I am feeling excited about writing to you all again.  There has not been any big change in Meaghan so I don't have much to update you about.  Just the fun stuff today, at least that is how this all started. This picture makes my little soccer player look like a star. The truth is, she's not very good.  All that matters is that she was having so much fun she never noticed that the other kids knew how to play.  We were so fortunate to know the coach and have him know us so well.  The season is over now and Meaghan is ok with that.  She has her honorary team jersey and a trophy.  Alright, one sad fact, Meaghan said she can wear her jersey when she has to go to the hospital again because it has nice big loose sleeves.

 After all that running around, Meaghan loves to have a big fat donut.  She needs it too.  There was a big weight loss last month but we are making that up.  I wish I could say that it was because she is eating everything in sight.  Unfortunately, it is all because of the extra can of high fat formula she gets in her feeding tube overnight.  But it is fun to watch her eat, even if it is only once in a while.  Seriously, she may not eat a meal all day long.  When she does ask for food these days it doesn't add up to a meal and she rarely finishes what she asks for.  We don't fight over it, I learned a long time ago I couldn't win those arguments.  Instead, all I can do is ask her to join us for meal times and offer her anything she wants.  So most days she "eats" a Danimals yogurt for dinner.  Sometimes a little cereal goes with.  She says she doesn't feel hungry or that she already feels full.




Story time is another great time in our house.  This night Jimmy got in on the action.  Most nights he takes advantage of the quiet and watches whatever sporting event is on television.  But the story he is reading to his sister and brother is one of his all time favorites.  We just call it the veggie soup book and it has been a hit for many years.  Jason doesn't usually hang around for this one, he says it's too long and silly for him.  The kids and I like it and it makes us laugh to watch Daddy cringe as we pull it off the shelf.

This was a fun day at Jimmy's school Fall Festival. The weather was less than great so the activities were all moved inside.  There was great food, fun games, face painting, music and a chili cookoff.  Meaghan was the first to hit the target on an elaborately engineered shooting game.  Her prize candy came catapulting across the room much to all our surprise.  Then they all threw darts at balloons just to hear the loud pop.  The bouncy wall  of velcro was a huge hit.  The little kids needed help from their daddy to bounce high enough to get good and stuck to the wall.  It was hysterical to watch.  The giggling and squealing are sounds I won't soon forget.  It was work for Jason to get them up that high and watching him try to pull them off the wall was equally difficult.  I wish I had video of this one to share.

We spent part of a fall Sunday afternoon at our friends farm.  Meaghan was allowed to scavenge for the materials she needed to create a small creature home in her backyard.  She wants to encourage more small animals to live there.  After playing with the chestnuts, running down the hill and slopping in the creek she picked rocks, sticks and the coolest gnarly stump for starters.  Then Meaghan visited with the cows for a long time.  She was quiet and still enough to get one to eat grass from her hand.  Come December half of one of these cows will be in our freezer.  We've done this for three years now and the kids are cool about it.  They know where our food comes from and so do we.  These cows are kept and cared for as well as, if not better than some pets we know.  Allowed to graze freely without the use of growth hormones and antibiotics making them the best choice for our family dinner table.




Another hit was the antlers that hung in one of the outbuildings.  Meaghan had just asked me if she could see some deer antlers up close.  Then whala, a set hung right over her head.  She was allowed to hold them and appreciate their size and weight.  Very cool.      

Finally, I finished the Cystic Fibrosis Foundation's first anual Xtreme Hike!  The weather was perfect the whole day.  We set out on the trail just before 7am.  The first leg was over 10 miles.  Then a quick stop for lunch and refueling.  The second half was more challenging if you ask me.  It was a long winding path uphill that wasn't really a path at all, it was the crumbled side of an east coast mountain.  My cell phone battery died when my gps map app reached 23.53 miles.  15 minutes later I crossed the finish line.  I hiked along with great people, some of whom have no connection to CF and one who is fighting his own battle with CF.  Now I know what people were talking about when they told me how this experience would change my life.  I thought I could do it but I just proved to myself I am capable of so much more than anything I imagined.  Whether you have CF or are the parent of a child with CF you never know how it is going to interrupt your life.  Hiking all that day gave me lots of time to reflect on our struggle.  All the ups and downs, rocks, sticks, trail  markers and beautiful vistas along the way I found to be wonderfully symbolic.  With that so fresh in my mind I promised myself to tackle the rest of our days the way I conquered that hike, one tricky step, one rocky hill, just one obstacle at a time.  The reward was such a sweet personal victory.
  



OK.  This is just too cute not to include it.  I hope you see the humor in this with out me spelling it out for you.  They were playing and singing, "Pop goes the weasle!"
HAHA, Jaecksch (jacks) in the box.

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.