Here Comes the Sun…. IT HAS TO RIGHT???!!! SPRING.. PLEASE!!?


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Wow. This winter has been pretty brutal for nearly everyone I know. There’s been a lot of cold, a lot of snow, and a lot of illness. The past month and a half has been full of illness for this family.

Jack got a cold that he couldn’t get rid of, he’s having his adenoids assessed to see if we need to remove them. Anna fought her little butt off trying to get rid of her cold for weeks but she’s officially off of antibiotics after a month and so far she’s still at her baseline of zero cough. So hooray!!! And she is a beautiful little ballerina in her ballet bunnies class, she couldn’t love it more! However, as much of a princess as she has become she still loves to wrestle too :)

Surprising, I’ve been the sickest of us all, while also being the one never allowed to get sick!! I’m currently fighting bronchitis that turned into pneumonia so it’s my turn for heavy antibiotics, breathing treatments, and steroids. As hard as it is to take care of everyone I’d take it over Anna ANY day. Feeling my lungs compromised in this way makes it’s makes me so much more dedicated than ever knowing how painful coughing is to make sure that what I’m feeling now is NEVER EVER Anna’s day to day life.

Oh and did I mention we moved this weekend?!  We are loving our new house but we are very ready for some warmth and calm in our lives.

Like I said, it’s been a crazy winter! To say we are looking forward to Spring is an extreme understatement…. AND the most exciting part of spring is ANNA’S AMAZING RACE!!!!! Our talented coordinator Robert has been working hard getting his creative clues made up and we are on our way to a great event. All we need now is YOU! We promise to make this year better than ever, with better routing, really fun and challenging tasks, and ultimately an awesome and unique experience for a fantastic cause. Every year we are learning from the last to make things better and more fun. I am SO excited about this years tasks that I wish I could race myself!!!  Sadly, I know too much.  This is a competition after all!! But I’ll be in charge of a really fun task, if you’ve been there the past few years you know it’ll be a good one!

This year our focus is going to be on fun AND on reaching out. Here are some awesome ways to raise money for your team:

- Tell your friends! It’s even more fun competing against people you know. Ask your co-workers or friends to make their own team and you can even get some bragging rights once you win :)

-Send emails!!!! You’d be shocked how many people you can reach who haven’t even heard of CF, and you’ll also be shocked by some people you may not know who also have been personally affected by CF and are willing to join into our fight. And donation or not you’ve informed one more person and we appreciate that so deeply.

- Check into your company and any match program they may run. Over the past few years more and more companies have been joining in a company match program where they match an employees donation to a charitable cause.

- Have a party! Doing something fun like having a party with games, beer olympics, flip cup tournament, or games of some kind that require a pay in that you can dedicate to your teams donation. Can’t fundraise without FUN right?!

- If you work in a school or grocery store where you can sell flyers please let me know and I can get them to you! Great way to earn money for your team.

- Ask your family! Being charitable is something to be proud of any ANY amount of donation is priceless to us :) P.S – Easter is on it’s way, great time to see your family and you can always look for some money filled Easter eggs :)

- If you work somewhere that they allow you to put a collection jar out for donations, contact me! I will set this up for you and help in any way I can.

- Check into restaurants that are willing to donation portions of a night of sales to your team. A lot of restaurants will be willing to give you a night where a portion of proceeds go to our event, I know Friendly’s and Isaac’s are two that definitely participate.  AND come to our event at Mudhook Brewery in York on Wednesday May 7th! Our very own Robert will be guest bar tending  and 20% of your check will go to our event!

Raising money is our passion because we are funding research for a CURE. And it is on the horizon, it’s so close but yesterday wasn’t soon enough when you’re a mom watching your daughter struggle and be different because of mutation in her genetic code. Raising awareness is our second passion, putting a face to this disease that so many people have never heard of. So please, get out there! Get a team together!

Please share our story on social media, it’s such an amazing tool that can truly change our lives and giving Anna a chance at a TRULY healthy life, free of this debilitating and currently fatal disease. One day we can all say WE had a part in curing the most prominent genetic illness.

So let’s do this my amazing friends and family (this means you especially Musso’s ;) We want to see some old man Musso teams out there! ). If we can get teams signed up all throughout this month then you’ll have all of April to raise funds and reach out! My heart is full with the love everyone has shown our family if over the past two years and I want you to know this means the absolute world to us. Thank you all for being part of this journey with us.

Now let’s all forget this miserable winter, look forward to Spring, and  have some fun!!!

