Christmas joy:)

We are happy to report after Elena's follow-up appointment with Dr. McKean that we are staying home for the holidays; no hospital visits for us!! Her lung function was 97%! We are also happy that she is recovering so well. So much to be thankful for this Christmas.

She does not need to go back to see Dr. McKean until after her birthday in March. We are rejoicing a lot in our house tonight with a lot of giddy giggling going on.

Update on the two extreme E's

Here is the update:

Everett (the youngest E)

After meeting with Dr. Miller today, Everett was diagnosed with bronchitis and a viral infection. He is on an antibiotic for the infection. He is doing breathing treatments 3x a day (with his big sister) and it was suggested that he does chest pt. Ev is also taking Mucinex to help clear out all the guck. His iron was low, so we are back to giving him iron supplements once a day. This will be a regular thing now. 

 

Elena (the eldest E)

Dr. McKean called me tonight and said that Elena's throat culture came back with "stenotrophomonas". Learn about it here: http://en.wikipedia.org/wiki/Stenotrophomonas_maltophilia

He prescribed her to a new antibiotic since the one she is currently on should not help with what she has. McKean was surprised to learn that she was doing better on the "wrong" antibiotic. He wants to wait and see her a week from tomorrow as to give the new antibiotic time to heal her. So, we will not be going in on Weds for an appointment. Meanwhile, she has not had anymore runny nose or cough episodes.

We will let you know how they do!

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. 

Cystic Fibrosis is life shortening …now here is the good news!

Cystic Fibrosis is not a thought of mine every minute of every day, just every time I look in Elena’s eyes.

So, every other minute.  ;)

I don’t let Cystic Fibrosis bring me down, bum me out, make me sad, cause me to ponder how short my child’s life will actually be as a result of it, or bring tears to my eyes….then again sometimes I do.  Thank goodness my family has a strong faith!  Thank goodness God is pretty rockin'!

I allow my “cry days” over Elena’s fate.  They have decreased as each of her birthdays pass by.  However, now I am approaching the time in Elena’s life where she is asking questions and beginning to REALLY understand what having Cystic Fibrosis could mean for her.  I can prepare myself for my “cry days” and now I am working on preparing answers for her questions about her own mortality.  Answers like: We are all one day closer to dying.  We don’t know when any of us will die; could be today, tomorrow or 80 years from now! Dying is not something to be scared of.  Heaven is pretty awesome! You are so healthy because of all the great medicines and the wonderful medical care you receive; you don’t need to worry about it! Yet, does she? 

YES, she DOES need to worry.  Not really worry about it as much as be diligent DAILY of her medicines, exercise needs, and caloric intake.  Even IF she keeps up with the extra care her body needs, she could still be defeated by CF.  It happens everyday; we hear of young kids, teens, adults with CF struggling and sometimes loosing the battle. 

Earlier this week, Elena and I watched a new movie preview about twin sisters with Cystic Fibrosis which spurred on this conversation between Elena and I :

Elena: Mom, what is a transplant?

Me: It is when someone who has  a sick organ in their body gets a new replacement organ from someone else.

Elena: So, why would someone with CF need a lung transplant?

Me: You know why we do your breathing treatments and vest therapy?

Elena: Yes, to shake up the extra mucous in my lungs and get out the germs that are hiding in there.

Me: Right!  Well, some people with CF can’t get the germs out of their lungs with treatments and so their lungs start to die and quit working.  To continue to stay alive they need ALL their organs to work, so they need a new pair of lungs.  When someone their size doesn’t need their lungs anymore, they will gift their lungs to the sick person.

Elena: WOW!  That is really nice!

Me: Yes, it is an excellent gift of life!

Elena: My lungs are pretty strong, right?

Me: Yes, they are very strong.

Elena: Ok, Mommy.

This was an easy question, but I know our future holds lots more conversations that just don’t seem like an 8 year old should have to ponder. 

To see the preview and/or order the movie visit: http://www.thepoweroftwomovie.com

Now HERE is the good news!  YOU can help. 

