Positive AND Realistic

I am a regular reader of Piper's blog and she recently started a thought provoking discussion about what positivity means to all of us. She is a 28 year old (the same age as I am) living with CF and is currently on the transplant list to receive a new set of lungs. She has recently called a Positive Charge: Blogger Challenge asking what positivity means to us.

Just like every case of Cystic Fibrosis is a different one, so are the lives living them. Whether you have CF or are raising a child with CF, we struggle everyday with staying positive in the face of adversity and all the challenges that CF brings. Positivity means different things to different people, and being positive can be just as unique as the disease itself. Piper asks a serious questions of all of us in the CF community, "Where does denial end and healthy positivity begin?" Are you staying 'positive' in the face of adversity, in 'denial' about it all, 'hopeful' or just being 'realistic?'

I have never been in denial about Lucy disease. The reality of CF is mine and Lucy's to live everyday, and I refuse to ignore it or deny it. My reality is that my daughter, Lucy, will die from Cystic Fibrosis. There is no maybe in the vocabulary, but there is a when. Cystic Fibrosis is a deadly genetic disease (the CF Foundation prefers to call it life-threatening) that will eventually take Lucy life, but I feel that I do have a choice about how we live our lives together while fighting this CF monster. I do have a choice about how I influence Lucy to enable her to view her world with a positive outlook. I will do everything I can to guide her on a path of happiness and truth. I will never lie to Lucy about her disease. CF is our reality and I will continue to be realistic about the disease, but I will also continue live positively with the life we have in the here and now!

While our past, present and future are always filled with the downside of CF: pills, poop, IVs, hospital stays, ports, feeding tubes, rectal prolapses, antibiotics and colonized bacteria, I never make it a negative point in our lives. Lucy loves going to the doctor. She loves wearing her mask and vest. She takes her enzymes like a champ, swallowing 7-8 pills at a time, and loves chewing her CF Source "monkey" vitamins. It may seem to Lucy that I am making these things a happy time for her. I do the best I can to make these daily treatments that she does, a positive and fun experience. These things we do everyday are the key to her good health and the ability to do more fun things to come in the future.

I never make CF treatments a focal point in our lives but they still must be done. Lucy must grow up knowing that she has to do these treatments in order to live a longer, healthier life with CF. Just as Lucy is learning to brush her teeth to help keep her teeth healthy, she will also learn that treatments must be done in order to keep her lungs healthy. The last two years that I have spent with Lucy have been the most fun I have ever had in my life. I will never take for granted the time I have with Lucy and we will be living our life to the fullest while we can. Lucy is just a regular smart, funny kid, living a fun toddler life, who happens to be living with Cystic Fibrosis.

We will continue to take walks to get ice cream:

We will continue to have fun doing amazing things, creating memories together:

I will continue to be realistic about CF and still be a positive influence in Lucy life. I will be honest with myself and Lucy at all times. I will never stop talking about this horrible disease that will eventually take Lucy's life. I will never hide my emotions from Lucy because sad moments sometimes call for a lot of tears. I will teach Lucy early on, everything there is to know about this disease so that she can feel confident and educated enough to fight this head on. I will always tell Lucy that she can do and be anything she wants to be if she puts her heart and soul into it. Sky is the limit and CF will not stop us from creating the positive, amazingly fun life that we want to lead.

It is completely possible to be 'positive' and 'realistic' at the same time.

Riding Vacuum

Lucy loves to ride vacuum. Here is a short clip of her doing just that. Pay no attention to the mix and match pajamas and the bedhead!

She has always loved the sound of vacuums and hairdryers, even as an infant. When Lucy was just home from the NICU at nearly four weeks old, she came home with a horrible case of diaper rash and yeast infection from all the antibiotics she took while recovering from her surgery. I would give her sitz baths and air out the area with a hair dryer. The sound of the dryer made her go right to sleep or it would put her in a trance.

She has always loved the vacuum, too, trying to ride it whenever she can and helping push it around. I would wrap her up in my Moby wrap when she was smaller and vacuum the house. She would be sound asleep, comforted by being worn and the sound of the machines constant white noise.

