Clinic

There are roughly 100 accredited Cystic Fibrosis clinics in the US.  Sienna goes to the Asthma and Allergy Specialists in Charlotte where we see a team of four: her Pediatric Pulmonologist, RN, Nutritionist, and Social Worker.  We are thankful for such a great group as they have eased our minds and given us nothing but optimism since learning her diagnosis.

Si had her second clinic visit yesterday.  I had been anxiously awaiting this appointment since her recent elastase test indicated we would likely need to start pancreatic enzymes.  Her RN did say last week that her body was making a "moderate" number of enzymes, so I figured it would all come down to her weight gain.  Needless to say, I was eager to get her growth measured.

We couldn't have had a better appointment!

Our little chunkster weighed in at a healthy 12 pounds, which is in the 90th percentile for all babies her age!  This was a gain of over two pounds from her last appointment.  She also grew an inch and a half in length, now measuring 22 inches.  Her CF team was thrilled! 

Weighing in!

We learned that Sienna's pancreatic levels were 124.  Over 200 is normal and under 100 is pancreatic insufficient.  We are in the gray zone.   Since she is clearly gaining weight fine,  her Pulmonologist was comfortable holding off on enzymes at this time.  

We also found out that her chest x-rays were clear and her vitamin levels looked great.  I loved the positive news!  

The only hiccup thus far is that the hospital that drew blood three weeks back sent it in for the wrong test.  We already know she has CF, so the test we needed was to identify her second, rarer mutation.  The test the hospital ordered was the one used in the newborn screen.  Thankfully, our RN followed up and caught this error right away.  He contacted the lab and confirmed there was enough blood remaining to run the correct test.  There are over 1800 known gene mutations that cause CF so it may be difficult to pin point the second gene if it's an extremely rare one. I believe this test is looking at the most common 100 mutations.  We still have a few weeks to go until we hear back on these results. 

Our next clinic appointment is in one month.  Wish us a healthy August!

Aced that clinic visit!