Jingled all the way to the tune of $1520!

Our Run for Reason Season with the Rosebuds was a wonderful hit!  We are so excited to announce that Elena's team of CF Superheroes raised $1520 in gift cards!  Way to go team!

We are so happy to be surrounded by so many supportive and caring people.  We met many lovely families today that are affected by Cystic Fibrosis. Many just learned about us today!

Our team photo will be up later.  Here are some other fun photos to share now!

What a great day:)

 Elena, Nana, and Dr. McKean (Elena's excellent CF dr, and when we say excellent, we MEAN it) running the Rosebuds table.

 Family gathers around as we wait for the start of the race.

 Elena's ever supportive buddy, Cassidy!

 Even Santa and Mrs. Claus supported the cause!

 Go Everett and cousin Audrey!

 Elena helped Emily run the Elf run:)

 Logan says he's number one and we must agree!

Elena helped her friend Cassidy finish up her 1 mile.

Another wonderful Rosebud event.  We are so proud of Elena and all of her accomplishments, especially her tireless efforts to help find a cure for her friends and herself living with Cystic Fibrosis.

Oh man...here it comes...

Yup, here it comes...that time of year when everyone gets.....sick!  This year we are hoping for a low key, germ free holiday.  It's possible, right?

So far we have had some runny noses that were easily mended.  Thank you Jesus (both hands in the air and using our TV Church voice...you know the one).

Elena has been different with sickness.  She seems to handle sickness so much better with each year. As she gets older she knows not to stick her fingers in her eyeballs after she grabs the shopping cart at the grocery store (her siblings are slowly...very slowly mastering this one).  She knows to wash her hands often (I think our household has this one DOWN!!). She recognizes when someone doesn't look well and she keeps a safe distance or politely removes herself from the area (something many adults don't ever master).  She KNOWS how to protect herself when other people are unaware of what their "little sniffle" could do to her.

Our family and friends GET IT!  We had grandparents steer clear of a popular family time gathering because they were worried about what their "little sniffle" might do to the kids, but specifically Elena. This is not the first time we have missed time with friends or family because we have had to make a tough call to avoid the chance that Elena might get some germ that hospitalizes her. It seems so extreme to many, but a daily and very real concern for us.  We are so thankful for each time someone gives us the run down on their family's health before we arrange to get together.

So, in the spirit of thankfulness...THANK YOU to our friends and family that work as hard as us at trying to keep Elena as healthy as she can be!  In turn, we are all keeping each other healthier...it's a win-win:)

Test Results

The test results for Elena's recent culture came back negative!

Her lung function is down, but all else is well.  That is a victory in our book and we will take it!

Meanwhile, she is continuing to do her twice a day breathing treatments (30-45 minutes per session) plus taking her wide assortment of pills.  Thank goodness for maintenance medicines that keep her growing and strong.  Praise God for a wise doctor (with amazing staff) that looks at his patients as people whom he really cares about.

First.

Elena has been struggling with keeping her lung function up. We got rid of whatever germ was hassling her ear a couple weeks ago.  We thought the function would go up, but it didn't. Dr. McKean is running some more tests.  Meanwhile, she is doing great!  You would not know that the function is down.  Just another little bump in the road.  We also wonder if the testing was just off because she is not having any other problems and her lungs sound clear.  We will know more next week.

Why is this titled "first"?  Elena had her FIRST real audition on Friday for a student film.  She was trying for the lead.  She had so much fun and stated afterwards that she loved the crew.  Regardless of the outcome, she learned some new things. So exciting!

Rosebuds photo shoot

Thank you to the founder of the Reaching Out Foundation, Susan Burroughs, for taking the time to do a photo shoot with our little Rosebuds this morning. This is just a little taste of the fun stuff she caught on film this morning.

A Fun Twist on a Not So Fun Disease

Our Friend and CF Cybro, Andy Lipman, has been a great voice of CF for many years.  He now has produced a music video to send a message about life with Cystic Fibrosis.

"I Need a Nebulizer" features photos of people with CF, but especially two of our favorite CFers, David and Elena!

Enjoy!!

Here is the video “I Need a Nebulizer.” It’s a parody of Billy Joel’s “We Didn’t Start the Fire.”

http://www.youtube.com/watch?v=VyrqrjcPDq4

Rosebuds Superhero!

Elena was a CF superhero today as she recruited runners and team members for her upcoming Rosebuds jingle jog race on December 7th. She braved the rain at the big peach sizzler. She was adorable in her cape and mask!

She was visited by many friends including her awesome CF doc!

I'm a proud MaMa.

Want to join us on our mission?

Check out our super flyer:

Enter team "rosebuds" and use discount code "ROSES"! 

www.jinglejog.com

Registration will be open soon!

See you there superhero!

