Both of my kiddo’s have big Dr. appointment’s coming up. Wednesday is Piper’s big MRSA throat culture. FINGERS. TOES. EYES. ARMS. LEGS. crossed for negative test results! This lung damage needs to slow the heck down! So, throw those prayers up to the sky and ask God to make it happen (if it’s his will, of course). Have you seen that commercial where the guy with the heart problem has the hospital bed following him around everywhere? LOL I kinda feel that way with Piper’s MRSA. I feel like ole’ MRSA has been following me everywhere I go. I’d like to kick ole’ MRSA in the chins. I mean seriously, he needs to beat it and give Piper a break. Me a break. Our entire family a little MRSA vacation. We realize that this is a VERY tall order. MRSA is difficult to eradicate, but it’s not impossible! Right? With God EVERYTHING is possible. It is.

Next Wednesday, Finley has Cardiac Clinic. We will be doing an Echo, EKG and some blood work to determine what this heart medication (Amiodarone) has been doing to her liver, kidneys and everything attached. That is some pretty heavy duty stuff and the long term effects are not great, so we need to be sure that she isn’t having any adverse signs from it. She’s been on it for 10 months. They are hoping to take her off of it at a year. I’m a little paranoid about that, but definitely glad she won’t have liver, kidney, etc. complications from it. It’s a double-edged sword for sure. It’s been keeping her heart-rate under control for 10 months. Under control. If they take her off of it, her little heart is free to flutter about and do something stupid again. I’m kinda not a fan of that. I am, however, a HUGE fan of God’s perfect plan. While I know the heart medication has been keeping her heart under control, I am MORE aware that God’s healing hands have been keeping it MORE under control. We will see where Fin’s heart function is right now. It’s still a big waiting game, waiting for her to reach 50 lbs. so that we can move forward with her ablation. That sure seems like a long way to go, seeing as she’s only about 21 lbs. right now. We’ll get there though! I know I’ll blink and she’ll be 5.

So, the next 2 weeks will be filled with some pretty heavy hitting news for both of our girls. I’m ready. I’m ready to gain some new perspective on both medical conditions and do what needs to be done to make things the best they can be for each! I love that they are both such strong little ladies. It makes it all okay. We are all in this together and I am SO grateful for your continued love, thoughts and prayers!!!!

Just a few pics of my little bugs

Today I write.

I write, because I can’t find the words to express all that I am feeling. I write, because when talking to family and friends on the phone these past few days, I find myself uttering intelligent words like “um” and “uh” and “so, yeah”. There has been such an influx of new information regarding Piper’s progression of her disease and I honestly haven’t had a moment’s peace in my head since it all began. It’s like being under water for a lengthy period of time and all you want to do is surface and take a giant breath of air.

I have always been an avid blogger since beginning my business 3 years ago. I made certain to post and write about my life, if even just to journal so that I could later go back and read what I was feeling and experiencing at that particular moment in time. Since Finley’s “experience” in the hospital, I haven’t blogged much. A post here and there, but nothing emotional, deep or feeling. I have sat down so many times at the computer and started an entry only to shut my laptop and walk away. I’m not sure what has been holding me back, but I’m almost positive it has something to do with dealing with my feelings.

My children and husband are my life. They make chaos seem normal, fun and exciting. Anyone raising a child with illness will agree, having children with medical needs just becomes a part of the process of your everyday life. For us, it’s this: wake up, boil nebulizer equipment, get Piper in her Vest for therapy, administer nebs x 3, dole out 12 different medications to one child and check the pulse of the other child. It’s like breathing to us. If you took it all away, we’d be a little lost, and that’s just the point…when you do something day in and day out, it’s so very easy to forget that you are treating your child’s disease and not just doing the everyday thing that you feel is normal. When Piper is not experiencing acute illness, I tend to forget she is a CF patient. She’s just my wacky 5 year-old who laughs, plays, get’s a little lippy from time to time and wants to be just like any other kid. I have made it my practice these past 5 years to not dwell on all of the things that CF can do to her. It’s just a waste of energy. When she was first diagnosed, I found myself moping and getting down and then I would look in front of me and see a beautiful little baby smiling up at me and I reminded myself that she’s here, she’s healthy NOW.

