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.