Too close to a life-like dino.  Sooo cool! 
 

Hello Again.  I've been working on this post for days! It has changed course multiple times and I can barely tell if I got it all out by now.  But, for some of you who are reading this, just seeing something new here is a welcome sight.  If you are new to Meaghan Me Dizzy, yay!!  So happy to have you here.     

You have all been on my mind.  I've just been stuck in a rut and I didn't know what to say.  I was feeling very bad for a long time.  I was sure that Meaghan was getting sick again.  Turns out, she's better than she's been in 2 years.  Our road is still anything but easy but we are celebrating more around home for a change. 






Singing along to the pulsing of the
 vest

 

 



Back in February, per the advice of Meaghan's psychologist, I signed Meaghan and Jonathan up for a Lil' Big Wheelers Class.  The therapist didn't know about the Big Wheel class, she told me to look for an activity that was outside my comfort zone.  She said I had to get out of my bubble.  She was very kind about the request.  She gave me credit for keeping Meaghan healthy and getting her strong again.  It was a tough pill for me.  I promised that I would consider it.  I couldn't imagine there being a suitable activity in February so I kinda wanted to just move on and forget about it.  The very next morning, I couldn't believe it, the VERY next morning, there was a email from HoCo R&P practically begging people to register for a class that started that day.  It was just what "we" needed.  One hour a week of time to make friends and exercise at an indoor gym on a small scale.  The class has been a big hit.  Meaghan, Jonathan and I have all made new friends.  I was extremely worried about Meaghan catching a cold or worse.  I thought she had by the end of the first week.  She complained of a sore throat but then seemed better right away too.

For 4 weeks I kept a close eye on Meaghan and her symptoms.  She sneezed and sniffled but I kept hearing that she was ok.  I didn't believe it, I couldn't believe it.  I was living in a nightmare.  I was having flashbacks of February 2012 and worried about when, not if, we would be back in a hospital getting more bad news.  Friday, 3/7, I had Meaghan back at the CF Center at Hopkins.  My head was throbbing, I had a huge lump in my throat and a tightness in my chest that was suffocating me BUT the whole time Meaghan was in high spirits and seemed not to notice my struggle.  I waited with Jonathan while Meaghan went to the PFT lab (pulmonary function testing).  Waiting to hear from the doctor about what Meaghan's numbers meant was excruciating.  I could not believe my ears when she told me that Meaghan's numbers were up from her last visit.  We talked about Meaghan's sneezing, sniffling and bad attitude.  Then in the cutest doctor way, Dr. P sat back in her chair and said she had a theory and that I should believe  Meaghan is healthy.  While we didn't hit the pseudomonas "hard" this time we did try a new treatment for it.  Dr. P said she feels that the sneezing and sniffling are Meaghan's body's way of ridding the dead bacteria trapped in mucus that is thinner now because of the success of the treatment.  So, as an added precaution, she prescribed an oral medication that she called, "the 2 in the 1-2 punch pseudomonas sometimes needs."  Meaghan has been on this medication before but she was always "sick" when we tried it.  Starting it again now seems not only reasonable but necessary.  For the first time in over 2 years, I took a deep breath and felt a wave of hope spread through my body.  Still, it's a hard thing to handle, I don't think I can trust it. 

First baby tooth fell out!

There is no telling how long Meaghan may be pseudomonas free.  Or even if this is true, we've been pseudomonas free before.  I'm just trying to focus on the positive for now.  We have a ton to look forward to.  Jimmy is turning 12! on April Fools Day so I've cooked up some pretty fun stuff for him.  Baseball season is starting and this year Jimmy and Jonathan are both playing.  Meaghan has asked to play tennis so she is going to take lessons starting April 8th.  We think we have a plan for Meaghan to start school after Spring Break. That's where I have to stop.  I feel my body tense up and I start to freak out.  These are all exciting times and Meaghan is beside herself looking forward every day to joining her kindergarten class.   

Check back next week.  Hold me accountable to my new SMART goal of weekly updates.

Hugs and God Bless

Happy New Year!

 

You know a huge snow storm must be headed to the east coast if I'm on here writing another post hours after my last one.  There is no need to be alarmed, we are all well.  New Years Eve was much like any other night in our house.  One exception being little kids ate spaghetti for dinner while watching a movie and also that Jimmy stayed up with us to ring in the New Year.  We like our quiet little existence, I know it's not what most people like but it suites us just fine. 

