Race Weekend has begun!

Elena had the great honor of introducing a wonderful guest speaker at our 65ROSES pre-race dinner last night.  Colleen Caul ran to raise money for Cystic Fibrosis in St. Louis and LOTS of other places!!  She is running the marathon on our team this Sunday!  She and Elena became fast friends.

Elena read a lot of information about Colleen to prepare for her introduction.  After she read everything, I asked Elena why she thought she was asked to introduce Colleen.  Her reply, "Because we are so similar!"

We are thrilled to have another friend who is also CF Superhero!

Here is Elena's intro for Colleen:

Hi!  I’m Elena Goodrow.  You may recognize me from my latest CF Superhero video on YouTube.  I’ve been asked to introduce our special guest speaker Colleen Caul.  I think it is because we are so similar in many ways!  For example:

We both come from big families!  At least I feel like having 3 other siblings is big.

We both have a baby sister.  Colleen’s sister sounds sweet, my sister is really cute but also really annoying sometimes.  I still love her though.

We are both affected by Cystic Fibrosis.  I have it.  Colleen’s sister has it.

We both love acting.  Colleen IS an actress and I want to be famous someday.

We are both smart.  Colleen has a college degree and I am REALLY good at math even though I don’t enjoy it very much.

We both run races to raise money for Cystic Fibrosis.

We are both ambitious.  I started Rosebuds, a kids helping kids with CF Fundraiser that has raised over $50,000 since I started it in 2010.  Colleen started Run for Roses, a one woman 65 day journey and she raised over $40,000 for CF.

I’m happy to introduce to you a fellow CF Superhero, Colleen Caul.

Super Hero not feeling super

Yesterday was Elena's regular CF appt.  We were happy with the timing because she has been having some changes in her health. 

One, she has not been eating that great and would happily skip a meal or two (and sometimes does) every day.  As a result, she has not gained any weight. She is just NOT hungry. 

Two, she is struggling with tummy pain.  Twice in two weeks (exactly one week apart) she had pain so severe that she could hardly move and all she did was moan.  Her Dr. said it could be one of three things, however he ruled out two on the spot.  The last man standing is the telescoping of the intestines.  This is when one section of the intestines slides over into itself.  It is very painful.  Dr. McKean felt like if she had this, the telescoping would not undo itself and therefore she would be in pain all the time.  She is more susceptible to this b/c of her numerous intestinal surgeries as a baby.  At this time, we are just to wait and see how it goes...does pain go away or does it get worse.  No x-ray can show you this unless you happen to get her in for an x-ray while the pain is occurring.  So for now, we wait.  Atleast some things have been ruled out.

Three, Elena's lung function is down.  Her lungs sound clear, her nasal passages are slightly swollen, but otherwise everything sounds good.  In February she was started on a super antibiotic to help clear up a nasty congestion issue that apparently is still lingering in her lungs.  We can't hear it and she is feeling "ok", so it is just one of those deep in the lungs issues that we are working hard to get out.  We have started her on a different antibiotic and she will be on a steroid five days before her follow up appointment in two weeks on March 27th.

Despite the lung function being down and not having any real answers about her tummy pain, we had a great time seeing Dr. McKean.  Elena truly loves her doctor.  She made him a card that read, "Dear Dr. McKean, Thank you for being the best doctor ever (at least when you are not giving me shots)."  When we entered his office, we had no idea how much he would need it!  It had been a very difficult day for him (yes, Doctors have bad days).  Elena's card made him smile and laugh.  God's timing....good stuff...even when we can't see it right away. 

Rosebuds 2013

We are surrounded by Superheroes and sometimes don't even realize it!  Did you know that I have a house full of superheroes?  It's true!  Today, my family and friends (and many new friends) raised money for and awareness of Cystic Fibrosis all while having fun!!

In 2010 Elena had the idea to create the Rosebuds team so she could have a kids version of mommy's CF fundraiser running team (65ROSES).  Since then, these little Superheroes have raised $50,000!!!

AMAZING and very very SUPER!!!

I was so proud of Elena today.  She stood up and thanked everyone for coming out while also explaining how she had no idea that her little idea would become so successful.  Public speaking (and just talking a lot in general) is her thing!

Elena and Ethan did great with the race and obstacles.  Emily, Everett, Nana, and Papa enjoyed watching us run back and forth. 

Here are some pictures of the Amazing Race that our Rosebuds participated in today.

 

 The team!

 Our littlest Rosebud.

 Sidewalk chalk makes everyone happy!

 Sweet Emily!

 Bobby making sure everyone knows which direction to go.

 Elena does the same!

 Super Girls!

 The kids working on a card to thank our toy/prize sponsor.

 Momma with her amazing CF Super Girl!

 Super Beckmans help replenish our super powers often. :)  We love great friends.

 Ready set....go!

 We were off!

 Over the river (actually through it) and through the woods to obstacle number 1.

 

 This was by far the favored obstacle by all the kids.

 Parents...maybe not as much.

 Mummy...

 Show me the mummy!

 There is the mummy!

 Blind fold plus directions of left and right ... funny stuff!

 Especially since left and right is still something we are working on with Ethan.

 We figured it out eventually. :)

 Last obstacle was this silly basket to basket race...kids giggling and parents grumbling about their backs...funny stuff.

 Bobby and Elena with their finishers ribbon!

Thanks Nana and Papa.

 The pretty girls:)

We did it!  Another successful Rosebuds race.  Thank you to all the friends, new friends, and family that supported us, got us to this day, and helped us make this day a success!! 

