This news is long overdue.  We heard from Meaghan's doctor that the year long treatment of the MAI infection was SUCCESSFUL!!!  As of Thursday, March 21st Meaghan stopped taking 3 oral antibiotics, Rifampin, Azithromycin, and Ethambutol.  Those are big words for grown ups but Meaghan could say them all and tell you why she needed them.  Now she is very proud to tell you that she no longer needs them.  She also knows what good news it is because now she has no restrictions on meals, her belly feels better and her appetite is improving.  Just to be very clear, this is extraordinary news.  When Meaghan was hospitalized and diagnosed with the MAI infection over one year ago, we were warned that all we may be able to expect was to colonize the infection.  Meaning that Meaghan's body would have to learn to "manage" the infection.  MAI is a very rare type of infection and there was no record of someone Meaghan's age being treated for it.  Johns Hopkins put everything they had into treating Meaghan aggressively to give her the best chance to kick MAI.  We owe them such a debt, Meaghan is MAI free and all the energy spent to protect the rest of her body from harm was successful as well.

Today, Meaghan is being treated again for a new pseudomonas infection.  We were first diagnosed with  pseudomonas last July.  Regular readers of the blog know what happened next but for anyone who's new I will share again.  We tried an inhaled antibiotic but it didn't work.  Then we tried the inhaled antibiotic plus an oral antibiotic.  That didn't work either.  So Meaghan went into the hospital for a bronchoscopy and 3 weeks of IV therapy.  That worked!!! But we got pseudomonas back 3 weeks later.  So it was time for a new inhaled antibiotic.  It worked, temporarily.  Meaghan has to use the inhaled antibiotic for another 6 treatments.  Each course is given 3 times a day for 1 month.  Then we take a month off before treating again.

You may wonder how we live like this.  Honestly, it isn't easy at all.  But it is so important to stress that we choose to LIVE.  We lean on each other, encourage each other, cry together and thank GOD for every day we have together.  CF is our gift.  As a family, we have grown and feel that what we've gained from living with CF outweighs all the rest.

My take away for today, go love each other and support each other.  Especially those of us who fight this terrible disease.

Whoa, I knew I was a little behind, but...
It occurred to me this week that the blog is one year old now.  "Happy Birthday!"  So many things have happened in the weeks since my last post so I want to try to catch you up.  First, Jason and I attended the CFF's Annual meeting.  Dr. Beall, President of the CFF, reported so much good news.  What it boils down to is this, the cure for CF is more than just a possibility, it's a reality.  A small percentage of patients with a more rare form of CF are benefiting from a drug called Kalydeco.  It is the first CF drug targeting the root of the defect and it works!  There are other drugs in the pipeline that when combined with Kalydeco positively impact the quality of life for a greater percentage of CFers.  We were assured that while the CFF continues it's search for a cure they are 100% committed to their mission to improve and lengthen the lives of all who suffer from this terrible disease.    

Next, I met with Meaghan's preschool teacher to discuss her progress for the year.  Honestly, I didn't have any concerns so I went in calmly.  I heard that Meaghan is a bright little girl who is respectful and always ready to share.  She follows all established rules and exceeds most of the goals set for her stage of development.  Being in a small class this year has really allowed Meaghan to shine, I am so proud of her.  Look out kindergarten, here she comes.

Meaghan saw her eye doctor during the last week of February.  Her color vision and optic nerve still appear to healthy.  She loves to visit the eye doctor, they do an amazing job of making the visit a game for her.  The drops for dilating her pupils was a fight however.  The news was all good, that makes me very happy.

Meaghan continues to prepare for her ballet/tap recital.  The parents were treated to a sneak performance in the studio a couple weeks ago.  Meaghan is so excited about showing everyone what she has learned and I can hardly wait.  We saw her costume in a picture and hope to get them in soon.  I don't really know how I ended up with such a girly girl but it is so cool!

The thing you're all probably anxious to hear about is Meaghan's visit to clinic.  We were there on Friday, 3/8.  I have some good news to share and another "wait and see" moment.  Meaghan took her first Pulmonary Function Test that morning.  She did a great job.  The numbers we saw stand alone but by all accounts, Meaghan's lung health seems good.  She had an above expectation weight gain and grew 1/2 an inch taller too.  At her last visit her height and weight put her at a BMI of just 20%.  This visit she boosted it to 39%!  Optimally a CF patient should strive for a BMI at 50%.  Meaghan has only seen that once in her life but I have a good feeling about seeing it in her future.  The doctor took a throat culture, that's standard at all visits for Meaghan, she is a super star at those.  They are checking for any new infections.  To date Meaghan's culture has not grown anything, phew.  During the visit our doctor shared that the culture they collected at Meaghan's last bronch has not grown the MAI infection to date.  I wish that was it, no more MAI, but I learned that we still have to wait a few weeks before we can be considered "cured".  I long for that day.  We'll be able to drop several of Meaghan's medicines and lessen the dangerous side effects of her treatments on her little body.  Not to mention the worry and stress factor.

The last thing I want to share for tonight is much more fun.  Meaghan spent a special afternoon with her daddy last weekend.  It was a special time for me to be with my boys too.  On Saturday Jason took Meaghan to a nearby horse stable for an introductory lesson.  Jason was completely impressed, Meaghan too.  Until the time came for the horse to walk with Meaghan on his back.  That was when Meaghan said no more and got off the horse.  She says she'd like to go try again when she is a little older, I can't wait.  What I find so funny about what happened is that Meaghan has ridden on the back of a camel already.  He was much bigger and there was no holding her hand, oh well.  Meaghan knows what she wants and there is no one in her world who can tell her differently.




Thank you for continuing to read about our journey.  It's a story with many twists and turns.  One tough year is behind us now.  It's time for new beginnings.  I believe we are going to celebrate lots more in 2013!