Hello All.  The months have really flown by.  I'll try very hard to give you just the short version of the story, I can't promise anything.  First, the school year was over so quickly.  Jonathan finished his first year of preschool while Meaghan finished her preschool career at Mt. Hebron.  Jimmy moved from elementary to middle school this year.  I have no idea how that happened.  It feels like I was just putting him on the bus for his first day of kindergarten.  We started the home remodeling project I talked about earlier.  The kitchen and dining room in our house were completely demolished to create a big eat in kitchen.  It is close to completion now, it's been a LONG and draining project.  I'm really sick of telling everyone how much harder this was than I ever imagined.  We had a nice long vacation in the middle.  Jimmy played a week long baseball tournament in Myrtle Beach, SC.  I LOVED the beach there but could have done with a lot less rain.  Right on the heels of the SC trip we stayed a week in Ocean City, MD.  We had more sunshine, cooler temperatures and more wind.  Not the best two weeks to plan a beach vacation but it beat being home in a house torn apart without electricity and water.

Unfortunately, this is when my story starts to get worse.  Before I go there, Meaghan donated 12 more inches of her hair to Locks of Love just before our vacation.  And, she says she's going to do it again!  Now, knowing Meaghan had to be seen by her doctors before going away for such a long trip I scheduled a last minute visit.  While we were in Myrtle Beach I thought Meaghan sounded congested but I let it slide telling myself it was the "new" air.  By the time we got to OC I knew she was positive for pseudomonas, again.  She seemed off to me but not enough to raise any alarms for anyone else.  When we came back from vacation I called the CF clinic to get their opinion.  We decided to watch her a few days, then a while longer.  She never seemed to take a serious turn for the worst so none of us thought much about what was going on.  Once she coughed up a plug we knew that something bigger was happening in her lungs.  That's when we started her on an oral antibiotic.  But still, no change in her symptoms.  Along with the doctors we decided to hospitalize Meaghan again.  On Friday, August 16 we packed a bag and settled into a room on 9N at Hopkins.  It wasn't until the following Tuesday that she was in an operating room getting her broncoscopy and a new PICC line.  It was easily one of the most difficult stays we've had.  It was physically hard but the emotional aspect is still taking its toll.  We stayed a week and continued the IV antibiotic with the PICC line at home another week.  Howard County Schools started on Monday, August 26, but Meaghan and I knew that she wasn't going to make the first (calendar) day of kindergarten.  After talking with Meaghan's primary care pediatrician, CF doctors and the school nurse we decided to keep her out of the classroom, indefinitely.  I was warned that one cold in Meaghan, if allowed to settle in, could be disastrous.

Those are the events that I have failed to put here.  There is so much more I could tell you about.  Like I said, we are dealing with a huge struggle, physically and emotionally.  I've looked for and asked for some help and I'm working on doing it better.  I've accepted what has been offered too, huge for me.  I'm standing on this road I didn't plan for and some days I don't know if I'm moving ahead or backward.  I am angry and sad and confused and so oddly at peace.  Meaghan makes me a better person.  She is so much bigger than the tiny body God put her in on this earth.  She is AMAZING!