Welcome back.  I am so happy you are here.  This is an amazing time for me.  In my last update about Meaghan I told you that she started school on the first day like both of her brothers.  That was an incredible milestone in all of our lives.  I also told you that she was the healthiest she had been in two years.  I'm not taking it back, that was true.  Unfortunately, I must have been a little too comfortable in that place because Meaghan has her first cold now.   

 

 



It started on the second Tuesday of school with a headache and sore throat.  I was worried but I kept a strong calm front for everyone.  What is weird about that, it was not work to do it.  I felt it in my heart, I was strong and I was calm and I knew that everything would be okay.  On Wednesday I kept Meaghan home because she had had a restless night and a dry cough.  We saw the pediatrician who wanted me to take Meaghan to Hopkins for a stat chest X-ray.  The X-ray was negative for a pneumonia, Praise God! This X-ray came just four short months after the last one.  My understanding is that it was totally necessary and not to worry about overexposure.  Easier said than done, right.  For now Meaghan is taking another oral antibiotic to help her in her fight against a serious lung infection.  She felt well enough to return to school on Thursday.  There have been no major side effects and Meaghan and I are both keeping our spirit and focus on positive things.  One brave breath at a time.  

  Ok, I don't know what happened from here down.  I messed something up and I have no patience for figuring it out now.  I'm going with the, "done", now get stuff out there for the readers approach.  The perfectionist and control freak in me will be up all night arguing over who did what wrong and who's job it is to fix it.    

These pictures were taken during one of our regular visits to Hopkins this summer.  Our clinic is close enough to the new Children's Hospital that after our visits, one of Meaghan's favorite things to do is visit two magical spots.  I hope I remember the garden's name correctly, we call it "Sarah's Garden".  They have flowers and swings and have managed to provide a place to feel so far away from a hospital.  We didn't find the garden on our own, we visited with a physical therapist during one of our inpatient stays.  Now Meaghan asks to visit the fish, swing, flowers and fountain regularly.  I have to admit, I kind of like it.  It's so peaceful, she is so happy there, I'm happy too.

 

This makes me happy too.  I am really doing something here.      

 

Check these out!  I am hiking in the CF Foundations Xtreme Hike again this year.  My great old boots have kind of given up on me.  They have over 300 miles on them and I feel very sentimental about them every time I walk by them in the garage.  But, they just aren't comfortable enough to make the 21+ mile trip again.  Meaghan and Jason customized these new trainers for my hike.  Right out of the box they were perfect.  They have proven that they'll make the trip on the 27th.

 



I'm kind of a dork, I know

Sadly, the whole thing washed off that night. The new window crayons from Crayola are awesome, they just don't last.





One of my favorite walks, ever.  Meaghan walked two miles with me right before sunset.  Perfect, beautiful time for the two of us. 

 

Here are some of the other places I've been and things I have seen along the trail.

 



 

 

 

  

One of the last things we did as a family this summer was visit our friends new house on Kent Island.  It was a beautiful day.  I was fortunate enough to catch Meaghan being still just as the sun was setting. 

 

I love these pictures of her.  I see my little girl, she is so happy.  She truly appreciates the little things in this crazy life of ours.  She has made up her mind that nothing is going to keep her from her dreams.  I can't look into those eyes and tell her to slow down, be careful, just wait.  I tell her, dream, make plans, let us look.  Whatever this life will be, we will not be looking back any more saying, if we had only... I want to keep having people ask me, "How do you do it all?"  I do it all because... I CAN.

 

 

 

 

 THIS POST IS WAY OUT OF ORDER.  I FOUND IT IN MY SAVED DRAFTS AND DECIDED NOT TO WASTE IT.  JUST DON'T FORGET AS YOU READ, SPRING AND SUMMER HAVE ALREADY PASSED.  THE POST BEFORE THIS ONE IS THE NEWEST UPDATE TO LIFE WITH MEAGHAN.

