Eye of the Tiger!

I know I post a lot of things about Bella..pictures, videos, info about Cystic Fibrosis, etc.... but I have yet been able to capture those special Bella moments when she is just being herself..her expressions, descriptions of things..those upturned eyebrows, that little "look" when she is about to go off in some direction about something she just saw or heard or is about to go into her lengthy explanation about something of interest.  She is so animated when she is in full Bella-mode!  She pours her heart into things and it is so cute to watch her. Sometimes we can't help but laugh!  Other times I just want to hug her!! Some of the things she says amazes me at times...such as "I'm glad you are teaching me to write things, Grammy, because sometimes I don't do it right and no one tells me now to do it properly!"  Properly! She actually described it as Properly! Lol!  Today, for example, we were just sitting and playing a "Walking Dead" trivia game...yes, she loves TWD!...anyway... The question I read to her was related to Carl and who treated him after he was accidentally shot...she said...."Hershel saved him!" I told her that was correct that Hershel was a veterinarian before the problems started with all those silly zombies but he was now good at saving people! She thought about that for a few seconds, looked at me and said..."Hershel is sort of like God and Jesus because he saves people, too!"  She got an extra hug!

Bella picked out the new candle for Papa

She helped me decorate...well..she re-decorated for me...I put out Halloween and Fall stuff Wednesday and Thursday she rearranged the majority of it!  Today we went shopping for pillows and extra things. She had fun placing them in JUST the right places this evening before she had to go home!

"Eye of the Tiger"...I think I lost count of how many times we listened to, sang along, danced to, boxed to, watched the video of, etc!  She cracks me up!

Bella had special teachers today...we did her normal stuff and then Lynette and Ryan came over. Lynette has agreed to teach Bella Science/Health this year and Ryan wants to teach her boxing, kickboxing and self-defense. She was a little hesitant about the boxing, but she got into it eventually!  Of course she couldn't wait  to show Daddy her boxing moves! "Daddy can't box with me because he is sick, but when he is better he will box with me again!"  Lynette told her about the heart today. Bella had to inform her about Daddy. She is worried about Daddy..told Lynette all about how the "doctor is going inside Daddy but doesn't want to hurt his heart so they will be very very careful".  His biopsy is Wednesday and I promised her updates. She said we are going to take care of Daddy together on Thursday!

Just being silly...heading into town with Papa to do some shopping!

Cinderella...CinderBella!

The kids took a little vacation weekend run to Branson..Bella talked about it a lot yesterday! I had given her some spending money because she wanted to get Mommy and Daddy something. I told her their hotel had an ice cream shop so she was very excited about buying them all ice cream! Of course they didn't have her favorite (and her Daddy's favorite) mint chocolate chip..so she settled for chocolate with "yummy sprinkles"!

School work went very well yesterday and today! Bella tried her hand at painting on canvas this week. She has wanted to go to Pinots Palette or someplace similar..unfortunately most places don't have 4 year old painting classes...so Grammy set up our own painting place!  We had little table easels, music, and juice (instead of wine).. we had so much fun!  She thanked me several times for making our own special place to paint!

The new "Cinderella" movie arrived..by the time she came over she had already seen it twice!  Of course we were reenacting the various scenes Thursday and Friday!!  We were switching dresses constantly between "scrubber girl Cinderella" to "ball dress Cinderella" and "wedding dress Cinderella!!"...And  MUCH to her delight her new Cinderella dress arrived today!! She couldn't wait to get that one on!!  I did manage to get her out of it for her nap!  Today I had to be the "mean step-mother", and the prince! Of course when she went home tonight we hurried into her bedroom and changed into her new costume so she could be properly "presented" to Mommy and Daddy!  She is such a hoot!!

Today Bella baked a special cake for her Daddy because he had another doctor appointment today.  She asked me if I was sad today..I thought I was doing well at hiding it but I couldn't lie to her..not when I could easily have burst into tears at any moment today...and was able to do any crying when she was not looking...so I said I was worried.  "About my Daddy?" (Yes..I am worried about him.) "Me, too, Grammy. I worried, too".