Make an on-line slideshow at www.OneTrueMedia.com

Lucy Unplugged

Lucy was feeling a lot better today. We hung out around the house all day and just worked on getting well and relaxing. She has made a huge improvement in her health in the last few days. No more fever, no coughing, and only a slight runny nose. I am postponing her Bactrim treatment and I'm keeping it on the shelf for another day! No need for antibiotics if it is not necessary! She fought those Staph symptoms all on her own. We will begin the next 28 day round of Tobi in the next couple of days to continue fighting the Pseudomonas. This will be her second month of Tobi.

While hanging out and relaxing all day in our pajamas, Lucy held an acoustic concert for a live studio audience me. As you can tell, she is in better spirits and was ready to put on a little show.

Photo and video editing at www.OneTrueMedia.com

Feverish

For the last three days Lucy has been battling a 100-101 degree fever off and on, and is accompanied with all joys of a stuffy, runny nose. This is always a classic sign to me that the Staph is back but we already knew that information.

The last visit we had last month to the pulmonologist for a check up after her first month of Tobi, Lucy had a culture lab come back that showed that the Pseudomonas was 'gone' but that the Staph had come back. Lucy was not showing symptoms of Staph at the time, so Dr. Perez and I decided that we would not treat it with antibiotics. Too many antibiotics makes the Pseudomonas and other bacterias resistant to the medications and deems them ineffective.

Lucy is now showing all the symptoms that she is fighting infection. She has been miserable for a few days now. She has very low energy, lots of naps have been taken, lots of water has been drank and cool baths have been taken. She still has a mild appetite, eating small snacks through out the day but never any large meals. At least she is still eating!

I called her doctor's office today. Dr. Perez is on currently on maternity leave so I had to call Dr. Grumpy. I explained to him her symptoms, what I thought it was and asked him how he might treat it or if Lucy needed to come in for another culture. Lucy will be starting her second month of Tobi in just a few days and I wondered if an inhaled antibiotic like Tobi would clear up the symptoms she has. He told me "no" and that she would have to be on an oral antibiotic in addition to the Tobi, if things did not relieve themselves within the next couple of days.

The Bactrim prescription has been filled and will be sitting on our shelf for a while. Now I will continue to help Lucy get better on her own accord without the aid of antibiotics. I would much rather her fight off this Staph by herself to help build her immune system. The Staph she has in her lungs has already colonized itself (made a permanant home there). We can treat the symptoms of Staph, the fever and runny nose, but it will never 'go away.'

Snow Day

I received a text message from my little brother on Thursday morning, "COME PLAY IN THE SNOW!"
My brother lives in El Dorado county, located in the foothills of the Sierra Nevada Mountains in California, at about 3,500 feet in elevation. It only snows at this elevation a handful of times during the winter but on Wednesday they got a foot of fresh powder! Lucy was so excited to go see her Uncle B and to play in the snow. The entire drive, an hour and a half in the car, she kept screeching with glee and yelling, "I build a snowman, mommy!" and "I go to B's house!"

The day was action packed and full of snow! Lucy and her Uncle B take time out of their play to give me a great photo!


Lucy played with three rambunctious dogs. The four of them love the cold snow and were romping around together. There is a black Lab, the gentle giant, Mary, a Collie named Whiskey and a white poodle Ziggy.

Uncle B helped Lucy make a jolly snow person with all the adornments that a snow person should have: hat, scarf, twig arms, carrot nose, rock eyes and a smile.

Lucy loved her snow person so much that she planted a smooch right on it!

After warming up and having lunch inside, we bundled up and went back out to play more! Lucy loved to snack on the fresh powder.

She attempted to make snow angels but I think she preferred staring up at the moving clouds and bare trees.

What a great day we had hanging out with Uncle B, his expectant girlfriend Kodie and the three dogs. I am sure that we will be visiting Uncle B more often with the new baby boy on the way at the end of April.