Join Team 65ROSES or have your kids join Rosebuds....RUN with us!  Volunteer with us!  Walk with us!  Many of my runner friends have shied away from joining the team due to the high fund raising expectations.  I TOTALLY understand!  I’m not one to enjoy asking for money and donations.  However, it is easier than I thought.  Especially when I remember WHY I ask and for WHOM I ask.  This year, we are going to do family fundraising so you, your spouse, and your children can work together to fundraise. You can ALL run (adults on team 65ROSES and kids on Rosebuds ) but all your fundraised dollars will go towards your family goal.  You will find, as I have, that it is so much easier to have your children asking for money!! J Still not convinced?  You don’t HAVE to raise money to be on our team.  It is appreciated and excepted with giant smiles, BUT SO is the benefit of having you wear our team shirts out on the course, helping to spread the word, helping to educate more people of one of the most common genetic diseases out there. 

Every dollar donated goes towards helping CF families either monetarily or by giving towards research that is actively searching for a cure for CF. Joel and I truly believe that the new medicines Elena has been exposed to since her birth have kept her strong and healthy. Her lungs have been spared permanent lung damage because of new medicines that were a product of successful research from your donated dollars.  

Consider joining our team 65ROSES for the 2013 Georgia Marathon & Half in March by visiting: http://www.active.com/running/atlanta-ga/publix-georgia-marathon-and-half-marathon-2013
When registering adults for the Half or Full marathon, select "Team 65ROSES - Miles for Cystic Fibrosis" when you are asked to "join a team."
When registering kids for the Fun Run, select "Rosebuds- Miles for Cystic Fibrosis" when you are asked to "join a team."

Is this too long to wait?  Check out our website for upcoming races like the Big Peach race on Labor Day that is run by and totally benefits Team 65ROSES! www.milesforcysticfibrosis.org

Elena and her family THANK YOU!  Elena and I are hoping to break records this year with the number of runners on her Rosebuds team!  I'm hoping to be surrounded by a sea of our team 65ROSES blue shirts when running the 1/2 Marathon!  Help us break records and sign up soon!

Thanks so very very much!  Our friends continue to humble us by all they do!


and finally, Elena's follow up appointment is June 27th.  At that time, we will learn how her lungs are doing after our barrage of meds we've been doing at home.  As my dear friend and fellow CF mom says, "Take THAT CF!"

Clinic Visit: No hospital for now!! Wa-hoo!

Aunt Jenn helps watch all the E's during Elena's CF appointment.  They were all such good kids!

I'm always saying that the "common cold" can hospitalize Elena, and a couple of times it has. Today was almost another one of those times, but we are very fortunate that her CF doctor is letting us try to treat her at home first as we try and attack this virus she has and the effects it has taken on her lungs.

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Elena went in for her regularly scheduled CF visit today with Dr. McKean. We knew she was struggling with a virus she was exposed to, however we were unsure of the effects it was having on her lungs. Today we learned that she was wheezing and her lung function dropped 40% from her previous visit. This is NEVER a good thing. The doctor felt that going to the hospital was best, but wanted to try a treatment first.   After a breathing treatment in the office, her function came up 15%. Since she was responding to treatment, we have been given a chance to help her at home. 

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We have a follow up appointment in 2 weeks assuming Elena continues to do well with her treatments; otherwise we will go in sooner.  Considering Elena's past response to treatments; I know she will do well! For every day of her life we are so very grateful! God is good!

Thumbs up for getting to be treated at home instead of the hospital!

Stop Bugging Me CF

Thanks to another CF mom for this idea!  While doing our neighborhood garage sale, Elena did her own booth to help Fundraise for her Rosebuds team that raises money for Cystic Fibrosis research and CF families in need.  It made me teary to listen to her explain what she was doing and why.  She is SOOO grown up.  She even enlisted her little sister Emily to help for awhile. 

So proud of our big girl taking charge of her disease and not letting it define who she is.

