Tuesday, December 17, 2013

With Hope, The Odds Don't Matter

I've learned the importance of raising awareness. If nobody knows about it, then how can you receive or give help? 
Growing up with cousins who had cystic fibrosis was an easy way for me to become 'aware' of the illness. And now that my own daughter has it, I am even more 'aware' and I have an even greater desire to raise awareness about cystic fibrosis. 
Cancer seems to be something almost EVERYBODY knows about. I've lost so many.... too many, friends to this awful killer. Each one was different. Each 'Killer' was different and I became aware of them because they had taken someone from me. 
I hate cancer.

But..... I have learned the importance of awareness, and what a powerful tool this can be to even just one person. 

I have friends who have beat the odds with cancer. Because someone, started raising awareness, at one point. And through that more people started learning and helping and saving. 

In the cystic fibrosis community I have personally seen the changes and progress awareness has helped create. 

I recently became 'aware' of a different type of cancer I knew nothing about. I would like to share one survivor's beautiful story of hope. 

Her name is Heather. 
In 2005, at the age 36, and only 3 months after giving birth to her daughter, she was diagnosed with pleural mesothelioma. She knew she needed to find a way to beat the odds for her husband and newborn. 
Asbestos is not banned in the US, yet it’s the only known cause of mesothelioma. Once diagnosed, most patients die within 2 years.
It has been almost eight years and she has dedicated her life to spreading awareness of this awful 'killer.'

Please take a moment and click here to watch a short clip on her story..... Help us raise awareness.

Help us share hope.

With hope, the odds don't matter.

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."

Wednesday, October 23, 2013

Oh, A Camping We Will Go

Camping is what we do. Every year we go on several camping trips. We go just our small little family, we go with extended family, we go with friends, we go as a couple, we go for a long time or just a short overnighter. Camping is what we do. 

This year, we went camping once...... tragic. 
Seems every time we tried to go something was going on. We have two family reunions that we go camping for and we didn't get to go to those either. Missed one because of work and the other because I had a two day old baby. People think I'm crazy for wanting to go camping while I'm pregnant. But I love getting out of the valley to enjoy nature and cool weather. Marshmellows, campfires, dutch oven cooking, naps, games. Love it.
My Parents decided last year that they were going to start a little family reunion of their own and go the weekend after general conference every year. We went last year and were planning the trip for this year.
Finally.... we were going camping!! For 5 days!!!! Yippee!
I was so looking forward to this trip. It was a much needed escape. It was the craziest weather ever on a camping trip, but it was perfect. The day we got up there is was super windy and a storm was rolling in. About 2am the rain started and never let up. It just kept coming down with a crazy vengeance. Finally it seemed to have stopped but when we woke up that morning. We found it hadn't stopped but it had turned to snow! What?!
My kids were dying! They love the snow! 
It snowed most of that day then by the next day it was warmer and the snow was melting. We thought it was going to be a muddy mess but it dried up by the third day.

Molly stayed toasty warm the whole time. I was worried she was going to freeze but she was perfect the whole time minus the night I drank hot chocolate. It gave her a bad tummy ache. My bad.

 A tarantula decided to grace us with it's presence. It was just wondering thru camp and I nearly stepped on it. Just about gave me a heart attack!

 Kael found an inch worm and decided to make it his friend for the day.

 And of course the kids loved riding quads. We learned that Claire is a little dare devil and Kael is a chicken. She would yell go faster and lean into it. When you would go fast she would just squeal with delight and say do it again. 
We all got good and dirty. And even though we didn't get to go on any other camping trips this year this one definitely made up for it.
Here is my new favorite dutch oven dessert: Almost Pumpkin Pie (12" Camp Dutch Oven)

1 (29 ounce) can of pumpkin 
1 TBSP pumpkin pie spice
3 eggs
1 cup sugar
1/2 tsp salt
1 tsp vanilla
1 cup evaporated milk

1 pkg yellow cake mix
1 cup chopped pecans (optional)
1 cup butter

Mix together all the filling ingredients. Pour into greased 12 inch Dutch Oven. Cut butter into cake mix then mix in nuts. Sprinkle over top. Bake for 1 hour with 8 coals on the bottom and 16 on top. When done, may be served with whipped cream or ice cream. May also be served cold. Serves 12-16.

We got this recipe from a dutch oven cookbook. It is seriously awesome!!

Tuesday, October 08, 2013

Follow Molly on Facebook

I have created a page for Molly on facebook for anyone who would like to follow what's going on with her. Feel free to share it with anyone you would like too. The more people who are aware of cystic fibrosis the better! Here is the link: www.facebook.com/SimplySalty

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Sunday, September 29, 2013

Sweet Memories

We blessed Molly today. It was such a sweet and special day. I was worried I was going to be an emotional wreck but I held it together. It was so awesome being surrounded by friends and family. I thought I would share a sweet little experience from the day. Chase did a wonderful job with her blessing and I felt at peace while he talked. After the meeting, as we were all walking out the door I was stopped by my bishop. He told me that while Chase was talking and said he blessed that she would be able to overcome and fight off any infections and illnesses, Molly opened her eyes and smiled. This melted my heart. I know that she will get sick eventually and it will probably get scary at times. But this little memory will be with me always and help me get through the burden of having to watch her fight. She is strong. She is a fighter. And she know's it.

Many people asked me who she looked like today. I think she mostly looks like Kael with touches of Claire. Here are some comparisons..... You be the judge.

 Molly's Birthday

 Claire's Birthday

Kael's Birthday

Molly One Week

Claire One Week

Kael One Week

 Molly's First Bath
Claire's Firtst Bath

Kael's First Bath
Molly One Month
Claire One Month
 Kael One Month
Kael's Blessing 2008

Claire's Blessing 2010

Molly's Blessing 2013