Given another chance...

We visited Dr. McKean yesterday for a CF check up. For the past 2 months our family has rotated, shared, and swapped sickness. No amount of hand sanitizer and hand washing seems to prevent the inevitable.

I always have a sinking feeling in the pit of stomach prior to CF well checks. Usually, we are surprised by some fluky crazy thing she has and that we were unaware of. As a parent, you feel like you have let your child down by not knowing they were sick.  We have learned with CF you never know when they are really going to get super sick...it just seems to spring on you!

Before this visit, Joel and I knew she was probably going to have issues and she does. Her lung function was down in the 70's which is very low for her. She is usually high 90's or even above 100. When her function gets this low, there is usually talk about a hospital visit. We are very thankful that Dr. McKean trusts that our family will work hard to get the right meds in at the right times! We are going to fight whatever this lung deal-e-o is at home and hopefully succeed like the last time we had this scare a few months back.

Elena is a tough little girl that we know can over come this! With her low lung function, she still managed to run a race with me on Sunday prior to her appointment!

Joel and I feel confident she will overcome this.  We will know for sure after her follow up visit next Wednesday.

Rosebuds

To my friends that are considering signing up their kids for Rosebuds (Kids helping kids with Cystic Fibrosis)...we learned there is not a kids race the Saturday before our adults race the 1/2 and full marathon on Sunday March 17th...sooooo....we are turning lemons into lemonade!  We are looking into having our little ones AND their parents run in the COLOR RUN in Atlanta on April 6th.  Be on the look out for more updates since the sign up for this race will begin on November 15th.  If you have not heard about the color run, you can check it out on this link. http://thecolorrun.com/atlanta/ It is AMAZING fun for kids and parents of all ages.  This seems like a great fit for having fun while also raising money for CF!  I'll keep you posted as we learn if this will work for us.  My amazing friend, Sue Stein, is trying to make this work for us!!!

Love to see a long lull from last post b/c...

When I have not posted in a long time on Elena's update, I smile to myself!  This is great b/c in this case, no news is good news.  The entire house has fought off viruses, colds, and sickness for the last month and 1/2.  Elena continues to have mild issues but nothing NEAR what the rest of the household has dealt with, PRAISE GOD!  Usually Elena is the first to get something and the last to fight it off with a lot of meds, dr visits, and occasional hospital stop in between.  We are HAPPY to have it the other way around.  I would rather be sick ANYDAY over ANY of my kids. 

Elena has been doing her newest medicine, Pulmozyme, for a couple months now.  She is doing great with it!  This medicine targets one of the causes of the typical CF thick, sticky mucus - extracellular DNA - to help keep mucus thin and loose.  Giving this to her at night allows this great med to sit in her lungs overnight and work its magic.  We have also added zinc.  This has helped increase her resistance to viruses and we can say that it works! These are the little victories in our home that we celebrate.

Meanwhile, we have started planning for the Elena's Rosebuds race!!!  It will be on March 16th at Centennial Olympic Park.  We are going to be doing a couple of fundraisers (one is a Thirty One product party where 100% of commissions go to CF organizations!)  You can shop for that by clicking HERE and shopping between Nov 1-12th.  Also, we will be selling the super duper cute necklaces from Bashful Bliss.  They are only $15!  $7 of those dollars will goe towards Elena's team, Rosebuds!  Be on the look out for that fundraiser.  I'll post when we finalize that.  You can get your Christmas Shopping done AND help out our cause:)  It's a Win WIN!

Oh, and for the parents who want to run/walk/volunteer, you can join Joel and I at the 1/2 Marathon/Marathon on March 17th!  Wear your crazy green socks for St. Patrick's Day!  I'm sure there will be some green beer awaiting you at our finish line tent. ;)

Everett's blog post update for himself and Elena.

So here's the update folks!

If I haven't said it enough...Dr. McKean and his staff are amazing! We bring a lot of noise and chaos into the office with each visit, but the kids really love coming and seeing everyone. My highlights were:
1. Everett showing Dr. McKean how they both had running shoes on (only the way a 15 mth old can communicate this, "a da a do a shhesh" while pointing to McKean's shoes then picking up his own foot and pointing to his own)
2. Ethan hugging McKean's back while McKean typed up Elena's health update on the computer
3. Emily not crying during her flu shot. All four kids and Mommy had their flu shot and Emily was the only one that didn't cry...Mommy was the loudest;) and
4. Elena demanding I NOT be present for her blood draw, but she was TOTALLY ok with her siblings being in the room :) I believe this was the first time EVER that Elena did not scream while she had her blood taken. Wa-hoo! Dr. McKean (who remembers how very difficult this task can be)joked that he was ready with ear plugs just in case, but no need!

