Today Meaghan flew a kite.

I know it"s been a long time since I shared anything with you.  I haven't had much.  Meaghan is still taking the "extra" antibiotics and we won't know for about three weeks if they are doing the job.

We are trying to cram as much summer into our last days before school as possible.  I am actually a little sad that our long days together are coming to an end.  On Tuesday Jason and I are taking Jimmy and a friend to see two Little League World Series games.  Meaghan and Jonathan are going to stay home with Meemaw and Pop Pop.  There's something special planned for everyone.  Then taking advantage of the holidays  early in the school year, Jay and I are taking the kids on one more family trip.  Having Meaghan so sick this winter was a bit of a wake up call for us.  Until then our CF journey was relatively easy.  No more denial, tomorrow is going to be a "special" day.

This is Meaghan's first pumpkin from our
 garden, a sign of things to come I guess :)

I am (for good reason) nervous about sending Meaghan back to school this year.  I love the preschool that we send her to, it has nothing to do with them.  This year we have the benefit of an "experienced" teacher.  One who has had two other children go through her classroom with CF.  This teacher is a family friend and I know both the other families.  My comfort level with the school and the teachers is as good as any mother could hope for.

I wish I could put into words how battling Meaghan's CF makes me crazy.  I put lots of words on these pages and some who follow are experiencing/will experience/have experienced the same feelings.  Others are doing what they can to support us through this dizzying ride.  All I know I want to say is every day is a miracle.  I fight like mad to put aside the fear, stress, sadness, guilt and worry so that I can get out of bed, hug my beautiful girl and thank God we're here, together.

Here's my advice to you tonight.  Take a moment, now, to tell the ones you love that you love them.  Do something with your kids.

Way to Go!

The Great Strides Walk was a huge success.  I have not heard final walk day results from the MD Chapter, but overheard that we were already near our goal!  That is great news, however, our fight is not over.  The CFF needs our continued support in its lifesaving mission.  Meaghan needs our support!

Last Tuesday we took the kids to the Catoctin Wildlife Preserve and Zoo in Thurmont, MD.  It was a totally amazing day.  One that Meaghan has been waiting for for a long time.  And I am certain she will never forget.  Check back soon, I hope to add a slide show of our trip to the blog, we captured some unique experiences.  

Meaghan is battling a new infection.  We were dealt the news over the phone a week ago.  The oral antibiotic is the easy part of what she has to add to her daily routine.  The inhaled antibiotic on the other hand is tearing her apart.  It has to be taken by nebulizer twice a day and it takes 30 minutes to complete each dose.  Throughout her life she has complained very little about anything but she says this medicine burns her mouth.  Even though this is hard on her she remains diligent in her treatment proving once again she has what it takes to beat this "bug".