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Rachel’s Appointment 3/12

We took a few moments to watch a new hospital building going up.  Pretty cool!

We took a few moments to watch a new hospital building going up. Pretty cool! We had to park on the top floor of the parking garage.  Kinda felt like a field trip watching the workers.

Rachel’s appointment was a pretty good one yesterday.  Although, I was beyond exhausted last night to even think about blogging.  CF check up’s days are emotional each and every time, even if there are no apparent issues.  It all comes down to the fact that the clinic is a reminder that you are doing battle everyday for life and breath.  Clinic certainly makes this mama pretty weary.

We spent quite a bit of time with the respiratory therapist (RT).  Checking her vest for size, and trying to learn new things.  The RT is one of Rachel’s favorites.  She is fun, a bit goofy, doesn’t mind our kidding around, and has been very helpful to us over the last 9 years.  She does not mind my myriad of questions, and my constant prodding to see what more we can do.  Also, we chuckle nearly every time because when Rachel was little she would NOT do the sputum culture (they stick a swap to the back of their throat to gather the bacteria present and culture it).  Rachel would cry and fuss and scream when she saw this very lady.  I would literally hold her down while she retrieved the culture.  It’s fun to talk about how far Rachel has come in just that little part of the clinic visits.  Rachel of course smiles, and blushes a bit that she was “so remembered”.  =)IMG_9593

Rachel did her pulmonary function test.  Although we were really hoping that all of her hard work would pay off in an increase in her pft’s…her numbers actually dropped by 5 points.  =( Every time I tell myself that these are just numbers, but there is still something to these numbers.  I have long ago stopped comparing Rachel’s to others her age because I understand that to be futile.  (There are many her age that have numbers in the hundreds.  Some even 120’s.  Rachel’s are usually somewhere between 80’s to maybe a 90 on a good day.)  Anyway, as soon as the doctor came in to hand us the paper with her pft’s on it, Rachel was pretty interested in seeing it.  =)  Although…it was certainly “greek” to me the first 30 or so times I looked at it, Rachel still tried.  There are A LOT of numbers on there predicted, percents, best, actual, fev, fev1, fvc…there are more than 11 different rows of information and a bunch of columns.  Rachel quickly looked at me to see how she did.  Sadly, it kinda put a lump in my throat.  I told her she did great!!  Her hard work is paying off, but just not in the numbers on the paper!  Her face quickly fell.  I tried to hide my frustration, but it certainly was a reminder that even when you are doing all you can do to battle against this disease…it still is working against Rachel’s body each and every day!  The hours of breathing and vest treatment daily, the extra treatments with her flutter, the time she spends in the gym 3 times a week working out (and having fun), I KNOW are doing her good.  It just did not show it here.  I was also a bit frustrated with myself that I put that carrot out there for her.  I truly though that if she (and I) only worked a bit harder doing all of the “stuff” to manage cf that we would see an increase…if only a point or two.  The truth is, the working hard may only be seen in that she feels better, or can breath deeper.  Or possibly even that she will have longer periods of wellness.  Despite my frustration…I had to remind myself…THAT IS ENOUGH!!   Those are blessings that we are working for and that  numbers don’t mean much!

 

Thankfully the doctor put my mind to ease a bit.  While it was a drop, she said she wasn’t overly concerned at this point.  (Sometimes when they see the downward “trend” they start to look at hospitalizations.  Especially when there is no apparent reason for the loss. We will pray and wait to make sure there are no new bacterias in her culture.  Because it was a Wednesday afternoon, the cultures won’t be back until sometime early next week.)  The doctor asked many questions about Rachel’s asthma component to her cf.  Although we do not see it or hear it and I am not sure that Rachel even “feels” it.  We definitely know it is a big player in her health.  It is clearly evident when her numbers are in the 70’s without asthma medication!!  (Praise the Lord for medications!)  There was some thoughts that she might need to double that medication due to inflammation possibly represented in those pft’s, but wee will have to wait and see.  One bright point, the doctor said that her growth changed the parameters slightly, so the 5 points is not quite as significant because of her little growth.  She said we will just watch and make sure that it doesn’t drop any more.  While that sounded good…a bit disheartening when when you are doing all you know to do.  Really, what do you do???

You take a deep breath and are reminded that God is ultimately in control…and you gratefully lay your burdens AND your child at His feet!

Isn’t that what He wants of all of us anyway??  So, I guess I praise Him for the constant reminder that cf brings into our life in that regard. =) He is good!

High points of the visit.  Rachel is well!!  Lungs sound clear.  Weight is up.  Grew a little bit (there chart half less than the endocrine office from last week, don’t know how that happens?? Oh well at least there is growth!).  We were able to learn some new breathing, huff coughing technics.  Our favorite RT had some new gadgets to give to us.  Rachel loved a new airway manometer that the RT gave her.  She was showing everyone how it worked when we got home.  (It challenges her to do her flutter in such a way that helps her to control her output of air at a certain level.  SHE LOVES challenges!  So it was perfect AND she felt like it was a treat. =) Her love language is gifts…even if it is only a new medical device.) Oh, the little things in life.

Here are some of the treats that we came home with yesterday (minus the green a cappella).  Thankful for new "toys" to help with cf!

Here are some of the treats that we came home with yesterday (minus the green a cappella). Thankful for new “toys” to help with cf!

Oh, I almost forgot.  One exciting thing!  There is a drug that went to the FDA at the end of last year.  I asked the doctor if they have heard any news on when to expect results.  She said they should be out in JUNE!!  How exciting.  Unfortunately, I was also reminded that the trials only went down to the age of 12.  AND, they have to pass all of the rhetoric from the FDA.  Also, Rachel will turn 10 in July.  TWO YEARS short of being able to qualify for that drug.  They will run another study (and actually I need to check when and how that process is going), for her age group shortly after that the doctor thought.  This mama will definitely be fighting, working, praying for a new medicine to combat the effects of cf.  The doctor gently reminded Rachel that while these new medications show some great promise, it will be up to her to be as healthy as she can be to be able to fully benefit from them.  It doesn’t look as though these new drugs will repair damage, but rather keep additional damage from occurring.  She needs to be her BEST to benefit the most!  Basically, hang in there, but keep fighting the good fight!

Thank you all for the prayers and encouragement.  We are blessed and uplifted by you.  As we have begun our Great Strides fundraising push for this year, we are reminded that we could not be THIS close to a working medication for Rachel without you.  While it will not be a cure, it has the potential to significantly change the path of CF for us and many others.  This is because of YOUR generosity, and wiliness to give towards our girl’s life and fight!!   There really are no words to express our heartfelt gratitude…but we say it anyway, thank you from the bottom of our hearts (and lungs)!

In His Grace and Strength~

 

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