Hello.  I don't know where this blog will go tonight so please bear with me.  I am on to say "Thank you!" to everyone who supported me throughout the weekend.  If you don't know what I am talking about, that is ok.  You didn't miss anything.  We are still doing all our medicine and therapies and waiting to see the doctors in a few more weeks.  I met with and shared with moms this weekend who are in the fight against CF and some who don't have CF but face their own challenges.  The "things" we do, this crappy roller coaster ride, is sometimes the most unbearably helpless/hopeless feeling.  There are people whom I know I can call on but either I chicken out or I feel afraid to upset/annoy/burden others with my issues.  I am a broken record.  It feels like nothing ever changes.  "Meaghan is still taking a ton of medicine, she spends countless hours doing therapy, she's tired and cranky.  BUT, she is brave and strong and compliant."  I HATE IT!  Why does my little girl have this?  Why can't science fix this NOW?

How long do we have?  Making all these special memories now sometimes feels wrong.  I wish we had learned to live like this long before some insensitive NICU doctor put a ticking clock on my daughter's days. No parent should have to do what we do.  Getting out of bed some mornings takes all the strength I have.  It's real when I am awake.  I have to give her pills, "squirts", and breathing treatments.  I hook her to a LOUD machine that squeezes, shakes and pounds her chest and reassure her "This will make you better, we need to get that mean bug out of you".  Day after day, always the same thing.

I am really sorry.  I guess I am still being a broken record.  Getting bogged down in all the negative doesn't get me anywhere.  Meaghan has big dreams, she's making future plans.  If she can do it, I can too.  God loves my little girl, He brought this special angel into my life and I thank Him, over and over again.  If He gave her the foresight to make choices for her future, who am I to doubt them.  So no more will I just say the words, I truly support Meaghan's dreams.  She should have everything she wants, a life spent exploring the world, marrying Prince Charming in a sparkling pink wedding gown and having lots of babies.

Oh, what a day

So many things went on today.  I should be careful what I say, the day isn't really over.  Meaghan is sitting with her daddy doing the evening part of her treatments and therapies.

We had a lot of heavy rain today so I decided to drive the kids to the bus stop to keep everyone dry.  Backing up for a second, I started having trouble with the van over the weekend, completely out of the blue.  It's only 3 1/2 years old so I was really upset about it.  So, in an effort to make it easier IF I had real trouble I backed the van into the garage once Jimmy was off to school.  What a good idea.  When Meaghan, Jonathan and I were all loaded up and ready to leave for preschool I put the key in and turned to hear just a clicking noise.  Backing up again.  Jason bought me a new battery and tools to change it to keep with me in the van for such an emergency.  Unfortunately, I was all alone at home and there was no time.  Thank goodness for GREAT neighbors.  I moved one kid seat to her van and made it to preschool by 1pm.

Honestly, I came home, declined an invitation to "hang out" and had myself a good hard cry.  I'm glad I did it but don't feel better for it either.  I was under the impression that something like that would help me feel better.  I wanted to be more productive today.  I wanted to do more than wash last nights dishes.  I have laundry and cleaning and cooking and "chores" I want to start working on with a few hours all to myself now.  I need more than the worry in my head to keep me busy.  I miss people in my life who I can cry with while they push me along through the day to get my house in order.  I'm in a better place than I was 6 months ago or even 4 1/2 years ago but my sadness, frustration, anger, confusion and self pity are really getting in the way.  I know we are blessed and I thank God every day for those blessings.  There are others with and without CF whose lives are more stressful, more challenging than ours.  BUT, big but, I haven't found a place that makes sense to me.  A place that I can feel sad etc... and still appear to the outside world to have it all together and get "stuff" done.

Meaghan, on the other hand, has it all together.  She asked me today about the newest medicine, if it would hurt.  Then she told me that she would really breathe the Tobi so it would work this time.  I assured her that while it is important for her to breathe the Tobi, she was doing an absolutely fabulous job at trying to get better.  That I am so proud of her for being such a big, responsible girl.  She names her medicines, knows when and how they need to be taken, and why she needs them at all.  I told her she didn't have to change a thing, just be happy, let mommy do the rest.  It was a really hard thing for me to say (not to Meaghan) that I would rather Meaghan have a shorter life, filled with happy memories and friendships than a long lonely boring life.  I want it all and it just SUCKS that I feel like we have to choose.

