Wow, 4 years have flown by! So much has happened and our little girl has changed so much as well!

Violet has had a lot happen the last couple of weeks. People continue to ask about her and how she is feeling, so I thought I'd go back to blogging to reach a bigger crowd at once.

Let me rewind and give you a couple quick highlights from the last 4 years....

•  The best thing, (I'm sure) that happened is Violet became a big sister in October of 2015! She loves being the second mommy and is so helpful with her brother! And by the grace of God, her brother does not have Cystic Fibrosis, and is not even a carrier * Every pregnancy has a 1:4 chance of having CF *

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• On April 26, 2015 Violet got to start a new medication called Kalydeco. This new drug was being called the closest thing to a cure for CF, and a miracle medicine. It had only been approved for the specific gene that Violet has, affecting less then 1,500 people with CF. Because it could only be taken be so few people it costs $25,000 a month! Thank goodness for insurance!In the first year of taking it she gained almost 12 pounds. This is great news, as a higher BMI is proven to have a positive impact on your lung function!

• Violet started school! Since she was now on Kalydeco we felt a little more comfortable exposing her to the germs at school. It was still nerve wrecking, but she has done well. As she was about to turn 4, she went to preschool, and then all day kindergarten and she is now in 1st grade! She is still uncomfortable telling friends about her CF, so when they ask why she has to take a pill before lunch she just tells them it helps her digest her food. (baby steps I guess)

• Violet has been doing gymnastics since she was 2 1/2 years old, and still loving it! She is in Girls Level 3, and sneaking up on her older sister!

• She is also on the competitive Swim team at the YMCA, and even has a stroke that she excels in for her age! We went back and forth about the germs in pools vs the great exercise for her lungs, and her lung function tests continue to be above average!

• In March of this year her grandparents took her, her sister and 2 cousins to Disney World! When she was 2 weeks old and newly diagnosed with this disease, I would have NEVER pictured this happening in her life. Luckily as she has grown she has become " germ aware" and carries her own hand sanitizer and her Grandma is very conscious about public places as well. She survived the trip, airplane ride and all without getting sick.

So after those major milestones she looks more like a " normal" healthy kid more then ever, right? While she looks great on the outside there is a lot going on inside her little body. Everyday is important for both maintenance and prevention.

• This is her morning routine, along with inhaled Albuterol and her vest treatment. This is what she takes when she is healthy. When she is sick there can be breathing treatments 4x a day along with an antibiotic and/or an inhaled antibiotic as well.
• She gets up 45 minutes before her sister so she can do her breathing treatment and take all of her medicine before we leave for school at 8:45 am.

 Making treatment time fun

 She loves her sweets

Doing treatments, even on vacation

So late August, going into week 3 of the new school year, she develops this cough. We increase her treatments and let it ride a few days. Tuesday after Labor Day I kept her home from school and took her to the CF Clinic. While she was acting normal she still had this weird cough. Not frequent, not productive, but when she coughed she almost couldn't stop until she gagged. They sent us for PFTs

 ( Pulmonary Function test) and while her numbers were good, they were a bit of a decline from her normal. The doctor did a respiratory swab and sent her home on Augmentin x10 days. We would come back and repeat her PFTs in 2 weeks and if she didn't improve we'd think about inpatient antibiotics. After 3 days her cough was almost non-existent, she was acting normal, going to school and swim, no reason to think anything was wrong. Day 6 we get news from the clinic that she cultured Pseudamonas Flourescans. This is scary news, bc in the CF world this is the sister of a very dangerous organism that can be very hard to get rid of. Now we are on an inhaled antibiotic for 28 days. This is done after her regular breathing treatment and vest, adding another 20 minutes to her already half hour breathing treatments. Yet she does not complain, she feels well, she is not contagious, so she is going to school and swimming and doing gymnastics and even had a birthday party. It is so hard to look at her and how healthy she appears, and know there is a whole lot going on inside. So now we finish the 28 day course and then we wait a week and re-culture. And then we pray and hope and wish for the P.F. to be gone. Violet has been so fortunate to not have more then an overnight hospital stay since she was 3 weeks old. I'm not sure how any of us would handle 7-10 days of her being in a hospital room.

Another development brought up at our normal July visit was the size of her tonsils. We were referred to an ENT not because she frequently has strep, but bc of the size of her tonsils and the way she snores at night, which may be impairing her breathing. The Dr said she is definitely a candidate to have them removed. So now we are weighing the options of having her tonsils out. On one hand the kid may likely have a future of breathing issues as she ages, so why not remove something that can contribute to that struggle? On the other hand she is only a 6 1/2 year old little girl, do we really need to put her through that?

Has anyone had an experience, good or bad having their child's tonsils out? Do you regret the surgery, or are you glad you did it? Thanks for spending your time reading with me!

Doing her PFT