Rainy day blues...with UPDATE

Usually, we love rainy days. It means a chance to lay on the couch in our jammies and do homeschool while snuggling. Today however, we are still in our jammies laying on the couch but this time nursing a fever.

Elena had a fever yesterday afternoon along with a headache and runny nose. She seemed fine all day and then all of a sudden she was crying and not feeling very well. The fever would not go down overnight with the help of medicine. Today we called the CF doctor. He suggested a stronger medicine to help get the fever down. It seems we have broken the fever and now we are enjoying lunch with our siblings while watching Phineas and Ferb on the iPad.

The doctor thinks we may be dealing with a virus. We are keeping a close eye on her to make sure it doesn't turn into something else. We know all too well how quickly things can change for Elena.

Sometimes I feel silly posting stuff like this. It may not seem or sound like a big deal. And usually it is not. However we have had so many times when it changes very quickly and turns into more serious stuff. Many of those times I post nothing. Then I wish I had the prayer support of my family and friends. Learning from my mistakes I am posting now :-)

Pray it's just a virus that passes quickly. As of right now it sure seems that way. Thank goodness!


and the UPDATE as of today 2/23/2013...its a virus.  Ethan got the fever and sickies within 12 hours of Elena.  Elena's fever is gone and everyone seems to be doing so much better!  Prayer for Elena has always been so amazing!  Answered prayers allowed us to bring Elena home with us from the hospital almost nine years ago!  Prayers (unanswered and answered) rock our little Goodrow Gang world!

CF Superhero!

Check out Elena's video she produced to help recruit runners and donations for CF fundraising teams 65Roses and rosebuds!
http://youtu.be/QcOrI_l3TM8

You can make donations using Elena's link here http://www.razoo.com/story/Goodrow-Gang

or on our family blog at www.goodrowgang.blogspot.com

Don't forget to click "like" cause you are REALLY gonna like it!!

Why we participate.

Before Christmas, Elena and I learned about a little boy her age that lived in Kentucky.  He was trying to break a Guinness World record and receive more than 30,000 Christmas cards.  He reached his goal and surpassed that with a whooping 700,000 cards!!!  Elena was happy to participate by mailing a card to Dalton and signing it with a note, "Hi Dalton, I'm Elena.  I want to break a Guinness World record one day, too!  I hope you do it!  P.S. I'm eight and have Cystic Fibrosis like you.   Praying for you!  Love, Elena".

We learned on Sunday that he went to Heaven on Saturday night.  Our prayers are with this young family.

When I learned the news, I talked to my kids about the loss like I do all others.  We talked about all the wonderful things Dalton accomplished.  We discussed how his body is perfect now and he can breathe easy.  We then ended the conversation like we always do, "How exciting it must be for him to be in Heaven with Jesus!"  The kids all nod in agreement with giant smiles on their faces, we say a prayer for the family and continue our day.  This time however, Elena asked, "How old was Dalton, mom?"  I froze up and Joel answered for me, "We don't remember?" 

We are not ready for her little mind to have to contemplate her own life expectancy.  She has been to enough CF events and heard about too many losses in our CF community so she knows people can be taken from this world what seems like too soon because of Cystic Fibrosis.  However, we don't think she has made this connection to herself...yet.  We know the day is coming that we will discuss this with her.  She is too analytical in her thoughts (MUCH like her Daddy) to let this conversation slip by without more thought. 

We attend Cystic Fibrosis fundraisers, we join CF committees, we spend time with CF families, we create CF fundraisers (actually Elena did that!), and we immerse ourselves in helping toward the cause of raising money to help CF patients and their families.  We do this because it helps them, it helps Elena, but it also helps Joel and I feel like we are doing something!  We don't want to feel like we are allowing CF to take over our family.  Volunteering, fundraising, and participating helps us while helping others.

Please consider donating towards the cause by visiting HERE.

 

Got Kids or nieces/ nephews or grandchildren that are Pre-K and up (yup, no upper age limit..so come join us Grandparents! ) Join Elena's CF fundraising creation, ROSEBUDS on March 9th 2013 by visiting HERE and select Rosebuds. This year we are trying something new! It is a race like the TV Amazing Race!   I know parents, Aunts, Uncles, Grandparents...EVERYONE can participate and EVERYONE will have fun! Our family will be there and we would LOVE to have you join us!  Our webiste will describe the details of the event.  (as of this morning they are still updated the site so be patient...or send me an e-mail and I will send you the flyer in PDF.) We can't WAIT to try a fun twist on a race!

 

Run, walk, or volunteer with our team 65ROSES this March 17th, 2013!  Join our team by clicking HERE.  I'll be running and Joel will be at the finish line with all the kids! I'd love to have a group of running partners and I know my kids would enjoy some company at the finish!

 

There are so many ways to join our fight! 

Won't you join us in the fight against CF for Elena and her friends?

 

Fundraising for CF

http://www.razoo.com/story/Goodrow-Gang

Our family works together to fundraise for big sister, Elena.

Every year it brings our family much joy to run for a cause; one that is VERY important to us. We run to give more tomorrows for our oldest child Elena. We run to help her and her other friends with CF breathe easier. We run so we can pick on Elena's future boyfriends. We run so that we can see Elena graduate college. We run so Elena can be there for her younger siblings as they need big sister's help in life. We run so we can have a tomorrow with our daughter...so those we know with CF have tomorrows...because this is something we CAN do!