Wednesday, October 6, 2010


Have you ever had one of those moments where your heart feels this unexplainable rush of peace when your head is telling you to fall to pieces? I guess I shouldn't say 'unexplainable', because for me I know it's God....I had one of those moments today. And I am so thankful for that moment.

We had clinic this morning. I had the car parked, 3 kids, 3 bags, 1 stroller, and a hot cup of coffee all into our CF Center at Blank Children's Hospital by 7:45am (for that I am also thankful!). We take care of my 11 mo old niece during the week, so she had the priviledge of coming to clinic with us today (she's actually my GREAT niece, but that just makes me sound old). So our little troop arrived at the office today ready to take on the world. Little Miss Rylan walked in with her curls swinging, jumped up on that scale, twirled around and just smiled up at the nurse. She was so proud of herself, it was like she knew she had grown. Even though she is pancreatic SUFFicient (meaning for now, her pancreas is working the way it should and absorbing nutrients without the help of enzymes), her weight has still been under scrutiny. Studies show that cystic fibrosis patients with BMI's of 50% or higher have better lung health and are less prone to infection. BMI, or body mass index, is where they calculate how healthy a person's weight is when compared to their height. Rylan's BMI has been as low as 1%. Soooo, even though we don't 'think' it is CF related, it's still been something that has raised some red flags. Our last clinic appointment we were at 8% and TODAY, dun dun duuunnnn, drumroll please.....we were at 25%!!!!! That is SO incredible, we were all jumping around the room (including our dietician). All of that peanut butter and guacomole she's been eating by the spoonful is finally paying off. We've got a ways to go before we hit 50%, but I know we'll get there!!! Thanksgiving is right around the corner, right??! Next piece of great news, her blood oxygen level is 100%. Can't get much better than that...

So, as clinic went on...I did hear something I wish I could push out of my brain. I heard the word colonized. Ugh. Really? Colonized? Translation = because she has had pseudomonas so many times in such a short period of time, they think it may have taken up shop in her lungs and we'll be unable to erradicate it. BUT, they did say possibly colonized. So, I'm not going to let it upset me...what we've decided to do is go on and off TOBI (the inhaled antibiotic) every 28 days for 6 months (or however long it takes to get 3 negative cultures). I'm confident this, along with tons of prayer, will do the trick. So peeps, I'm asking for your help, pray. Pray. Pray. Pray.

So, before I sign off I want to tell you about 'the moment' I had. Our last stop was the x-ray lab to get updated pictures of her lungs. As we were sitting in the waiting room, my mind is reeling. It's going 100 mph and all I can think about is the word 'colonized'. I can visualize the stupid word, for goodness sake. I keep thinking about what life will be like if we DON'T get rid of the PA. She'll be on and off different antibiotics for the rest of her life. I'm thinking over and over again, that's just not fair. Life's not fair. And on and on and on. All while Rylan is making Mia giggle by sticking EVERY sticker we've accumulated throughout the morning on the stroller, the arm of the chair, and my face. As Rylan is squirming around on my lap to get a better angle at my forehead, she looks up at me with those big 'ole blue eyes just as I hear Celine Dion belting out the words to the song 'A Brand New Day' over the speakers. The exact part that I heard was "Hush love, I see a light in the sky. It's almost blinding me. I can't believe I've been touched by an angel with love". Aaahhhh. Yep. It's a brand new day. Thank you, God, for the reminder. My husband and I were JUST talking last night about how all you really need is love. Thank you, God, for all the love that is surrounding me in this exact moment. XOXO

No comments:

Post a Comment