OMG!  Every time I look at this picture I feel such a rush of emotion.  Look at that beautiful girl, she is my everything.

For anyone who doesn't know, Hurricane Sandy, the Frankenstorm, is beating the east coast to a pulp.  Here in our sturdy brick house in Ellicott City, MD the lights are still on.  They are starting to flicker a bit and we all feel like it is just a matter of time before they go off.  Honestly, I am struggling to understand just how we've kept electricity this long.  Not complaining, I'm thankful.  But, I should keep blogging to a minimum for now.

I am feeling very proud of myself today.  Everyone was home and though we were into lots of cool and fun things to do there was almost no fighting.  This monster storm has ruined weekend plans, canceled school and closed business but the Jaecksch's are happy and safe.

I am closing tonight with a request, (or two, or more:)).  Meaghan's next hospital stay is coming up very soon, next Monday in fact.  Pray for her doctors and nurses to deliver the best possible care and that the procedures go safely, smoothly.  Pray that my angel wake feeling healthier and happier.  Pray that the strength I have found to plow through these difficult days not fail me now.  Pray for Jason, Jimmy, Jonathan, Meemaw and Pop Pop to hold things together while we're apart.  Now remember that I thank you all.   Through the encouragement you've provided me, I am who I am, where I am, today.  "Love" is just not enough, each one of you is deeply appreciated.  Lastly, spread the word about Meaghan, share the blog!

Today was just like most of our others.  Except for that Meaghan found this huge mushroom at the bus stop.  After she and Jonathan finally broke it free from the ground they just had to bring it home.  It rests now in the garden and they are very worried that "something" will come and eat it.  It is really funny how much this mushroom means to them.  They called Meemaw out this morning to look at it.  At first glance Meemaw thought they brought a living creature home.  So Meaghan lovingly refers to the mushroom as a turtle.  We had a friend visit for a little while before preschool and Meaghan could hardly wait for them to leave so she could show off her mushroom.  For their sake I hope  nothing comes tonight and eats the mushroom.

I hate to say it but that is all I have tonight.  We are all waiting and doing the best we can to plan for the next stay in the hospital.  Keep us in your thoughts and prayers.

Ok.  This picture has nothing to do with why I am writing tonight but by now we all know that I just love to put her up here for you to look at.  I really wanted to get on here last night and talk about the feeding tube.  Instead I spent the better part of my evening folding the laundry that I spent the better part of my day washing.  Not exciting but an accomplishment I'm proud of.

Well anyway.  On Saturday, last weekend, I was sitting with some other CF parents talking about all kinds of things CF parents talk about.  One of them is always NUTRITION.  Meaghan was the only one of the kids we were all talking about with a g-tube (we call it her button).  The trouble CFers have when it comes to their nutrition is that it takes 2-3 times the calories of their peers to absorb enough for positive weight gain and growth.  For many of them it takes "special" treats and formulas to achieve weight gain.  When Meaghan was still very small it was obvious to everyone she wasn't getting enough calories and the decision was made to place a g-tube.  Meaghan was 8 months old when she had the surgery, I don't remember her numbers, but she was still wearing some 3-6mo clothes.  Her numbers didn't make it on the charts then but within weeks she was on a steady upward curve.  Only twice did I question our decision to put in the tube.  Once while she was recovering at home after the surgery.  She was in so much pain, I hated that I did that to her.  Then when we made the change from the PEG to the Mic-key in the GI clinic.  It would be a bad idea for me to go into detail about that one, trust me.  Those two times were hard but every day since then I say, "Thank You".