 

Anyway, last night I had a hard time sleeping because this blog and how I planned to use it kept nagging at me.  I mean to share our journey through CF with everyone and I've been missing that lately.  Meaghan seems like most other newly six year olds on the outside.  Oh yeah, how could I fail to mention that last night.  Meaghan celebrated her 6th birthday last month.  It was a quiet, family only thing this year.  She wanted to have a camp out so we did the best we could for MD in December.  We put the tent in the living room in front of the fire.  A few people know that we are not a cake and ice cream celebration family.  We do brownies, cheese cake, donuts or anything the birthday boy or girl desires.  Meaghan wanted Hershey bars and marshmallows so that's what she got.  It was pretty cute on the cake stand all lit up with candles.  No toasting or graham crackers either, just chocolate and marshmallows.  What can I say, she knows what she likes.

 

Ok, now that's out of the way.  I'm going to tell you what's really been going on.  Meaghan is doing well, that is true.  If I may take us back a little while though, Dr. M told me in August that Meaghan wouldn't be starting kindergarten with her class and that was a kick to the chest.  Almost six years earlier we sat in his office and he told Jason and I she would go off to kindergarten with the "cure" in her pocket.  I got stuck there a while.  But, she's been home all this time and we've been doing great because of it.  Meaghan may not be out there making a class full of friends but she's also not catching every germ they bring with them.  I do what I think is best in the moment.  My whole reason for living is to raise the three gorgeous children God blessed me with to be adults.  For Meaghan, I have to keep her healthy enough to live to be an adult.  I'm not perfect and I'm not breaking my arm patting myself on the back but Meaghan is doing as well as she is today because of the way we take care of her.  I know this much too, Meaghan is happy. 

 

One other major development in our lives.  Beginning the end of October, Meaghan and I make almost weekly visits to The Kennedy Krieger Institute to meet with a behavioral psychologist.  Being a child with serious health concerns and sudden disruptions to her regular routine has left Meaghan with fear and anxiety that spread far beyond the walls of her hospital room.  Through the upcoming months of therapy we hope to uncover the deeper meanings, create a plan to help her cope and set her on a path for real success in navigating the CF journey on her own.  So far, Meaghan is enjoying getting o know the therapist and building her "bag of tricks". 

 

I am learning a lot from the time we spend at KKI too.   I do not always spend time with Meaghan and her therapist and that is really weird for me.  She's only 6! Meaghan doesn't seem to mind it like I do.  But, I put on my brave, everything's ok face and watch the door close behind her.  I have gained a lot of insight from my chats with our therapists and I accept that things have to change.  Even that they will probably get worse before they get better.  I use to think of my life as a CF mom as a ride on a roller coaster, I hate roller coaters and always have.  Lately, I realized that this is not so much like a roller coaster but a carousel ride.  Sometimes a really fast, jerky ride and others there's plenty of time to look around and soak up the lights and the music and laughter.  No matter what though, this ride has lots of ups and downs, I can't always see what's coming, I often still feel dizzy.  I think I'm going switch back to Meaghan Me Dizzy, it is the most fitting title to my life. 

 

Best of all, I understand what true joy is.  My life as Meaghan's mom has been a life like many others can not understand, thank the Lord for that.  It all started with the bliss I felt in learning I was going to have my second baby, the agony of hearing that that night she may not survive and then the relief I felt that she had.  The journey through all the events and emotions has brought me to the place I am today.  It is an ongoing process but I feel like I have finally found my joy.  While my circumstances have not changed, the life I know today can at any moment.  Today Meaghan reminded me of that.  Out of the blue, she started talking about what she might need "when" she goes back into the hospital.  She's not sick, there's no reason to talk about it but she really wanted to.  So she got out a pencil and piece of paper and started writing.  This is my reality.  Just an hour earlier we were painting our nails and playing with new toys, having a GREAT day.  Now I am flooded with emotions.  Does she know something I don't?  I am amazed whenever I am in her presence.  

 

 

Wrapping Up 2013

 

 Well, once again it has been far too long since I last posted an update.  A lot has happened since my last post.  First was Halloween.  We kept it low key and beat the rain shower.  There is still candy in the snack drawer, I guess I shouldn't complain that the kids don't go crazy for it.  They definitely didn't get their restraint from me. 


Meaghan also visited the hospital for her biannual liver study ultrasound.  It took a very long time, almost 45 minutes, to get all the images the doctors want.  Meaghan was SUPER through the whole visit.  Afterward we visited a friend and got McDonald's.  It's kind of her thing and it makes the waiting, poking and barrage of questions more worth her while.


This is a major accomplishment for Meaghan.  She visits this playground regularly during Jimmy's baseball season and has always been too afraid to take the first step.  On this day she decided not to be afraid anymore and she made it all the way across the very first time.  She did slip once or twice but realized the ground was quite padded and it wasn't such a big deal. There's no stopping her now, she swings from bar to bar with tremendous ease.  She is so proud, me too.

