New Routines New Beginnings

Bella had a busy week!  Clinic day is so stressful for her and all the way up to when we had to leave she was talking about the dreaded "swab" test. "Grammy..there are three things I don't like about doctor office check ups. First is the swab. I don't like them 'cause it gags me. Two is shots. OMGosh shots get inside your skin and body and that's just not right! And three..tongue 'pressors. I don't like them because it feels weird!"

Ready to get Clinic time over with!

I think we have all explained how necessary all three are but she could avoid the tongue depressor if she would just open her mouth, stick out her tongue and give them the biggest and longest "ahhhh" that she could! It worked this time and although it did gag her she flew through the swab culture! So proud!! :)

Before her visit I had talked to her about the possibility of them doing a new breathing test (PFTS) because she was almost five. Explained that they would put a little nose squeezer on her nose and that she would blow hard into a tube. "Grammy I can do that!"..and sure enough they did a trial run and she did awesome!!!

Her numbers were good all the way down the list of things they measure and we have a new routine. We are upping her enzymes to help with her digestion (two to four pills with every meal or snack). So now she will be looking at 12 or more pills a day. Adding additional fiber as well. She accepted that news with a thumbs up! I love her so much.  Big discussion about Kalydeco took place and the procedures to get her started on it have begun. This is a big decision and the doc says she is a perfect candidate for it. Statistics have shown, with follow-up sweat tests, that patient's numbers have dropped considerably when placed on the medication meaning their bodies are finally processing salt. This means the mucus in their bodies is thinning. Bryan and Jessica have weighed the good and bad and have chosen to start her. They both amaze me with the strength and unity and love they have for Bella and each other. So proud of them and love them so much. So now the waiting process begins for the approval of the medication.

My little video making sweetheart. Love her so much.