Ok, finally we had to get out the roller coaster for the kids because it looks like this winter we are just not going to have any snow.  They LOVE it.  With a good push they can land down near the shed.  No kidding they spent over 2 hours riding this day.  It was well worth it.

The real reason that I am writing tonight is to share with you that Meaghan has another and hopefully final (at least for a while) broncoscopy scheduled for Monday.  Yes, this coming Monday 2/4/13.  Some of you may know that that day is significant for our family, it's Jonathan's 4th birthday.  That poor baby seems to get the short straw when it comes to birthdays every year.  I'm going to have to make this up to him for years to come.  Meaghan is scheduled for an outpatient procedure and God willing she'll be comfortably home by late afternoon that day.

This broncoscopy is primarily to test for the MAI infection we found one year ago (2/5/12).  If what we believe to be true is confirmed with this test, Meaghan will be able to discontinue the three oral antibiotics she has been taking all year.  We will also learn if the last round of inhaled antibiotics to eliminate pseudomonas was successful.  We will know soonest about the pseudomonas, about 48 hrs post bronc.  The MAI can take weeks to grow in a culture so we'll just have to wait.  Once Meaghan is off of the antibiotics we are looking forward to seeing her GI tract reset and find a healthy balance again.  We have spent so many hours working on establishing a calorically dense meal schedule that allows Meaghan to continue to gain weight to spite her GI upset.  Meaghan's immediate future still has a lot of unknowns but there is reason for us to feel hopeful that this year is one we can file in the "Let's not go there again" category.

Thank you all from the bottom of our hearts for your support through the ups and downs.  Cystic fibrosis is still very much a part of our daily lives, like so many other people we love.  Precious lives are lost every day to this terrible disease and our fight is not over.

Alright, I did it again.  Not that a lot has gone on this week but I left the blog untouched for more than a week.  I hate it when I do that.  Every day I think of something that I think you all might enjoy or feel added something to your understanding of what living with cystic fibrosis in our house is like.  I don't always have time to put it all into writing and I have put so much pressure on myself to include pictures of my angel.  Like this one.  She dressed herself this way and went to her Tap and Ballet class.  She loves her class and just saw pictures of her recital costume.  She is so excited to be on stage and is practicing her "moves" all over the house.  I am so happy to see her getting into something.

Now, today we had a follow up visit with the ENT.  Overall it was good.  The hole in her eardrum is 2-3 times the size of one that drs would put in for tubes but it looks clean.  There is no infection and the fact that she is hearing (some) proves that the hearing bones are fine.  He feels strongly that she will heal on her own and regain all of her hearing.  It will take time and it could be a  couple of months.  She has to keep her ear dry still but doesn't need the drops any more.  He laughed (I didn't think it was too funny) that she is taking so many antibiotics already that they probably helped keep infection out.  Don't get me wrong, I like the dr a lot.  I took Jonathan to the visit with us.  I guess I could have asked for help but I was hoping he might learn from the visit.  Wow was I right.  Dr. Williams had a talk with Jonathan about not poking at people.  He told him how dangerous using our hands when we are angry can be.  I think Jonathan was listening because he was able to talk to me later about alternatives to hurting his sister.  I just got the title of a book (There's a Volcano in my Tummy) that sounds right up Jonathan's alley, I can't wait to read it and share it with him.

Thank you all for coming back to read about us.  Sharing our story and hearing from everyone helps get me through some of the toughest times.  Not every day is a struggle, living with CF has blessed our family in immeasurable ways.  

The ENT visit went really well today.  It was just like I told Meaghan it would be, no surprises.  He did some really cool stuff with a tuning fork.  After he took a long close look at Meaghan's ear he told me that there is a big scrape in her ear canal and a cut or tear in her eardrum.  He thinks that she will heal on her own and be back to "normal" soon.  He said 95% of the time injuries like this heal on their own.  If we have any different result there are options but that we should not worry over this.  I have to take her back to see him next Thursday.  We have to keep using the ear drops through Sunday to ward off any infection and then eventually have Meaghan's hearing tested.  The doctor did seem a little concerned about the IV use of Tobramycin and that we haven't had a baseline hearing test.  Continued use of the IV form of Tobramycin can lead to hearing loss and CFers use a lot of that drug.  I think what I told someone today was, "That was the best bad news I could have gotten."  What I can tell you is that Meaghan has a super human tolerance to painful situations.  She isn't complaining at all I have not given her ANYTHING for pain.  She lets me drop the medicine in her ear and tape a cotton ball to her twice a day.  By now I would have shut down, just how much can a little girl take.  

