Monday, November 12, 2012

Quick doctor's visit update

Lauren went for her big appointment on Tues.  She's doing well.  She weighed 11.29lbs (with clothes on), and was 23 in. long.  She's still in the 10th percentile for weight, so they've changed the way we mix her formula so that she gets more calories.  They also added Xantac in to her drug regimen.  She also had a routine throat culture done, her first Synagis shot, and blood work.  It was a long morning!  Lauren was quite the trooper through it all. 
I was really anxious about the blood work.  I have heard that sticking infants is very difficult, so heard many horror stories.  Luckily, that wasn't our experience.  They did have to stick her twice, but that wasn't because they missed her vein, it was because the one they hit was a slow bleeder, and they had to fill 3 purple cap tubes.  If they wouldn't have stuck her the second time, we probably would have been there 20 minutes.  Instead, we were only there maybe 5.  Lauren fussed when they put the turnicate on her arm, but as for the actual stick, she didn't even flinch...that was probably because my job was to dip her binky in sugar water, and she loved that!
We should start hearing back from the routine blood work (cbc, metabollic panel, vitamin levels) this week.  We aren't anticipating anything out of the ordinary for that.  It should be a baseline for her.  The genetic testing will probably take 4-6 weeks to get back.  Once we know the mutation(s) she has, we can get an idea of the severity of the cf.  The drug companies are also tailoring drugs for mutation specific cf cases, so will know which drugs she will be eligible to take.  Although, that won't start until age 2 at the earliest.  All of these drugs are so new, they haven't yet been tested in the infant population.
Thanks so much for your prayers!

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