Saturday, March 16, 2013

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.

Thursday, March 14, 2013

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. 

Saturday, March 9, 2013

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.
 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 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!! 

Want to see what my family is up to?