 

 

Spring has sprung so why not have a cool afternoon snack outside!  Or get the bubbles out.  After school or between baseball games, these are some of our favorite things to do.  I'm quite pleased with myself for getting the giant bubble picture the way I did.  It could be better quality but for the mom who relies on her iPhone I think it's cool.  After all we've been through it makes me happy just to see Meaghan outside doing "normal" stuff.  She looks good, right? No, you're right, she looks great!  Months and months of disciplined medication and therapy regimens put color in her cheeks and more "meat" on her bones.  Meaghan knows that it is important for her to keep up the hard work of staying healthy if she wants to enjoy more days like these. 

 

  



 

One of Meaghan's favorite things is what we call "Tube Free Friday".  A couple months ago I mentioned that her nutritionist made Meaghan a deal.  If Meaghan tried really hard to eat regular meals and keep her weight up, she could have one day every other week off of her feeding tube.  While I wish I could say that Meaghan is eating better, that would be a lie.  Once in a while she'll eat a lot or willingly try something new.  Mostly, she barely does enough to keep a bird alive.  But, the nightly tube feedings are doing the trick still and her weight continues to climb.  So every other week Meaghan gets to choose where she will spend her "Tube Free Friday".  Since her feeding tube set up is in her room and she's always "stuck" there on it, she never spends a tube free night in her own room.  Until last week she would sleep on an air mattress in her brothers room.  She and Jonathan loved it, Jimmy, not so much.  This time when she asked if she and Jonathan could sleep on the sofa bed in the basement I thought, "No way, you'll never stay down there" but I said, "Sure" anyway.  Believe it or not, they did stay there ALL night.  She can't wait to do it again, she even said she's going to eat better so maybe she can have a "Tube Free Friday" every week.

 

What made Meaghan the happiest recently was so simple.  She started school after Spring Break by riding the school bus.  All the rest of her little life she watched Jimmy get on the school bus and dreamt of the day she would too.  I spend my days thinking of the big things.  Will the scientists working on a cure for CF find it for Meaghan soon enough?  Will she live long enough to go to college, fall in love, get married, start a family and bury me?  She dreams of riding the bus to school.  Going on a school trip to the zoo next week is as long range as her thinking is.  Isn't that GREAT!  I read this yesterday and I think it's so awesome, I have to say it out loud to myself when I start thinking my way instead of Meaghan's way.  "EVERY DAY IS A GIFT, THAT'S WHY THEY CALL IT THE PRESENT''    

 

Yesterday I spent some time with my boys.  Jimmy is out of school for Spring Break this week.  It's awesome because my boys are GREAT and I don't really get a lot of time to spend with them alone.  We packed a picnic lunch and headed to the park.  We had our baseball gear and basketballs.  Enough to keep us busy for hours, then the rain started.  Oh well, it was just a drizzle so we stayed and played anyway.  I was blown away by the interaction between Jimmy and Jonathan.  At home it seems that they can not help but aggravate each other.  But on the field, court and playground yesterday they were best friends and it reminded me that I am the luckiest mom in the world.                

 

This is going to be a high speed recap of the time that has passed between my last post and now.  All that matters right now is that we are WELL.  Meaghan is the healthiest she has been in more than TWO years!!! PRAISE GOD!!!  School started on August 25th and all three Jaecksch kids started that day!!!  It's time for celebrating our life and we intend to keep living it with a positive outlook.  I am filled with joy and hope and peace.  Enjoy a few of the moments we spent together this summer and check back later.  HAHA, now I have all this "free" time, maybe MeaghanMeDizzy will be kept more up to date.

Good Morning, Sunshine!



