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!

"He's your man"

Bella says some of the funniest things sometimes.

 Driving her home tonight.."Grammy I'd probably scratch my car if I was driving!" (What? Driving where?) "Oh just through the gates. I'd probably drive into the bushes!" (Remind me to show you how to drive!) "Oh, Grammy..when I am 15 I will take driving lessons!" (Yes you will!)

Playing her HeadBandz game

When I told her I was going to miss her (won't have her until Friday).."But you have Papa, Grammy!" (Yes I do! I sure do love your Papa!) "That's because he's your man!" (LOL! Yes he is!)

"Let's have a dance competition!" (Okay..but aren't you supposed to be having quiet time?) "We can dance quiet!" (Okay!)

Papa was being silly and stuck a piece of chocolate on his forehead. "Grammy..Papa is funny!" (I think your Papa has a few screws loose! (pointing to my head).."Yep!! He's missing something up there!"

Bella and her "horror" makeup

"Am I scary?"

"I put eye liner on my
lips, Grammy!"

 Today she was doing a "video demonstration" on how to apply "scary make up"..I didn't have the camera on but that didn't stop her from doing a complete demonstration, including her own jokes, comments, etc.all while looking in her mirror and applying her makeup.. "If you like this video be sure and "like" it and be sure to 'ascribe (subscribe) to my videos and I'll make more!"


We drove by Rejoice School to see if they had gotten their playground equipment installed (which they have!) She saw the jungle gyms, swings, climbing wall and slide! "Grammy! A Ninja Wall!!" (Yep..looks like you'll be climbing that wall soon!) (Did you see that slide?) "Yes..and I don't think I will like it at all..it's BIG! It will just freak me out!!" (Well, we wouldn't want that!) "That's for sure!!"  LOL!!

Happy Birthday Bella!!!

Five years old!!! I can't believe you are five already!!!
We are so proud of all your achievements! Love you more then words can express!

We had a great week of celebrating!  A small party at the house (Michelle (with Custom Maids), Courtney, Grandma Betty, Mommy and I ) to celebrate her birthday as well as graduating out of swim lessons, dinner at Molly's Landing and Saturday will be the BIG Star Wars party!!  I can't wait for her to open all her presents on Saturday!

Not birthday related, but just some "Bella" comments...
There is a house in our neighborhood that evidently is having LOTS of trouble with their home automation/A/V equipment. The company van that installed the system and is trying to fix it and get it running correctly is literally in the driveway every other day! When Bella sees the van at their house she says.."again?" Or if she sees the van driving around outside the neighborhood she says.."bet they are going to your neighbors!"..well a couple weeks ago when the van was parked once again in their driveway she states.."OMGOSH, Grammy! Their TV is broken AGAIN! Why are they still using those van people? They obviously DON'T know what they are doing!! I would get somebody else!" (I have to agree!)

When she was asked by her Daddy when he showed her a picture of Trump...(Who is this?..)..."That's Trump!" (Okay..what's his first name?) "I don't know...wait...President!"

"Is It The Next Day?"

Painting at Copper Kiln on Thursday
when she was feeling good.

Bella loves SnapChat!

Tuesday morning Bella threw up...that was one of those "first's" for her. (Not a good "first" though). Her pediatrician checked her over and also did a abdominal x-ray. Stomach virus with a partial intestinal obstruction. 

Her nausea only lasted one day but we took things easy Wednesday and just hung around the house playing.  Thursday she wanted to paint so we headed to Copper Kiln. "Grammy, I'm going to paint a shark!" (Cool!) "And maybe a giraffe! Next time I'm going to paint an elephant!!" (Double cool!)  We stopped for fries and milk shakes on the way home. "Grammy I can swallow my pill and drink my shake now!" (You sure can!)  We had such a great day! 

...And then her belly started to really bother her. (I'm beginning to think her Clinic might have read those x-rays just a little differently) That virus/obstruction combination caused a lot of turmoil for her.  Daddy came over to rub her tummy (Bella asked him to come rub her belly). But after he left her tummy started hurting again.  Thursday night she was awake basically all night. Never able to get comfortable, never able to get rid of anything, never able to be out of pain. We walked the floor, rocked back and forth, rubbed her belly over and over. She finally fell asleep after 4:00 a.m.  Friday morning she woke up and asked "Grammy is it the next day?" (Yes it is)  "It's six more days until my birthday!" And then rolled over and went right back to sleep! 

Things eventually starting moving and she was able to get relief. But it's night's like that when I hate CF so much. Jess is so correct when she says how helpless you feel.  It is so frustrating to have to sit and not be able to make it all go away. But Bella fights through it and accepts that this is just how it is. She bounces back the moment she feels good and is ready for the next round. She is such a warrior.  Love her so much.

Bella is right..her birthday is just a few days away. Next week Bella will turn FIVE!!!  She is so excited about her party. Thursday we received her invitation and when Daddy came to rub her belly she told him, "Nanny will be at my party, and my cousins!! And Meme and Pappy! Grammy and Papa got my 'immatations, too! And GrammaBetty!" I guess I blinked and time flew past so fast!  How can that be?!?  How can five years have gone by this fast!! Kindergarten is just around the corner! Our little Precious is growing up!  

"Cheese"!!

A week of MAJOR accomplishments!!

Wow!!! What a week!! Bella has surprised us and made us even more proud of her.

Swimming:

She can now swim underwater the width of the pool in one breath!

                  She let me toss her (not very high) into the air and she went

                   underwater and swam to me. (over and over and over! LOL!)

                  She swam under my legs (standing in the shallow end)!

                  And she jumped off the #2 Shakey step...She is working her way up to being able to jump into the pool!

  Pills:          

Taking her enzymes usually requires opening her capsules and

                  sprinkling her granules onto applesauce or pureed prunes. The

                  enzymes are required for everything she eats and she is

                  supposed to take them prior to eating. Well... if you are driving

                                                            someplace and spontaneously stop for a milk shake on the way

                                                            home she has to wait until she gets home to get her pills

                  before she drinks her shake...sort of ruins the whole 

                  "Spontaneous"  moment. BUT this week Bella not only learned

                  to down her entire capsule quickly through her straw...drum roll.....

                 this morning she popped her capsule into her mouth and just drank some

                 milk!!!! She did it with each of her three capsules!!! 

                 Talk about happy dance time!!!  Now all she will need is

                  her pills and water (which we always have for her) and she can have her

                   surprise snacks, etc.  Plus being able to just swallow her pills will make taking her meds at school so much easier!

Our little Precious is growing up! Love you "this" much forever and always, to the Moon and back, to infinity and beyond!