You can up your teams here:

http://mycommunityevents.com/common/eventDetail.aspx?id=25061

You can donate to our event here:

http://www.mycommunitytickets.net/common/eventDetail.aspx?id=25062

We will also be creating a paypal account to make it easy for paypal users to donate that we will have available in the next few days OR you can also send donations to our NEW address:

233 S Pitt Street

Carlisle, PA 17013

All donations are tax deductible using the tax ID code 13-1930701

If anyone has ANY questions about the registration or donation process please feel free to contact me anytime at kmmusso@gmail. com.

We are looking forward to an amazing event with great people! See you all very soon!

 

 

A Summer of Sun, Fun, and HEALTH!

It has been a tradition for many years now that we spend my birthday (July 2nd) and the week of the 4th at the beach.  This is the first year since Anna’s birth that we fulfilled the tradition. Two years ago we spent my birthday at Johns Hopkins getting Anna’s first dose of enzymes. Last year we spent the 4th of July in bed long before the fireworks. But this year we made it to the beach!

We haven’t traveled much since Anna was born but this time it was markedly less stressful than in the past. Just visiting my parents house an hour away has gotten my CF packing down to an efficient routine. It’s only gotten efficient because of a few mistakes though (hint: always check your fridge when packing meds because refrigerated antibiotics can cause extra hours of driving when left behind). Luckily we had no antibiotics to pack this time! I actually felt a lot of peace about packing because I knew anything I forget I can always get there as long as I have Anna’s medicines, vest, and nebulizer.

I made sure to consult with her doctors before our trip and they said that a trip to the beach is always a good thing because the salt water/air is therapeutic. One of the nebs so does twice a day is hypertonic saline which is pretty much just really really concentrated salt water so she was just getting a little extra dose :) We let Anna use a baby pool while on the beach just for the week and then got rid of it. CFer’s are told to stay away from pools like that because water can remain in it and bacteria like pseudomonas can grow. We asked the doctors and they made it clear that using a brand new pool just for the week was safe as long as it dried out outside every night. One of the important things we needed to keep in mind was keeping Anna cool on the beach, so the pool was helpful for that. We also used a big canopy to set up a shady camp, although she much preferred running around in the sun! We made sure to keep applying sunscreen so that she didn’t get too much sun, the doctors made sure to tell us to not allow her to get a sunburn. CF kids can easily get dehydrated since they sweat out a higher concentration of salt than other people. Because of this we had to make sure we were replacing the salt her body was losing so we kept her snacking on salty snacks like chips and pretzels and she drank nice cold Gatorade on the beach. Overall she didn’t have ANY health problems at all. She did great!

While we were on the beach I was definitely feeling the CF pressure a little bit and just making VERY sure she didn’t get dehydrated but in general CF was really not a major part of our vacation at all. We had such a fun time with family and friends, and my kids are total beach bums! They loved everything about it!

We loved it so much that we went 3 more times :)

We soaked up every minute of summer and were blessed with incredible health for Anna. She has been consistently gaining weight, baseline cough is still non-existent, and she is potty trained! So we had a major couple of months. She did a course of antibiotics a few weeks ago after she caught a little cold from her big brother being back to school. The antibiotics did their job and she cleared up over time. At her last clinic appointment she cultured a small amount of normal staph (normal meaning not MRSA or anything concerning) which is common and doesn’t cause any problems. We are still crossing our fingers and praying for these kind of culture results because we are still SO blessed that she hasn’t cultured anything bad, ever.

While we’ve been taking some time to just enjoy life, we haven’t taken any time off working toward a cure.  We are already planning next year’s Anna’s Amazing Race that we promise will be more amazing than ever! And we are lucky to have so many of our loved ones behind us who are consistently supporting our cause. Two of our friends ran the NYC marathon last week for Team Boomer raising $3,500 for the Cystic Fibrosis Foundation. And WebpageFX, Alex’s the most incredible and generous employer, donates year round using the Amazon Smile program and making a cure for CF one of their passions. So the fight continues! And in the meantime we are just purely thankful. We are thankful for everyone reading this, for everyone supporting our family and the search for a cure, and for this beautiful time in our lives with our babies.

Here are some pics of our summer and our SUPER Halloween!

Anna Rose is Two!

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June 16th was Anna’s 2nd birthday! It’s hard to believe that she has only been here for two years, I can’t even imagine a time without her in it! Over the past two years, she has filled our hearts with so much joy and brought so much laughter and love to our family. Anna has changed a lot of things for our family and I can honestly say she has changed us all deeply for the better. She is the most loving and the most strong-willed little girl. She is determined and hilarious. I’ve learned SO much from being her mom. I feel so lucky every single day that I wake up to my kids beautiful faces!

