Hello again everyone.  This post is an attempt to help you catch up on how we've been since I wrote for you last.  I left you a few weeks ago with this:  I believed Meaghan was coming down with something so I was taking her to see  her doctor.  When it comes to visiting the doctor, I consider us professionals.  We know to be prepared for a long stay so we always take a bag full of activities and snacks.  I surprised Meaghan with a new game on this day.  This is Math Dice, a math game to boost math skills and Meaghan loves it.  We played many rounds and I lost all but one.  Maybe it was because I was losing but probably not, I said to Meaghan that maybe the doctors make us wait because we are so good at it.  She wholeheartedly agreed and went right on beating me, enjoying every second of it.  Once she was seen by the doctor we got some good and some bad news.  The bad news, the doctor detected a difference in Meaghan's lungs that she was uncomfortable enough with to consult the pulmonologist.  The good news, because Meaghan was otherwise symptom free we could stay home and put off xrays or starting to treat her.  

Jason and I knew we had to stay positive so we focused on a project.  After a lot of browsing and talk about what would work best in Meaghan's small room we decided on this.  She now sleeps in a loft bed.  The space under her bed is set up with decorative lights and cushions.  She can hide inside with a book or a game for a little alone time, every girl needs that. I am so surprised by how much more room she has in there.  It's the kind of room I would have loved to have as a little girl.  Of course all the extra space has nothing to do with taking a contractor sized trash bag of stuffed animals out and to the basement with the rest of her stuffed friends.  She is grown up enough not want them all in her room full time anymore but not so big that she wants to give any of them away.  It's alright with me, almost all of her friends were gifts and they are connected in some way to a hospital stay.  

   

 Meaghan is overjoyed with her new room.  It makes Jason and I equally happy.  We love to see her in her big girl room, she is proud of it and wants to show everyone who visits.  

Meaghan celebrated her 7th birthday a little more than a week ago.  Birthdays are special for everyone, Meaghan's are just a little more special for us.  This year we were a little worried that we may be celebrating from a hospital room.  The week before her birthday Meaghan started with a terrible cough.  We headed back to the doctors office where they listened to her lungs again but decided this time she should start a twice a day two week long course of an oral antibiotic.  We kept a positive outlook and our plans to throw a Safari themed birthday party.  But first, it is our family's tradition to celebrate our birthdays at home with just the family on our birthday.  The birthday girl or boy chooses dinner and dessert.  Meaghan asked for spaghetti and marshmallows and chocolate again.  This year I stepped it up for the rest of us.  I made s'mores then covered them with white chocolate and sprinkles.  They were a hit, Jonathan wants "birthday s'mores" for his birthday now too.    

Then the Saturday after her birthday we threw her a party.

It wouldn't have been much of a safari without the decorations.  I left Christmas ornaments off of the tree so we could cover it in safari animals instead.

The snacks.  We picked foods that Meaghan likes and gave them funny new names.  Every ones favorites were the dried ants and tarantula poop.  Some of the others included snake eggs, sloth toes and tiger tails.    

There she is, resting in the fake shade of the palm tree we got to "grow" in our living room just for Meaghan.  She is a very happy birthday girl who is worn out after a fun afternoon with her friends.  Most of all, I enjoyed watching Meaghan and her friends.  She invited boys and girls to the party.  We kept it small and all but one kid could come.  They all searched for safari animals that we had hidden in plain sight before the party.  When I thought they might be too close to breaking something or getting hurt we broke out the safari bingo and played 4 rounds.  It was a great (very loud) I'm not sure I'm ready to do it again soon though.  

Lastly, Meaghan finished the antibiotic.  But, there was no real change in her cough so she's going to start two more weeks on another.  Today she went to the school nurse complaining that her coughing and sneezing were too much and that she had a headache.  She had a low fever, not enough that the school had to send her home, but she felt bad enough that she wanted to go home.  Her temperature went up a little before bed and she is very congested so Jason and I decided to keep her home from school tomorrow.  Our nurse and primary care physician think that Meaghan should stay home from school for an extended period.  She needs a chance to get well and we should reduce her exposure to the cold and flu bugs that are so prevalent right now.  This idea sent Meaghan into a hysterical fit.  Once she had a chance to calm down and hear what we had to say I think she understood.  We talked with her about her dreams for the future and how stepping back a little for now may increase the time she has later.  More time for adventure and exploration.  Still, this is a very difficult decision for us.  In all fairness, I was warned a month ago when all the health concerns started that this would happen.  In a perfect world, my daughter would be happy AND healthy and we wouldn't have to make the choice to sacrifice one for the other.  Don't get me wrong though, it works both ways.  Sometimes we make her happy and skip treatments to do something much more fun.  

There is no such thing as perfect, what we have is just right for us.   When Meaghan asked us tonight why God wants her to be sick, I said first of all that no one wants her to be sick.  Then I told her the only thing I could.  We are all special, we will all have to overcome something.  I told her that from the day she was born she's been a fighter.  I told her that she is brave and strong and is making a huge impact on the world.  I told her that there are still little babies being born with cystic fibrosis and that her strength and bravery in this battle and her willingness to share her story makes her someone those babies can look up to.  Just like the kids and young adults that I have had the privilege of learning about who inspire me to fight harder.  We are not alone, none of us, we will only beat this together.   

