Hello again.  Haha, that reminds me, did you catch that I am now using Me-aghan for the blog.  Thank you Chris, I know it wasn't intentional but I love it. 

I was driving home from Jimmy's school this afternoon and thoughts were racing through my mind. I realize I haven't kept the blog current lately so I sat right down to get it done.  I don't promise a smooth read, it may not be some of my best writing. Many of you know our family has been struggling through various trials for several months and they have had a dramatic impact on all of us.  I can only speak for myself really but I will try to paint you the whole picture.  I have been on an extreme emotional roller coaster.  Some days I wonder how I'm going to make it before I even get out of bed.  No one understands and I don't expect anyone else to.  This journey is one that if you do not have a deep, up close and personal relationship with you can not understand.  I wake up every day the mother of a bright, beautiful little girl who I want desperately to be like everyone else but she just can't be.  She isn't.  She is so much better.  When I see her and when I am with her I know I am in the presence of something much bigger than she is.  Meaghan is everything I see, touch, hear, taste and smell.  My heart aches for her suffering but wants so badly to be her.  Someone with grace and wisdom beyond her years.  I can say that because not long after coming home from the hospital this time, Meaghan asked me what I was going to do when she wasn't around anymore.  Thankfuly I was able to think on my feet and said, "EWWW! Boys, I'd be stuck with all boys."  To which she laughed, we hugged and I left the room for a long ugly, cry.  A few days later she was telling Jonathan that when she's in heaven with God she won't have to sleep in a hospital again.  Now, this is crazy because not one person talks about CF beating Meaghan.  But, she's smart and hears everything we are saying.  Each visit, each culture result, she knows what they mean. 

I hate it! That sums it up.  I am tired all the time.  I don't want to or I don't feel like I can do every day stuff.  Thankfully, I have an expanded support system that these days I could not live without.  There have been some exceptional women come into my life who are helping me get things done.  They are all there to support me in whatever way I need at the time.  I want to name them all because they are so special to me but I hope that they know who they are.  Lately, some have stepped up to watch Meaghan and Jonathan so that I can go on "training hikes".  I have a week and a half to get myself prepared (physically and mentally) for the CFF Xtreme Hike.  I am there, I think.  I am actually very excited to get going.  I am just shy of my fundraising goal but I am not worried, I know I will get there.  If you are able, a tax deductible donation to the CFF at: www.cff.org/lwc/MichelleJaecksch would be so greatly appreciated.  The funds we raise will play a vital role in the search for a "cure" for this terrible disease.  Meaghan needs a cure more now than she ever has. 

I wish I could report all good news but sadly I can not.  The only really good news I have is that the MAI infection we battled for over a year has not returned.  We finished treating the aspergillis(sp?) and now have to wait for the doctors to decide when to repeat a bronchoscopy to see how successful we were.  We just restarted the treatment for the pseudomonas that we can't seem to get to stay out of Meaghan's lungs.  That treatment is 3 times a day for a month, every other month.  Next, for the first time that I can remember, Meaghan lost weight.  Two and three quarter pounds in a month!  We had to make changes to her medications to try to stimulate her appetite and up her overnight feeds to three cans per night.  She doesn't have much of an appetite yet and I can't help but feel like things are getting worse instead of better.  In general, that is how I see Meaghan. 

We finally met her tutor this week.  That is going alright, I guess, I'll have to wait and see.  It doesn't really have anything to do with the teacher, it's Meaghan.  It is hard for me to watch her stare blankly at her teacher as if she doesn't understand what she is saying.  Meaghan is super smart and knows soooo much more than she is letting on right now.  I had a short chat with the tutor after she finished with Meaghan.  The tutor didn't think it was a bad time.  She understands that Meaghan has been through a lot and may not be very comfortable with her yet.  She appreciated my feedback and will raise her expectations for Meaghan when it comes to participation.  I am happy that we are working together toward the same goal and I hope their next meeting goes much better. 

Ok, lastly, the kitchen.  It still isn't done!  The old space was demolished on June 17th.  I can use my appliances but I still can not put things in my cabinets.  The contractor won't be back until next week to put the finishing touches on the cabinets and ceiling.  One day, soon I hope, I can say that this was all worth it and use all of my house the way it's meant to be used again.

Thank you for sticking with me.  With all the interruptions and "stuff" of my life this bit of writing actually took 4 hours to wrap up.  But now that it is done I can say that I love my crazy beautiful life.