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!

This news is long overdue.  We heard from Meaghan's doctor that the year long treatment of the MAI infection was SUCCESSFUL!!!  As of Thursday, March 21st Meaghan stopped taking 3 oral antibiotics, Rifampin, Azithromycin, and Ethambutol.  Those are big words for grown ups but Meaghan could say them all and tell you why she needed them.  Now she is very proud to tell you that she no longer needs them.  She also knows what good news it is because now she has no restrictions on meals, her belly feels better and her appetite is improving.  Just to be very clear, this is extraordinary news.  When Meaghan was hospitalized and diagnosed with the MAI infection over one year ago, we were warned that all we may be able to expect was to colonize the infection.  Meaning that Meaghan's body would have to learn to "manage" the infection.  MAI is a very rare type of infection and there was no record of someone Meaghan's age being treated for it.  Johns Hopkins put everything they had into treating Meaghan aggressively to give her the best chance to kick MAI.  We owe them such a debt, Meaghan is MAI free and all the energy spent to protect the rest of her body from harm was successful as well.

Today, Meaghan is being treated again for a new pseudomonas infection.  We were first diagnosed with  pseudomonas last July.  Regular readers of the blog know what happened next but for anyone who's new I will share again.  We tried an inhaled antibiotic but it didn't work.  Then we tried the inhaled antibiotic plus an oral antibiotic.  That didn't work either.  So Meaghan went into the hospital for a bronchoscopy and 3 weeks of IV therapy.  That worked!!! But we got pseudomonas back 3 weeks later.  So it was time for a new inhaled antibiotic.  It worked, temporarily.  Meaghan has to use the inhaled antibiotic for another 6 treatments.  Each course is given 3 times a day for 1 month.  Then we take a month off before treating again.

You may wonder how we live like this.  Honestly, it isn't easy at all.  But it is so important to stress that we choose to LIVE.  We lean on each other, encourage each other, cry together and thank GOD for every day we have together.  CF is our gift.  As a family, we have grown and feel that what we've gained from living with CF outweighs all the rest.

My take away for today, go love each other and support each other.  Especially those of us who fight this terrible disease.

Whoa, I knew I was a little behind, but...
It occurred to me this week that the blog is one year old now.  "Happy Birthday!"  So many things have happened in the weeks since my last post so I want to try to catch you up.  First, Jason and I attended the CFF's Annual meeting.  Dr. Beall, President of the CFF, reported so much good news.  What it boils down to is this, the cure for CF is more than just a possibility, it's a reality.  A small percentage of patients with a more rare form of CF are benefiting from a drug called Kalydeco.  It is the first CF drug targeting the root of the defect and it works!  There are other drugs in the pipeline that when combined with Kalydeco positively impact the quality of life for a greater percentage of CFers.  We were assured that while the CFF continues it's search for a cure they are 100% committed to their mission to improve and lengthen the lives of all who suffer from this terrible disease.    

Next, I met with Meaghan's preschool teacher to discuss her progress for the year.  Honestly, I didn't have any concerns so I went in calmly.  I heard that Meaghan is a bright little girl who is respectful and always ready to share.  She follows all established rules and exceeds most of the goals set for her stage of development.  Being in a small class this year has really allowed Meaghan to shine, I am so proud of her.  Look out kindergarten, here she comes.

Meaghan saw her eye doctor during the last week of February.  Her color vision and optic nerve still appear to healthy.  She loves to visit the eye doctor, they do an amazing job of making the visit a game for her.  The drops for dilating her pupils was a fight however.  The news was all good, that makes me very happy.

Meaghan continues to prepare for her ballet/tap recital.  The parents were treated to a sneak performance in the studio a couple weeks ago.  Meaghan is so excited about showing everyone what she has learned and I can hardly wait.  We saw her costume in a picture and hope to get them in soon.  I don't really know how I ended up with such a girly girl but it is so cool!

