Countdown to Xtreme Hike

5 days!!!

Hello All.  I really wanted to update you before now, you know...  

Meaghan finished her 14 day antibiotic last Thursday, thank goodness.  She did very well with taking it and tolerating the side effects.  Me too :-)  She seems to be feeling well.  Her mood is good, she is eating well, really well and she sounds mostly clear again.  When I said that Meaghan is eating very well, you have to understand that Meaghan has been growing as well as she has been because of her G-tube.  If it weren't for us pumping one thousand calories (sometimes more) into her little belly every night she would have shrivelled up long ago.  No one can thrive on carrot sticks and fruit.  The occasional egg white and spaghetti were exciting but still not enough.  These days she's a completely different child.  She takes a snack to school that ranges from 300-400 calories and a lunch that's 400-500 calories.  She still eats an afterschool snack of almost 200 calories and then she has her usual, picky dinner with the family.  I don't know why I put it all into calorie count for you but the numbers seemed easier to type than the list of foods she will eat now.  Boy how the list of foods she'll eat has changed.  She is much more open to new foods.  I bet I forgot to tell you that she asked to try crabs, clams, muscles and pickles this summer.  There are other, less surprising food items on the list but those are real shockers for me.  Anyway, it is a relief that while we still need the feeding tube and will probably always have it, for now at least, Meaghan likes eating at last.  

I am really excited about life inside our home these days as well.  There is so much joy and togetherness and sharing.  We are celebrating family and making the most of every day.  Looking forward to things.  Some in the distant future and some much sooner than that.  One thing that has us all excited and I'm not sure if sharing is the best idea but oh well, here goes.  We are going to get a puppy.  There is a litter of Vizsla puppies on the way and we are on the list.  Our last dog, Hammer, left us 4 years ago.  We all loved him and have missed him terribly but now we are ready.  Every day Meaghan asks if the puppy is here yet.  Of course I have told her that they haven't even been born but to a 6 year old who knows what she wants the waiting is pure agony.  I love it, it is so sweet how much we love this puppy who we haven't even seen yet.  The best part is, Meaghan actually asked her pulmonologist if she could even have a dog before we made up our mind to get one.  She was very worried that he would say, "NO." because of her CF.  Much to her surprise he said yes.  He went on to make her the happiest little girl in the world when he said it would even be ok for her to get a few puppy kisses too.  Now we just have to be patient.  It could be February before we can bring our new little guy or girl home but I will keep you in the loop ;-)     

Lastly, in Xtreme Hike news, a few weeks ago, on a 16 mile training hike, I strained a muscle in my right knee.  Honestly, I don't even know how I did it, it just started hurting and then the pain got really bad.  I knew I was injured but put the doctor off for about 4 days.  Then things got scary, fast.  I woke up with a lot of swelling in my whole right leg.  My doctor was afraid that I had a blood clot and rushed me off for a doppler study and MRI.  Thankfully, no blood clot and no significant or permanent ligament or tendon damage.  Her advice, lots of rest and NO EXERCISE.  HA, that's just not going to happen.  I did not exercise or hike for 2 weeks, that was all I could manage.  I went on a quick 10 mile hike on Saturday and I feel like it went well.  The terrain was much smoother than what I'll face in 5 days but I did it.  Because, I CAN.  I am going to admit that I am nervous but mostly because I wanted so badly to beat my pace from last year by a lot and now I don't think I will.  I will finish, that I am sure of. 

Okay, that's all for now.     

Welcome back.  I am so happy you are here.  This is an amazing time for me.  In my last update about Meaghan I told you that she started school on the first day like both of her brothers.  That was an incredible milestone in all of our lives.  I also told you that she was the healthiest she had been in two years.  I'm not taking it back, that was true.  Unfortunately, I must have been a little too comfortable in that place because Meaghan has her first cold now.   

 

 



It started on the second Tuesday of school with a headache and sore throat.  I was worried but I kept a strong calm front for everyone.  What is weird about that, it was not work to do it.  I felt it in my heart, I was strong and I was calm and I knew that everything would be okay.  On Wednesday I kept Meaghan home because she had had a restless night and a dry cough.  We saw the pediatrician who wanted me to take Meaghan to Hopkins for a stat chest X-ray.  The X-ray was negative for a pneumonia, Praise God! This X-ray came just four short months after the last one.  My understanding is that it was totally necessary and not to worry about overexposure.  Easier said than done, right.  For now Meaghan is taking another oral antibiotic to help her in her fight against a serious lung infection.  She felt well enough to return to school on Thursday.  There have been no major side effects and Meaghan and I are both keeping our spirit and focus on positive things.  One brave breath at a time.  

  Ok, I don't know what happened from here down.  I messed something up and I have no patience for figuring it out now.  I'm going with the, "done", now get stuff out there for the readers approach.  The perfectionist and control freak in me will be up all night arguing over who did what wrong and who's job it is to fix it.    

These pictures were taken during one of our regular visits to Hopkins this summer.  Our clinic is close enough to the new Children's Hospital that after our visits, one of Meaghan's favorite things to do is visit two magical spots.  I hope I remember the garden's name correctly, we call it "Sarah's Garden".  They have flowers and swings and have managed to provide a place to feel so far away from a hospital.  We didn't find the garden on our own, we visited with a physical therapist during one of our inpatient stays.  Now Meaghan asks to visit the fish, swing, flowers and fountain regularly.  I have to admit, I kind of like it.  It's so peaceful, she is so happy there, I'm happy too.

 

This makes me happy too.  I am really doing something here.      

 

Check these out!  I am hiking in the CF Foundations Xtreme Hike again this year.  My great old boots have kind of given up on me.  They have over 300 miles on them and I feel very sentimental about them every time I walk by them in the garage.  But, they just aren't comfortable enough to make the 21+ mile trip again.  Meaghan and Jason customized these new trainers for my hike.  Right out of the box they were perfect.  They have proven that they'll make the trip on the 27th.

 



I'm kind of a dork, I know

Sadly, the whole thing washed off that night. The new window crayons from Crayola are awesome, they just don't last.





One of my favorite walks, ever.  Meaghan walked two miles with me right before sunset.  Perfect, beautiful time for the two of us. 

 

Here are some of the other places I've been and things I have seen along the trail.

 



 

 

 

  

One of the last things we did as a family this summer was visit our friends new house on Kent Island.  It was a beautiful day.  I was fortunate enough to catch Meaghan being still just as the sun was setting. 

 

I love these pictures of her.  I see my little girl, she is so happy.  She truly appreciates the little things in this crazy life of ours.  She has made up her mind that nothing is going to keep her from her dreams.  I can't look into those eyes and tell her to slow down, be careful, just wait.  I tell her, dream, make plans, let us look.  Whatever this life will be, we will not be looking back any more saying, if we had only... I want to keep having people ask me, "How do you do it all?"  I do it all because... I CAN.