Monday, November 18, 2013

I am grateful for CF.... Wait?! What?!!

Yes that's right, I'm grateful for my daughter's disease that I despise with every fiber of my being. Makes no sense right? 

Well, I had a really crappy appointment with Molly's CF Specialist this past friday. She seems to be doing ok but her weight gain was only and ounce and a half. Booooo. They aren't too worried about it but that wasn't even the tip of the scale this time. Remember how in my last post I mentioned my worry about insurance not covering her medications? Well.... So it begins. I've been using samples that they have been giving me and haven't needed to fill any perscriptions yet. Except her inhaler. She has been starting to get super 'rattly' in her lungs. Not horrible. But just more noticeable. I mentioned this to the Doc. She decided to be proactive and start her on pulmozyme. 

Here is a little info:
Pulmozyme® is an inhaled medication used to treat the symptoms of cystic fibrosis (CF). It helps thin the mucus in the lungs so people can cough it out more easily.

Pulmozyme, along with other CF therapies, improve lung function in people with CF. Taking Pulmozyme every day has also been shown to reduce the risk of lung (respiratory) infections.
Pulmozyme acts like “scissors” in the mucus. It cuts up the DNA strands outside the cell that can make CF mucus thick and sticky. This DNA is from the white blood cells that work to fight lung infections. Even if a person with CF has not had a lung infection, the white blood cell DNA is still in the mucus.

So a 'typical' CF treatment goes like this:
1. Bronchodilator - like albuterol inhaler
2. Mucus thinning medicines, like Pulmozyme
3. Airway clearance-like chest percussions
4. Inhaled antibiotics

Pulmozyme is something that is going to be part of her survival in life. Even with this drug, CF will continue to damage her lungs but this drug helps extend the health of her lungs. Well.... my insurance doesn't cover it. They don't even cover the machine (nebulizer/compressor) in order for her to take the drug. They also don't cover her vitamins. Common seriously. Vitamins people!!! I'm waiting to hear back to see if I get my 'special' approval. These are things she needs to survive. These things are not optional, and they aren't covered!!! This is wrong, and it's only the beginning. I.... We are going to be constantly battling 'the system' trying to get the things she needs for survival. 

As I was sitting there in the parking garage of the hospital, having just left their pharmacy empty handed, I just sat and cried. I was being slapped in the face, again, with the reality of CF. Its such an ugly, horrible, cow pie and bologna sandwich, stupid disease. I drove home with this dark cloud full of thunder and lightening, just hovering over me. How? What? How? Why? When? Why? What the heck? So many things storming in my mind. 

Wait.... And your grateful for CF?!

Why yes I am! Let me tell you why. 

I teach Relief Society in my ward and it was my week to teach. I had been going over my lesson but had been struggling with where to go with it. So I kept putting off writing it up. Saturday, I decided instead of staying home and working on my lesson I would go help my friend who was in desperate need. I love this girl. Seriously. She's an amazing mom and friend. She has some major trials going on and I was ever so happy to go and help, even just a little. I left her house that night feeling on top of the world. Serving had put some of my broken pieces of me back together. And what do you know... That's what my lesson was on. Doing good in the world. Serving one another spreads happiness. It makes the person your are serving happy and in turn it makes you happy. We get so wrapped up in ourselves sometimes and forget that the best way to be happy is by serving others. 

Our happiness increases when we help others find happiness.

We should have before us a strong desire to do good to others. Never mind so much about ourselves. Good will come to us all right if we keep our minds outside of ourselves to a certain extent, and try to make others happier and draw them a little nearer to the Lord. … When you find yourselves a little gloomy, look around you and find somebody that is in a worse plight than yourself; go to him and find out what the trouble is, then try to remove it with the wisdom which the Lord bestows upon you; and the first thing you know, your gloom is gone, you feel light, the Spirit of the Lord is upon you, and everything seems illuminated. -Teachings of Lorenzo Snow, Chapter 22
So what does this have to do with CF? I would've never learned this lesson if it wasn't

for my daughter's CF. I would have never noticed the difference in my happiness or how to get my broken pieces back together if it wasn't for the experience I had at the hospital the day before. I am being forced to grow, wether I like it or not, and it's because of my children. The Lord is working through them. Especially my sweet little Molly. I am grateful for Molly because she is a major blessing in my life and I wouldn't want her to be any different than she is now.

So yes..... I am grateful for Cystic Fibrosis.

Not even 3 months! She's such a strong little girl! 

Wednesday, November 06, 2013

Fall Beginings

October is one of my favorite months. In fact it's my favorite time of year, because it is the start of my 3 favorite holidays. Halloween, Thanksgiving and Christmas!! We find ourselves so busy with friends, family and festivities, a few of my favorite things. The munchkins are at an age where they are starting to like playing all sorts of games and are understanding the 'rules' of how to play. 
For family night this week we taught them how to play Sorry. I am the running champion in our family. Chase hates this game because he rarely wins. 
Kael loved it, because he can recognized his numbers and counting. 
Mr. Smarty Pants is loving pre-school and all that he is learning, so any opportunity he gets to show off his skills is fun for him. 
Claire just liked landing on the arrows so she could slide her pieces and she was good at pretending to count. Love that little Sassy Pants.

Halloween is a must at our house. We've been getting lazy each year with setting up decorations, and what-not. But never with our costumes! This year we were Mary Poppins and Bert the chimney sweep.
 Kael was super excited to be a ninja. He had awesome swords that he slapped everybody with. 
Claire was Snow White. That is her favorite princess. Mostly because she loves to imitate her singing. When she was asked to sing to the birdies like Snow White, she would bust out her best, high pitched singing voice. She was the star of the night and loving every minute.
Molly was the most adorable little giraffe. And was perfectly happy riding/sleeping in the stroller the entire night. 

Speaking of Molly,
this little butterball is 2 months already!! She is getting so chunky and I just love it!! She is still so tiny and petite but soft and squishy and covered in rolls. 
She is constantly smiling and happy as can be.
She is my little ray of sunshine.

Some days are still hard.
 Every time she coughs or sneezes my heart aches. I pray that we can keep her healthy. I panic inside every time someone touches her or wants to hold her. Every time we leave the house I fear she'll catch something. I feel like a crazy mama bear, ready to claw someones face off, if they cough or sneezed in her general direction. I worry that our insurance won't cover something or we won't be able to afford her care. I cry for the struggles and battles that she will have to face.
I want to scream at the universe and blame somebody.

And then I see her smile. That beautiful glowing smile. 
And I remember she isn't alone. I'm not alone. We are not alone.
When she smiles it's like she's telling me, "Mom.... Don't worry. We are strong. We are fighters and we can do this. Smile and be happy, mom."