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Today’s Appointment

Getting ready for the blood draw.

Papa making the time fun. Showing her how to hide her eyes so she doesn't see the needle coming.

Well today was a cf appointment.  As much as I dread these, I am always a little glad that they are done for another 3 months (praying always that it is a healthy 3 months).  The hard thing is that we still have to wait another week to hear back on her cultures =(  It leaves a little bit of anxiety in this mama’s heart until we hear that nothing new is growing in the lungs.

You may be asking what her cf appointments consist of…well, first of all, in almost 5 years we have never gotten out of there in less than 2 hours and most of the time closer to 3. Ick.  Long day (and they don’t ever have morning appointments-those are reserved for inpatient hospital care.  So we are thankful that we haven’t had any of those, but the appointment has been during nap time every time.)!  We do the normal stuff of weighing and measuring growth (sometimes I have been known to dress her in double layers to add weight).  Once that is done she can go to the bathroom because I fill her up with water right before we go…add the weight-plus it helps to be hydrated with blood draws. Then we check oxygen status and the dreaded throat culture.  Once that is done she is a little more at ease.  Next we head to the room to get our pulmonary function test (pft’s) done.  This room eeeks me out a bit because every cfer goes in there (germ city even if they wipe down stuff).  Today she did okay.  She is still learning the technic.  Her numbers are still pretty low, but…she is learning still so we will pray they are not accurate yet.  After that we talk to the nutritionist (forever sometimes =).  Then we talk to the social worker about any concerns we are having.  They want to know that the high cost of cf med’s aren’t sinking us,=) and how our insurance plays out financially. THEN we usually get to see the dr.  It seems to take forever sometimes.  Rachel is always hungry, thirsty and has to go the bathroom at least 3-4 times. I have to laugh.  Today after the talk with the dr we had to then go to the lab to get her vitamin levels drawn and an urine sample.  PAPA WAS THE HERO TODAY!!!  Since we were there forever, he called when he got off work to see if we were still there.  I told him we were just getting ready to go do blood draws, he informed us that he was at the hospital trying to find a parking spot!!  My hero!!  Rachel ran to him when she saw him walking down the hall.  Every time she has ever done a blood draw for me it is a kicking screaming awful event.  Both of us leave feeling tired and worn out from the energy expended.  So this was a really nice sight for me to behold.  I videoed how well Rachel did with Papa today just because I can hardly believe the difference the security of her Papa makes for her.  It is incredible and a blessing from the Lord to have such an awesome husband and father!

After the draw…last stop to pick up new medications at the pharmacy.  Then HOME!!! =) Yeah, now we wait to hear next week that we have a clear and clean culture and that all of our blood levels are where they should be at.

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