Fingers Crossed!

Today Bella received her new CF medication, Kalydeco.  This drug is designed to basically unlock her cells and allow salt to be processed, thus thinning the mucus she secretes. If the mucus is thinner it will not plug up her pancreas, lungs, and other internal organs. Bella's CF mutation puts her in the 4% of patients with her mutation that may benefit from Kalydeco. (Approximately 1200 patients in the USA with this same mutation.)  Kalydeco isn't a cure, but as some physicians say.."Kalydeco is to CF like insulin is to diabetes; It is not a cure but it leads to a better quality of life."  We will have to watch her closely for adverse reactions, but we have our fingers crossed that she is able to tolerate the medication. This is a very important step. Of course we haven't mentioned to her the fact that she will have to have blood taken every three months during the first year of taking the medication (and once a year from then on).  Let's just get past the initial steps and making sure she is able to tolerate it!

Bella had to wait until the end of the day to swim (we had to wait for her new meds to be delivered to her house)..but once we got to the house she was ready to get wet!  She swam the length of the pool underwater with one breath today! Plus she got to swim with Papa today. He even smiled and opened his eyes underwater with her! Needless to say she was ecstatic!  She swam the width of the pool to Papa twice!

Today we were so excited about her getting her first dose of new meds and playing with all her toys at her house that we totally forgot about her vest therapy! We were just about home (made a Sonic run for tater tots!) when I realized our error! (Bella!! We forgot your shake-a-booty vest treatment this morning!!!) So we did a turn around and headed straight back to her house, picked up the vest and did her treatment as soon as we got home. "Guess we got distracted this morning with my toys, Grammy!" (Yep!!)

Just snuggling with the Precious!

A couple more "Bella'isms":
"Papa? What are those red spots?" (Oh..those are little capillaries that break and you get red spots. )"Oh..well I sure hope I don't get those things when I get old!!!"

Papa covered a can of cashews with plastic wrap and Bella saw it.."Grammy?? What happened to the can?"(Guess Papa covered it because he couldn't find the lid.) ...now her expression was EVERYTHING as she rolled her eyes, did her hands out and had a 'DUH' expression "Grammy...it's on the BOTTOM of the can!!" (LOL!! Well you better go show him)..taking the can and walking over to him..."Papa!!! The lid is on the BOTTOM!!" [holding the can out and shaking it slightly]..guess he'll remember to look next time!! LOL!