Today went pretty well for Jonathan too.  He could barely breathe without me knowing it.  I have been thinking and praying hard on just what's going on.  My sister-in-law let me bend her ear and offered some perspective.  I'm seeing things a little clearer and feel like I might have some new approaches too.  Tonight Jonathan and I talked about his feelings when he got angry.  He wanted me to write it all down, then he wanted to write.  We decided together that when he feels angry we should talk and make a game out of his feelings.  He wants to pretend he can push his angry feelings down out of his feet.  It sounded funny but there was such a dramatic change in both of us when we worked together.  Maybe we're getting somewhere.  I'll take it for today.

There is never a dull moment and things are rarely ever the same from one day to the next.  This is my wonderful life, I'm the luckiest girl in the world.

Ok.  So I still can't get a picture on here from the iPad. Ugh!  I will fix this tomorrow.
I know you haven't heard this one from me yet.  Meaghan made a trip to the emergency room today.  We didn't actually go inside because of the widespread flu.  Our pediatrician found an ENT who heard our story over the phone and felt sure that we'd be alright til the morning.  Anyway, she and Jonathan we're up to no good with each other again and Meaghan lost the battle.  I was in the kitchen talking to a neighbor and heard the fight begin.  I never imagined it would go so wrong or I would have gotten into their business a lot sooner.  Long story short, Jonathan used a miniature light saber to pierce Meaghan's eardrum. Well, we don't know for sure yet if it is the eardrum or the canal.  The ear, nose and throat doctor will see Meaghan in his office in the morning.  For tonight we are watching for increased bleeding and lots of the same symptoms of a head injury. We put drops in and taped a cotton ball over it. The good news is that she isn't complaining of much pain. For now she is sleeping soundly.

It goes without saying that I am furious with Jonathan.  I thought that we were beyond this kind of behavior.  I believe he has some remorse for the situation. It all happened so fast for him. First, Meaghan did something to make him angry, he chased her, then, Meaghan was crying.  Thankfully, my heroine, Mrs. Nancy, took he and Jimmy to her house so I could get Meaghan to the ER.  Anyone who has spent any time around Jonathan knows that I have my hands full.  He is "energetic" or "spirited" or "all boy". I just call him a monster.  We have talks, time outs and lots of other punishments but I have not been able to stop him from expressing himself with such anger and violence.  He's not a bad kid, in fact, his teachers have very nice things to say about Jonathan.  He is helpful and polite and follows the rules in school and at church.  This is by far, the very worst he's behaved, ever.  I really wish I knew what he was thinking and how I could help him.

Jonathan and I talked tonight and then the whole family sat down together and talked about the way we should all be treating each other.  Today was the day for me that changed everything.  I was tired and frustrated before but now I'm done.  The mean, hurtful way that these kids have been with each other stops NOW.  Not one of them can tease another for any reason or use their size, age or difference to their advantage.  I thought that they were working things out like siblings do, mostly they might have been, but Jonathan took it too far today.

We'll see what tomorrow brings.  Meaghan's appointment is for 11am in Towson.  She and Jonathan are still friends, no one is harboring any kind of a grudge.  I should be thankful for that.  After talking with everyone I think they understand the severity of what went on and why it must stop.  I just pray that no permanent damage has been done to Meaghan's ear and everyone has learned an important lesson.

I just remembered, I felt great about how well Meaghan has been doing.  Cystic Fibrosis is not my biggest concern right now, who'd have guessed it?

We are still taking advantage of the beautiful January days we've been having.  I recently shared with a friend that Meaghan seems more well and healthy to me than she's been for a while.  Maybe it's the sunshine and fresh air or maybe it's the new medicine.  Whatever it is, I LOVE it.  I also shared that I get very nervous to vocalize these feelings.  The way I've been trying to live my life was also her advice, "One day at a time, Michelle".  It is also very important for us to celebrate the small victories, be happy for now and thank God for our many blessings.

Who knows what the next days, weeks or months have in store for Meaghan or the rest of us.  I care but honestly those aren't the thoughts that I am allowing to shape my life anymore.  The sun has been shining, the temperatures are crazy warm for January and we're all smiles.  The kids all want to have lots of snow to play in and it would be nice, maybe February will bring it.

I'm going to let these pictures do most of the talking.  I don't have a lot of new news to share.  But I wanted everyone to see what we've been up to.  Today we spent some time playing outside.  We did lots of laughing, it was a great day for all of us.  I hope that all of you had as much fun and the Hope, Joy, Love and Peace of the holiday season continue through the new year.