This artwork by Meaghan is a little old but I thought that since I haven't updated the blog for so long I might soften you up with it.

A lot has happened since September.  The Xtreme Hike has come and gone.  It was another amazing experience for me.  I made new friends, met my hike day goal and exceeded my personal fundraising goal.  The hiker minimum is $2,500 but I set a goal of $3,000 and drum roll please...to date I have raised $5,916!!!  Thank you to everyone who believed in me and supported me.  Without the generous donations from you I could never have achieved this.  Next year I've got to break the $6,000 mark ;-)

Isn't it amazing, we're all smiles in the morning and still smiling late that evening, after a 25 mile hike.  That's just how the whole day was for us.  The weather was warm and sunny, perfect for hiking.  The most memorable part of my day is a story that you probably can't believe.  A big yellow dog stole the sandwich right out of my hand just one mile into the 13-14 mile second half of the day.  I wasn't as upset about losing the sandwich, I had enough water and snacks to finish, it was the handful of dog slobber I had in my sandwiches place.  I finished strong and felt great, much better than I thought I might.  I didn't even get a blister.

The week after the hike I participated in my "Combat CF" fundraising event.  I loved it!  It was a fantastic success.  We filled the studio and met if not exceeded our goal.  That night I put this jar on the table.  People bought guesses to answer for the number of pills Meaghan takes in an average "healthy" month.  In case you're wondering, it's 784 pills!  She does this every month of her young life.  You won't hear her complaining, she will tell you, "It's just part of what I have to do to stay healthy so I can go to school and play with my friends."  If you're anything like me, that number seems impossible but think about this; in a year Meaghan takes an average 9,408 pills.  Meaghan is still very young and I think in pretty good health considering and that's a HUGE number of pills.  There are many more people fighting CF and many of them take considerably more medication.  By giving to the Cystic Fibrosis Foundation we are aiming to change that.  We dream about a day that to win the fight against this terrible disease we can count pills on the fingers of one hand, no calculator necessary.






This is incredible.  One year before this picture was taken Meaghan was just released from the hospital.  She was working hard to get strong enough just to go to school.  In one year, she started school on the first day like her brothers and her peers then crushed 35 laps in the "fun run" at school.  I watched her run around and around with hundreds of other kids with tears filling my eyes and spilling down my cheeks.  What a remarkable change.  The school principal stopped to share a few of those proud moments with me, she was overcome with the emotion of it too.  Meaghan is proof every single day of what believing can do for you.  Nothing is impossible, no one, nothing stands against her and succeeds. 

Halloween.  I have no idea where the idea to be an angel came from, it was a surprise to me.  There have been times that Meaghan said or did something that left me speechless but the moment she said, "I want to be an angel!" takes the prize for putting the biggest lump in my throat.  I hugged her and said that she already is but her mind was made up.  She made the prettiest little angel.  

That same night Meaghan FINALLY lost her third tooth.  This tooth had been wiggling for more than a month but just wouldn't give up and fall out.  She was at the dentist two weeks earlier and even then the hygienist couldn't easily get it to fall out.  I'm not sure if I ever wrote about the other two teeth so you have to understand that Meaghan didn't let on she had loose teeth, she just yanked them out and brought them to me.  So this tooth was on our last nerve, it was time to go.  One sticky Lemonhead on Halloween did her in.  It was ugly, the crying and bleeding seemed to last forever.  One of my neighbors came with her boys to the door and I drug her into the bathroom to help.  She got Meaghan to stop crying but Meaghan would NOT let her pull the tooth.  Finally, I asked Meaghan to let me clean her face up and with just the corner of a paper towel I gave the tooth one final push and it dropped onto the counter.  Now Meaghan tells everyone that I yanked her tooth out as if I gave her no choice in the matter.  

The way the tiger pops from the page is really the only reason I took this picture.  Meaghan and I read together before bed, usually a chapter book like Ramona or an Animal Ark story.  Then she reads to herself for a while, mostly from her bible.  When I go into her room before I go to bed, to add water to her formula, I always have to take a book away and turn off the lamp.  I don't think I could sleep through the night after reading from a National Geographic wild animal book but Meaghan can.  She can cuddle up with a wild tiger and dream sweet dreams all night long.

I made it up to this week now.  I'm still trying to get in time on the trail as much as I can and Meaghan loves to keep me company.  When she goes with me I pick one of my short loops in the Daniels Area of Patapsco Valley State Park.  This is the shortest because we had to beat the sunset this day.  It's almost two miles start to finish and Meaghan finishes with me faster than Jimmy does.  A fact she rubs in every time we go out.  It is just the thing I need some days.  We walk and talk and I feel every stress, fear, worry and doubt melt away.  During the walks this fall I can see through the trees all around us and it's just me and my girl in the world, these are special moments I store up to get me through the tough times.   