I needed to enjoy her in the now.

This admission has been especially tough. I find Piper a little more down this go around, because of her inability to leave her hospital room due to her MRSA. My fiery little girl is sighing alot, laying her head down on the pillow and just frowning more than I would like to see. I know she’s not feeling well. She doesn’t have the same energy that she’s used to having and I think it’s all just a bit frustrating for her. For me, as well. She is bright and happy and bouncy and when she tries to exert herself these days, she complains of how exhausted she is. The infection in her lungs is holding her back and she just doesn’t understand why.

I met today with the doctors during their rounds and was able to view the CT scan of her lungs. It’s always a little uncomfortable to hear 15 different doctors discuss an organ that belongs to your child in such detail. They explained to me the anatomy of the lung and then began to point out where the damage is and all the while, I just stood there with a giant lump in my throat, because this organ in front of me does, in fact, belong to my child. More heartbreaking is Piper sitting in the bed less than 3 feet away watching her Disney video’s and painting. I look at her, a vibrant and healthy looking child, and then I glance back at the CT of her lungs and I think to myself “how can this possibly belong to my child?” They continue to explain that Piper’s lungs have undergone significant damage on the right side and also beginning on the left and that they have also found nodules in her airsacs and that they are attempting to identify the organism that is causing them. No immediate answers, but we wait and see and then form a plan based on those results. Her disease is progressing more rapidly than they had hoped for and now aim to minimize further damage with mucus clearance and antibiotics. I knew this would happen. I have spent the past 5 years preparing myself for news that would come when she was a 15 year-old or a 20-year old, after her lungs had been infected multiple times over many, many years. I never in that time period prepared myself for that news at 5 years of age and yet here we are. We have been told that she now has bronchiectasis and that her lungs are at the stage of a typical Cystic Fibrosis patient between the ages of 20-25, a fact that I am still trying to wrap my head around. They believe that the rapid decline of her lungs is caused merely by genetic predisposition and that Piper has just been unlucky when it comes to having been exposed to particular CF-specific germs. She is 5 and has had Pseudomonas twice in her life already and is also fighting the MRSA in her lungs. It’s just unfortunate.

When your child is handed a medical diagnosis of a terminal illness, it is difficult. Your mind races with the possibilities. You imagine what her life will be like and beg the question if she will suffer and if so, for how long. There are no straight answers to these questions. Time will only tell. I can only tell you, from my personal experience, that no amount of imagining will prepare you for the day that the disease takes hold of your child. What is most sobering for me is knowing that we are in the best of times right now. That this disease will continue to wreak havoc on Piper’s lungs and body and that we haven’t begun to experience all that we will in the years ahead. I find solace in knowing that Piper is a fighter. She is stronger than anyone I know, which blows my mind because she is so young. She adjusts. Adapts. Distracts herself with other things and even when she’s coughing so hard that she is throwing up, she never complains. She just deals. I find myself looking at her in amazement and know that I am in the presence of a little girl that GOD has prepared for this life. If anyone can handle it, she can. She is already.

Am I worried? Yes. Do I cry? You bet. Do I think of all of the horrible things that are to come? Too much, sometimes. I dread the struggle for air the most. Watching her NEED more oxygen. I find myself trying to breathe for her sometimes and it’s silly, but I do it anyway. Even though I am hurting for her, I never doubt God’s plan for her life. I know that the Lord does not make mistakes and that in his eyes, Piper is perfect. She is already touching the lives of other’s through her own and one day we will understand fully his plan for her.

Thank you to all of our family and friends who have reached out to us during this time. Your prayers have been such a treasure to me and I am so grateful to have your love and support. We love you to the moon and back!

Please visit the following site to learn more about our fundraising efforts for Piper! http://www.pipersfight.com

We love you!!!!!!!!!!!!!

xoxo~Courtney, Jonny, Piper and Finley

(and a picture of the girls, of course)

For Piper and so many other families out there fighting…