Archive for January, 2012
On Thursday, Julia and I went up to Primary Children’s Medical Center for Julia’s first ever Cayston experience.
Rewind just a bit…ever since Julia contracted pseudomonas, a harmful bacteria damaging her lungs, she has been on a medicine called TOBI. TOBI is an inhaled antibiotic that treats pseudomonas and keeps it under control. The only down side to TOBI is that it takes a loooong time to inhale, 30 minutes to be exact, which adds an additional hour onto Julia’s already hectic treatment schedule. Cayston does the same thing as TOBI. It is an inhaled antibiotic that treats pseudomonas just like TOBI. The truly fantastic thing about Cayston is…it only takes two minutes to neb. I originally said it took three minutes, but I lied. After timing it we found that it was two minutes exactly. TWO MINUTES! I am still in shock at how fast it nebs. It is A-MAZ-ING! Even Julia is surprised at how fast it goes.
Julia is the youngest patient at the Intermountain Cystic Fibrosis center to be on Cayston. She is one amazing four-year-old! I am so excited for her as we are taking back an hour of our day and loving every extra minute of it! Just in case you don’t believe me, we made a little video of Julia inhaling Cayston. It makes her cough a little, but she puts up with it for two minutes. She is such a trooper.
Julia with the Peanuts gang after her first Cayston experience at PCMC.
Altera nebulizer system...it can be battery operated and doesn't make a sound besides a beep.
The Altera is so small...it fits in my hand.
Cayston is different from TOBI in that is has to be mixed. It also has to be administered three times a day as opposed to two. Cost for a 28 day supply...$6019.69. And I thought there couldn't be a medicine more expensive than TOBI.
We are so excited about this new change to Julia’s treatments. We’ll keep you posted on how things go, but so far, we couldn’t be happier.
For those of you who aren’t on my Christmas Card mailing list, I thought I’d post my card for you here.
Mills’ Family Top 10 of 2011
#10-Joseph playing softball on a team with his brother
#9-Olivia winning a lunch date with her Kindergarten teacher and getting to ride in her teacher’s car and visit her teacher’s house…even better than with a celebrity!
#8-Austin starting 3rd grade, Olivia starting 1st grade, and Julia starting another year of preschool…even better than that…three wonderful reports from their teachers at parent/teacher conferences
#7-Janna becoming the newest kindergarten teacher at Calvin Smith Elementary…can we say, “Yay!” for group health insurance!?!
#6-Joseph, Olivia, and Austin’s many ski trips to Snowbird…Utah really does have the greatest snow on earth!
#5-Janna and Joseph celebrating 15 years of marriage!
#4-Olivia and Julia dancing their little hearts out in their spring concert
#3-Austin playing the position of Center for his Gremmie football team and his team placing second in their division
#2-Janna running in and finishing the Salt Lake City Marathon…time to complete: 5 hours, 14 minutes…thus confirming that running really does suck!
#1-Our family vacation to Doheny State Beach, that included Knott’s Berry Farm, Disneyland, Sea World, and Laguna Beach tide pools
Sending our love and best wishes this holiday season!
Love,
Joseph, Janna, Austin, Olivia, & Julia
My beautiful children! They couldn't make this mama more proud!
I hope to get more up on my blog this month after Julia’s next clinic visit. She will be doing a test run of Cayston this month and if all goes well, she’ll start on January 27th. Hope all is well!