I am not making any promises about future updates, as much as I want to.  Since Barney arrived our lives have gotten immeasurably busier.  Don't get me wrong though, he is an absolute blessing.  In only the way a puppy deeply into the "terrible twos" in a home already filled with chaos of its own kind can be.  We all love him to pieces.  He plays favorites.  Can you guess which sibling he is most bonded to.

Since writing the last post a lot has changed.  Meaghan does have a new pseudomonas infection.  She is on inhaled tobramycin, again or still, I've lost track, to treat it.  Dr. M says he feels confident we will kick it quickly.  Much to my surprise, I'm not stressing.  Barney has brought so much joy to Meaghan.  She is very responsible when it comes to taking care of him.  He brings out the best in her and I can not express the swelling of my heart to see their bond.

Meaghan is doing so well that our plan is to send her back to school with everyone after Spring Break!!  Oh happy days!!!  We are claiming a victory over CF this winter, NO HOSPITAL STAYS in or outpatient.  God is Good!
 

As of today, Barney is 35 pounds of boundless energy.  He plays endlessly, if he's not sleeping.  He's smart, funny, friendly and so handsome.

WARNING--I started writing this a LONG time ago.

It was finally not too windy and cold around here so Meaghan had an opportunity to get outside and enjoy some of what winter offers.  Snowboarding is one of her favorite things to do this winter.  Jimmy started it and Meaghan proved that whatever he can do, she can do better.  For a girl who isn't very coordinated or graceful, she rides the snowboard with real skill.  I'm a little jealous, I wish I could get over my fear of falling long enough to ride with her.  Lucky for me Meaghan likes to have me take the pictures.  Something I'm not afraid to do is build a snowman.  Our snow man isn't great and my neighbor calls him the "scaresnowman" but Meaghan and I are proud of him.  We had to act fast, the sun was melting the snow as quickly as we could roll it.  To finish we used almost all the snow we had left in the yard.  Once we were all done we went inside to warm up and watch Frozen, again.  It's a good movie, not one you get too tired of watching over and over.  

Finally, the moment we've all been waiting for.  Barney made it from West Virginia on Monday afternoon.  Our breeder happened to be coming close and offered to bring him all the way, awesome people, I know!  Love at first sight doesn't come close to describing Barney.  Everything about him is just perfect.  He adjusted from life on a 25 acre farm as one of 11 vizslas to being one dog in a family of 7 new people instantly.  He walks on a leash, comes to his name, sits, stays, fetches, sleeps through the night in his crate and is 99.9% house broken.  Hands down, the BEST puppy in the world.  His breeders have found the perfect "recipe", there's no need to look anywhere else. 

 YAY!!!  Look at us, we're home together.  On Wednesday, Meaghan was seen by Dr. M in the CF clinic.  He was a little concerned that Meaghan was coughing still but saw that her pulmonary function was the same as her last visit, still within a good range.  When he listened to her lungs he didn't hear wheezing or significant differences either.  He thought that Meaghan may still be coughing because pseudomonas is what's working on her now.  The antibiotics we've been using would not have had an effect on that.  So, as much as I hated hearing it, we are using one more antibiotic for 2 weeks.  This one specifically to treat pseudomonas.  It has some nasty side effects so I'm not looking forward to the next few weeks.  It could be worse, I'm not complaining.  In three weeks I have to take Meaghan back to clinic for a follow up.  If she's cough free, everything is done.  We just wait out flu season and look forward to going back to school.  If she's still coughing we'll have to have some chest x-rays to get a look at what we can't see.  Then there could be IV antibiotics and more.  BUT, one thing at a time.  Lets see how Meaghan does with the new oral antibiotic before we think about "more".

With all of that in mind we took advantage of the sunshine and smallish crowd at the National Aquarium in Baltimore on Friday.  Many of you know that the aquarium is one of Meaghan's favorite places on earth (so far).  It was a great day made better by having Pop Pop join us.  It was only his second visit and from where I stood, he enjoyed himself as much as Meaghan did.  The other difference yesterday was Flat Stanley.  I've known about Stanley for a long time thanks to Jimmy but for Meaghan he's relatively new.  She finished coloring her very own Flat Stanley earlier that morning and then we carried him off to his first landmark visit.  The timing of it all worked out perfectly.  Stanley got the full aquarium experience as you will see in the pictures below.  Meaghan understood she is suppose to mail Stanley to a friend for a whole new adventure when she was done but now she says she's not ready.  I hope that I can convince her that sending Stanley to a friend for a new adventure will keep the fun alive.  I told her we can write a letter to the friend, include a picture of herself with Stanley and an envelope for the friend to share their Stanley adventure with her.  I'm close, she thought that sounded better than never seeing Stanley again.  If it works, I'm very excited for Meaghan to begin this virtual adventure.  For a girl who dreams of world travel this has real potential.  

I'm so grateful to you for checking in with us from time to time.  I hope that you have learned a little about living with cystic fibrosis from a parents perspective.  As time has passed and our journey has been met with twists, turns and maturity, it is my sincere hope to be able to include more of Meaghan's thoughts on living with CF.  I look forward to the future with a hope I have not had before recent events.  I pray that you will stick around for whatever the future holds for all of us.

       

Cool, dolphins

Not afraid of dragons

Megalodon jaws

With the poison dart frogs

Hiding from Meaghan

Can't hide from me

What shark?

Meaghan loved the red ooze she made with her science kit

I've been out of touch, I know.  I wish there was more good news to share with you.  Sadly, I found out today that I have to take Meaghan to see the doctors at Hopkins tomorrow.  In my last few posts I have told you that Meaghan is taking antibiotics.  That is still true, I've lost track of how many weeks now.  She has improved a little but not returned to her baseline so it's time for another check.  The plan for tomorrow is first to check Meaghan's pulmonary function and do a throat culture.  Of course they'll listen to her lungs and then we wait to hear what they think.  I hesitated to tell Meaghan we are going, trips to clinic are very anxiety provoking for both of us.  God bless her, she reacted much differently than I expected.  She had questions but there were no tears or firm words of refusal to go.  Honestly, I think she knows something isn't right and wants to get to the bottom of it too.  The sooner she is well again the sooner we can start getting back to our normal routines.  It feels like nothings been "normal" not even for us, forever.  As much as I am stressing over tomorrow, I am also feeling like it will stop my imagination or paranoia from getting the best of me.

I want to leave you with this.  It's the thing that we as a family have been looking forward to for quite a few months.  Our puppy is coming, soon.  The exact date is kind of unknown because of every ones schedules but he could be here January 24th or 25th.  We have a lot to be thankful for in our everyday lives, he's just the icing on the cake.  He's a 10 week old vizsla.  They are Hungarian hunting dogs.  They are intelligent, trainable and great in busy households with energetic young kids.  He's a great running and hiking companion, he needs the exercise and so do I.  Also, shedding is not a big issue, he has a short single coat of hair.  Meaghan's doctors gave him a thumbs up, she can even get a few puppy kisses.

Thank you all.  Your support keeps us going.  I hope that I can write again tomorrow with a huge sigh of relief in my voice.

   

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.