I Need A List

Waiting to go to doctor's

What a week!  Bella felt terrible this week..fever, sore throat, headache, earache..Picked her up early from school.

Doctor visit Wednesday showed she was fighting something (elevated white blood cell numbers) so it was a wait and see situation to see what would transpired over a 24-48 hour period.  Sure enough..after a sleepless night for Mommy and Bella, we took her back in today.  Her ear hurt, her head hurt..she was not happy..She actually started asking to go to the doctor about an hour before her appointment!

Fever broke..so we made a
Toilet paper roll Jack-o-lantern!

      But this time Bella wanted to be sure and not forget about everything that was hurting..."I need a list!"...so we made one!  When we arrived at the doc's office she handed the nurse her note we wrote. She read it over and said to be sure and give it to the doctor.  When the doc came in and asked what was going on Bella very quickly walked over and handed her her note. The doc read..."left ear hurts..then my right ear hurts..hurts back of my ear and neck,  head hurts..hurts/stops/hurts/stops..my ears hurt when I burp..jaw hurts..inside cheek hurts right here and write down my ear hurts".. She took a good look in her ears and her mouth! Prescribed antibiotics for her ear infection and asked if she could keep the note!

Bella did my make up!

Boo!!!

Hopefully she will be feeling much better by tomorrow.
She has not liked missing school.
She misses her teacher!

We made a ghost when her head
and ear stopped hurting!!

Just a few Bella-isms:  
"Grammy..why are the trees still green? It's Fall. We made Happy Fall hats, too! Aren't they suppose to be yellow, red and orange now?" "It's Fall aren't they suppose to be falling now??"  (It won't be long before they turn and fall)

Friday was wear orange day and although she didn't go to school she wanted to be sure and wear orange..so we picked out a shirt we thought looked orange until daddy sent his picture of his orange shirt (he is her twinkie on Friday's).."Grammy I think there might be something wrong with my orange shirt...it's pink!" (Oops! It was sort of dark in your room when we picked it!)

"Grammy?" (yes?) "Did you know I have an ear infection?" (Ahh..yes..I went with you to the doctor!) "Okay..I just wanted you to know!" (I know. I'm sorry, too) "I love you, Grammy." (I love you, too.)

Learning

School pictures came in!  I love her little smile!

She was singing me a song she learned at school yesterday. I asked her what was the one thing she loves about school..."Learning! I love learning!!"  
We practice her site words and have fun doing her homework together.  She is trying very hard to sound out letters to be able to read. Her main goal is to learn  "writing in cursive and reading!"
LOVE YOU TO THE MOON AND BACK..TO INFINITY AND BEYOND!

Love you "Harley Quinn!"

She does her own make-up! LOL!

Today I got to hang out and dance with Harley Quinn!

  Tonight The Blacklist starts back up..she was disappointed that she won't get to watch it ..school night plus it doesn't start until 9:00 and she is sound asleep by 8:00!  But I told her I would keep her updated until she could watch it on Netflix with me!

My Belly is a One

"My belly is a one right now.".... I had to think a moment when Bella told me that...why was her belly a one? And then I realized what she was explaining... I'd asked her how her tummy was feeling.  It hurt today (Wednesday)..barely ate breakfast, didn't eat lunch. She laid down in Nurse Ginger's office during recess and Mrs. Kornegay said she spent a long time in the restroom. So at the end of the day when I picked her up and asked her how her tummy was feeling she was describing the "One to Ten Pain Scale"

 As the afternoon progressed she moved it to a three but back down to a one.    She said when she laid down in the nurse's office her belly was a five because her face was like this ..and made a very sad face.  She told me when her belly was "really bad like when we stayed up way late until all night was gone..and daddy rubbed my belly...that was pwobably (probably) a ten because I cried."

What five year old knows what a Pain Scale is? And what is so sad is that she knows the levels.  

I HATE CF.

Bella loves taking the Jeep
and it's her job to unlock it! 
(she has her "estimating" cup
..it's a homework assignment)

 

Ice cream picnic! She wears it well!

 At last we know who friend "Four" is!! Bella kept telling me it is was sort of like "Burkley's momma's name Kelly but not Kelly"..so I tried every combination I could think of but it was always "no..that's not it"..so today we found out (via a birthday party invitation) that her name is Elianna but she is called... "Elli"!  Welcome Elli to the circle of friends!  LOL!

A footnote to this week's blog...a certain audio/video van was back in the neighborhood...working once again on a certain house...Bella said.."oh no..not again!! Those poor people. "

We Love Negative!!

Bella's swab tests/cultures came back with negative growth!! Happy Dance time!!

Another week of school has come and gone and Bella is still excited about it! That makes us all very happy!  She loves learning new things! She is continuing to make new friends and just loves her teacher and nurse!

She has homework now every night..just 10 or 15 minutes worth..but we sit down right after school and have a snack and get it done before any playtime.  

She's had some belly issues this past week. Increasing enzymes created a bit of a backup, but she has weathered this storm like a champion. Things are moving and she is feeling much better. 

We spent some time Wednesday baking a giant cinnamon roll out of pizza dough...not only fun but VERY tasty! 

Getting ready to bake!

Step one..pizza dough!

Ready to bake!

She is spending the night tonight...first time since school started! She was sound asleep by 7:45! Learning is very tiring. Learning while struggling with a week long tummy issue is tiring (she even told me that it makes her extra tired). Love her so much!

Butter spread..now time
to sprinkle with sugar and cinnamon!

Clinic Time!!

All I can say about today's CF Clinic is WOW!!  Bella did SO good!!!!

Checking blood oxygen

She has grown an inch and more importantly has gained 3 pounds!!! When the nurse was through taking her measurements she asked if she could please do her swab test first..."because I don't like swab tests so I want to be done early!"...And so they brought out the swabs and she sat by Daddy, stuck out her tongue and said "AHHHHHHH!" and it was over with! She got teary-eyed but a couple "jelly fish fist bumps" and she was fine!

Big breath and BLOW!!!

Then came the PFT'S (Pulmonary Function Tests) and she was ready!! Nose clamp on and apparatus in hand she blew 114%!!!  She was like a little tornado and blew all the leaves off the tree!

Her blood oxygen level is 100%!
Her BMI was 82% (up from 76% 3 months ago)

She carried on conversations with all of the Clinic staff...telling them all about her new glasses, how she can swim underwater "from the deep end to the shallow end of the pool with one breath", that she wants to be an American Ninja Warrior, about Kindergarten, about her school. She told them all about Mrs. Kornegay, Miss Ginger (school nurse), that she has 8 friends now and knows all their names "except for friend #4 that is in another Kindergarten class, but she is my friend!"

We have samples of a new chewable vitamin (she is getting a little tired of the liquid type) and she really liked the taste of  them.  We will be increasing her enzymes again..1 capsule for every 5 grams of fat (instead of 8 grams)..hoping to help her gain more weight and hopefully keep her intestinal tract moving.   She was ready for a blood test, but that won't be until December.

The staff was so very excited for her and how well she has done since starting on Kalydeco.

Just Harley Quinn and The Joker!

We couldn't be happier on the results today and Bella was VERY proud!

Take THAT CF!!!!  You ROCK, BELLA!!!