Elena was there for her routine Cystic Fibrosis check up. She grew 4 inches and gained 2 pounds in the last 3 months! WOW! Her lungs sounded great and her lung function was up...wa-hoo!!! Everything looks and sounds great! We will wait to see what the sputum culture and blood tests reveal. I'll post those results when we get them. Meanwhile, we are feeling so very blessed for her continued great health! McKean suggested we start her on zinc to help fight off virus's and it seems to be working. Today, he said we should get the whole family on it. With the way it has been working for Elena, how can we not?

Everett met with McKean because he had two croup incidents in less than 2 months. Ev's pediatrician suggested we meet with Dr. McKean since he is an Ear, Nose, and Throat doc. In the mean time, Miller had us get an x-ray on Everett's throat and run a blood panel to search for any allergies he may have. Results reveal no common allergies and the xray shows he does have a narrowing in his throat as a result of croup. So, McKean has explained that 50% of kids with chronic croup or other breathing conditions, will out grow the issue by the age of 6. If Everett out grows being a "croupy kid" by age 6, then McKean will not categorize him as having asthma. However, he is going to treat him as if he does have asthma until then. We will keep some different meds in the house in case he has another breathing issue in the future so we can care for him at home.

I say this was a highly successful dr visit!  So, we have Elena doing great and Everett being cared for!!! All is looking good. Great doctors equals happy parents:)

Marketing

Elena will probably be in marketing or some form of television. Remember the video of her pretending to be the weather girl a few years ago? This is her doing an infomercial with her siblings.  Too much TV?  Let's just answer that with "We will be doing more family reading the rest of this summer." Enjoy!

Thank you Aunt Alison for the fun toys!  HOURS of fun is had by the kiddos with their Inkoos Inkoos INKOOS!!!

Self-less CF Heroes

I learned this week from a fellow CF parent that three different children (ages 5, 10, and 12) passed away from Cystic Fibrosis last Thursday. Three different children, all not even teenagers, lives were cut short because of this awful illness.

Thank you Josh Mogren (CF adult and friend) for your beautiful words and your perspective... "When anyone passes away from CF—especially children— it's a heartbreaking reminder of what this disease can do. When we hear about these losses we must take a moment to hold them in our hearts, send love and support to their families and know that these individuals NEVER GAVE UP. They gave it everything they had to live. The greatest respect we can show them is to work that much harder taking care of ourselves and try to experience everything we want to in our lives. Moms and Dads of CF kids: Hold your children tight for a minute and then let them loose to conquer the challenges of life. After all, we work this hard to LIVE. Best of all, every day we live...we prove the doubters wrong and tell CF to stick it where the sun don't shine. Peaceful thoughts to the children who left this world today. I'll work that much harder for you."

I am amazed at how self-less these families are, this CF Adult Josh Mogren is, CF patients are, my CF friends are, our CF Dr and his team are, and my own daughter, Elena is. 

Oh Elena...even when things are tough for her she is still thinking and talking of others.  Today her tummy hurts really bad thanks to who knows what CF is throwing her way today.  She lays quietly on the couch and asks about others.  She talked of the excitement of her Daddy getting the new job we prayed for.  She said she hoped PaPa's hip surgery went well next week.  She voiced concern about her cousin that was lost in utero last week.  She thought of the next playtime she would have with her cousin, Will.  Elena busied herself teaching her siblings something about Japanese culture to entertain them so they wouldn't fight over a toy they were unwilling to share at that moment.  While laying there uncomfortable and in pain, she never ONCE talked about her discomfort.  She filled her mind with the thoughts of others...just like so many others who live with CF.  I'm mighty proud to be her Mommy and man oh man do I love her!  Today, I'm squeezing her EXTRA and loving her EXTRA as CF once again reminds me that life is short and everyday with each of my children is a rare and special gift.

Today I ask you to pray for the CF families that lost their loved ones last week.  In fact, pray for all those who lost loved ones or got scary/sad news about loved ones last week, this year...or EVER since loss of a loved one is always in our hearts.  They need our prayers. Take this moment to be like our many CF heroes out there and be self-less...think of other's needs and concerns and pray for them.

Then, go squeeze your family and think of all the joy God has placed in your life because chances are...you are surrounded by a lot of wonderful gifts.

Follow up and then some...

So, Elena had her follow up appointment last week and her lung function was back up (not to her usual, but up enough to not worry further).  This was GREAT news!  Her congestion also cleared up.  Ya-hoo! 

Now, her congestion is back...boo.  As we have said in the past, we have an awesome doc and he has not wasted anytime to get her medicated right away.  So, we have started Elena on another round of antibiotics.  We hope to get this new bug kicked out quick.  She is staying SO active, I don't think she is giving any bugs a chance to stick around for too long! :) 

Daily Joel and I praise God for her good health, for her wonderful siblings, and for each other.  Though rough times and patches are a plenty...the blessing are even more abundant.