near.

 

While I am suppose to be quiet about the actual specifics of the study on public media, I am able to report that Rachel is doing well.  This has been a challenging experience for her in many ways, however, I am continually amazed at her strength and stamina.  When I look at her, I am often in wonder.  God has blessed her with a fierce ability to deal with the things before her, even when hard, while still keeping a cheerful attitude!!  However, I have watched her weariness over the last couple of weeks/months.  We have another longer appointment in about a week and a half. The last appointment she actually ran to her room when I said it was time to go and said she was not going.  =(  Not because it was anything new, or painful, or too difficult.  But just because it was the same stuff…again!  She cried all the way to the hospital, and it broke my heart!  She has done great on the blood draws, but at 10, you get tired of getting poked several times each visit. You get tired of people fussing over you and having to do things you just would rather not.  I sent a desperate text to some of my Prayer Warrior friends to being praying for my girl.  By the time we parked the car, and took a moment to pray, she was ready to climb the mountain before her.   God made it a good day.  PRAISE HIM FOR HIS CONSTANT CARE!!

Working to be brave before the umpteenth blood draw of recent  days.

Working to be brave before the umpteenth blood draw of recent days.

God has been amazing giving us wonderful phlebotomist to do Rachel's blood draws.  THANKFUL!!

God has been amazing giving us wonderful phlebotomist to do Rachel’s blood draws. THANKFUL!!

RgINs

This is part of the LCI (lung clearance index test). Pretty remarkable process and incredible science it seems. I am thankful for medical technology. Sometimes when I think of all that we don’t know I am truly blown away for.the level of things that are able to be measured and observed.

Ironic that the LCI was one of the things we most dreaded, because of the length of this test, and monotony of it, has been the most interesting thing to watch!  It takes around an hour or more to finish each time and it really is just kind of a pain.  She has to sit really still, can’t swallow her saliva, or move her tongue, and has to keep her mouth in a really tight seal around the mouth piece so the air doesn’t leak in and alter the test.  Add to that she has the tightest nose clips I have ever seen (they leave marks on her nose in just a moment or two).    She has a tissue in her hand to wipe the drool off of her mouth.  NOT fun!  She has done great although this is one of the things she still dreads the most. It is also the one part of the trial that we are able to see and observe not being blinded (not sure if we are suppose to know these numbers or not…but we do and we watch them carefully)!

 

So we have crossed over the halfway point on the study at her last visit!!  This next appointment will be week 16 of 24.  We can see the light at the end of the tunnel with appointments, and that is encouraging!!  Only a few more long appointments.

Cystic Fibrosis, and likely any chronic illness is hard because even though you see progress and you experience hope in new therapies and possibilities on the horizon…there is still today.  There are still many difficulties.  I read a blog recently from a young lady that has CF and was profoundly struck with the reality of one of the things she said.

      “People often think in binaries; you’re either sick or you’re not. But with this disease, you’re sick and you’re not. Despite CF’s complications, on the good days I’m just trying to live as “normally” as I can.”  Ali Donahue

The blog was dealing mostly with guilt associated with CF, but I loved the statement that we see cf in binary form.  This is so true.  I do this!  And, the crazy thing is I see the reality and incongruity of this disease before me daily.  So while we are currently on a good path, trying to live as normal as we can, we also feel great struggle in many other parts of trying to manage this disease.  It’s such a mix of both worlds, extreme gratitude, and a heavy burden to keep moving forward climbing the mountain before us.  But…my God… is ever faithful.

Last I wanted to leave you with words of encouragement.  A friend recently sent me this song about being a climber, and I was blessed and encouraged by the words.  Maybe you will be too in whatever struggle is before you.   A sweet friend sent this shirt to Rachel about a year ago.  Rachel picked it out to wear on one of her longer days.  I love that Rachel is learning to rest in where her strength comes from.  What a HUGE blessing for her to call out to her Father in prayer for strength and endurance, AND see that God is helping her overcome this mountain before her.  The shirt says, “I am an OVERCOMER through Christ!”.  May it be ever so~

A dear sweet friend sent this shirt to Rachel last spring.  She choose to wear it on one of her more difficult days.  I was blessed by her spirit of being an OVERCOMER in Christ!

My Climber!!

That's No Mountain for a Climber:

I looked at that mountain that stood in my way
Would this be my last climb, would this be my fate?
My heart beat so fearful, what challenge awaits?
But, strength rose up in me, God's power and grace

Chorus:
That's no mountain for a climber
I know what awaits at the peak
Jesus is there watching over, to see if his help I need
He makes sure that his dear precious children
Don't fall by the trial so steep
That's no mountain for a climber
When the maker of the mountain is standing by me

Bridge:
I beheld all the footprints that had been there before
Up through the cliffs and the rocks til' I could see them no more
And, I wondered what brave ones would challenge such feat
God said "It's the saints, child, that's gone on before thee


http://www.youtube.com/watch?v=_EHEsfr1mes&sns=em
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