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!

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.         



Ok, finally we had to get out the roller coaster for the kids because it looks like this winter we are just not going to have any snow.  They LOVE it.  With a good push they can land down near the shed.  No kidding they spent over 2 hours riding this day.  It was well worth it.

The real reason that I am writing tonight is to share with you that Meaghan has another and hopefully final (at least for a while) broncoscopy scheduled for Monday.  Yes, this coming Monday 2/4/13.  Some of you may know that that day is significant for our family, it's Jonathan's 4th birthday.  That poor baby seems to get the short straw when it comes to birthdays every year.  I'm going to have to make this up to him for years to come.  Meaghan is scheduled for an outpatient procedure and God willing she'll be comfortably home by late afternoon that day.

This broncoscopy is primarily to test for the MAI infection we found one year ago (2/5/12).  If what we believe to be true is confirmed with this test, Meaghan will be able to discontinue the three oral antibiotics she has been taking all year.  We will also learn if the last round of inhaled antibiotics to eliminate pseudomonas was successful.  We will know soonest about the pseudomonas, about 48 hrs post bronc.  The MAI can take weeks to grow in a culture so we'll just have to wait.  Once Meaghan is off of the antibiotics we are looking forward to seeing her GI tract reset and find a healthy balance again.  We have spent so many hours working on establishing a calorically dense meal schedule that allows Meaghan to continue to gain weight to spite her GI upset.  Meaghan's immediate future still has a lot of unknowns but there is reason for us to feel hopeful that this year is one we can file in the "Let's not go there again" category.

Thank you all from the bottom of our hearts for your support through the ups and downs.  Cystic fibrosis is still very much a part of our daily lives, like so many other people we love.  Precious lives are lost every day to this terrible disease and our fight is not over.

Alright, I did it again.  Not that a lot has gone on this week but I left the blog untouched for more than a week.  I hate it when I do that.  Every day I think of something that I think you all might enjoy or feel added something to your understanding of what living with cystic fibrosis in our house is like.  I don't always have time to put it all into writing and I have put so much pressure on myself to include pictures of my angel.  Like this one.  She dressed herself this way and went to her Tap and Ballet class.  She loves her class and just saw pictures of her recital costume.  She is so excited to be on stage and is practicing her "moves" all over the house.  I am so happy to see her getting into something.

Now, today we had a follow up visit with the ENT.  Overall it was good.  The hole in her eardrum is 2-3 times the size of one that drs would put in for tubes but it looks clean.  There is no infection and the fact that she is hearing (some) proves that the hearing bones are fine.  He feels strongly that she will heal on her own and regain all of her hearing.  It will take time and it could be a  couple of months.  She has to keep her ear dry still but doesn't need the drops any more.  He laughed (I didn't think it was too funny) that she is taking so many antibiotics already that they probably helped keep infection out.  Don't get me wrong, I like the dr a lot.  I took Jonathan to the visit with us.  I guess I could have asked for help but I was hoping he might learn from the visit.  Wow was I right.  Dr. Williams had a talk with Jonathan about not poking at people.  He told him how dangerous using our hands when we are angry can be.  I think Jonathan was listening because he was able to talk to me later about alternatives to hurting his sister.  I just got the title of a book (There's a Volcano in my Tummy) that sounds right up Jonathan's alley, I can't wait to read it and share it with him.

Thank you all for coming back to read about us.  Sharing our story and hearing from everyone helps get me through some of the toughest times.  Not every day is a struggle, living with CF has blessed our family in immeasurable ways.  

The ENT visit went really well today.  It was just like I told Meaghan it would be, no surprises.  He did some really cool stuff with a tuning fork.  After he took a long close look at Meaghan's ear he told me that there is a big scrape in her ear canal and a cut or tear in her eardrum.  He thinks that she will heal on her own and be back to "normal" soon.  He said 95% of the time injuries like this heal on their own.  If we have any different result there are options but that we should not worry over this.  I have to take her back to see him next Thursday.  We have to keep using the ear drops through Sunday to ward off any infection and then eventually have Meaghan's hearing tested.  The doctor did seem a little concerned about the IV use of Tobramycin and that we haven't had a baseline hearing test.  Continued use of the IV form of Tobramycin can lead to hearing loss and CFers use a lot of that drug.  I think what I told someone today was, "That was the best bad news I could have gotten."  What I can tell you is that Meaghan has a super human tolerance to painful situations.  She isn't complaining at all I have not given her ANYTHING for pain.  She lets me drop the medicine in her ear and tape a cotton ball to her twice a day.  By now I would have shut down, just how much can a little girl take.  