The silver lining, we are truly living our lives now that we are facing our disease head on.  We are focused on spending all the time we can together doing fun things making special memories.  I asked Jason yesterday if we could just stay at the caverns forever.  While Meaghan lived one of her dreams there was never a thought of CF, infections, hospital stays or suffering.  We smiled, laughed and shared worry free.  It was amazing.

Today was a special day.  The last thing on Meaghan's "To Do" list for summer was to camp in a cave.  That was a tall order so she compromised and agreed that visiting the cave would be fine.  With no school today Jason used some of his time to fulfill one more wish for Meaghan.  We drove to Luray for the day.  It was everything Meaghan had hoped for and more.  Everyone really enjoyed themselves.  Meaghan learned a lot about the formations and how they got their names.  Seeing them through her eyes gave me a new appreciation for the cave.  As far as the trip goes, I couldn't have asked for anything more.  

On the other hand, we didn't get the news we were hoping for from the CF clinic today.  The pseudomonas infection is still there.  The nurse called my cell during the car ride down to VA.  The plan is to restart the inhaled antibiotic, Tobi, start one more oral antibiotic, schedule a bronchoscopy for 6 weeks from now and consider placing another PICC line for IV antibiotics.  Meaghan's situation is a difficult one.  She is still on three oral antibiotics that she started in February for the MAI or non-tuberculosis mycobacteria infection that caused the pneumonia that put her in the hospital twice.  During Meaghan's last clinic visit the fellow who examined her told me that testing positive for pseudomonas after the MAI isn't hard to believe.  Lots of CFers have the same kind of problem.  Unfortunately, pseudomonas is common in CF patients and almost all of the time, they aren't able to clear it.  So Jason and I told our nurse to please tell the doctor that we want to be aggressive with this bug.  Don't get me wrong, we HATE that this is happening but we want to hit this bug and hit it hard.  So if all of this happens the way we think it will, Meaghan will have a bronc by November 1st and be done with IV's before Thanksgiving.  We'll just have to keep watching and waiting for whatever comes next.  One breath at a time, minutes, hours and days all take too long when you live with CF.

OK.  There are so many things on my mind.  I want to scream, cry and hit something.  CF SUCKS.  When you look at my beautiful girl there is no way she's sick.  But what's really going on you can't see.  She was born with this terrible disease that causes her body to produce thick sticky mucus that traps even more terrible "bugs" in her lungs.  There are medicines she takes to help open her airways and try to thin some of the mucus.  We hook her up to a big, loud machine to SHAKE it all out of her, we hope. We agreed to put a feeding tube in her belly because she was failing to thrive.  I completely believe that if it were not for the tube, Meaghan would be in a much worse state than she's in right now.  We force enough calories into her body while she sleeps to keep her growth on an even upward curve.  BUT, since her hospitalization last February we have been unable to give her the regular, full concentration in her feeds.  The seemingly countless antibiotics she takes to treat her infections make eating nearly impossible.  Again, at least we have the tube.

I can try to stay positive but my mind is wandering down a long, dark path.  I don't know where I am, is this the beginning of something so much worse?  Is this the end of all our good times?  With all this going on, how do other families do it?  I read that Meaghan's MAI infection is its own kind of lung disease.  That's so wrong.

I'm rambling now.  There is a plan, something to hold on to.  Loosely, things change very suddenly in our CF life.

Ok.  It's been a few days and here's what's going on.  Meaghan started preschool on Monday.  It was great!  I can't say enough good things about the school and the teachers.  Meaghan is in  a class with only 7 other kids.  This is very exciting for everyone.  So much can be done in a small class and I can hardly help thinking about how many germs we'll avoid by being in such a small group.  Last year I prepared a hand-out for the class so this year I did it again.  The parents were all very understanding and supportive.  I have every reason to believe we are about to have a fantastic year.  After her first day she ran to meet me in the hall and shouted, "That was the best first day of preschool, EVER!"  

Jonathan's first day was Tuesday.  His first full day is Thursday, but so far he is having a great time too.  It's very strange for me to be dropping my baby off at school.  I'm all alone, even if it's only a few hours, a few days a week.