The thing you're all probably anxious to hear about is Meaghan's visit to clinic.  We were there on Friday, 3/8.  I have some good news to share and another "wait and see" moment.  Meaghan took her first Pulmonary Function Test that morning.  She did a great job.  The numbers we saw stand alone but by all accounts, Meaghan's lung health seems good.  She had an above expectation weight gain and grew 1/2 an inch taller too.  At her last visit her height and weight put her at a BMI of just 20%.  This visit she boosted it to 39%!  Optimally a CF patient should strive for a BMI at 50%.  Meaghan has only seen that once in her life but I have a good feeling about seeing it in her future.  The doctor took a throat culture, that's standard at all visits for Meaghan, she is a super star at those.  They are checking for any new infections.  To date Meaghan's culture has not grown anything, phew.  During the visit our doctor shared that the culture they collected at Meaghan's last bronch has not grown the MAI infection to date.  I wish that was it, no more MAI, but I learned that we still have to wait a few weeks before we can be considered "cured".  I long for that day.  We'll be able to drop several of Meaghan's medicines and lessen the dangerous side effects of her treatments on her little body.  Not to mention the worry and stress factor.

The last thing I want to share for tonight is much more fun.  Meaghan spent a special afternoon with her daddy last weekend.  It was a special time for me to be with my boys too.  On Saturday Jason took Meaghan to a nearby horse stable for an introductory lesson.  Jason was completely impressed, Meaghan too.  Until the time came for the horse to walk with Meaghan on his back.  That was when Meaghan said no more and got off the horse.  She says she'd like to go try again when she is a little older, I can't wait.  What I find so funny about what happened is that Meaghan has ridden on the back of a camel already.  He was much bigger and there was no holding her hand, oh well.  Meaghan knows what she wants and there is no one in her world who can tell her differently.




Thank you for continuing to read about our journey.  It's a story with many twists and turns.  One tough year is behind us now.  It's time for new beginnings.  I believe we are going to celebrate lots more in 2013!       

This was another good week considering.  Jimmy is still getting over his cold and Jonathan came down with one that makes Jimmy's look pathetically weak.  Thank God that Meaghan has been spared this round.  She started acting sick on Sunday but after a good nights sleep, today she is back to herself.

We spent the morning doing our chores and then took a walk along the river in the Daniels area of the Patapsco State Park.  It was a little cold but the sun was shining and well what more excuse do you need to spend time together outdoors.  We didn't get far, too much to see ;)  Jason and I learned one thing from this outing, Jonathan is not a good partner for training.  Anyway, I enjoyed it and until we got 100 feet from the truck, the kids did too.  Jimmy jumped over the stream and then decided it was a good idea to touch the water.  In retrospect, Jimmy would agree, it was WAY TOO cold to touch the water.  Meaghan wanted to "glide" down to the other side like Jimmy did but we wouldn't let her so for the next 30 minutes she cried and made us suffer for it.  Oh well, Jay and I are together on what a bad idea it would have been to let Meaghan jump the stream.

The water fall picture was part of an email I received today to keep me inspired for the Xtreme Hike.  It is just one of the many scenes we will enjoy during our time on the Tuscarora Trail.  Jason and I are among the 9 spots filled of the 40 possible for Xtreme-ists.  There has only been one interest meeting to date.  Another is scheduled for the end of the month in Frederick. I don't believe for a second that the CFF will have any trouble filling the spots, I think that they will have to turn people away in the end.  I am so thankful that I learned about the event when I did so that I could be registered, worry free.

On Thursday this week, Jason and I are attending a meeting where Dr. Beall will speak on the progress of the Cystic Fibrosis Foundation.  Dr. Beall is president of the CFF and I have always been inspired and filled with hope after hearing him speak.  I am looking forward to hearing what promises he has for patients with Meaghan's genotype.  Kalydeco has been wildly successful for patients so far and testing it with newer therapies could be the answer for Meaghan.

We still haven't heard from the CF clinic about test results.  That could be good or bad, but honestly it's probably that it hasn't been long enough.  I am anxious but feel in my gut that we're okay.  The MAI infection was not detected in the two previous bronchoscopies so why should it be there this time?  If there was anything else growing in her cultures I think I would have heard about it by now.

Our prayers are being answered, we are a blessed family.  Thank you to all who have kept Meaghan in their prayers, she is a better little girl because of it.  What things we have to look forward to are unknown to us but whatever happens, we will be okay.     

Today Meaghan said she was going to be an
astronaut when she grows up. 

 

That face says, "I know it all."