Somewhere in the past year CF transitioned into completely normal life for us. We’re still learning every day but once we felt like we had a deep understanding of what CF is and how to recognize problems quickly with Anna things started to feel better.  There are still scary moments when I feel surprised by the severity of her illness like the few times she was close to hospitalization this year, but the good thing is that those times have been few and far between. Her treatments and medicines have become routine and the sanitizing, cleaning, and just being germ-conscious has become second nature.

Anna seemed to enter the terrible two’s a little early so we’ve been dealing with some rebellion here and there. She went through a period of time when she tried not to take her enzymes, she would cry or run away. She also has her moments when she doesn’t want to do her vest and nebs. She’ll cry, kick, scream, etc. The way I’ve managed it is to stay firm, this isn’t an option for her and I want her to have that mentality in the future. It might sound harsh but for any other moms or dads struggling with the same issues I’ll let you know what works for us: tough love. I flat out tell her she can’t eat until she takes her medicine. Sometimes she’ll hold out for a little while but eventually she takes the meds and eats. During her vest if she’s causing major problems like pushing her nebs away then I tell her I have to hold her and I hold her and do them for her. She’s very independent so she’ll always eventually choose to do it by herself willingly rather than me hold her.  It might sound harsh but it works for us. While I’m hopeful for a cure, until we have the cure in our hands and Anna has it in her body, I envision her future with CF in it. I want her to be prepared for taking care of herself on her own one day, I picture her in college and considering skipping meds or treatments and I know I want her to think “no, that’s not an option for me” and keep herself healthy.

Another recent change is that she is now taking the enzymes ZenPep 10,000 unit capsules so they are larger but she only takes 3 with every meal instead of 6. It’s a little more helpful and will be very helpful when she starts swallowing them whole. We made an attempt at her trying to swallow one and it really did NOT go well so we’re going to put it on the back burner for a little while before we try again. Also, while she is at a good weight she hasn’t been gaining very much so she’s drinking a nutritional supplement once a day. She loves PediaSure, she thinks it’s a milkshake! So it’s been going well so far. I can’t wait until her next weight check!

For Anna’s 2nd birthday party the theme was fairies! She is our little Tinkerbell so it was a good choice. It was only our immediate families and we all had a great day :) The most special part of the day was that my parents both unknowingly to each other gave Anna a trampoline as her gift, one for inside and one for outside. At her last CF appointment the physical therapist explained to us how great of a therapy tool a trampoline is for a CF kid because it essentially does the same thing as her vest. My dad was at the appointment and I just mentioned it to my mom and next week 2 trampolines show up at our house! It just shows how much everyone loves her by giving her something she loves that is also keeping her healthy! Now it’s like she’s doing her vest allllll day long, I mean all day long haha she loves to jump! She is currently jumping as I write this. She’s going to be the healthiest CF kids around!

Over the past two years I hope we’ve raised a lot of awareness and most importantly we’ve worked for a cure. Every year we will try to grow our fundraising efforts and we’ll never give up. We’re so blessed to have so many people who love our little Anna. You’ve helped us raise over $20,000 in just 2 years since Anna and CF entered our lives. We are so appreciative of everyone loving and supporting our family and every birthday Anna has is a gift for us in part from all of you. Now to look forward to 100 more birthdays for Anna!!

Thank You, Thank You, Thank You!!!!!

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Anna’s 2nd Amazing Race was nothing short of truly amazing. It was a day full of encouragement and love. Words can’t describe what it meant to us to see the support of our families, loved ones, friends, and even people we have never met that somehow found our story and wanted to contribute to our cause. There are times that this disease can feel isolating, having to keep a distance between CF patients themselves, and the fact that while being a common genetic illness it isn’t all that common to meet other CF families.  Seeing everyone come together on this day to show their support for Anna and for our family, and to show just how many people are fighting with us for a cure, is the most wonderful feeling I could imagine.

Last year was our first year fundraising and we set our goal at $2,500. We were surprised and elated when we shattered that goal and raised a little over $9,000 for the Cystic Fibrosis Foundation. Inspired by last year, we set our goal high for this year with $10,000. I thought it might be unattainable a second year but this year we raised $12,315!!!!!! We are so grateful for everyone’s hard work in raising funds and incredibly thankful for the awareness you’ve brought to CF in the process.

