Saturday, January 14, 2012

December ETCH Appt

I love that I almost NEVER have anything to write about these appointments.  However, this time there sort of is something to write... but I KNOW it is not an issue.  The thing is, the doctors like to see kids with Cystic Fibrosis in the 50th percentile or above for BMI.  Ashton has never been lower than 49th, and has almost always been around 51st or so.  I my opinion, the 50th percentile rule should NOT apply to her because she is pancreatic sufficient, but they always check it anyway.

At her December appointment, just after Christmas, the nurse practioner that we saw stated that her BMI had consistently dropped over the last couple of appointments, it is not in the 40th percentile,  and because of this we have to come back once a month to keep an eye on it until it stops dropping.  Now this turned on my argumenative "do you even read her chart" radar as I stated that there was no concern becasue she is pancreatic sufficient.  I told her that we were told in the beginning that either you are or you are not, and it does not change.  She let me know quickly that is no longer believed to be the case.  So my next comment was that we should just automatically test annually so that we know what we are dealing with, and she agreed, but did not schedule a test.  I really wished I was with a doctor. 

Anyway, the deal is they are having me feed her a CF diet, which is a CRAZY amount of calories and VERY unhealthy for someone who is not pancreatic insufficient.  Ashton LOVES fruit and vegetables.  She is a dream eater and I do not want to jeapordize that for no reason.  We go back on the 25th of January.  We'll see what happens.  The nurse acknowledged that this is the age where kids hit growth spurts (remember she grew 2 1/2 inches in 3 months) and need fewer calories. 

She shows NO OTHER symptoms of insufficiency, but then I have to remind myself she shows no CF symptoms at all.  We will see, and keep praying, and continue to be eternally thankful for our God's mercy and grace.  I'll update after the 25th....

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