What cystic fibrosis has taught our family.

I have been thinking about this post for many months. I haven't been quite sure how to word it. However I've decided to quit mulling it over and just type from the heart. This is the result...keep in mind that we know we are not perfect superheroes, despite the picture below.

We are not in charge; God is. Remember that saying let go and let God? Yeah well, we only thought we were good at that until our first child Elena  was born. Then we realized we had a lot to learn. I felt like I aged 10 years the day of her birth. Not just in years but in knowledge and wisdom about life.

The Letter E is pretty cool for the obvious reasons like our children Elena, Ethan,  Emily,  and Everett. Or for ridiculously long Eyelashes. But also For Enzymes. Without them Elena  would not gain weight. Her tummy would constantly hurt.

Celebrate the little moments often.  Because you never know when things might change in your life permanently. This goes for everyone.

CF can change Elena's health in a heartbeat.  She can be healthy and playing one hour and in the next hour be admitted into the hospital. This is not a result of anyone failing to do the right thing. This is just life with cystic fibrosis.

Cystic fibrosis is an expensive disease to care for and treat. However, we would rather go without than have Elena  not get the medicine she needs. This is why it is important to support the Reaching Out foundation. This organization helps people that are struggling financially so their children will never go without meds. Elena's fundraising running team , rosebuds, supports that foundation as well as the CF foundation. She would love to have your support on this adventure!

Always assume the best when it comes to your family and friends' intentions, however when it comes to Elena's  health you can go ahead and assume the worst because it may be a reality. This may sound pessimistic but it also can save  Elena's life.

Laugh, and do it often! It helps take your mind off the reality of how very difficult your child's life is and will be with CF.  Find the positives in the bad. Go ahead, be a Pollyanna!

Pray and do it many many times during the day. Pray for the things you're thankful for, pray for the doctors and nurses and the researchers. Pray for your family and friends. Pray for the Siblings of those with CF, pray for the CF fundraising organizations, Pray for clarity on the toughest days, pray for peace when you're scared,  pray for a cure.

You must be organized and I mean really organized at all times. Juggling treatments, Meds, doctor visits, tests, homeschool, etc..you all know what I'm talking about. Everyone has their schedules and hassles to juggle. Your house may not look like the Container store or IKEA, or you may not sync calendars with your spouse yet, but strive to get there. Having things organized and clutter free helps make your brain feel clear. At least it works for us.

Others will not truly understand unless they have a child with CF. So, you don't want other people to understand ...ever... And you are sad when they do bc now they will have their own list of what cf has taught them.

Don't judge. You really don't know what people are going through. I have had so many people approach us and tell us that what we were feeding our daughter is unhealthy. I have had people approach me and tell me I was giving my daughter too many pills. Since the birth of Elena,  our family has had a different outlook on so many things. However, the one thing I have embraced is not passing judgment on anyone. This goes hand-in-hand with always assuming the best in people. What might look to you like a parent that doesn't care about their child's misbehavior could actually be a parent trying to help their child who is autistic.  What appears to be a quiet unfriendly person is actually someone who was just diagnosed with cancer. Don't judge but consistently show love. 

Surround yourself with friends that don't judge. They will be your life line when times are tough. These friends will understand when you can't call them all the time. These friends will understand when there's weeks of silence between the two of you.  These friends will understand when you have to cancel a visit at the last minute because of sickness.  These friends understand your good intentions even when the weight of cystic fibrosis has worn you down. These friends will always be there for you and you for them. Your energy is precious and should be reserved for your family and friends that love you, not wasted on trying to explain yourself. Show those that judge you love by taking the time to be courteous, but move on. 

Keep your home and your heart open to new friends. You never know what new and exciting people you are going to meet. I have met so many wonderful people within the cystic fibrosis support community. So many of them are friends for life.

Show respect to your parents and your grandparents. You are who you are because of them. The good and the bad times have made you who you are.  Be thankful for that and show them your appreciation as often as you see them.  Life is too short to hold grudges.  Replace the grudges with lots of grins!

  

Family, Family, Family...help them, love them, support them because they need you as much as you need them.

The flu, viruses, RSV, asthma attacks, none of these seem like a real big deal anymore when we're dealing with the non CF kids health. CF put things into perspective. Yes, These things could be scary, but nothing gets to you anymore. Other health concerns don't seem nearly as big a deal as they would if we didn't deal with CF daily.

Cystic fibrosis does not define our family, but it has helped us grow, learn, and love with a ferociousness that we are most thankful for.

You already learned these things due to your own life circumstances? Super- fantastic! Build your list! Look at where you are and look back at where you came from. What a road it is to get there! Now look around you. Are you surrounded by family and friends that support you? Go give them hugs or send them notes and tell them you are super thankful for them. Tell them how outstanding they are.  Squeeze your kids right now. Tell your spouse/ significant other how amazing they are and how much you appreciate their support and love. 