Bryan has had some sort of virus for almost a month...started with a severe headache, fever, stiff neck. Doctor said just a virus...which he has been treating for a couple weeks...but then he ended up in the ER with what they said was pleurisy (caused by his unknown virus more then likely)...but while in ER they did chest x-rays and CTScans.  The CTScan showed multiple nodules in his lungs..A follow-up with his physician (and subsequent blood work) showed liver enzyme levels twice the normal level. A referral to a pulmonologist said his lungs sound clear and he aced his PFTs ..they are going to do a sweat-test (because of Bella's CF) next week and a PET Scan was ordered (which was today).  They aren't sure what the nodules are yet...(histoplasmosis is suspected)... So to say that I have been worried is probably an understatement.  The unknown factor is driving me insane.

So today Bella was my little comforter..she gave me lots of hugs and I gave her lots of hugs. If I looked "sad" she would come and give me a hug and kiss.  Nap time she put her arm around me and said "don't cry"...so much for me hiding it from her during the day!!  So I was really glad that her costume came in today and we were able to pretend to be in another place...a place where fairy tales come true and everything is perfect in the end!

Thank you, Bella..for being my comforter today!
I would have been very lost without her today!

"You need me!"

Today was such a good day...Bella did all her school work early, her vest therapy early, and we were free to be silly the rest of the day!  And boy were we silly!!  We love our silly days!

This picture needs a little explaining!    When Bella goes into the bathroom she has me sit out in the hall so that she has privacy..but she doesn't want me to go very far!  So I sit on the bench outside the bathroom and she carries on conversations with me feet! I think she has given them different names..sometimes they are Lilly and Ralph!

Yes...my "feet" friends!

On a side note..Tuesday (after Danny left and we were getting ready for her to go home) Bella got very quiet. She asked.."Grammy..will Papa be home tomorrow?" I told her he would be for little while, but he was going in to work. "But Grammy..Papa will be gone, Uncle DanDan is gone, and I will be gone...Grammy..you will be all alone by yourself!" (It will be okay, sweetie).."No, Grammy..you can't be alone by yourself. You need me!" (Yes, baby..I will always need you..but it's okay..I'm used to being alone when everyone goes home or to work.) "That's not right..that doesn't make sense, Grammy. You don't have baby cousins. You need me!"   .....   sure do love that tender heart of her's.

"Uncle DanDan"

I think the title says it all!  Bella is on top of the world right now...Uncle DanDan is home and she (and I) couldn't be happier!  Danny has a little shadow...if she could she'd take him home with her!  She spent the night Thursday and she absolutely was worn out by bedtime.  She and Danny played all afternoon. They hunted zombies, fought evil..basically saved the entire World and every civilization known to mankind!  Loved it!

"I not tired Grammy!"

Painting at The Copper Kiln

Today we painted items at The Copper Kiln.  Bella was so happy he wanted to go with her.  She woke up from her nap and instantly started looking around for him.  We still have three more days with him before he heads home.  I have to agree with Bella when she told him (and has told me many times)..."I miss Uncle DanDan..I love Uncle DanDan..I wish Uncle DanDan would stay here forever."...so do I sweetie..so do I!

Nap time..she is getting so big!

We received her lung culture results...all clear...no growths!  YEA!!  However, she is severely PI (pancreas insufficient)...we were told she was PI when they started her on digestive enzymes, but we wanted a re-check.  So now we will start her on a different enzyme.  We are keeping our fingers crossed that she tolerates the new meds and that it doesn't cause her worse bowel issues.  CF SUCKS...I HATE IT!!!  I hate what it does to her..I hate that she to do treatments, take pills, etc....I HATE IT.  But I am so thankful that she has been so healthy (other then bowel issues) and thankful that she has family and friends that love her unconditionally and are so supportive...thankful that new treatments and technology have done so much in their efforts to find a cure...But I still hate it.