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.