Morning Meds (some of them)

Right away I have to offer my apologies.  I should have updated this much earlier.  So many things, all good, have happened since my last post.  The pictures are most of the steps it takes to get Meaghan ready for school each day.  I am super proud of the way that she has handled everything.  Today is just her 3rd full day of school, because of Spring Break falling right after her introduction.  I wake her at 6am to start everything that has to be done to maintain the level of health we've achieved so far.  That gives us plenty of time for what has to be done and a cushion for the tantrum or meltdown that may or may not happen.  On day one it was the very large chewable vitamin that Meaghan has to take each morning.  It's a new flavor, orange, and one might think that that's not so bad.  But Meaghan has been chewing up the berry flavor as long as she can remember so the orange causes her to gag, repeatedly.  The first day after Spring Break there was no tantrum so we spent some extra time reading about the birds in our backyard.  Today she wanted to finish building a Lego set and so we spent a little time on that.  I texted Jason this morning and told him not to quote me, so I'm getting myself into trouble here but, "I am so happy right now I can hardly stand it".  We've come so far in the past 6 months.  I'm more in control, Meaghan's more in control and we're starting to live, truly live now.  It's work, sometimes really hard work to be us and we have a long way to go still.  What's amazing is that the harder we work at this life the easier it is getting.  

I don't like orange
 

First Day outfit (but you can't
make me smile)

Checking things off

 

Morning Vest

The ride to Jimmy's school

 

With that I am going to end this post because I want to get on to the rest of the past two weeks.  Again, I am sorry to have left you waiting to find out how school has been going.  It has been so much better than we expected.  Meaghan accelerated the plan (A LOT) but as a whole we decided that Meaghan should be the one to lead us.  What a remarkable little girl!  

 

Sweet dreams, angel

Feeling Funny

 

We're acting a little silly here because there are big things about to happen for us.  Meaghan is going to start school tomorrow.  No exclamation point from me, my fear and anxiety overshadow my excitement.  Her first day will be a short introduction to her classmates and teachers.  For a few weeks we will be building up Meaghan's time at school before she will attend a full day or week.  But I have a feeling Meaghan will be ready to speed up our plan in no time.  We have talked a lot about what to expect.  The anticipation of it all has had an up and down effect on both of us.

 

We have been working for a couple of weeks on creating a plan and a schedule that makes the lengthy list of daily requirements more manageable.  It starts by having to go to bed earlier so that I can wake Meaghan at 6am to start her morning treatment and therapy.  It doesn't sound like much but Meaghan has never liked the morning portion of her care, and we weren't on a clock then.  I'm building a little more time than we need into the schedule so that I can keep my cool better when I meet Meaghan's resistance head on.  Please, Lord help me, I need a calm, gentle touch in the midst of my own struggle with doing what I am so afraid of. 

 

I know that all parents are nervous when they send their kids off to school.  I did that once or twice already, Jimmy is now in middle school!  What complicates tomorrow for me is that I have kept Meaghan at home during the past 7 months because she was too sick and weak to start school with her peers.  I made great changes to my family's lives to help minimize the risk of exposing all of us to germs Meaghan couldn't fight.  Then, I surrendered control over what I can not control and prayed.  Today, Meaghan is STRONG and healthier than she's been in 2 years!!!  Praise God.  I know better now than ever, she is in His hands.  He LOVES her and will see that she fulfills His purpose for her.  My job is just to manage and listen.  The right people are strategically placed in our lives to see that I stay on course.

 

Meaghan's fight is not over, not even close.  There is no cure still for the terrible disease that threatens to end her life and makes every breath she breathes more difficult and meaningful than I can find the words to express.  If you would like to help, you can click the link on the right.  Once there you can donate to the Cystic Fibrosis Foundation in Meaghan's honor or join us in our mission.

 

Thank you to all, you know who you are.  Do not underestimate your influence on our lives, each one of you who listens, encourages and supports us is firmly locked in my heart forever. 

 

Hugs!           



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

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

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






Singing along to the pulsing of the
 vest

 

 



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

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

First baby tooth fell out!

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

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

Hugs and God Bless

Happy New Year!

 

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

 

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

 

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

 

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

 

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

 

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