Friday, January 27, 2017

Courage

   Today on the way to school I told Bella how very proud I am of her.  And how very smart she is. I told her she just amazes me everyday with what she is learning in school. I told her she was the bravest little girl I knew, too. She asked, "Why?" (Well, because you just are. You have to do a lot of stuff other kids don't have to do and you just do it because you understand how important it is.) "Like wearing my mask. I don't want another lung infection!" (That's right! Maybe your mask will help keep some of those germs out!)  She said she liked learning and really likes her memory verses. When I asked which one she liked the best she said, "Courage is about being willing to try something new even if you are afraid!"  She's so right..and that sums her up perfectly.  It's hard enough being 5 years old and going to school, and learning new things, but add in to that all the treatments, therapy, pills, etc., having to go into the hospital, needles, tubes.. She didn't complain, she just accepted that somethings might hurt (like finger pricks for blood draws) but she could do it. She truly is her favorite verse..She is courageous. 

Bella learned to tie her shoes!  Of course she wanted to film it so she could post it on FaceBook!  

Tuesday, January 17, 2017

Just Another Thing

Trying to get back into my weekly blog... missed last week! I'm not doing too well at getting my routine back up!

A little over a week ago it was discovered that Bella has a small blood clot in her arm. It's from the IV's, the strong antibiotics, etc. It doesn't bother her, but we have to keep an eye on it. It should remedy itself. It's always something!!  Other then that she has continued to do very well. She has accepted the new addition of her nebulized hypertonic saline without blinking an eye and wearing her mask all day at school. She just looks at it as "just another thing".. she amazes me.

We are gearing up for Great Strides 2017. We already have 11 t-shirts ordered, and we are half way to our team fund raising goal!!  Every penny raised helps us find a cure. Several of my CF Family/Friends are struggling right now. Brady is in the hospital getting a port and g-tube. He just can't get his weight up so hopefully this will help.  Melissa is in the hospital fighting an infection and her PFTS shows that her lung function is sitting at 40% (down from 70%). And my Crystal is battling the after effects of antibiotics and belly issues and new meds. This disease is just unforgiving..it is relentless..it is determined to win and our CF WARRIORS are fighters and refuse to let it win. They are amazing, they are fighters, they are WINNERS!

Bella has a big date coming up this Saturday... her very first Daddy/Daughter Dance.  The school sent out invitations. She is beyond excited!! I can't wait to see pictures!!!

Saturday, January 7, 2017

Welcome 2017

We were photo-bombed!! LOL!
This is going to be another year of new adventures for Bella. She loves school and is learning to read! I have a feeling the rest of the school year is going to fly by!  Bella headed back to school Thursday. To say that her class, and teachers were happy to see her would be an understatement! She received hugs from everyone that saw her. She was very happy to be back!

Heading home.
So we are back to normal routines now. Danny made it home safe and sound..Bella misses him and wants him back here forever (me, too!).  She asked if I wanted to see him on TV and I said of course! She says if he's on TV then he can't come home. I told her we would work around it!!  Of course she wants him home for her birthday in July... "then he can see me swim!!"  We will work on that, too! She also says she wants to go to Disneyland. (In California? We will all have to fly out there. You told me you don't want to fly on a plane again!)  "Well..if I get to go see Uncle DanDan it will be okay. Will he go to Disneyland too?" (I'm sure he would join us!)  "Okay..then it will be fine!"  I guess we will have to work on that, too!

Bella is helping design her Great Strides walk shirt! It will be blue this year!! She is inviting all her classmates and the other Kindergarten classes as well!  Hopefully we will have a huge team walking in support of CF awareness!!