Swabs, Scans and X-Rays...Oh MY!!

Great Strides   2015 was a HUGE success!  Our tally as of the day of the walk was $20,197.00!!!  Take THAT CF!!

Tuesday we all went to see Weird Al...it was so much fun!  Bella loved it..it was her first concert!

Thursday was Clinic day.  Bella did great.  She doesn't like throat swabs and decided on the way to the Clinic that she would just wear her mask when they came in to do her swab! We did take her mask off but each time a staff member entered the room she scouted out what they were carrying in to be sure they weren't bringing in swabs. When the time came for swabbing she protested but she made it through!  Daddy did a great job getting her to laugh afterwards!  It's not everyone that can spin two pinwheels at the same time using nose air!  (Love that guy!)  She is up to 38.1 pounds and grew almost 2 inches. She is now 40.94 inches tall!  It did put her BMI percentage into a lower area but that is just because she got so tall!  69% is still awesome!  A few more Scandishakes each week and she'll get that percentage back up!  They were all very pleased with her Clinic results!!  (UPDATE..... WE JUST REALIZED THAT THEY CALCULATED BELLA'S GROWTH TO HER NOVEMBER VISIT NOT HER FEBRUARY VISIT...WHEN RE-CALCULATED HER BMI PERCENTILE IS ACTUALLY AT 81%...MUCH BETTER!!!!!)

Her doctor asked about starting her on Kalydeco.  Our goal since we received her diagnosis has been to keep her levels and functions at their top performance until Kalydeco (or any new drug) became available. So now it's available, but do you start her on a drug that has questionable long term liver function issues, when she is doing so good right now? Do we wait until we see some sort of decline in the levels that we have fought so hard to maintain?  It's a tough decision that Mommy/Daddy have to make. So is was decided that a CT Scan of her lungs will be done first.  It will give them a baseline and they will check to see if she is showing any signs of bronchiectasis. (Keeping fingers crossed that she does not have any early signs.) They will also do an abdomen x-ray to see how her intestinal tract is looking so that they can have a baseline view as well.  So next week we will have the scans and x-rays.  When results come back it will help Mommy/Daddy in making the decision.  CF is such an evil disease...I hate it with every fiber in my body.

Weird Al night!

Giving her "Christine" look. She is still into
The Phantom of the Opera! Silly goose!