These are a few of the places Meaghan's images
from last year have been used.

Today was Meaghan's photo shoot at the National HQ for the Cystic Fibrosis Foundation in Bethesda.  It was terrific.  Everyone there was wonderful to Meaghan.  I saw a few of the shots they took of Meaghan before they took some of the two of us together, she looks amazing!  The highlight for me was the opportunity for Meaghan to meet Dr. Beall, President and CEO of the CFF.  I have heard him speak and read his emails but getting to shake his hand and see the pure joy on his face when he shared the progress that's being made to "cure" CF, was a moment I won't forget.  Not to mention the hug he gave me when I told him Meaghan is a double DeltaF508.  Every day new and promising information is released by the pharmaceutical companies and researchers heading up the study of the combination of drugs that have the potential to improve my daughters life.  Real hope for a long, healthy future is almost at our finger tips.  Many CFers are benefiting from the use of Kalydeco, the first CF drug that targets the root of the disease.  Many more, including Meaghan, stand to benefit from Kalydeco when used in combination with drugs that are being tested right now.  HERE I GO... Please donate.  The Foundation needs your help, I need your help, MEAGHAN NEEDS YOUR HELP!  

I went back to this picture to remind everyone who we are.  This picture brings happy tears to my eyes every time I look at it.  It was the day before I heard "the best news ever" and we're smiling anyway.

So I haven't posted in a while but I haven't had much to share.  Meaghan's treatments haven't changed, she is working very hard to stay on track.  She continues to eat well (mostly) and her weight makes me very happy.  Enough that we went together to buy a new 3-in-one booster seat.  The new seat has a wild pink pattern on it and Meaghan is sooooo happy.  What an accomplishment!

Ok, one thing I (maybe) should mention.  Meaghan was invited to a formal photo shoot for the Cystic Fibrosis Foundation at the end of this month.  About a year ago she was photographed by a CFF team and I hear that those pictures have been used in several places.  I have a copy of one publication where Meaghan shares the cover with another beautiful CFer I know.  Our favorite doc came with it to Meaghan's room when she was inpatient and had her autograph it for him.  Who knows where the new pictures will end up but every little girl dreams of the star treatment, why shouldn't Meaghan.

Today was a dreary, rainy day but we made the best of it.  Meaghan saw a guitar a few months ago but didn't have enough money to buy it at the time.  She has been saving and today realized she had enough to buy it.  I couldn't resist, so I packed all three kids and headed out to the toy store.  Luckily the boys has some of their own money so everyone got something.  The rest of the day was spent playing with their new treasures.  This is Meaghan giving a concert in our living room, what you might not know is that the guitar plays its own music, loudly :)  Oh well, she loves it and is so adorable playing it, I just smile.

Now something that has been troubling me.  I have faced all Meaghan's struggles head on, with determination to "fix" whatever needed fixing ever since she was born.  I found out after Meaghan's second hospitalization that me neighbor (my closest, best friend) was moving.  When she shared her news with me, I told her I knew it was best for their family and that I was happy for her.  But I didn't want to talk any more about it.  I still mean what I said, her family will benefit from this move and I am happy for that.  I wouldn't talk about her move because it was too hard for me to imagine that she would be gone soon.  It is hard to believe that someone who came into my life such a short time ago has had such an impact on my life.  I am a happier person since knowing her.  I have so many regrets about how I spent the time since I heard she was moving.  We said our goodbyes last night and the view out my kitchen window is so dark tonight.  I know she reads the blog all the time, so "I miss you, Bestie".  So why is it I fight like mad against CF and hide from my friends????

I love this picture, it makes me laugh.  A train drove by as Meaghan and Jonathan posed for a picture by the caboose at the B&O in EC.  Jonathan is very sensitive to noise so when the engineer blew the whistle it put Jonathan over the edge.  For anyone who has heard him scream, you know what he sounded like.  That is why Meaghan is holding her ears, she didn't like Jonathan's scream on top of the train noise.

We spent the day playing.  The park this morning and the playground at the baseball field tonight.  Meaghan ate a ton today.  She said she was hungry over and over and she made good choices.  I hope that the weight gain continues.