This is not the best picture but, wow, we did it.  On November 13th the five of us flew to Disney World.  Getting there was actually one of the easiest things about the whole trip.  The kids LOVED the plane.  The weather was GREAT!! Our accommodations were not quite right for us but still very nice.  There were no long waits in any lines or huge crowds.  This was an excellent time of the year to visit.  We only visited two of the parks and Downtown Disney, but it was the best time we've spent as a family.  I'm not in any hurry to go do it again either though.  I'm very pleased that we were able to keep our promise to Meaghan and the boys by visiting Disney World before her 6th birthday.



When we came home from Disney it was official.  The work crew was done in our house and we could start moving everything back into place.  We're still working on that, it's been a little slow going.  It was a LONG, HARD project and I am HAPPY that it's all done.  Now that I'm living in it, it is everything we hoped for.  Everything has a place and there is room left over. 

 

 A couple of times this fall we had an opportunity to visit friends and the Howard County Conservancy for nature crafting lessons.  Meaghan just loved this.  She made a butterfly and two other owls that I didn't put pictures of here.  Thankfully she isn't still collecting nature to craft with at home.  She's still a big time crafter but here at home we use paint, clay, pom poms, yarn, strings and paper.  It can get messy but I'm not constantly worried that a bug will crawl out of something we're holding. 






This is our favorite new Christmas decoration.  The kids finally wore me down and we bought an inflatable for the yard.  He's the third one Meaghan picked up.  Each time they got bigger and bigger.  Our Frosty is a ridiculous 11.5 feet tall.  He sometimes suffers from a bad back or maybe he was a little over served.  Mostly he's a great addition to our lights display. 



This is Meaghan's "Word Wall".  There are more on other surfaces now.  These are words she reads by sight, no sounding them out, she just has to know them.  She uses it to help her spell while she writes in her journal and other things.  Even though she's not spending time in a kindergarten classroom, she is loving learning.  The huge benefit is that she is getting stronger and bigger and has been healthy since we brought her home from the hospital again.  She is aware of how different it is for her to stay at home but also very understanding about why.  She's a real smart cookie.





Speaking of cookies.  Meaghan and Jonathan helped make snicker doodles this year.  They're Meaghan's favorite cookie.  Check that, they are the only cookie she'll eat.  Thanks to all the wonderful ladies who baked for this years cookie exchange, we had many delicious treats to enjoy.  Ms. Danielle's rolo surprise snicker doodles are the only ones Meaghan would eat.  Jonathan hasn't met a cookie he didn't like so I had to try to trick him.  I told him not to eat the ones I liked the best but when he caught me eating them the joke was on me.      





Meaghan has been collecting the Lego friends Lego sets for almost two years now and this is the biggest one yet.  She got it as a gift on Christmas night and by 11am the day after Christmas she was completely finished with it.  She quickly moved on to the camper and helped me finish some of Jonathan's new Lego sets too.  I love it, I think it is so cool that my girly little girl has a knack for such complicated tasks.  She finished a 612 piece set in 4 hours.  






After all that time inside on a cold winter day, it was absolutely fabulous to get outside and play.  We took our big wheels, new r/c vehicles and Nerf swords to a nearby park.  Jimmy had a chance to use a bunch of new baseball "stuff" while the little kids soaked up the sun with fun of their own. 


2013 is just about over now.  I have to say that when I look back over it, it was pretty good for us.  We accomplished some lofty goals, kept our promises and grew closer and stronger as a family.  We are truly blessed beyond anything I imagined.  I look forward to every tomorrow and wish each one of you the same kind of happiness, peace and joy that I have found this year.

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.




         

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!

Hello All.  No excuses, a month has gone by and no word from us, I am sorry.  There have been no changes in our status so it hasn't felt right to write.  We've been taking advantage of the warmer weather and the sunshine, just trying to make every moment memorable.

Meaghan finished her first (new) 28 day cycle of Cayston.  The nebulized antibiotic to treat the pseudomonas infection she has been battling since July 2012!  There are kids with CF who have pseudomonas infections for years and live full vigorous lives.  Pray with us that Meaghan eradicate the infection.  For now Meaghan continues to live to her life as if there are no complications.  She is a vibrant and happy girl.

Just to put some things in perspective for you, try this.  I read that breathing with CF is like holding your nose and breathing through a drinking straw.  Do this for 60 seconds.  Imagine having to do that all day, every day.  Meaghan can not choose to let go and breathe freely.

The CFF is working diligently to make the constant battles against lung infections a thing of the past.  Visit their website to read about the amazing progress being made in the treatment of CF at: www.cff.org then choose to support Meaghan by visiting one of our sites to donate.  Either to Great Strides or the Xtreme Hike, they are both CFF events Jason and I participate in, with a reputation of committing over 90 cents of every dollar donated to research and development of a cure.  

Xtreme Hike: www.cff.org/LWC/MichelleJaecksch
Great Strides: www.cff.org/Great_Strides/MichelleJaecksch

With love and hugs for all!