Way to Go!

The Great Strides Walk was a huge success.  I have not heard final walk day results from the MD Chapter, but overheard that we were already near our goal!  That is great news, however, our fight is not over.  The CFF needs our continued support in its lifesaving mission.  Meaghan needs our support!

Last Tuesday we took the kids to the Catoctin Wildlife Preserve and Zoo in Thurmont, MD.  It was a totally amazing day.  One that Meaghan has been waiting for for a long time.  And I am certain she will never forget.  Check back soon, I hope to add a slide show of our trip to the blog, we captured some unique experiences.  

Meaghan is battling a new infection.  We were dealt the news over the phone a week ago.  The oral antibiotic is the easy part of what she has to add to her daily routine.  The inhaled antibiotic on the other hand is tearing her apart.  It has to be taken by nebulizer twice a day and it takes 30 minutes to complete each dose.  Throughout her life she has complained very little about anything but she says this medicine burns her mouth.  Even though this is hard on her she remains diligent in her treatment proving once again she has what it takes to beat this "bug".

Guess What Meaghan Said To Me Today

I kind of fell off the count down.  It's been a stressful week.  This post is to catch you up, fair warning, it's a tough one.  The story I am going to tell is why I do everything I do.  It explains it all.


(Back story)
This week we've talked a lot about CF.  The weeks schedule went like this:
Monday- Meaghan had a check up at Hopkins with her pulmonologist.  Jimmy came along.  It looks like a new or maybe even the "old" infection are working on Meaghan now.  We're waiting for culture results.  While we wait we had to start an antibiotic to halt any progression of infection.  Another bronc is in Meaghan's future, maybe sooner than later. 
Tuesday- I saw an email from NASA about the death of Sally Ride.  I read the short bit to Jimmy including that she died after being sick.  Jimmy remembered a little about who she was and we mostly talked about that.  I didn't give it another thought, Meaghan and Jonathan weren't part of the conversation.  
Wednesday- All three kids had a routine visit at the dentist.  I of course had to update Meaghan's medical history which had everyone asking a lot of questions.  I needed to attach an extra page to her record just to include all the medications she is currently taking.  Her oral health has not suffered to date from the many medicines running through her tiny body.
Thursday- Jimmy had his 10 year Well Child visit- the little kids went along too.  Jimmy is in great health but he needed his tetanus booster.  I warned him this might happen and he handled the shot very well.

So, today in the van, the kids were asking why we go to the doctor and get needles.  My answer is always the same, "We get needles when we see the doctor sometimes because they are trying to keep us from getting sick."  I was trying to hear what was on the radio and tune out the chatter in the back seats when this cut through me like a knife, "It's a good thing I didn't die when I got so sick".  It was Meaghan and she said it twice.  Jonathan said, "Oh yeah! We don't want you to die, we love you."  Meaghan replied, "Awww, you're so sweet!"  

I don't know how I kept driving.  Thank God for Jonathan, I didn't have to say anything, I cried and prayed that topic would be put behind us as quickly as it came up.  It did.  I wrote it all on scratch paper to share with Jason when he got home.  I am constantly blown away by how much Meaghan connects with life.  No one wants Meaghan to have to face the things we have to face in a life with CF.  She just does, in a matter of fact, 4 year old way.  I love my daughter, she gives me so many reasons to be proud.  

8 Days til walk day!!


The number 8 resembles the symbol for infinity.  That is a beautiful thought.

8 o'clock is bedtime in our house.

And, touching on something I just talked about with my in-laws. 8 is approximately the number of pinches in a teaspoon.

I hope that you're enjoying reading what these numbers mean to us.  What is really scary to me is that CF is so much about numbers already.  It's all about calories, weight and lung function.  We measure and count medicines, coughs and days.  It is enough to make you crazy.  Thank goodness for our family, friends and all the support from the CFF.

9 Days til walk day!

I feel terrible.  I took so long posting last night you probably missed it so PLEASE, PLEASE go back and read it.

I had a block when I started thinking of the number 9.  Then I remembered, Meaghan memorized her first joke not long ago.  "Why was 6 afraid of 7?...Because 7 8 9."  I know, it's not that funny but hearing her tell it (once or twice) melts your heart.

10 days to go!
Okay.  This is not the picture I really wanted to use but I have lost hours going through pictures in multiple locations and I can not find "the one".  This picture is of Meaghan the day I had to leave her in the hospital.  I wanted to use her first birthday picture.  That is todays #.  10. The day Meaghan was born.

Jimmy is 10 years old now.  He sometimes has a hard time with his little sister but after seeing him with her in pictures tonight I know he loves her.  He'd never admit it but he can't hide it.

The one other thing I want to talk about to do with the number ten has is about a donation.  Over the 4 years I have raised funds for the Cystic Fibrosis Foundation I have felt tremendous pride in all the money Team Meaghan has managed to contribute.  We have been blessed with many generous donations by wonderful people and each one means the world to us.  It isn't about how much money people choose to give, it's just about giving.  The CFF is one of few organizations that can brag about the remarkable 90+ cents of every dollar raised going directly to research and development.  That means that every dollar really makes a difference.  So, when a very caring and thoughtful 10 year old came to me with a donation of his own, I was at a loss for words.  The boy plays baseball with Jimmy and he just met us this year.  I talked with his mother, father and younger brother through the baseball season and it wasn't until late in the season that we talked about CF.  I never talked to him about it directly but he and his mother had talks and used the internet to answer his questions.  When he understood that there were people who were working to cure CF he knew right away he wanted to help too.  He gave me $10 of his own money after a game.  I thanked him of course, I told him I was deeply touched by his generosity (through the lump in my throat and tears in my eyes).  He just smiled and said "You're welcome".  There was a rush of emotions for me so I asked if I could hug him.  I still worry if I embarrassed him that day, I think it was ok.  Am I right E?

The number 10 has deep, deep meaning to us.  Now I guess I need to get working on the number 9 already :)

11 days to walk day.  

On November 11, 2011 (Veterans Day)  Meaghan had an appointment with a hairdresser.  It is significant because she donated her long hair to Locks of Love.  She still talks about that visit and plans to do it again once her hair grows out long enough.  I get chills when I think about how my little girl did something so thoughtful for other "needy" people and how she really gets what she did.  

Also worth noting:  Jason's birthday is Dec. the 11th.  Meaghan's first "crush" is number 11 on Jimmy's baseball team.  Jimmy was #11 on his rec. baseball and basketball teams.

Keep up with the count down, this is fun!

Click the link to join Team Meaghan or make a secure donation to the Cystic Fibrosis Foundation-We need all the help we can get!
  

Hi!  12 days left before the Columbia Great Strides Walk event.  I love numbers and so I have to share and count down to walk day like this. 12 is a dozen, lots of things come by the dozen.  Like a dozen roses.  Roses are the beloved symbol of cystic fibrosis.  We love roses too, they grow along our patio.  Meaghan loves to eat eggs and they come by the dozen.  One more thing comes to mind right away, donuts.  Meaghan LOVES donuts.

So, check back to see what each number means to us as walk day approaches.  Please consider joining us for the walk or making a donation by clicking the link on the right side of the page.