I have two new Team Meaghan members and a few donations.  I am a long way from my goal, personal and Team.  If you read the blog, share it, good things happen when the word gets out there.  There is a link on the right to the CFF website to join the team or make a secure donation online.  For us there is no better cause.  Lives are still lost to this terrible disease every day.

Her shirt says, "This is what fabulous looks like".
I couldn't agree more!

Not much to report on today.  I spent most of the day with Meaghan and Jonathan at the aquarium.  It was fantastic, we even saw some friends on our way in (Hi C).  I wanted to beat the summer crowds and I ended up with at least three class trips instead.  Oh well, they were spread out and Meaghan and Jonathan had plenty of opportunity to see everything.  They just LOVE going, that membership was the best money we spent the way I see it.  I am pinching myself over how well the day went for me.  My favorite thing was hearing Meaghan say over and over again how beautiful the jellyfish were.  I have to agree, there's something very enchanting about the jellies :)

I have to schedule another visit at Hopkins for Meaghan, just another "routine" visit.  She's due right before or after family vacation.  I know I should take her before vacation but have reservations over doing it then obviously.  Even when it sounds easy, it just isn't.  

I hope that this blog is catching on with people, I think it is.  I want the word out there about CF and how important it is to support families like mine.  The comment I get most of the time is that no one knew, Meaghan looks so healthy.  Yes, she does but hours a day go into it.  My daughter has to keep a tight schedule of medicine, therapies and supplements.  With her improving so well I sometimes want to pass on treatments to have more fun.  I try very hard to remember that I am Meaghan's first teacher when it come to caring for herself  and so we make it all fit somehow.  I am very proud of the person I see when I look into those pretty blue eyes.  Through her fighters spirit, strength and courage I find what I need to go another day.  Together, we will beat this... 

I am deeply touched by all the encouragement that has been offered.  I feel like I should offer an apology to CF families who read this blog.  Yesterdays post was a celebration for me.  The past 4 months have been much more difficult for our family than in the past.  I am in this fight with you and for all people living with this terrible disease.  I hope to raise awareness and funds for the cure we all desperately need.

As I mentioned, Meaghan and I have been tested  physically and emotionally.  Thankfully, Meaghan has overcome her challenges.  I am finally looking forward to working on myself.  I get up every day feeling a little lighter and ready to tackle new challenges.

Now I have to get moving on Team Meaghan's Great Strides event.  For everyone who has participated I hope you will take the time to sign up and walk with Meaghan again this year.  If you are new to Great Strides, get involved.  It is a day you'll remember forever.  The link on the right of the page will take you where you need to go.  Ask me any questions you need along the way.  This is our 4th year with the Columbia Great Strides event and I am so proud of what they accomplish.  Last year Team Meaghan was a top five team, raising almost $10,000!  This year I want to exceed our $10,000 goal.  We can't do it with out your involvement and support.  Please help us.

I have the best news!!!!!!!

Meaghan's visit with the doctors at Hopkins was so much better than I dreamed.  The first bit of good news was that Meaghan gained enough weight, in spite of her vertical growth, to increase her BMI 4%.  The nutritionist says to keep doing what we're doing.  Meaghan is exploring her food options and trying lots of new things, something we should continue to push, gently, without being discovered.

But that is nothing compared to what I about to share.  After checking to be sure, Dr. P told me that the cultures from Meaghan's last bronc were NEGATIVE for MAI.  NEGATIVE!!!!!  That means Meaghan kicked the "bug" no one told me she would.  Dr. P says that we will continue to give the antibiotics that Meaghan is currently taking for the full year from the start of this nightmare.  We will have another bronc to test for the infection some time in the future.  She reminded me that the MAI is a slow growing, aggressive "bug" that needs to be taken very seriously.  BUT, she high fived me for all the hard work I put into taking the best care of Meaghan.  It seems like so long ago that I stood, in shock, listening to the Infectious Disease doctor tell me that we'd work very hard to get the infection to a point Meaghan could "live with".  Then today I heard Dr. P say it's gone.