We are working through some of our tough times now.  Meaghan has been dealing with a gastritis for almost a month and just yesterday developed a cough.  We haven't found the right treatment for her gastritis yet and we think it was triggered by anxiety.   3 weeks ago, after heaving and retching for 3 hours then bringing up blood we were told to pack a bag, we were headed off to the hospital.  Fortunately, Meaghan stopped everything and fell asleep.  For the next 6 hours she rested and recovered quickly.  The same thing happened two more times over the next two weeks.  I kept her home from school on a Tuesday to take her to the pediatrician so she could be cultured and tested for strep and uti's.  Everything came back negative so we talked about going to school.  That's when she said she didn't want to go.  She told her pediatrician and I that she has been teased in school by a couple boys.  They were calling her Meg and she hated it.  Worse than that she didn't think she should tell anyone because she didn't want to get in trouble for tattling.  Everyone who needs to know, knows now and I have to believe that this is behind us.  Unfortunately, her gastritis remains.  One hour from now I am headed to the pediatricians office so they can listen to her lungs after the development of a cough.  I'm telling myself to prepare for the worst BUT hope for the best.  That's all we can do, HOPE, and treat what we can treat as it comes up.  

The CF Foundation is working tirelessly to find the medication or combination of that Meaghan and the others like her need to change CF.  The future of CF treatment is to call it a condition that can be managed with a simpler daily regimen.  

I leave you with this for now.  As you think about what you are thankful for this Thanksgiving, be sure to give thanks for the healthy kids in your life and pray for the rest of them.  Then consider making a donation to the CF Foundation to whom we are thankful every day for giving us the blessing of more tomorrows.      

      

Countdown to Xtreme Hike

5 days!!!

Hello All.  I really wanted to update you before now, you know...  

Meaghan finished her 14 day antibiotic last Thursday, thank goodness.  She did very well with taking it and tolerating the side effects.  Me too :-)  She seems to be feeling well.  Her mood is good, she is eating well, really well and she sounds mostly clear again.  When I said that Meaghan is eating very well, you have to understand that Meaghan has been growing as well as she has been because of her G-tube.  If it weren't for us pumping one thousand calories (sometimes more) into her little belly every night she would have shrivelled up long ago.  No one can thrive on carrot sticks and fruit.  The occasional egg white and spaghetti were exciting but still not enough.  These days she's a completely different child.  She takes a snack to school that ranges from 300-400 calories and a lunch that's 400-500 calories.  She still eats an afterschool snack of almost 200 calories and then she has her usual, picky dinner with the family.  I don't know why I put it all into calorie count for you but the numbers seemed easier to type than the list of foods she will eat now.  Boy how the list of foods she'll eat has changed.  She is much more open to new foods.  I bet I forgot to tell you that she asked to try crabs, clams, muscles and pickles this summer.  There are other, less surprising food items on the list but those are real shockers for me.  Anyway, it is a relief that while we still need the feeding tube and will probably always have it, for now at least, Meaghan likes eating at last.  

I am really excited about life inside our home these days as well.  There is so much joy and togetherness and sharing.  We are celebrating family and making the most of every day.  Looking forward to things.  Some in the distant future and some much sooner than that.  One thing that has us all excited and I'm not sure if sharing is the best idea but oh well, here goes.  We are going to get a puppy.  There is a litter of Vizsla puppies on the way and we are on the list.  Our last dog, Hammer, left us 4 years ago.  We all loved him and have missed him terribly but now we are ready.  Every day Meaghan asks if the puppy is here yet.  Of course I have told her that they haven't even been born but to a 6 year old who knows what she wants the waiting is pure agony.  I love it, it is so sweet how much we love this puppy who we haven't even seen yet.  The best part is, Meaghan actually asked her pulmonologist if she could even have a dog before we made up our mind to get one.  She was very worried that he would say, "NO." because of her CF.  Much to her surprise he said yes.  He went on to make her the happiest little girl in the world when he said it would even be ok for her to get a few puppy kisses too.  Now we just have to be patient.  It could be February before we can bring our new little guy or girl home but I will keep you in the loop ;-)     

Lastly, in Xtreme Hike news, a few weeks ago, on a 16 mile training hike, I strained a muscle in my right knee.  Honestly, I don't even know how I did it, it just started hurting and then the pain got really bad.  I knew I was injured but put the doctor off for about 4 days.  Then things got scary, fast.  I woke up with a lot of swelling in my whole right leg.  My doctor was afraid that I had a blood clot and rushed me off for a doppler study and MRI.  Thankfully, no blood clot and no significant or permanent ligament or tendon damage.  Her advice, lots of rest and NO EXERCISE.  HA, that's just not going to happen.  I did not exercise or hike for 2 weeks, that was all I could manage.  I went on a quick 10 mile hike on Saturday and I feel like it went well.  The terrain was much smoother than what I'll face in 5 days but I did it.  Because, I CAN.  I am going to admit that I am nervous but mostly because I wanted so badly to beat my pace from last year by a lot and now I don't think I will.  I will finish, that I am sure of. 

Okay, that's all for now.     

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.