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Appointment Update Feb-13

Rachel and Shiloh

A recent picture of my girls. Beautiful sisters! Praying that they have the joy of growing old together!!

Well, we had Rachel’s quarterly check up yesterday.  PRAISE THE LORD!  It was a great check up.  (Although those who understand CF will recognize this next statement…we still hold our breath until we get a clean culture.)

Rachel’s weight was AWESOME!!  Her BMI was the highest it has ever been.  The relief that those numbers provide is amazing.  She still has been eating only so-so most days, so this is nothing short of God’s amazing grace and provisions for her.  She generally hits a high followed by a pretty good low, so I will rejoice all the while trying to remember that she will most likely drop in the next few weeks/months.  It is a HUGE blessing right now to look at my sweet girl and see a bit of chubbiness on her.  We have worked pretty hard to get the weight up and prayed even harder.  Thank you for those who have prayed for Rachel and us.

Lung function was down just a bit, but nothing to be too worried about.  She sounds clear and healthy.  No signs of any trouble.

There was a little rain “forecasted” on our sunny day yesterday.  Every appointment when the dr’s pull her chart they are amazed that she has yet to be admitted back into the hospital since birth.  I read a lot of blogs and talk to a fair amount of people through online CF boards and I can honestly say that I actually don’t personally know of another CF person/child that has not been in the hospital at least a couple of times by the time they are her age.  I KNOW the rarity of the fact that she has not been in the hospital  since she left the NICU!  AMAZING GIFT FROM GOD!  However, they felt the need to tell me that the time “is” coming” and that I need to have a plan of action.  So we discussed the where, and how and the other particulars of what that would look like.  I know it is a reality, but during a good appointment, it was still a bit of a downer.  It was also a reminder that while I felt joy at the check-up, it is the constant reminder again that Rachel is fighting for life and health…even when things are going well.=(

The other kinda bummer of the appointment was after Rachel’s PFT’s the doctor looked at her numbers and informed me that they are awaiting the protocol for the combination study in DDF508’s.  He said that it is too bad, because with her numbers (she is not in the mild category, but rather the moderate- any number under 90) she would qualify for the study, being in the moderately severe category.  Unfortunately, he initially thought that they would allow ages 6 and up to participate.  However, this study will only be for the ages of 12 and up.  BUMMER!!  CF continues to be   a constant reminder that I am so glad that God holds our hand and knows what is ahead.  He is fighting on our behalf!  Therefore, we will rejoice.  The study will be 48 weeks long, and then they will assess the information and data to determine if they can go to the FDA for approval.  That news is exciting!  This study has not shown the dramatic results of the Ivacaftor in the small population of G551D CF patients…but hey at this point in life, we will take any improvement that we can get.  (The second generation of Vertex’s drugs has shown a statically greater chance of making strides toward normalizing the CF persons life.)  Anyway, while we are a bit bummed to not be in the study, there is still great excitement that it is moving forward.

This appointment, while one her Rachel’s best, was also a charge to continue spreading the word about CF.  It is a disease that CAN be cured!!  We are getting ready to formally start our fundraising efforts this year.  CF needs to be stopped!  Thank you for all of those that have helped in the past and prayed for a cure and for Rachel.  The day is coming…where CF is not feared!!  Where those with CF- will have to live life a bit different, but will still get the joy of living a LONG and HEALTHY life!

God is able!



One Response

  1. I found your blog several months ago and enjoy reading it. I, also, have a daughter with CF — she is six years old.

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