Silly nilly

So thankful for Elena's good health this summer. She is doing great on pulmozyme. She eats well and is looking a little thin, but makes up for it in height as she is having a growth spurt (growing pain in her legs most nights). Her energy is thru the roof! She is constantly playing piano, making up dance routines, creating crafty crafts for herself and her siblings, doing science experiments, swimming, running, biking, playing outside as much as she can between the heat and the rain, and just being a fun and spirited 8 year old.

She is growing up at lightening speed before my very eyes! She is NOT listening to her daddy at all when he says, "Hey, cut that out and stop growing! You just can't be as tall as your mommy just yet!"

We start homeschool back up in a couple weeks. This year Elena is excited to share the school room with her brother, Ethan, who is starting preschool!

Even though life with cystic fibrosis can make us a little coo-coo for cocoa puffs, we are still filled with lots of joy... And a lot of silliness too.

CF Girl!

While in Disney World last month collecting character signatures, Elena decided that she should perfect her own.  This is what she came up with:

That's about right after this weekend!

 Visit our blog for details and videos of our famous little girl!

www.goodrowgang.blogspot.com

Rockstar Awesomeness continues

Dr. McKean is really a truly fabulous and amazing Man and Doctor. Besides the prayers and obvious hard work it takes from ALL of us to keep her healthy, I truly feel that McKean's aggressive treatments have kept her strong and it REALLY shows when she does her PFT's.

Today at her follow up visit we watched as her lung function continues to be super. Then we listened as her lungs sounded clear. Then we looked as her nasal polyp showed signs of shrinking with the affects of the meds McKean prescribed last month. AMAZING!

Last night Joel and I were talking about Elena's health. We wondered if her good health was a fluke and if other kids with CF her age were doing as well.

We fear her future for her. Her health is not predictable and can change in an instant. This can be frightening to think about, so we just DON'T think about it often. However, when we do it is a sad discusion.

I meantioned my thoughts to McKean. His answer, "TOBY (a newer med out since Elena's birth) has CHANGED CF." Yes, yes it has.

More new meds continue to change the outlook for Elena and her other friends with CF. The dollars that go into research REALLY are making a difference. I see it everyday when I look at Elena's growing body, when I place my head against her back to listen to her CLEAR lungs, when I watch her run and play with her siblings, when I see her catch a cold and throw it off quicker than the rest of us, when I begin to fear for her and I have her hug me and tell me what a great mom I am.

God is so good. He takes the bad and makes it good. Elena may have CF but the amazing stuff this child does is going to continue to rock my socks off...I just know it!

Her Rosebuds race is this weekend. I'm so very proud of her for having the idea of Rosebuds and "running" with it! It has been a success every year since it's creation three years ago. I can't wait to see what the dollar's raised is this year! I'll keep you posted.

There is still time to donate toward her team, click HERE. Thank you to ALL who have been so supportive of Elena!

Polyp...hopefully not for long.

Elena's latest regular CF doctor visit showed that her lungs were rockstar awesome! However, Dr. McKean discovered a polyp in Elena's nose. This is pretty common for folks with CF. She is using two different nasal sprays to try and reduce the size of the polyp. She is fortunate that it is not bothering her breathing or causing any other problems at this time. We are hopeful that the meds will reduce the polyp and no further actions will need to be taken at this time. We should have answers in a couple weeks following her next visit to McKean. Meanwhile, the kid is 8!!!! When did THAT happen? As her birthday came and went this year I had such feelings of joy. I looked back at her baby book and smiled at the story of our first miracle; Elena. For those of you who are around me a lot, you know that March 3rd is usually surrounded by a few tears. This was the first year it was all smiles. I even watched her birth video without a tear! Time heals, God heals, and the joy of my family is infectious!

Girl Scout Cookies!

Guess who's selling Girl Scout Cookies? ELENA! Let me know if you are interested in buying any from Elena. Elena is starting to take orders. She informed me tonight that she wants to sell 1,000 boxes so she can win an iPod Touch...then said she was ok if she sold ONLY 400 for the iPod shuffle. SOOOOOO, any box sold to get her toward her goals is MUCH needed and VERY MUCH appreciated. :)