I wish I could say that I have mastered the lessons listed above, but I'm a work in progress. I'm sure I'll think of more lessons  later, but that's because we will continue to learn and grow. Thank goodness for that! Until then, we will continue to fight CF for Elena and our friends with CF.

Ready , set....FIGHT!

What have I learned? I love my family and  I love my friends just the way they are. I love my life just the way it is. Thank you cystic fibrosis.

Best everrrrr....

Best doctor visit ever! Her lung function is the highest it's been in one and a half years. :-)

This calls for a giant slushy at QT!

Thank you CFLF for a Recreation Grant for Elena!

Elena won a grant to participate in an exercise/strength building program geared towards kids her age at Body Plex.  She submitted her request to an organization called Cystic Fibrosis Lifestyle Foundation. They give people with CF grants to participate in classes/groups/events that will help improve their quality of life.  Elena was told that she MUST fill out the paperwork herself.  We are so happy for Elena that through hard work and dedication she earned her grant by writing the essay below.

My name is Elena. l'm nine years old. I have CF. Having CF is hard. I
have to say, the hardest thing about having CF is doing my vest and
nebulizer. My vest shakes to shake up the mucus in my lungs so it will
get loose and move out. My nebulizer is a breathing machine that helps
me get medicine in my lungs. This may sound like your normal just
taking a pill" but it actually takes a long time. I have to do it for 30
minutes every morning and night. This can really affect my schedule. lt
sometimes makes me go to bed late and makes us late for things in the
morning. I don't like that because we are always rushing to things and
then we are really tired the next morning.
Even though I don't like doing this stuff, I know it will help me be
healthier. Since I know this, I try to do my treatments really good
because I don't want to get sick and lay in my bed all day. I would
rather be outside playing with my siblings. I also wouldn't be able to go
to Summit Academy. That is a school for homeschooled kids. That is
where I do karate class, one of my favorite sports.
Because of what I am saying here, you can see that I like to exercise and
I DO. That is why I want to get the money so I can be in a weight
training class at my mother's gym that she goes to. I always ask her if
there are any classes that I can go to there. This is a really good chance
that I CAN be in one of their classes which can help me be healthier and
gain more weight (hopefully muscle weight). Even though I have to
take all this medicine and do all these treatments, I can still be kind of
like a normal kid. I can play with my other friends and read books at my
grade level and play with regular toys. Having CF is hard, but I get use
to taking all the medicine. This essay can tell you that I REALLY do want
to be in this weight training class.

Love Elena Goodrow

Wa-hoo Elena!!!! Now, let's go knock out Cystic Fibrosis...and some punching bags!

Elena in her first training class!

Knock out!

The boys really enjoyed watching her. Ethan kept saying "mom, she is doing great!"

Healthy, Happy, and on her way....

Since Elena was able to talk (at two in complete sentences) she has said that she wanted to be on TV.  Her desire and drive have not changed except that they have increased!  Now, she will let you know that she intends to be famous.  Her work with CF organizations are proof to her fulfilling her desires.  She takes on CF related projects and speeches and nails them every time.

On Thursday of last week she had lunch with Joy Pervis, the owner of the talent agency JPervis Talent.  Elena met Joy Pervis at the Wine and Roses Gala the night Elena was the guest speaker.  Elena made a silent bid on Joy's "Lunch with a talent Agent" package.  After hearing Elena speak, Joy decided that Elena would be visiting her agency regardless of winning the package!:) However, Elena's PaPa helped her win that package and she was counting down the days to meet with Joy again!

Joel, PaPa, Elena, and myself enjoyed a nice lunch at Figo with Joy.  It was full of plenty of conversation led by Joy and filled with Elena's enthusiasm.  Joel and I continue to be amazed her social skills and ease with any conversation with any person.  After lunch, we ventured back to Joy's office and got a tour of where she works her magic.  We met the staff, learned about people like Elena that are now in the movies, and then Elena did a short audition on camera for other staff to review.

The moment of real fun and excitement was when Elena was given a signed, framed photo of Blake Michael from Disney's "Dog with a Blog" show.  

She was about to talk with him on the phone to say thank you, but he was on set filming.  So we sent him a card instead.  She was hanging it on her wall within seconds of returning home.

The day ended with Joy suggesting we start marketing her so she can start having auditions.  She will start small with commercials and see how it can grow from there if she likes it.  Elena was unsure of what this meant.  So, once we were in the car on the way home she asked, "So, does this mean I can be an actress?  Did Joy say, 'Yes'?"

We shall see where this takes her.  Blake Michael told her to follow her dream.  Being famous and on TV is her dream.  I think this kid might do just that!