With a few little exceptions the button has made our life so much easier.  I am able to give Meaghan all the bad tasting liquid medication she needs through her button.  I can help keep her hydrated, each night I add 8oz of water to her bag.  And, when she's not feeling well enough to eat I can add to her belly for her.  Now for the down side, and why I wanted to write tonight.  First, there's the obvious "hole" in her body.  Not a big deal to me at all.  The button is small and easily changed.  For anyone with pierced ears it's as easy as changing an earring.  It is almost undetectable when she's dressed.  As she grows we'll worry about the two piece bathing suits.  The second issue with having a button is that sometimes during a feeding it will come apart and leak.  The formula is very thick and sticky and smelly.  You know just by walking past the room when something like this has happened.  I said, "leak" but in our house we say she fed her sheets.  When that happens, and it did on Saturday night, it means stripping her bed completely, bathing and redressing for bed. You know it rarely happens when you are fresh and ready for this kind of undertaking.  It's always at 2 or 3 in the morning when you stayed up late to watch a movie with your hubby, realized the dishwasher hadn't been loaded and finally hit the pillow around midnight.  To make matters worse, that night Jonathan came in at 2:30am saying he couldn't find his screwdriver or some other kind of nonsense.

So, just in case I haven't already covered all my feelings on feeding tubes, there you have it.  The good far outweighs the bad.  For each their own, this is only my opinion.  Thanks to everyone for all the continued support.  Please don't forget Meaghan is spending another week in the hospital starting Nov. 5, we still need your thoughts and prayers.

Just keep going

Hello, I have heard from a lot of you that I should be putting more on the blog.  Trust me, it comes to mind often.  There hasn't been a lot going on in the world according to Meaghan.  We've settled down a little with the start of school.  That is going very well.  I go on and on with everyone about how wonderful the school is for us.  I couldn't be any happier.  Meaghan and Jonathan too. 

Today, Meaghan dressed up for a Princess Party at her friends house.  She just loves to pretend she's a princess.  

Before the party, I was in Baltimore for the Johns Hopkins CF Center Family Day.  It is a yearly event for parents and caregivers of people living with cystic fibrosis.  There is a lot of progress being made in finding the right drug or combination of drugs to treat the root defect of CF.  There are many reasons for patients and families to celebrate.  That was today's theme.  It seems so appropriate for our family, we have been finding little ways to celebrate each day.  We try to make each day "The best day ever!"

The five of us visited a farm in PA on Friday.  It was awesome!  It was called Maize Quest.  We successfully navigated our way through the extensive corn maze in about 40 minutes.  There was some complaining along the way, mostly by Jonathan, but the pride and joy we felt when we saw the exit and knew we did it on our own made it all worth it.  We took a short break for lunch and to recharge before we took on the task of completing the other 25+ attractions at the park.  A lot of effort went into everything they had to offer.  Jimmy found the pedal cars and he rode those most of the day.  Meaghan loved the giant slide and bamboo maze.  Jonathan loved to climb on all the huge old tires.  We even played a life sized version of Candyland together.  There was something for everyone.  When our legs just couldn't carry us another step we visited the market for a snack for the ride home.  It was almost the quietest car trip.  No one was asking for anything and the annoying sound of electronic games was non-existent.  The three kids munched hungrily on farm fresh apples!  Maze Quest is a fall must for families willing to make the trip a little west of Stewartstown.  My kids are already asking ,"When can we go back?"   Enjoy the rest of the pictures.  I think you'll especially love Jonathan ;)

  

Meaghan is being pulled by a tractor, Jimmy has to do all the leg work

Now I have to catch her before she lands in the puddle

The full view of the slide

 

Is it obvious, we are done

Very cool maze, lots of fun

 

Thank you everyone, you've been caring and supportive and I love you all very much.

Hello All.  I have nothing very eloquent to write today.  I realize it has been a very long time since I posted on Meaghan's progress.  There just hasn't been anything to say.  She will take her last dose of TOBI tomorrow morning.  Then we wait some more.  Her next bronc is scheduled for November 5th.  At that time she will likely get a PICC line placed to start her on another course of IV antibiotics.  The idea is to be aggressive with the pseudomonas because of the complicated infection she got last winter.  To be as prepared as possible I'm planning on a few days in the hospital with her.  Sadly, we just won't know until the doctor has her under during the bronc.  We're just taking things a day at a time, trying like mad to be positive.

My request is that you continue to check on my precious angel and PRAY. We love you, God Bless.

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.