I am so excited!  Overall this was a very good week.  But there were some very BIG highlights and I want to share them all with you.  From the beginning, Meaghan and I had a great "girls" day on Tuesday.  We made smoothies and tried a new vegetable together, bok choy, we both loved it.  Then we watched Tinker Bell in The Secret of the Wings.  It was really awesome to spend that kind of time with her, I will treasure it always.  Wednesday was ballet day.  She is practicing for her spring recital.  I am trying not to hover and she seems to appreciate it.  She gets to show me all her "moves" and be the teacher.  Thursday morning we had a follow up appointment with the ENT.  First they tested her hearing.  I had no idea how it was going, it drove me crazy.  I was so proud of her though, she sat up so proper and followed directions to the letter.  Since I didn't know what to expect I kept my prep to a minimum.  She had to sit in a sound proof booth, alone, but she went right in and like I said, was an angel.

Ok, ok, enough of that, it's good news but not what we've been waiting for.  I got a call Thursday afternoon from the nurse at Hopkins.  I knew I'd hear from her but I thought the news would be bad.  Well it was quite the opposite!  Meaghan's culture for pseudomonas was NEGATIVE!!!!!  She thought I didn't hear her because I was speechless.  I asked her if I needed to wait a few more days to be sure.  Then she laughed and said, "No, it's negative!"  This is incredible news.

But I forgot something.  On Wednesday night Jason, Chris and I went to REI in Columbia for an introductory meeting for an Xtreme Hike event sponsored by the CFF.  I was blown away, I knew immediately I was going to do it.  A small group of dedicated fundraisers will hike a 20 mile stretch of the Tuscarora Trail in the George Washington National Forest.  I hear that it is a beautiful hike around Signal Knob.  The 20 miles will be completed in about an 8 hour period on Oct 19th.  There are experienced hikers on the committee who have created a training guide and are organizing weekly training hikes beginning in April.  I have no words for what this means to me.  I have not felt this passionately about anything like this, ever.  The hike is coming up in my life at just the right time.  I feel this in my bones, so much so that I didn't just register to hike, I am going to lead a team.  Nothing about this scares me.  I need to raise $2,500. and prepare my body for the Xtreme but it pales in comparison to what people living with cystic fibrosis do EVERY DAY of their lives.  I am doing all of it for the love I have for my daughter and every other beautiful, amazing person who suffers with CF too. 

I am just starting the process but I need your help.  Tell me I can do it and offer to contribute to the cause.   

God Bless  

Today was Meaghan's fifth broncoscopy in a one year time period.  This time it was outpatient.  Our experience was so positive today.  We had no trouble getting to the hospital in plenty of time, probably thanks to the lighter traffic post the Ravens big win last night.  We had enough time that Jay and I had a cup of coffee before checking in at Pre-op.  I hadn't even sat down in the waiting room before our name was called and Meaghan was checked in.  Dr. M was ahead of schedule this morning so Meaghan's procedure started 1/2 an hour early.  She was out of surgery and we were at her bedside by 10:30am.  The nurses said everything went very well.  Dr. M sat with us and said he was, in general, happy with what he saw.  Meaghan has some fluid in the upper and middle lobe of her left lung.  That is different from what we saw in November.  Some samples were collected so we'll have to wait and see if any "bug" grows.  First results could be in by 24 hours post bronc.  Pseudomonas is one of our big concerns and that could be 48 hours before we hear.  The really big concern is MAI and that slow growing little bugger could take 2-3 weeks to show up.  We have had 2 clean MAI cultures already so we have reason to be positive for this one too.  The nurses will call us if there is pseudomonas or some other bug by later this week.  Once we hear about pseudomonas I have to schedule a follow up clinic visit for 1 month from now. So, for now, we wait and keep up with current schedule of medications and therapies. 

I hope that came out sounding optimistic.  I'm trying to stay positive, things went very well.  Better than I expected.  It was a long day and my head is spinning, but I am smiling.  We were home before 1pm with Meaghan's favorite in hand.  I never would have guessed that she would eat all of her 4pc nuggets and leave french fries on her plate.  Anyway, she's eating, drinking and playing just like today's procedure never happened.  We're still going to have a"sick" day tomorrow.  Jonathan has school so Meaghan and I will get to hang out for a little while, just us girls.  Today, we had a great afternoon.  It was Jonathan's birthday so Meaghan helped me "make" and decorate his cake.  He asked me for a mountain with a dragon and knight in a sword fight.  He got his wish and he was very happy with the result. 

I'm so happy that today was a great day for everyone.  Thank you all from the bottoms of our hearts.  Your support has given me strength to fight along side Meaghan against cystic fibrosis and begin to recapture pieces of who I use to be as well.  Every day we get better, one breath at a time.

God Bless.