Today went pretty well for Jonathan too.  He could barely breathe without me knowing it.  I have been thinking and praying hard on just what's going on.  My sister-in-law let me bend her ear and offered some perspective.  I'm seeing things a little clearer and feel like I might have some new approaches too.  Tonight Jonathan and I talked about his feelings when he got angry.  He wanted me to write it all down, then he wanted to write.  We decided together that when he feels angry we should talk and make a game out of his feelings.  He wants to pretend he can push his angry feelings down out of his feet.  It sounded funny but there was such a dramatic change in both of us when we worked together.  Maybe we're getting somewhere.  I'll take it for today.

There is never a dull moment and things are rarely ever the same from one day to the next.  This is my wonderful life, I'm the luckiest girl in the world.

Ok.  So I still can't get a picture on here from the iPad. Ugh!  I will fix this tomorrow.
I know you haven't heard this one from me yet.  Meaghan made a trip to the emergency room today.  We didn't actually go inside because of the widespread flu.  Our pediatrician found an ENT who heard our story over the phone and felt sure that we'd be alright til the morning.  Anyway, she and Jonathan we're up to no good with each other again and Meaghan lost the battle.  I was in the kitchen talking to a neighbor and heard the fight begin.  I never imagined it would go so wrong or I would have gotten into their business a lot sooner.  Long story short, Jonathan used a miniature light saber to pierce Meaghan's eardrum. Well, we don't know for sure yet if it is the eardrum or the canal.  The ear, nose and throat doctor will see Meaghan in his office in the morning.  For tonight we are watching for increased bleeding and lots of the same symptoms of a head injury. We put drops in and taped a cotton ball over it. The good news is that she isn't complaining of much pain. For now she is sleeping soundly.

It goes without saying that I am furious with Jonathan.  I thought that we were beyond this kind of behavior.  I believe he has some remorse for the situation. It all happened so fast for him. First, Meaghan did something to make him angry, he chased her, then, Meaghan was crying.  Thankfully, my heroine, Mrs. Nancy, took he and Jimmy to her house so I could get Meaghan to the ER.  Anyone who has spent any time around Jonathan knows that I have my hands full.  He is "energetic" or "spirited" or "all boy". I just call him a monster.  We have talks, time outs and lots of other punishments but I have not been able to stop him from expressing himself with such anger and violence.  He's not a bad kid, in fact, his teachers have very nice things to say about Jonathan.  He is helpful and polite and follows the rules in school and at church.  This is by far, the very worst he's behaved, ever.  I really wish I knew what he was thinking and how I could help him.

Jonathan and I talked tonight and then the whole family sat down together and talked about the way we should all be treating each other.  Today was the day for me that changed everything.  I was tired and frustrated before but now I'm done.  The mean, hurtful way that these kids have been with each other stops NOW.  Not one of them can tease another for any reason or use their size, age or difference to their advantage.  I thought that they were working things out like siblings do, mostly they might have been, but Jonathan took it too far today.

We'll see what tomorrow brings.  Meaghan's appointment is for 11am in Towson.  She and Jonathan are still friends, no one is harboring any kind of a grudge.  I should be thankful for that.  After talking with everyone I think they understand the severity of what went on and why it must stop.  I just pray that no permanent damage has been done to Meaghan's ear and everyone has learned an important lesson.

I just remembered, I felt great about how well Meaghan has been doing.  Cystic Fibrosis is not my biggest concern right now, who'd have guessed it?

We are still taking advantage of the beautiful January days we've been having.  I recently shared with a friend that Meaghan seems more well and healthy to me than she's been for a while.  Maybe it's the sunshine and fresh air or maybe it's the new medicine.  Whatever it is, I LOVE it.  I also shared that I get very nervous to vocalize these feelings.  The way I've been trying to live my life was also her advice, "One day at a time, Michelle".  It is also very important for us to celebrate the small victories, be happy for now and thank God for our many blessings.

Who knows what the next days, weeks or months have in store for Meaghan or the rest of us.  I care but honestly those aren't the thoughts that I am allowing to shape my life anymore.  The sun has been shining, the temperatures are crazy warm for January and we're all smiles.  The kids all want to have lots of snow to play in and it would be nice, maybe February will bring it.

I'm going to let these pictures do most of the talking.  I don't have a lot of new news to share.  But I wanted everyone to see what we've been up to.  Today we spent some time playing outside.  We did lots of laughing, it was a great day for all of us.  I hope that all of you had as much fun and the Hope, Joy, Love and Peace of the holiday season continue through the new year.