 Next, Meaghan started her tap and ballet class today (Wednesday).  She LOVED it too.  There was another loud outburst from Meaghan after class, all good.  She made fast friends with a few girls and I met a mom who shares our fight.  It isn't her fight, it's a friend and cousin, but she walks and raises funds and awareness for CF.  I am starting to feel like the world isn't such a big place after all.  Now that I am putting us back out there I am making connections and it is an amazing feeling.  There are still many emotional times for me.  My daughter is growing up, lots faster than I can believe.  She is having lots of fun, trying new things and planning for so much more.  I am trying to embrace these moments with her and encourage future planning.  BUT, I'm just not that able to live so free from all the anxiety, sadness and FEAR that comes with our diagnosis.  I find myself asking her to slow down for me, that I have to just get through right now.  What's going on?  I'm trying to perform this CF balancing act on my own again.  I just don't know what to ask for.

I went through some of this today while I talked with the doctors in clinic.  I know she meant to be helpful but she only steered me to the Family Day event being held by Hopkins CF Specialty Clinic.  I know the event well, I co-chair the Family Advisory Board that helps plan the day.  So, I am stuck here still, with nowhere else to turn.  I talk to Jason, but he is hurting too.  I talk to friends and other mothers raising CFers.  I pray.  I thank God for every day I have shared with my family and I ask for MANY more.  I recognize that we are very lucky, very lucky.  I still hate that it is my daughter, my family who has to fight this terrible disease.  I take what I can from Meaghan.  I use her strength, courage and spirit to pull me through.  Everyone has something, but look at my daughter and learn to let it go.  

There isn't a lot of news to share from our visit to clinic today.  Meaghan's height is up but her weight is not.  Her lungs sounded good.  They took a throat culture to check for the pseudomonas infection she just finished a months worth of treatment and therapy for.  Now we wait some more.  The culture results won't be back until next week.  Once Meaghan's doctors have a chance to review all the information they'll make a decision about what's next and how soon.  To top off the day, Meaghan had to get her flu shot.  That was an extreme challenge.  It's crazy, she tells me that throat cultures and bronchoscopies are "easy peasy" and how still she can sit through blood draws but the tiny needle for the flu drove her over the edge.  Once it was all done she got her prize and the best part, she got to tell her brothers now it's time for them to get their shots too.  I might have helped her with that and exaggerated it as an upside.

Thank you.  I hope that reading this is as helpful/useful to you as it has been for me.  I don't know where it will take me but it's just like being a kid, getting there is half the fun.

Today is the best day!

Our new mantra.  Jason says he's going to tattoo that on himself for Meaghan.  I decided I want a bracelet that says, "Every day, one breath at a time".  Thank goodness the kids know no better but the past few days have been emotionally hard on Jay and I.  Stories of less fortunate outcomes swirl all around us and bad thoughts are creeping in.  We're talking it all out and  staying as positive as we can.

Meaghan seems much more tired than usual.  Her appetite is good still so I'm trying not to worry (too much).  Her mood is just ok.  She is acting very shy and her only explanation is that she feels tired.  I have no good reason to call her doctors, especially since she will be at Hopkins on Wednesday.

That's it.  On the outside, we all look great.  We smile, laugh, hug and kiss each other.  On the inside, biology is tearing my precious little girl apart.  Fighting this terrible disease is is really all about what's on the inside.

When I get this down, I pray.  I remind myself of my blessings.  And by the end I come around to this: what CF has taken from me it has given back to me ten fold.

What a Day!

It's a good thing they're not afraid of heights

There are so many things to talk about today.  I am excited that the day did not revolve around CF, even if that's why I started this blog.  I will try not to be too wordy.

Today was off to a fantastic start.  Before Jimmy got on the school bus I had already checked two things off of my "To Do" list, yea me!!  Once Jimmy was on the bus, I took a walk with my neighbors, another step in the right direction, no pun intended :)  After the walk I was giving Meaghan her 9am meds and she asked me, "Why do I have cyst... CF?"  Jimmy asked the same question last night, maybe that's why she asked.  I give the same answer all the time now, "It's just like getting your blue eyes or blond hair.  That's the way God wanted you."  I always get the same, "Ok." no matter who asked the question.  I usually tell them that it's in their genes and they'll learn more about that in school too.

