Wow..what a week!

What a busy and stressful week.  Bella had her belly x-ray and her lung ct scan. Even though we had not been informed about needles, and basically had lied  to Bella telling her no needles, and she ended up getting stuck three times she still came through with flying colors. Her lungs are great but her bowels were really stopped up so triple dosing of her meds and she has finally started moving stuff through.  She acts like she feels so much better!   I hate that CF causes such havoc on her little body.

We also found out today that her throat swab results came back all clear...no growths!  WTG BELLA!!!!

Bella is still very much interested in Phantom of the Opera.  I think I am going to try a couple other musicals next week to see if I can expand her music a little more!  I'm thinking "Oklahoma" might be another good one for her to learn to sing!

Just hanging out...rain,rain go away!

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!

Fingers Crossed

We have been in a heavy rain pattern for weeks on end...just when you think it will clear up we get hit with another round of thunderstorms. I don't mind the rain, but I really have my fingers crossed that the rains will hold off until late Saturday. Tomorrow is Great Strides 2015. Bella is so excited about getting to see everyone in their walk shirts! I am so proud of our team. We have currently raised $19,577.00!  That is AMAZING!!  I have a couple more donations that will get turned in tomorrow so that amount will be going up!  I am keeping my fingers crossed that we will be able to have the walk.

 

One of Bella's CF Photo Shoot pictures

Ceramic painting with the Phantom today!

Bella truly loves "Phantom of the Opera".  You have to love and admire her enthusiasm! We act out every scene. This week I have been Christine, The Phantom, Raoul. She has been Christine, The Phantom, Raoul. We have re-enacted the opera so many times (in two days she has watched the movie non-stop) that I honestly don't know who I am supposed to be anymore! Bella literally transforms when she goes from one character to the next...it's great!!!  She switches in the middle of being The Phantom to become Christine so she can sing all the high notes!

Phantom Of The Opera

Bella's newest passion (or should I say obsession) is "Phantom of the Opera".

She really does have a huge repertoire of music in her head..so it doesn't surprise me in the least when after watching it once she knew the storyline..and after seeing it again she knew the melodies, and after three times she was signing along!  I love how her mind works and how her imagination is so free. Seeing the world through her eyes is never a dull moment! 

My little Phantom!

"Look in the mirror"

 Bella finished her Mommy's Mother's Day gift today! (Dressed as the Phantom, of course!  She even sang all the songs from "Joseph and the Amazing Technicolor Dreamcoat" as the Phantom!! Little goose!!)

What a beautiful day!

The kitten's eyes are open now and Bella waves at them every time she walks past the door..or she'll knock on the glass and when MommaKitty looks up she smiles and gives her the "I love you" sign. She tells me what a good mommy MommaKitty is and that the babies are just "adorable"!

Today was a perfect outside day (as was yesterday)  We played and took walks and ran around chasing bubbles. We brought the camera outside today and I handed Bella the remote trigger..she was in charge! 

"I push it like this??"

She kept forgetting to smile...she was too busy telling me that she was going to push the trigger!