This year we had 20 teams racing!! We were so happy to see familiar faces coming back to race again and excited to see some new faces join our cause! Some teams even found us by reading about our event in the newspaper which was a great surprise :) We had all new tasks this year, they ranged from things like our own version of ‘Are you smarter than a 5th grader?’, to making CF posters and raising awareness downtown, to acting out a scene from a play. We plan to keep changing the tasks every year and we already have a lot of fun ideas for next year!

After everyone got back from the race we enjoyed food, fun, a raffle, and awards. The top prize went to the Lime Green team who finished the race first having completed all of their tasks. The top earning team was the Cowgirl Team who raised $2,000!!! A very close 2nd was the Black Team who raised $1,500. And the most spirit went the Gold team who’s creativity pulled them through, although it was a tough match against the Ladybug team!

We are already looking forward to next year when the race will be held on Saturday May 17th. We will work until then to make it even better! We recently submitted the donations directly to the Cystic Fibrosis Foundation where they will be using it to continue research in search of a cure.

This Sunday our little Anna Rose turns 2 years old! We are so thankful for the past 2 healthy years and we look forward to a cure in the near future!  THANK YOU for being part of making our dream of a cure a reality and for giving her the hope of truly healthy years to come. In her 2 years since we even heard of Cystic Fibrosis we have raised over $20,000 toward a cure. We are so grateful for the love and support we’ve received and on behalf of Anna and everyone who loves her so deeply we thank you from the bottom of our hearts.

We’ve included a gallery of photos below!

We need to thank some incredible and generous businesses that donated to our cause either through food, gift cards, or donations:

WebpageFX

Giant Food Stores

Viet Thai Cafe

Brown’s Orchard

Mcdonalds

Annie Williams for Mary Kay

Marino’s

Accomac Inn

The York Revolution

Mudhook Brewery

Krispvisions

Heuters

Primos Pizza

People’s Bank

Chipotle

R.D. Fence Company

Thank you all so much! 

We weathered the storm! Here comes the sun…

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In our last post, I talked about the latest that was going on with Anna. Here’s a quick recap: After a few days of cold symptoms, an x-ray showed pneumonia in the middle lobe of Anna’s right lung. We were presented with a long list of scenarios and were facing a long hospital stay if she didn’t improve. We kept her on an antibiotic, increased her therapies to 3 times a day, and worked hard to get her healthy! It was VERY important to get the pneumonia resolved because it is when the lung is compromised that lung damage can occur, so we wanted to get it taken care of before that had a chance to happen.

It took a few treatment filled (and anxiety filled for us) days but she finally started to improve on Thursday of last week. Since then she improved a little bit every day but I wasn’t sure it would be enough to avoid hospitalization. It all came down to her x-ray. I haven’t felt anxiety like that in a LONG time. I knew everything would be ok and we would do whatever we needed to get her healthy but let’s face it, no one wants to be stuck in a hospital room for 2 weeks! I didn’t want Anna to have to go through the PICC line, or any of it. We spent a few days there last year but this year she is so much more aware and active and talking, I just didn’t know what to expect. I’m happy to say I STILL don’t know what to expect because we have narrowly avoided yet another hospital stay. Her x-ray showed that her lung was GREATLY improved. The x-ray looked completely different! It was the absolute best possible outcome. I’m so proud of her for being so strong and being cooperative during all of the extra treatments. She is our big, brave girl :)

So now, more passionate than ever for a cure, we get to get back to our fundraiser THIS Saturday!!! We are SO excited for Anna’s 2nd Amazing Race. We are thankful to all those signing up and and donating. We officially have more teams than last year and are really excited to hear all these new racers joining! We can promise you a day of fun and laughter for a great cause. Please share our video, send out emails, post on your Facebook page, anything! You will be surprised how many people will respond and regardless of the outcome you are spreading awareness which is HUGE!!

I wanted to let everyone know that when making an account on My Community Events website to donate, all of that information is required to use a credit card, it is completely secure, and the information will be used ONLY for your donation and nothing else! No spam, etc. We will also be taking cash or check donations either before or on race day. All checks should be made out to the Cystic Fibrosis Foundation. All donations are TAX DEDUCTIBLE!!! We have the links to sign up your team and donate linked here. If anyone has ANY questions about donating or signing up please let me know I am happy to help! You can email me using our contact form and I will get any info you need. Just a reminder we still have a team of 2 looking for 2 more members if anyone is short a few teammates! We are so excited to see everyone on Saturday. Thank you for all your support always and for your prayers and well wishes this past week. We couldn’t be more appreciative and we feel SO blessed to have you all in our lives.