Once that was done, I  printed and completed my part of the required school forms for Meaghan and Jonathan.   Before I could get to the fun for the day I needed to drop them off at the pediatricians office for her to complete.  That went very well.  The office was empty and her staff was having a bad day so my cheery disposition helped brighten their day.  I am so glad I opted to go there first, I would have been in a much worse mood if I had to do it this afternoon.  From the drs office we went to the aquarium.  I knew the race was over and didn't bother looking the aquarium up on-line before we left.  Once we were inside I noticed things were different.  We had to follow a hall to the first set of escalators.  The big pool on the first floor was closed!  No "Wings Under Water" exhibit.  Some of the animals were relocated to other exhibits and others went to GA.  The aquarium is renovating that area into something more natural and spectacular.  We'll have to watch the progress over the next few months.

From the aquarium we went to lunch at Panera's, YUM.  Then to return our books to the library, I had no more renewals left, bummer.  That is when the day fell apart.  I got a text from someone in Jason's office to call him.  My mind went to a bad place and I couldn't get my phone to connect with the network, grrrrr.  Right to the point, Jason lost his phone.  From there I met Jimmy at the bus stop.  When we got home I learned that he had left his books for homework in his desk at school.  The school policy is not to let kids back into the classroom once they've gone home.  And he doesn't have the number for a friend who can help in these situations.  While all of this is going on I was on the phone with customer support.  I spent 1 1/2 hours on the phone and aside from blocking and wiping the phone we are stuck.

So, even when CF is "hiding" from view, a day with the Jaecksch Family is anything but dull.  Today wasn't like most days but no two days around here ever look the same.  That's a very good thing, how boring or stressful would that be.

Waiting

This is what it looked like to leave Meaghan at home for the
day.  I counted, measured and labeled the medicines she
would need to take while I was away.  What you see is why
it is so hard for me to go anywhere without her.  By the way,
this does not show the two refrigerated medicines she takes
every day.  Or the twice a day vest therapy.

I have a little catching up to do I guess.  So much has been going on and at the same time it's like nothing at all.  The thing I want to know and everyone asks me about, I still have to wait for.  Meaghan has an appointment at the CF Clinic at Johns Hopkins on Wednesday September 12th.  At that appointment they will do a throat culture to determine if the treatment she was receiving to fight the psuedomonas infection was successful.  Fingers crossed.  We are trying once again to bring her overnight feeds back to her pre-infection concentration so we can put more meat on that tiny frame.  Right now she battles to keep 39 pounds popping up on the scale.  Which helps lead me to the next picture on the left.  That is a celebration in our house, two fold.  One, Meaghan tried scrambled eggs for the first time in years!  Second that is all she left of the TWO eggs

The start of a good eating day for Meaghan

I scrambled for her.  I wasn't sure she'd eat them at all but she happily scooped them up one bite after the other.  Many of you have heard me talk about nutrition for Meaghan so you know what a victory this was.  I must say though, that Meaghan's tastes have steered her to proteins more and more these days.  She is eating eggs once a day and chicken nuggets, from the freezer, almost once a day and she LOVES steak and pork for dinner. All thaose meats combined with the freedom from Bactrim (the oral antibiotic) I am looking forward to seeing her weight jump up.  As I write and think about it I find myself trying to not get too excited.  What always seems to happen is I feel great about how things are going and that silent speeding train from the long dark tunnel hits me all over again.  That is all part of what we live every day.  We do a lot of waiting and we try to look forward to tomorrow, but not too much.

   

It's not just the picture, Jonathan is THAT BIG

So with all of that said, there are a few things we've done that help remind us of the good times that are out there to be had still.  We went to the HoCo Fair, that was a blast for everyone.  I rode rides with Jimmy and the little kids that I didn't ride when I was a kid myself.  We went to Dutch Wonderland.  That was another GREAT day where I rode "scary" rides.  We closed the park!  We have begun regularly attending church again.  Everyone has their own thing going on there and it is a welcoming, friendly place for all.  Most recently we went to the National Zoo in DC.  It was a better day for the kids than for me or Jay but they are why we went. Tomorrow I told Meaghan I would take them to the aquarium in Balto one more time before school starts.  I am praying really hard for a good fall.  Meaghan is going to take a Tap and Ballet class at a nearby dance school, Jonathan is taking Tee-ball lessons, Jimmy has travel baseball (STILL :)) AND flag football.  I'm joining a womens small group for some much needed "me time".  There is so much to look forward to in the Jaecksch home.

Thank you all.  Keep us in your prayers, especially for good news on Sept. 12th.  We love you all.