This was another good week considering.  Jimmy is still getting over his cold and Jonathan came down with one that makes Jimmy's look pathetically weak.  Thank God that Meaghan has been spared this round.  She started acting sick on Sunday but after a good nights sleep, today she is back to herself.

We spent the morning doing our chores and then took a walk along the river in the Daniels area of the Patapsco State Park.  It was a little cold but the sun was shining and well what more excuse do you need to spend time together outdoors.  We didn't get far, too much to see ;)  Jason and I learned one thing from this outing, Jonathan is not a good partner for training.  Anyway, I enjoyed it and until we got 100 feet from the truck, the kids did too.  Jimmy jumped over the stream and then decided it was a good idea to touch the water.  In retrospect, Jimmy would agree, it was WAY TOO cold to touch the water.  Meaghan wanted to "glide" down to the other side like Jimmy did but we wouldn't let her so for the next 30 minutes she cried and made us suffer for it.  Oh well, Jay and I are together on what a bad idea it would have been to let Meaghan jump the stream.

The water fall picture was part of an email I received today to keep me inspired for the Xtreme Hike.  It is just one of the many scenes we will enjoy during our time on the Tuscarora Trail.  Jason and I are among the 9 spots filled of the 40 possible for Xtreme-ists.  There has only been one interest meeting to date.  Another is scheduled for the end of the month in Frederick. I don't believe for a second that the CFF will have any trouble filling the spots, I think that they will have to turn people away in the end.  I am so thankful that I learned about the event when I did so that I could be registered, worry free.

On Thursday this week, Jason and I are attending a meeting where Dr. Beall will speak on the progress of the Cystic Fibrosis Foundation.  Dr. Beall is president of the CFF and I have always been inspired and filled with hope after hearing him speak.  I am looking forward to hearing what promises he has for patients with Meaghan's genotype.  Kalydeco has been wildly successful for patients so far and testing it with newer therapies could be the answer for Meaghan.

We still haven't heard from the CF clinic about test results.  That could be good or bad, but honestly it's probably that it hasn't been long enough.  I am anxious but feel in my gut that we're okay.  The MAI infection was not detected in the two previous bronchoscopies so why should it be there this time?  If there was anything else growing in her cultures I think I would have heard about it by now.

Our prayers are being answered, we are a blessed family.  Thank you to all who have kept Meaghan in their prayers, she is a better little girl because of it.  What things we have to look forward to are unknown to us but whatever happens, we will be okay.     

Today Meaghan said she was going to be an
astronaut when she grows up. 

 

That face says, "I know it all."

I am so excited!  Overall this was a very good week.  But there were some very BIG highlights and I want to share them all with you.  From the beginning, Meaghan and I had a great "girls" day on Tuesday.  We made smoothies and tried a new vegetable together, bok choy, we both loved it.  Then we watched Tinker Bell in The Secret of the Wings.  It was really awesome to spend that kind of time with her, I will treasure it always.  Wednesday was ballet day.  She is practicing for her spring recital.  I am trying not to hover and she seems to appreciate it.  She gets to show me all her "moves" and be the teacher.  Thursday morning we had a follow up appointment with the ENT.  First they tested her hearing.  I had no idea how it was going, it drove me crazy.  I was so proud of her though, she sat up so proper and followed directions to the letter.  Since I didn't know what to expect I kept my prep to a minimum.  She had to sit in a sound proof booth, alone, but she went right in and like I said, was an angel.

Ok, ok, enough of that, it's good news but not what we've been waiting for.  I got a call Thursday afternoon from the nurse at Hopkins.  I knew I'd hear from her but I thought the news would be bad.  Well it was quite the opposite!  Meaghan's culture for pseudomonas was NEGATIVE!!!!!  She thought I didn't hear her because I was speechless.  I asked her if I needed to wait a few more days to be sure.  Then she laughed and said, "No, it's negative!"  This is incredible news.

But I forgot something.  On Wednesday night Jason, Chris and I went to REI in Columbia for an introductory meeting for an Xtreme Hike event sponsored by the CFF.  I was blown away, I knew immediately I was going to do it.  A small group of dedicated fundraisers will hike a 20 mile stretch of the Tuscarora Trail in the George Washington National Forest.  I hear that it is a beautiful hike around Signal Knob.  The 20 miles will be completed in about an 8 hour period on Oct 19th.  There are experienced hikers on the committee who have created a training guide and are organizing weekly training hikes beginning in April.  I have no words for what this means to me.  I have not felt this passionately about anything like this, ever.  The hike is coming up in my life at just the right time.  I feel this in my bones, so much so that I didn't just register to hike, I am going to lead a team.  Nothing about this scares me.  I need to raise $2,500. and prepare my body for the Xtreme but it pales in comparison to what people living with cystic fibrosis do EVERY DAY of their lives.  I am doing all of it for the love I have for my daughter and every other beautiful, amazing person who suffers with CF too. 

I am just starting the process but I need your help.  Tell me I can do it and offer to contribute to the cause.   

God Bless  

Today was Meaghan's fifth broncoscopy in a one year time period.  This time it was outpatient.  Our experience was so positive today.  We had no trouble getting to the hospital in plenty of time, probably thanks to the lighter traffic post the Ravens big win last night.  We had enough time that Jay and I had a cup of coffee before checking in at Pre-op.  I hadn't even sat down in the waiting room before our name was called and Meaghan was checked in.  Dr. M was ahead of schedule this morning so Meaghan's procedure started 1/2 an hour early.  She was out of surgery and we were at her bedside by 10:30am.  The nurses said everything went very well.  Dr. M sat with us and said he was, in general, happy with what he saw.  Meaghan has some fluid in the upper and middle lobe of her left lung.  That is different from what we saw in November.  Some samples were collected so we'll have to wait and see if any "bug" grows.  First results could be in by 24 hours post bronc.  Pseudomonas is one of our big concerns and that could be 48 hours before we hear.  The really big concern is MAI and that slow growing little bugger could take 2-3 weeks to show up.  We have had 2 clean MAI cultures already so we have reason to be positive for this one too.  The nurses will call us if there is pseudomonas or some other bug by later this week.  Once we hear about pseudomonas I have to schedule a follow up clinic visit for 1 month from now. So, for now, we wait and keep up with current schedule of medications and therapies. 

I hope that came out sounding optimistic.  I'm trying to stay positive, things went very well.  Better than I expected.  It was a long day and my head is spinning, but I am smiling.  We were home before 1pm with Meaghan's favorite in hand.  I never would have guessed that she would eat all of her 4pc nuggets and leave french fries on her plate.  Anyway, she's eating, drinking and playing just like today's procedure never happened.  We're still going to have a"sick" day tomorrow.  Jonathan has school so Meaghan and I will get to hang out for a little while, just us girls.  Today, we had a great afternoon.  It was Jonathan's birthday so Meaghan helped me "make" and decorate his cake.  He asked me for a mountain with a dragon and knight in a sword fight.  He got his wish and he was very happy with the result. 

I'm so happy that today was a great day for everyone.  Thank you all from the bottoms of our hearts.  Your support has given me strength to fight along side Meaghan against cystic fibrosis and begin to recapture pieces of who I use to be as well.  Every day we get better, one breath at a time.

God Bless.         



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?