I know and I feel terrible.  I have kept you all in the dark about everything.  Not because things are bad, we are actually doing well.  Meaghan did re-start school with everyone after Spring Break.  She was really happy about going and has managed to stay healthy enough to miss very few days since then.  There have been a couple bumps in our road but nothing to keep us from looking forward.  

I am going to mostly use pictures to tell the story of the past few months.  So many things have happened that I may either run on and on or leave things out.

Barney is the one who initiated this pose.  He is a really sweet boy and he adores Meaghan.  This was taken within the first week of Meaghan returning to school so you can see how much they missed each other and how tired they both were. 

Sometime during the winter Meaghan told us that she wanted to play softball this spring.  What a shock for us.  After spending her entire life watching her big brother play baseball she let us know on many occasions that she was not at all  interested in playing ball.  But I am not going to say no to trying something so I signed her (and Jason) up.  Jason coached and Meaghan played and it was a wonderful experience.  They both enjoyed the sport and spent some quality time together.  There were quite a few girls on the team who go to the same school with Meaghan so it didn't take long for everyone to get comfortable.  We are looking forward to many more softball seasons.

Barney is still everything I already talked about and more.  Over the past few months he has really matured and developed a personality that can hardly be put into words.  His need for long walks and play is mostly being met so all that he is around home is just who he is.  He will take something he shouldn't have from time to time but we all understand he's looking for attention.  You can almost hear him saying, "Look, look at me!  I have your______.  Just try to take it back."  He goes to almost all the kids games because he is well mannered and a friend to everyone.  He is also more protective and dominant around the house and the 7 people he calls his.  We laugh at him when he loses a toy under the furniture and he uses his Big Boy bark to let you know but then he'll whine like a baby when one of his friends walks by outside.  He has the most expressive face and he is just so darn good looking.  I tell him not to let it go to his head but I am the one who needs to be careful.  He is barely 7 months old now, weighs over 50 pounds and stands about 23 inches high at the shoulder. 

You can't tell from the picture but Meaghan is sitting in a tree she learned to climb into all by herself.  She fought and fought to do it and with just a few suggestions from me she managed to get up and down on her own.  She sat up there for a good 30 minutes, probably just to annoy the boys who wanted to climb up after her.  I don't know where she'd get an idea like that.  Once the coast was clear she came down and went up until her hands were too sore to climb any more.   

There were a few kind of major changes in our house too.  It seems wrong of me to put these two things together but they happened so close together I find it a little funny too.  The cone is on Barney so he doesn't chew the stitches out from being neutered.  Meaghan's hair is not pulled back or tucked away, she had it cut.  She had more than 13 inches to donate.  That makes her third donation to Locks of  Love.  She thinks she would like to keep it short for a while and I told her that would be nice.  It still amazes me that she feels so strongly about helping others this way.  I think it is good that I am still amazed by her generosity and compassion, it means it is still real. 

 Okay.  I mentioned that we had hit a few bumps in the road.  Most of them had little to do with Meaghan's physical health, the thing most people think of or look out for when facing a chronic illness.  The bumps that had the greatest impact on our wellbeing were of a behavioral/emotional nature.  I am still uncomfortable or embarrassed about the specifics.  I also do not want to say anything Meaghan could read and be upset with me for sharing.  Once I knew we had a problem I had to talk about it.  Then I had to admit that it was beyond my comprehension and skill to handle.  Then sift through my options, evaluate, re-evaluate and redirect many times.  I guess what I am saying is that we've been dealing with this for quite a few months now and it has had a significant impact on our daily living.  I am sure that somewhere along the way I was told or warned that CF is so much more than a disease that impacts the patient's physical self.  BUT, like in so many other things, I became so overwhelmed by one aspect of living with this terrible disease that this issue was allowed to grow uninterrupted into a real problem.

That is all background for what good news I have to share with you.  Dealing with our problem was going to require professional help.  We have done the Kennedy Krieger Behavioral Psyc thing and most of it was helpful but no way was Meaghan going back there.  She met a woman who I believed could help but Meaghan refused to go back.  So it was recommended by a friend to try an alternative therapy like art or music.  I asked around, checked with our insurance company and kept coming up empty.  Totally by accident and feeling out of options, we met a gifted therapist who was right under our noses.  For the past two weeks Meaghan has been seeing Ms. Michele for horseback riding lessons twice a week.  I noticed an immediate change in Meaghan's behavior with our very first visit.  I am thrilled to be sharing this experience with her.  As a kid I rode all the time and it never occurred to me to have Meaghan try it.  The  trust, discipline, responsibility, and control needed to be a good rider are just the things Meaghan needed in her life.  I can not remember ever seeing Meaghan respond to someone or something the way she has with Ms. Michele and Callie.  She is so confident and grown up when she is out there and she has carried that with her once she leaves the stable.

So, I will leave you with a few of the pictures I have of Meaghan and "her" pony Callie and a reminder that what you see when you look at my little girl is just the surface.  She is a little girl who fights an unimaginable battle against a disease that you can not see.  She looks strong and she is but she is also at great risk of becoming too weak to breathe.  She goes to school like other kids but has to miss massive amounts of time due to illness.  She runs, rides a bike and plays but also depends on a feeding tube and nutritional supplements to keep her body strong enough to do it.  Meaghan is at an age now where she understands more about what it means for her to have cystic fibrosis and she doesn't like it one bit.  For now I tell her that it is okay to feel that way, she's right, it stinks.  I keep my fears about her future tucked tightly in my heart.  There is so much more for her to learn about living and fighting for every day with CF.     

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.